NaomiR
09-10-2004, 12:10 AM
I want to begin by stating that this post will most likely be extremely long, so I want to begin by thanking everyone for reading and advising me. I also want to inform you that we have had many problems with insurance and so for the two years of my sons’ life he did not receive hardly any medical treatment. We began to seek after help from professionals when my son was a year old but we are paying for all of them out of our pockets. Now we are attempting to wait a year without treatment again so that they will not consider him pre-existing.
Let me start at the beginning. My third son was full term, 7lbs 13oz, normal pregnancy and delivery. He was growing, gaining weight, and meeting all of his developmental milestones right when he should. Then at six months of age, January 2003, we traveled to NC. While there we began to introduce infant cereal (oatmeal) to him. He started having problems with diarrhea. We weren't sure what to attribute this change in bowels to as he was teething and we were using filtered (Brita filter) tap water. He was breastfed until 1 yr of age. However, at home we would substitute with an occasional formula bottle, but we always used distilled water. The diarrhea continued for 13 days. Suddenly everything changed again. He began experiencing chronic constipation and that continued for many months. The ped. recommended many short-term fixes ranging from Milk of Magnesia to dark caro syrup.
According to the growth charts, he has gone from staying in the 50% range in height, weight, and head circumference, to falling completely off the charts. My oldest two were always in the 50-70%. At six months, when he began eating solids, he weighed 15 lbs. Within the next 6 months he gained 2 lbs 2 oz. In Dec. of 2003 he weighed 21 lbs and now, at 26 months, he weighs 25 lbs. He is approximately 32 inches tall.
Up until the month of January, he was rolling over, smiling, and laughing...life seemed wonderful. Then he also stopped reaching his developmental milestones. He is very low muscle toned also. He is far behind in each of the 7 domains. The percentages of delays vary between 25% to 80%. We were working with our local states early intervention and seeing some progress until we moved to a new state.
He started walking at 22 months of age. He has not said his first word yet. He does not comprehend most of what we are saying to him. He does not imitate any of our actions, he does not follow a command, nor will he respond when we ask him a question. Sometimes, his comprehension varies daily also. He seems to understand one day and wave bye-bye and yet the very next day he just stares into the air. Sometimes he knows who mommy is and other times he doesn't. Somedays he will look into our eyes and at other times he doesn't. It is like someone is playing with a light switch in his brain.
He has days when he is very fussy and unhappy but on other days he wears a smile on his face. He does not like strangers touching him unless he initiates the touch, he can't stand other children walking up to him and trying to play with him. I try to explain to others that it is similar to how a child relates to a big dog. They feel scared if the dog approaches them, but if they can approach a dog laying down then they are not afraid. As long as he is in control of the situation then he is okay. He hates the church nursury, we homeschool my older boys, but he is in a mother's day out program once a week and can't handle the stimulation there.
He does love his father and I. He loves to be held and cuddled. He also shows affection to his brothers.
We have been to a pediatric neurologist, geneticist, ophthalmologist, gastroenterologist, and an allergist.
The neurologist was completely puzzled by our son. He simply stated that there is not one condition that my son clearly fits. I asked him if he could simply, "be mentally slow." He said that typically you have children who are 'slow' but have normal growth. Children who are 'not slow' but are below the growth chart. But when you have children that are below the growth chart and mentally slow then it normally indicates a problem. He performed tests on his electrolytes and amino acids, but all came back normal.
The geneticist tested him for Fragile X and performed other tests on his chromosomes, but all came back normal.
The entire reason for our visit to the ophthalmologist was because two separate specialists suspected an inward turning of the left eye and the lack of tears. The appt. with the ophthalmologist was awful. We waited for three hours, and then they put drops in his eyes, waited 30 minutes for those to take effect, needed more drops, and waited another 30 minutes. Four hours after we arrived the doc. finally walks in the room. He looks at his eyes for approximately 5 minutes. Then the doc. told me in the next two months to take pictures of his face when we see the eye turning inwards. That is NOT easy to do with a baby. So, I then asked him about the tears. He said verbatim, "It is highly unusual for children not to produce tears, but there is nothing we can do to help that."
The gastroenterologist tested him for Celiac Disease, but the test came back inconclusive because his immunoglobulin was extremely low. They repeated his lab work and we were then referred to an allergist/immunologist.
Our allergist, the best physician we have seen yet, explained that the first test the gastro ran for Celiac's was only on the IgA. When the results showed a VERY (basically non-existent) low level, he ordered a test on the other immunoglobulins (except E). This indicated all of them were low. So, that is how we ended up at the allergist/immunologist.
He did basic skin testing for major food allergies, but all showed negative!!!! This is good news because my oldest son has severe food allergies and asthma.
He was very concerned about his immune system. He was happy that he is so far behind on his immunizations (due to insurance problems). He basically demanded that we NOT give him any more immunizations/flu vaccine until we find out more about his immune system. He also told us to stop giving him milk. He thinks this will only aggravate his constipation. When they re-checked his immunoglobulins he was pleased to tell me that his levels are increasing.
We have started him on a gluten free diet because several of his symtoms are similar to Celiacs'. Within 4 days his constipation has been gone!!! He has put on some weight and grown 1/2 inch.
So…my main question…after all of this information above is does my child sound like he may have a form of autism/PDD? I know you are not medical doctors. I have an appt. with a new pediatrician next week. This is a topic that was never discussed with any of the specialists so I am hoping that whatever medical needs may be related to this will be covered. I am at a loss of what to do for our next step. As I stated above we are trying to keep him out of the docs until he will be covered under our medical coverage. Any advice??
Let me start at the beginning. My third son was full term, 7lbs 13oz, normal pregnancy and delivery. He was growing, gaining weight, and meeting all of his developmental milestones right when he should. Then at six months of age, January 2003, we traveled to NC. While there we began to introduce infant cereal (oatmeal) to him. He started having problems with diarrhea. We weren't sure what to attribute this change in bowels to as he was teething and we were using filtered (Brita filter) tap water. He was breastfed until 1 yr of age. However, at home we would substitute with an occasional formula bottle, but we always used distilled water. The diarrhea continued for 13 days. Suddenly everything changed again. He began experiencing chronic constipation and that continued for many months. The ped. recommended many short-term fixes ranging from Milk of Magnesia to dark caro syrup.
According to the growth charts, he has gone from staying in the 50% range in height, weight, and head circumference, to falling completely off the charts. My oldest two were always in the 50-70%. At six months, when he began eating solids, he weighed 15 lbs. Within the next 6 months he gained 2 lbs 2 oz. In Dec. of 2003 he weighed 21 lbs and now, at 26 months, he weighs 25 lbs. He is approximately 32 inches tall.
Up until the month of January, he was rolling over, smiling, and laughing...life seemed wonderful. Then he also stopped reaching his developmental milestones. He is very low muscle toned also. He is far behind in each of the 7 domains. The percentages of delays vary between 25% to 80%. We were working with our local states early intervention and seeing some progress until we moved to a new state.
He started walking at 22 months of age. He has not said his first word yet. He does not comprehend most of what we are saying to him. He does not imitate any of our actions, he does not follow a command, nor will he respond when we ask him a question. Sometimes, his comprehension varies daily also. He seems to understand one day and wave bye-bye and yet the very next day he just stares into the air. Sometimes he knows who mommy is and other times he doesn't. Somedays he will look into our eyes and at other times he doesn't. It is like someone is playing with a light switch in his brain.
He has days when he is very fussy and unhappy but on other days he wears a smile on his face. He does not like strangers touching him unless he initiates the touch, he can't stand other children walking up to him and trying to play with him. I try to explain to others that it is similar to how a child relates to a big dog. They feel scared if the dog approaches them, but if they can approach a dog laying down then they are not afraid. As long as he is in control of the situation then he is okay. He hates the church nursury, we homeschool my older boys, but he is in a mother's day out program once a week and can't handle the stimulation there.
He does love his father and I. He loves to be held and cuddled. He also shows affection to his brothers.
We have been to a pediatric neurologist, geneticist, ophthalmologist, gastroenterologist, and an allergist.
The neurologist was completely puzzled by our son. He simply stated that there is not one condition that my son clearly fits. I asked him if he could simply, "be mentally slow." He said that typically you have children who are 'slow' but have normal growth. Children who are 'not slow' but are below the growth chart. But when you have children that are below the growth chart and mentally slow then it normally indicates a problem. He performed tests on his electrolytes and amino acids, but all came back normal.
The geneticist tested him for Fragile X and performed other tests on his chromosomes, but all came back normal.
The entire reason for our visit to the ophthalmologist was because two separate specialists suspected an inward turning of the left eye and the lack of tears. The appt. with the ophthalmologist was awful. We waited for three hours, and then they put drops in his eyes, waited 30 minutes for those to take effect, needed more drops, and waited another 30 minutes. Four hours after we arrived the doc. finally walks in the room. He looks at his eyes for approximately 5 minutes. Then the doc. told me in the next two months to take pictures of his face when we see the eye turning inwards. That is NOT easy to do with a baby. So, I then asked him about the tears. He said verbatim, "It is highly unusual for children not to produce tears, but there is nothing we can do to help that."
The gastroenterologist tested him for Celiac Disease, but the test came back inconclusive because his immunoglobulin was extremely low. They repeated his lab work and we were then referred to an allergist/immunologist.
Our allergist, the best physician we have seen yet, explained that the first test the gastro ran for Celiac's was only on the IgA. When the results showed a VERY (basically non-existent) low level, he ordered a test on the other immunoglobulins (except E). This indicated all of them were low. So, that is how we ended up at the allergist/immunologist.
He did basic skin testing for major food allergies, but all showed negative!!!! This is good news because my oldest son has severe food allergies and asthma.
He was very concerned about his immune system. He was happy that he is so far behind on his immunizations (due to insurance problems). He basically demanded that we NOT give him any more immunizations/flu vaccine until we find out more about his immune system. He also told us to stop giving him milk. He thinks this will only aggravate his constipation. When they re-checked his immunoglobulins he was pleased to tell me that his levels are increasing.
We have started him on a gluten free diet because several of his symtoms are similar to Celiacs'. Within 4 days his constipation has been gone!!! He has put on some weight and grown 1/2 inch.
So…my main question…after all of this information above is does my child sound like he may have a form of autism/PDD? I know you are not medical doctors. I have an appt. with a new pediatrician next week. This is a topic that was never discussed with any of the specialists so I am hoping that whatever medical needs may be related to this will be covered. I am at a loss of what to do for our next step. As I stated above we are trying to keep him out of the docs until he will be covered under our medical coverage. Any advice??
Sponsor
BetsyAnn
09-10-2004, 02:16 AM
Hi Naomi, welcome to the board.
While reading your post I immediately thought your son should be put on a gluten free diet. I was relieved to read later in the post that he is. How long has he been gluten free? Have you noticed other improvements besides improved bowels?
What you described is consistent with pdd/autism.
You mentioned your son is off milk. Does this include all products that may have milk in them, even in trace amounts? If you are not already doing so I would recommend removing every molecule of milk including whey.
It sounded like your son's problems began when you introduced solids. If he has celiac's or the leaky gut syndrome that alot of autistic kids have he is probably malnurished and needs to be taking some vitamin and mineral supplements at least until his gut is healed.
I would do some research on DAN doctors to see if that is a route you would like to go. They work with the biomedical aspect of autism. This is not something that works for everyone but it has made a dramatic difference in my son. Most DAN doctors are not covered by insurance since alot of what they do is considered "fringe" medicine. If you research it you will find that everything is based on sound scientific research but there have not been sufficient double blind studies to constitute "scientific evidence." A very high percentage of the DAN doctors are parents or grandparents of an autistic spectrum child--this changes their perspective on what is appropriate treatment.
If you have not done so already find out what programs are available for autistic pre-school children in your state and get your son's name on every appropriate waiting list immediately. If it is determined that your son is not on the spectrum you can always remove his name later.
While reading your post I immediately thought your son should be put on a gluten free diet. I was relieved to read later in the post that he is. How long has he been gluten free? Have you noticed other improvements besides improved bowels?
What you described is consistent with pdd/autism.
You mentioned your son is off milk. Does this include all products that may have milk in them, even in trace amounts? If you are not already doing so I would recommend removing every molecule of milk including whey.
It sounded like your son's problems began when you introduced solids. If he has celiac's or the leaky gut syndrome that alot of autistic kids have he is probably malnurished and needs to be taking some vitamin and mineral supplements at least until his gut is healed.
I would do some research on DAN doctors to see if that is a route you would like to go. They work with the biomedical aspect of autism. This is not something that works for everyone but it has made a dramatic difference in my son. Most DAN doctors are not covered by insurance since alot of what they do is considered "fringe" medicine. If you research it you will find that everything is based on sound scientific research but there have not been sufficient double blind studies to constitute "scientific evidence." A very high percentage of the DAN doctors are parents or grandparents of an autistic spectrum child--this changes their perspective on what is appropriate treatment.
If you have not done so already find out what programs are available for autistic pre-school children in your state and get your son's name on every appropriate waiting list immediately. If it is determined that your son is not on the spectrum you can always remove his name later.
ang64063
09-10-2004, 10:57 AM
You said that he is on a gluten free diet, what about casein free?
Have you thought about increasing his vitamins and minerals and trying enzymes? My son who is PDD/NOS takes Magnesium, Evening Primrose, Fish Oils, Digestive Enzymes and B-6 in addition to his daily medicine of Adderall, Strattera, Cyproheptadine, Advil and Lexapro. He also takes a Epsom Salt (aka Detox Bath) 4-6 times a week for at least 20 minutes.
Since starting the digestive enzymes last week, we have seen some small improvments already. Last Saturday he went to his first ever classmate invited skate party ( a big thing right there). At the party he ate cupcakes and ice cream (two things that are not allowed on the GF/CF diet). When we came to pick him up, he was not hyper, like he would have been if he was not on the enzymes. That night after having his detox bath, he was in bed asleep within 15 minutes. Before starting the enzymes, if he has things like cookies or cake, he would have been up until after midnight.
And to answer your question, yes to me it does sound like your son has a form of Autism.
Does your local school district have a program called Parents As Teachers? If so, I would contact them immediately and see if you can get him in to do a screening. They cannot test for Autism, but they can test him for developmental delays and start working with him immediately. If it wasn't for that program, my son who is now 7, would not be in a regular classroom at school.
I hope that this has helped you.
Angela
Have you thought about increasing his vitamins and minerals and trying enzymes? My son who is PDD/NOS takes Magnesium, Evening Primrose, Fish Oils, Digestive Enzymes and B-6 in addition to his daily medicine of Adderall, Strattera, Cyproheptadine, Advil and Lexapro. He also takes a Epsom Salt (aka Detox Bath) 4-6 times a week for at least 20 minutes.
Since starting the digestive enzymes last week, we have seen some small improvments already. Last Saturday he went to his first ever classmate invited skate party ( a big thing right there). At the party he ate cupcakes and ice cream (two things that are not allowed on the GF/CF diet). When we came to pick him up, he was not hyper, like he would have been if he was not on the enzymes. That night after having his detox bath, he was in bed asleep within 15 minutes. Before starting the enzymes, if he has things like cookies or cake, he would have been up until after midnight.
And to answer your question, yes to me it does sound like your son has a form of Autism.
Does your local school district have a program called Parents As Teachers? If so, I would contact them immediately and see if you can get him in to do a screening. They cannot test for Autism, but they can test him for developmental delays and start working with him immediately. If it wasn't for that program, my son who is now 7, would not be in a regular classroom at school.
I hope that this has helped you.
Angela
rywilli25
09-10-2004, 11:10 AM
Hey angela I noticed in your post that your son is on cyproheptadine. My daughter who Is diagnosed ASD Also is on this. Just wondering what effects you have seen with this medication. My daughter immediately started pulling her tongue when put on this med. She still pulls her tongue and we still give her the med. It really helped with her appetite and allergies. Just wondering if it has an effect on the anxiety in your son.
rochelle
rochelle
ang64063
09-10-2004, 11:43 AM
The only thing that I have seen is that it's not doing what I thought it would do. Yes, it has increased his appetite, but he is not gaining any weight. But you are making me wonder if his anxiety problems might be related to that. He has a problem with picking at his skin and so the doctor said it may be anxiety related. He has been on Lexapro (for the anxiety) since April. It worked in the beginning, but he started picking again. They said that if by the next appointment if he is still picking, they are going to completely change his medication around. They suggested taking him off the Adderall and Strattera and puttinghim on Dexadrine. I think that since we are not getting the rersults that we had hoped for with the Cyproheptadine, they shoud take him off of that.
NaomiR
09-10-2004, 11:48 AM
Thank you for your responses. This is a very devastating thing to be facing. I feel like my heart just stopped beating. I have always been suspicious in my mind of autism...but no one, none of the specialists, have mentioned autism. However, I believe parents experiencing this in their own life, sometimes can recognize the symptoms more. I just can't tell my husband yet.
My son has been gluten free for two months now. Other than the big improvement with his bowels, we have only noticed some slight changes. I am not sure if I should relate it to the dietary changes or just him growing. He is now, finally, aware of object permanance (at least a little). When my husband walks upstairs, my son will walk over and look up. Then he will walk around some more, walk back to the stairs and look up again. This continues again and again. He does know how to climb stairs.
His diet is not casien free. He still eats cheese, yogurt, and occasionally pudding. He has an enormous appetite! What do you feed your children who are on a GF/CF diet? Please give me ideas!
We just moved to the Dallas, TX area and I am still trying to find out what is available to us. I have an assessment set up for 9/23 through the Early Intervention.
What does DAN stand for? Is it expensive to use their services? I know insurance doesn't cover them...but we are so financially strapped already from his first two years of life. Where did you find out which medicines/vitamins and how much to administer to your child. This is soooo new to me.
Who does the testing for Autism and what age must your child be?
Thank you again for your quick responses. I need to go and have a good cry now.
My son has been gluten free for two months now. Other than the big improvement with his bowels, we have only noticed some slight changes. I am not sure if I should relate it to the dietary changes or just him growing. He is now, finally, aware of object permanance (at least a little). When my husband walks upstairs, my son will walk over and look up. Then he will walk around some more, walk back to the stairs and look up again. This continues again and again. He does know how to climb stairs.
His diet is not casien free. He still eats cheese, yogurt, and occasionally pudding. He has an enormous appetite! What do you feed your children who are on a GF/CF diet? Please give me ideas!
We just moved to the Dallas, TX area and I am still trying to find out what is available to us. I have an assessment set up for 9/23 through the Early Intervention.
What does DAN stand for? Is it expensive to use their services? I know insurance doesn't cover them...but we are so financially strapped already from his first two years of life. Where did you find out which medicines/vitamins and how much to administer to your child. This is soooo new to me.
Who does the testing for Autism and what age must your child be?
Thank you again for your quick responses. I need to go and have a good cry now.
ang64063
09-10-2004, 12:00 PM
His diet is not casien free. He still eats cheese, yogurt, and occasionally pudding. He has an enormous appetite! What do you feed your children who are on a GF/CF diet? Please give me ideas!
My kids eat soy yogurt. They drink soy, vanilla, rice or almond based milk. They eat a GF/CF type of pudding. For the cheese they eat soy based cheese, they avoid potato chips unless they are plain potato or corn chips. They eat gf/cf cookies, they eat GF/CF cereal, I use semi sweet chocolate chips in their homemade chocolate chip cookies, etc. You basically have to avoid ingredients with the words milk or casein in it. Sometimes if you look at the bottom of the ingredients list, it will tell you if it has milk or wheat based products in it.
Can someone tell me if I can list proper names of products here? This way I can actually give you brand names to look for in your grocery or health food store.
Thanks!
Angela
Thank you for your responses. This is a very devastating thing to be facing. I feel like my heart just stopped beating. I have always been suspicious in my mind of autism...but no one, none of the specialists, have mentioned autism. However, I believe parents experiencing this in their own life, sometimes can recognize the symptoms more. I just can't tell my husband yet.
My son has been gluten free for two months now. Other than the big improvement with his bowels, we have only noticed some slight changes. I am not sure if I should relate it to the dietary changes or just him growing. He is now, finally, aware of object permanance (at least a little). When my husband walks upstairs, my son will walk over and look up. Then he will walk around some more, walk back to the stairs and look up again. This continues again and again. He does know how to climb stairs.
His diet is not casien free. He still eats cheese, yogurt, and occasionally pudding. He has an enormous appetite! What do you feed your children who are on a GF/CF diet? Please give me ideas!
We just moved to the Dallas, TX area and I am still trying to find out what is available to us. I have an assessment set up for 9/23 through the Early Intervention.
What does DAN stand for? Is it expensive to use their services? I know insurance doesn't cover them...but we are so financially strapped already from his first two years of life. Where did you find out which medicines/vitamins and how much to administer to your child. This is soooo new to me.
Who does the testing for Autism and what age must your child be?
Thank you again for your quick responses. I need to go and have a good cry now.
My kids eat soy yogurt. They drink soy, vanilla, rice or almond based milk. They eat a GF/CF type of pudding. For the cheese they eat soy based cheese, they avoid potato chips unless they are plain potato or corn chips. They eat gf/cf cookies, they eat GF/CF cereal, I use semi sweet chocolate chips in their homemade chocolate chip cookies, etc. You basically have to avoid ingredients with the words milk or casein in it. Sometimes if you look at the bottom of the ingredients list, it will tell you if it has milk or wheat based products in it.
Can someone tell me if I can list proper names of products here? This way I can actually give you brand names to look for in your grocery or health food store.
Thanks!
Angela
Thank you for your responses. This is a very devastating thing to be facing. I feel like my heart just stopped beating. I have always been suspicious in my mind of autism...but no one, none of the specialists, have mentioned autism. However, I believe parents experiencing this in their own life, sometimes can recognize the symptoms more. I just can't tell my husband yet.
My son has been gluten free for two months now. Other than the big improvement with his bowels, we have only noticed some slight changes. I am not sure if I should relate it to the dietary changes or just him growing. He is now, finally, aware of object permanance (at least a little). When my husband walks upstairs, my son will walk over and look up. Then he will walk around some more, walk back to the stairs and look up again. This continues again and again. He does know how to climb stairs.
His diet is not casien free. He still eats cheese, yogurt, and occasionally pudding. He has an enormous appetite! What do you feed your children who are on a GF/CF diet? Please give me ideas!
We just moved to the Dallas, TX area and I am still trying to find out what is available to us. I have an assessment set up for 9/23 through the Early Intervention.
What does DAN stand for? Is it expensive to use their services? I know insurance doesn't cover them...but we are so financially strapped already from his first two years of life. Where did you find out which medicines/vitamins and how much to administer to your child. This is soooo new to me.
Who does the testing for Autism and what age must your child be?
Thank you again for your quick responses. I need to go and have a good cry now.
ang64063
09-10-2004, 12:09 PM
Oh, I forgot to answer this for you. DAN stands for Defeat Autism Now. Yes they are expensive. The one doctor that I talked to here where I live said the initial assessment is like $300 and then each aditional visit is $150. I would strongly suggest you research the internet, call the local hospitals and the local school district to see what services you might be able to get.
[ removed ]
Angela
[ removed ]
Angela
NaomiR
09-10-2004, 01:04 PM
Can children with autism show affection?? Can they be alert of their surroundings and be interested in their surroundings at times??
I am aware of the ingredient listings on food products. My oldest son has a severe allergy to peanuts & tree nuts. Since going GF with my youngest it has been a little more difficult. Luckily, we have a Whole Foods store close by us.
He eats a potatoe w/ cheese and eggs w/ cheese quite often. He will definately miss those.
[ removed ]
I am aware of the ingredient listings on food products. My oldest son has a severe allergy to peanuts & tree nuts. Since going GF with my youngest it has been a little more difficult. Luckily, we have a Whole Foods store close by us.
He eats a potatoe w/ cheese and eggs w/ cheese quite often. He will definately miss those.
[ removed ]
redflowers
09-10-2004, 02:53 PM
I'm sorry to hear what you are going through. I know how difficult it is. To know something is wrong, but not exactly what and with no idea of how to fix it. I'm going to recommend some books for you:
Let me hear your voice by Catherine Maurice, the story of her son and daughter's recovery from autism using ABA therapy
Facing Autism by Lynn Hamilton, the story of recovery using ABA therapy and biomedical interventions
The Child with Special Needs by Stanley Greenspan, description and workbook for the Floor time approach
The Boy Who Loved Windows by Patricia Stacey, the story of her son's recovery from pre-autistic tendencies and severe muscle tone/motor issues
Unraveling the Mystery of Autism and PDD by Karyn Seroussi, a story about her son's recovery from autism using a gluten-free/casein-free diet and additional therapeutic approaches
Special Diets for Special Kids by Lisa Lewis, describes the gf/cf diet and provides recipes
Biological Treatments for Children with Autism and PDD by William Shaw
Children with Starving Brains by Jaquie McCandless
I know this is a lot to take on. When I read Let me hear your voice, I couldn't put it down and cried as I read it until 3:30 in the morning. Finally, I was reading about a child similar to my son and about a treatment that could bring him back to us. It was extremely motivating. Then I read Facing Autism and just knew that we had to get our son in an ABA program.
The difference has been amazing. We are getting him back. He's also on the gf/cf diet, but dairy (casein) brought the biggest changes in him. He used to have diarhhea all the time and do a lot of visual stimming with wheels and doors, etc. That's all gone now. We haven't noticed any real changes with the gluten, but have read that children who seem to have shown autistic symptoms as infants typically respond better to a dairy free diet and those whose developed regressed at a later age respond better to the removal of gluten.
Did you notice any specific changes after your son's vaccinations? Our son's most noticeable change was after his MMR at age 18 month when he lost all eye contact and language, both receptive and expressive. We had been raising concerns about his development since shortly after his first round of vaccinations but never put it all together. He's always been extremely cuddly with me, and I've been told that lack of affection is just one symptom and not indicative on its own of autism.
It sounds like you're on the right track. The earlier you get him intervention the better. You may want to consider looking in your area for ABA providers and get on a list now. The wait can be up to a year sometimes.
You also might want to check into relationship development intervention, a therapy that you could begin right away most likely. Look for two books by Dr. Steven Gutstein on this topic. I think the first book was actually "Relational Development Intervention."
I hope I'm not overwhelming you. I had a similar list to start out with and just took it one step at a time. First I got him on a list for ABA, then we eliminated dairy, next was gluten. I'm still reading these books as I find time. We're now starting to look into biomedical interventions. Just do what you can. Good luck.
Let me hear your voice by Catherine Maurice, the story of her son and daughter's recovery from autism using ABA therapy
Facing Autism by Lynn Hamilton, the story of recovery using ABA therapy and biomedical interventions
The Child with Special Needs by Stanley Greenspan, description and workbook for the Floor time approach
The Boy Who Loved Windows by Patricia Stacey, the story of her son's recovery from pre-autistic tendencies and severe muscle tone/motor issues
Unraveling the Mystery of Autism and PDD by Karyn Seroussi, a story about her son's recovery from autism using a gluten-free/casein-free diet and additional therapeutic approaches
Special Diets for Special Kids by Lisa Lewis, describes the gf/cf diet and provides recipes
Biological Treatments for Children with Autism and PDD by William Shaw
Children with Starving Brains by Jaquie McCandless
I know this is a lot to take on. When I read Let me hear your voice, I couldn't put it down and cried as I read it until 3:30 in the morning. Finally, I was reading about a child similar to my son and about a treatment that could bring him back to us. It was extremely motivating. Then I read Facing Autism and just knew that we had to get our son in an ABA program.
The difference has been amazing. We are getting him back. He's also on the gf/cf diet, but dairy (casein) brought the biggest changes in him. He used to have diarhhea all the time and do a lot of visual stimming with wheels and doors, etc. That's all gone now. We haven't noticed any real changes with the gluten, but have read that children who seem to have shown autistic symptoms as infants typically respond better to a dairy free diet and those whose developed regressed at a later age respond better to the removal of gluten.
Did you notice any specific changes after your son's vaccinations? Our son's most noticeable change was after his MMR at age 18 month when he lost all eye contact and language, both receptive and expressive. We had been raising concerns about his development since shortly after his first round of vaccinations but never put it all together. He's always been extremely cuddly with me, and I've been told that lack of affection is just one symptom and not indicative on its own of autism.
It sounds like you're on the right track. The earlier you get him intervention the better. You may want to consider looking in your area for ABA providers and get on a list now. The wait can be up to a year sometimes.
You also might want to check into relationship development intervention, a therapy that you could begin right away most likely. Look for two books by Dr. Steven Gutstein on this topic. I think the first book was actually "Relational Development Intervention."
I hope I'm not overwhelming you. I had a similar list to start out with and just took it one step at a time. First I got him on a list for ABA, then we eliminated dairy, next was gluten. I'm still reading these books as I find time. We're now starting to look into biomedical interventions. Just do what you can. Good luck.
SHReed
09-10-2004, 03:48 PM
Naomi,
You asked who can diagnose Autism...we first got our son in an Early Intervention program, but the only conclusion that they came to was that he had "developmental delays". I wasn't satisfied with that explanation so I took him to a Developmental Pediatrician at a Children's Hospital who was highly recommended by our general pediatrician. She had our son undergo evaluations by a psychologist, speech pathologist, and occupational therapist and based on their reports and her own observation we finally got a diagnosis. (It only took a year and a half to get the diagnosis!) So I would recommend starting with a Developmental Ped. if a DAN is not an option financially (is sure isn't for us) - the Dev. Ped. will be covered by insurance. Once you get the diagnosis you have more of an idea what direction to take concerning your son's treatment. Good luck and just take this one step at a time - it won't always seem this overwhelming.
You asked who can diagnose Autism...we first got our son in an Early Intervention program, but the only conclusion that they came to was that he had "developmental delays". I wasn't satisfied with that explanation so I took him to a Developmental Pediatrician at a Children's Hospital who was highly recommended by our general pediatrician. She had our son undergo evaluations by a psychologist, speech pathologist, and occupational therapist and based on their reports and her own observation we finally got a diagnosis. (It only took a year and a half to get the diagnosis!) So I would recommend starting with a Developmental Ped. if a DAN is not an option financially (is sure isn't for us) - the Dev. Ped. will be covered by insurance. Once you get the diagnosis you have more of an idea what direction to take concerning your son's treatment. Good luck and just take this one step at a time - it won't always seem this overwhelming.
ang64063
09-10-2004, 10:55 PM
I talked with one of the moderators and re read the rules and we are not allowed to post information such as websites unless they approve of it and we cannot post information such as our e-mail addresses so we cannot chat outside of the boards.
NaomiR
09-10-2004, 11:07 PM
[ removed ] I am just trying to get some info. as soon as possible. We have an appt. with an pediatrician next Wed. and I guess I need to talk with him about it.
NaomiR
09-10-2004, 11:19 PM
I searched for a Developmental Pediatrician in my area and none showed up on the internet. We live in a fairly affluent area, unfortunately we do not fit in here, so I am surprised by those results.
I did find a DAN doctor in our area. We can't afford this currently but if it turns out that my son is austic, then I will check into it later.
At what age are most children diagnosed with autism? Is my son too young, 26 months, to have an accurate diagnosis?
Do you suggest I start him on some of the homeopathic treatments/diet prior to diagnosis?
[ removed ]
Thanks again.
I did find a DAN doctor in our area. We can't afford this currently but if it turns out that my son is austic, then I will check into it later.
At what age are most children diagnosed with autism? Is my son too young, 26 months, to have an accurate diagnosis?
Do you suggest I start him on some of the homeopathic treatments/diet prior to diagnosis?
[ removed ]
Thanks again.
BetsyAnn
09-11-2004, 01:09 AM
In my opinion you should start your son on some biomedical interventions right away. A great deal of the DAN protocal can be implemented without the assistance of a doctor. The fact that your son began regressing when you introduced foods is a huge red flag. If it turns out that your son is not on the spectrum I believe he will still most likely benefit from the biomedical treatments.
You have already done the most difficult biomedical intervention in my opinion, implementing the gluten free diet. I would next implement a casein free diet. You should be able to tell within three weeks if it makes a difference. In my opinion you also try a soy elimination.
After you have had time to evaluate the effects of the diet. I would start introducing supplements. I would begin with omega-3-fish oil. Most everyone on a typical western diet is deficiant in omega-3. After seeing the difference that omega-3-oil made for my son and after alot of research I have put my entire family on this supplement. That is the one supplement I will not let anyone go without.
The next supplement I would give is cod liver oil. I would follow that with a good multivitamin. Next a multimineral.
Kirkmanlabs has alot of supplements formulated for kids on the autism spectrum. Even if you choice not to use their products their website is very helpful and you can get alot of information at their site. Their operators are also very helpful with dosing and other information.
If you are interested I would be willing to list the product names, amount taken, and price for the supplements my son is taking. I am sure others would be willing to do the same.
Redflowers gave you a great list of reading material. Your local library should have most of these books. Read as much as you can so you can make informed choices. Someone stated that it will not always be so overwhelming. This is very true.
Trust your instincts. Every child is different and every family is different. You will have to decide what treatments and interventions are right for your child. Please understand that if anyone seems particularly pushy with a particular treatment it is not meant to be offensive. But when you find something that makes a real difference for your child you just want to share it with the world and have everyone try it.
Also, to answer one of your questions, my son is very affectionate, snuggly, and social. However, the way he goes about it is different from my other children.
I must add that you should be prepared for your doctor to dismiss the biomedical treatment.
You have already done the most difficult biomedical intervention in my opinion, implementing the gluten free diet. I would next implement a casein free diet. You should be able to tell within three weeks if it makes a difference. In my opinion you also try a soy elimination.
After you have had time to evaluate the effects of the diet. I would start introducing supplements. I would begin with omega-3-fish oil. Most everyone on a typical western diet is deficiant in omega-3. After seeing the difference that omega-3-oil made for my son and after alot of research I have put my entire family on this supplement. That is the one supplement I will not let anyone go without.
The next supplement I would give is cod liver oil. I would follow that with a good multivitamin. Next a multimineral.
Kirkmanlabs has alot of supplements formulated for kids on the autism spectrum. Even if you choice not to use their products their website is very helpful and you can get alot of information at their site. Their operators are also very helpful with dosing and other information.
If you are interested I would be willing to list the product names, amount taken, and price for the supplements my son is taking. I am sure others would be willing to do the same.
Redflowers gave you a great list of reading material. Your local library should have most of these books. Read as much as you can so you can make informed choices. Someone stated that it will not always be so overwhelming. This is very true.
Trust your instincts. Every child is different and every family is different. You will have to decide what treatments and interventions are right for your child. Please understand that if anyone seems particularly pushy with a particular treatment it is not meant to be offensive. But when you find something that makes a real difference for your child you just want to share it with the world and have everyone try it.
Also, to answer one of your questions, my son is very affectionate, snuggly, and social. However, the way he goes about it is different from my other children.
I must add that you should be prepared for your doctor to dismiss the biomedical treatment.
ang64063
09-11-2004, 11:22 AM
I did a search of hospitals in your area and I found two hospitals in your area that would be a great place for you to start. One is The Children's Hospital and the other is Baylor University Hospital. Both of these hospitals I have heard nothing but good things about and would be well worth the try to see what services they could provide you and your child.
redflowers
09-11-2004, 10:03 PM
Naomi-
Before you meet with your pediatrician, you might want to do a search for first signs. You should be able to find a listing of the first signs of autism at varying ages along with recommendations for pediatricians on when referrals are warranted. All of the pediatricians in our HMO were trained to recognized these signs and now refer much sooner than when we were going through this with our son.
Good luck.
Before you meet with your pediatrician, you might want to do a search for first signs. You should be able to find a listing of the first signs of autism at varying ages along with recommendations for pediatricians on when referrals are warranted. All of the pediatricians in our HMO were trained to recognized these signs and now refer much sooner than when we were going through this with our son.
Good luck.
redflowers
09-11-2004, 10:20 PM
I just thought of something else. Before we were able to see a developmental pediatrician, we had to get an evaluation from a speech pathologist. We also had an OT evaluation. These evaluations which clearly demonstrated major delays helped convince our pediatrician (along with our threat to go to management if he didn't give our son a referral) to the developmental pediatrician for our HMO. However, the developmental pediatrician along with a child pyschologist was really looking for an evaluation by Early Intervention, which is your county based birth - 3 program. We just called the school district to find out how to reach them.
They also gave him a diagnosis and offered him school programming, a whopping 9 hours per week, which we turned down, opting instead for full-time ABA.
They also gave him a diagnosis and offered him school programming, a whopping 9 hours per week, which we turned down, opting instead for full-time ABA.
NaomiR
09-12-2004, 12:08 AM
redflowers,
I want to thank you for the book recommendations. I will definately start looking for them at the library tomorrow.
I plan to do more research tonight on the casien free diet tonight and will probably begin that this week.
My son is VERY far behind in his vaccinations because, when tested for Celiacs', they discovered he was not producing immunoglobulins. So hte immunologist did not want him to receive them until his immune system was higher.
My son's developement MAINLY changed after his six month mark. The docs said there is a good chance he was delayed prior to this but we just never noticed it.
We were involved in our local Early Intervention in our old state and they insisted that my son was not autistic. Maybe they had never worked with one on the higher end of the spectrum...or one that was affectionate.
The new Early Intervention program is coming to do an evaluation/assessment on 9/23. I am hoping this pedatricain will be knowledgable because he was recommended by the EI program.
ang64063,
The hospitals that you found on your search are actually located about 45-60 minutes away from where I live. I was just searching for experts located closer to me. With the closest relatives living 24 hours away and us having 2 older children who are homeschooled ... I don't anticipate these doctors appts.
BetsyAnn,
Thank you for providing so much detail. I would love, if you are allowed, to provide me with a list of product names and amount taken.
**Another question...since we have seen such improvement since he has been on the GF diet, would you re-introduce this into his diet until after his appt./assessment so they can see even more what he was like? I know this sounds crazy but a friend asked me this earlier today.
THANK YOU GUYS!! I FEEL BETTER KNOWING THAT THERE ARE PEOPLE WHO CAN HELP GUIDE ME THROUGH THIS.
I want to thank you for the book recommendations. I will definately start looking for them at the library tomorrow.
I plan to do more research tonight on the casien free diet tonight and will probably begin that this week.
My son is VERY far behind in his vaccinations because, when tested for Celiacs', they discovered he was not producing immunoglobulins. So hte immunologist did not want him to receive them until his immune system was higher.
My son's developement MAINLY changed after his six month mark. The docs said there is a good chance he was delayed prior to this but we just never noticed it.
We were involved in our local Early Intervention in our old state and they insisted that my son was not autistic. Maybe they had never worked with one on the higher end of the spectrum...or one that was affectionate.
The new Early Intervention program is coming to do an evaluation/assessment on 9/23. I am hoping this pedatricain will be knowledgable because he was recommended by the EI program.
ang64063,
The hospitals that you found on your search are actually located about 45-60 minutes away from where I live. I was just searching for experts located closer to me. With the closest relatives living 24 hours away and us having 2 older children who are homeschooled ... I don't anticipate these doctors appts.
BetsyAnn,
Thank you for providing so much detail. I would love, if you are allowed, to provide me with a list of product names and amount taken.
**Another question...since we have seen such improvement since he has been on the GF diet, would you re-introduce this into his diet until after his appt./assessment so they can see even more what he was like? I know this sounds crazy but a friend asked me this earlier today.
THANK YOU GUYS!! I FEEL BETTER KNOWING THAT THERE ARE PEOPLE WHO CAN HELP GUIDE ME THROUGH THIS.
HollyHobbie
09-12-2004, 01:43 AM
I've been there my son is autistic does not fit normal parameters been through up's downs with insurance. The attitude you get from doctors ect is iggnorance. autism pdd deffinatly sounds likley my experiance regular pediatricians are not equipped I recomend you get the book unravelling pdd autism by karen Sourossi I hope spelling is right. I stubbled across a md in richmond va who putt all the peices to gether for me After spending two years wasting time with nurologist ect who were consider the best in our area I got comments like you'll have to do something or you'll lose your mind after travelling an hour & a half to see one of the best developmental pediatricians in our area. The issurance I would not worry about take it on peice at a time my insurance does not cover my sons treatments not the ones that work anyway ( some do) Get the book it will help emmensiley
ang64063
09-12-2004, 10:58 AM
Do you suggest I start him on some of the homeopathic treatments/diet prior to diagnosis? It would not hurt to at least consider thinking about cutting out the dairy and wheat products or trying the Feingold Diet. I don't know much about the Feingold diet except that yellow fruits and vegetables are considered a trigger and must be avoided. I would suggest that you first read Lisa Lewis' book Special Diets For Special Kids. She also has a second version to that book, I have both and they have been a very valuable source of information about the diet. Not only are they and excellent source of information on the diet, but there are recipes in each of the books to help get you started. Also look at you local library and see what books they have on these diets.
I will warn you, the GFCF diet is not cheap, but if you use the recipes and make as much as you can, it can be cheaper than buying prepared foods.
I would also consider digestive enzymes, increasing the intake of magnesium, B-6, Fish Oils, Evening Primrose, calcium, vitamin C and Zinc. Don't do them all at once. Wait a few days in between so this way you can see if you notice any good or bad changes and certainly do not do this part of it when starting out any diet.
We bought our bottle of digestive enzymes at GNC. The reason I decided on those, instead of the ones that I can get through the internet, is the fact that I can acheive the same results for a fraction of the cost.
I will warn you, the GFCF diet is not cheap, but if you use the recipes and make as much as you can, it can be cheaper than buying prepared foods.
I would also consider digestive enzymes, increasing the intake of magnesium, B-6, Fish Oils, Evening Primrose, calcium, vitamin C and Zinc. Don't do them all at once. Wait a few days in between so this way you can see if you notice any good or bad changes and certainly do not do this part of it when starting out any diet.
We bought our bottle of digestive enzymes at GNC. The reason I decided on those, instead of the ones that I can get through the internet, is the fact that I can acheive the same results for a fraction of the cost.
ang64063
09-13-2004, 02:44 PM
The hospitals that you found on your search are actually located about 45-60 minutes away from where I live. I was just searching for experts located closer to me. With the closest relatives living 24 hours away and us having 2 older children who are homeschooled ... I don't anticipate these doctors appts.
Sometimes we have to drive a ways to get the services our kids need. I personally have to drive about 25 miles just to get some of the major services that my son needs.
I know of other parents that drive 12-15 hours just to have their child see a certain specialist.
I homeschool too (part time) and I have to anticipate changes in my kids' school routine and know that I can make up that time missed by adding time to the other days that I teach. I know that the change in the homeschool routine can be disruptive, but we can handle it. For example, this Friday my son has an appointment to see the Rhumotology doctor, I know that we will be spending a lot of time there on Friday and have anticipated not having much of homeschool time. So for like this week we will be spending pretty much all afternoons working on stuff (from 1:30-5PM) and what ever does not get done, I know that I can teach him over the weekend if I need to. I know that my kids won't like it, but...life is not always fair.
Sometimes we have to drive a ways to get the services our kids need. I personally have to drive about 25 miles just to get some of the major services that my son needs.
I know of other parents that drive 12-15 hours just to have their child see a certain specialist.
I homeschool too (part time) and I have to anticipate changes in my kids' school routine and know that I can make up that time missed by adding time to the other days that I teach. I know that the change in the homeschool routine can be disruptive, but we can handle it. For example, this Friday my son has an appointment to see the Rhumotology doctor, I know that we will be spending a lot of time there on Friday and have anticipated not having much of homeschool time. So for like this week we will be spending pretty much all afternoons working on stuff (from 1:30-5PM) and what ever does not get done, I know that I can teach him over the weekend if I need to. I know that my kids won't like it, but...life is not always fair.
NaomiR
09-13-2004, 11:49 PM
ang64063,
I am sorry if you were angry over that post. I didn't mean for it to come across in any sort of negative way. I was just hoping to find a doctor a little closer.
I am always changing our homeschool schedule for doctors, field trips, and illnesses. I don't have a problem doing that....it was meant that the older two kids would not be in school during that time and thus, I would have to drag them along. They are 8 & 6...not always the easiest to manage while I am trying to focus and concentrate on what the doctors are saying. If you have any suggestions then I am all ears.
I, honestly, will admit that I am intimidated by the size of the city that those hospitals are located in. Since we are new here I am unfamiliar with the major roads and feel completely LOST.
I am sorry again if I offended you.
I am sorry if you were angry over that post. I didn't mean for it to come across in any sort of negative way. I was just hoping to find a doctor a little closer.
I am always changing our homeschool schedule for doctors, field trips, and illnesses. I don't have a problem doing that....it was meant that the older two kids would not be in school during that time and thus, I would have to drag them along. They are 8 & 6...not always the easiest to manage while I am trying to focus and concentrate on what the doctors are saying. If you have any suggestions then I am all ears.
I, honestly, will admit that I am intimidated by the size of the city that those hospitals are located in. Since we are new here I am unfamiliar with the major roads and feel completely LOST.
I am sorry again if I offended you.
ang64063
09-14-2004, 10:24 AM
I understand not wanting the other kids to go with you, I have that problem too and being intimidated by large cities. I grew up in the suburbs of Kansas City and I still get scared everytime I have to drive into the big city. For us, yes I can get a lot of so-so services around my area, but usually I have to drive just as far, if not further, to get those services. I figure if I want to get better services than that, I have to drive (white knuckled and all) into the city.
As for trying to find ways of not having to take the other kids here are some suggestions you might look into.
Are there any homeschool groups in your area? If there are, maybe you can ask someone if they would mind letting your kids sit in on a certain day while you take your child to the doctor.
Do you belong to a church? If so, they might be able to help you out in finding an occasional sitter.
Are any of the parents in your neighborhood stay at home parents? They might be willing to watch your kids for a little extra money.
Do you have an grocery stores, laundry mats or other businesses in the area that have a community bulletin board? If so, maybe you can make up a couple of signs and post them.
Are there any daycare businesses that will take kids by the hour in your neighborhood?
What about those people who babysit in their home and advertise in the local papers? You can always call them and see if they can watch your kids if you are in a pinch and need a sitter for a couple of hours.
What about turning the event into a field trip or a special outing? After the doctor's appointment take them to see something that maybe they would not normally get to see or take them out to eat at a different McDonalds and let them play in the play area.
Lastly, if all else fails and you have to take the kids with you, come loaded with a goody/activity bag. Have that bag loaded with coloring and/or activity books, kids magazines, small handheld electronic games, paper,pencils, crayons, markers, homework, treats, drinks, etc.
As for trying to find ways of not having to take the other kids here are some suggestions you might look into.
Are there any homeschool groups in your area? If there are, maybe you can ask someone if they would mind letting your kids sit in on a certain day while you take your child to the doctor.
Do you belong to a church? If so, they might be able to help you out in finding an occasional sitter.
Are any of the parents in your neighborhood stay at home parents? They might be willing to watch your kids for a little extra money.
Do you have an grocery stores, laundry mats or other businesses in the area that have a community bulletin board? If so, maybe you can make up a couple of signs and post them.
Are there any daycare businesses that will take kids by the hour in your neighborhood?
What about those people who babysit in their home and advertise in the local papers? You can always call them and see if they can watch your kids if you are in a pinch and need a sitter for a couple of hours.
What about turning the event into a field trip or a special outing? After the doctor's appointment take them to see something that maybe they would not normally get to see or take them out to eat at a different McDonalds and let them play in the play area.
Lastly, if all else fails and you have to take the kids with you, come loaded with a goody/activity bag. Have that bag loaded with coloring and/or activity books, kids magazines, small handheld electronic games, paper,pencils, crayons, markers, homework, treats, drinks, etc.
ang64063
09-14-2004, 10:28 AM
Also, if you have to take the kids with you and feel that you are not going to be able to give them 100% of your attention, you could either bring along a tape recorder to record the entire conversation or someone with you who can sit in the waiting room with the kids while you talk to the doctor.
NaomiR
09-15-2004, 11:28 PM
ang64063,
Thank you for your wonderful suggestions on ways to help with doctors' appts. I printed them out and plan to implement them! I am very cautious with whom my children stay...but I like the idea aobut have the activity bag and the tape recorder!
We had our first appt. with a new pediatrician since changing several states away. Our local early intervention program recommded a pediatrician who, unfortunately, was not covered by our insurance. However, another one in his practice was covered so I set the appt. up with him. My son needed this physical to have a referral to the early intervention.
The appt. was AWFUL. He was sooo concerned about his immunizations records, long story, and that I was NOT wanting him to receive any more shots until I knew his immune system was back up to normal.
They handed me a checklist on a normal 2 yr olds development and asked me to fill it out. My son had not met ONE of those milestones. He glanced at it, crumpled the paper, and threw it in the trash.
He then stated that we would do further bloodwork to determine my son's immunoglobulin count, re-test for Celiac's (which he argued with me that a result of inconclusive really meant negative), and then wait 3 months on the shots, so we would know how his immune system was. Two minutes later he was back to discussing what shots he receive today.
I then mentioned the possibility of autism. He told me that 26 months was too early to diagnose autism. He doesn't think that my son looks like he would fit on the syndrome even though my son would not interact with him at all. He does smile a lot and will look at you at times, more like glance, but when you ask him something he goes into his own little world. As long as you just look at him and smile, he will look at you and smile.
I think this doctor as the mindset that if your child is not sitting in the corner, rocking back and forth, and screaming then he can't have autism.
Well, the assessment/evaluation through ECI is scheduled for 9/23. Should I mention the idea of autism to them??
Thank you for your wonderful suggestions on ways to help with doctors' appts. I printed them out and plan to implement them! I am very cautious with whom my children stay...but I like the idea aobut have the activity bag and the tape recorder!
We had our first appt. with a new pediatrician since changing several states away. Our local early intervention program recommded a pediatrician who, unfortunately, was not covered by our insurance. However, another one in his practice was covered so I set the appt. up with him. My son needed this physical to have a referral to the early intervention.
The appt. was AWFUL. He was sooo concerned about his immunizations records, long story, and that I was NOT wanting him to receive any more shots until I knew his immune system was back up to normal.
They handed me a checklist on a normal 2 yr olds development and asked me to fill it out. My son had not met ONE of those milestones. He glanced at it, crumpled the paper, and threw it in the trash.
He then stated that we would do further bloodwork to determine my son's immunoglobulin count, re-test for Celiac's (which he argued with me that a result of inconclusive really meant negative), and then wait 3 months on the shots, so we would know how his immune system was. Two minutes later he was back to discussing what shots he receive today.
I then mentioned the possibility of autism. He told me that 26 months was too early to diagnose autism. He doesn't think that my son looks like he would fit on the syndrome even though my son would not interact with him at all. He does smile a lot and will look at you at times, more like glance, but when you ask him something he goes into his own little world. As long as you just look at him and smile, he will look at you and smile.
I think this doctor as the mindset that if your child is not sitting in the corner, rocking back and forth, and screaming then he can't have autism.
Well, the assessment/evaluation through ECI is scheduled for 9/23. Should I mention the idea of autism to them??
ang64063
09-16-2004, 10:27 AM
I would mention Autism to them and see what they have to say.
NaomiR
09-28-2004, 04:28 PM
Well, our assessment was done by the early intervention team last week. We had 5 different specialist who came to our house and 'played' with my son.
They all agreed that he is VERY far behind in all of his domains. I haven't seen the formal report yet to know what percentages delayed he is at...I am nervous about this.
I mentioned Autism to them and they said to wait until he is 3. They didn't say that he DID or that he DIDN't have it or what their opinion was. They just mentioned that there are many children who are not speaking at 2 and by 2 1/2 - 3 yrs old they are speaking in complete sentences. (But my son has NO receiptive language either...or very little.) They discussed how hard it would be to get autism off their record if he actually didn't have it.
So, I am going to call the Developmental Pediatrician who is booked until next year (he will be close to 3) and a cancellation notice for 60 families. By that time he will have received therapy for awhile!
The all agreed that the doctor we saw for the referral was horrible! Escpecially with his tossing the checklist into the trash! Actually, my one friend sees his partner and she has heard lots of horrilbe things about the one we saw. When I told them that a doc. told us he wasn't low muscle tone, the PT & OT said, "When a kid sits with his back arched over and we can spread his legs into a complete split...he's low muscle toned."
Oh, well...now what? I am just reading lots and lots of books.
They all agreed that he is VERY far behind in all of his domains. I haven't seen the formal report yet to know what percentages delayed he is at...I am nervous about this.
I mentioned Autism to them and they said to wait until he is 3. They didn't say that he DID or that he DIDN't have it or what their opinion was. They just mentioned that there are many children who are not speaking at 2 and by 2 1/2 - 3 yrs old they are speaking in complete sentences. (But my son has NO receiptive language either...or very little.) They discussed how hard it would be to get autism off their record if he actually didn't have it.
So, I am going to call the Developmental Pediatrician who is booked until next year (he will be close to 3) and a cancellation notice for 60 families. By that time he will have received therapy for awhile!
The all agreed that the doctor we saw for the referral was horrible! Escpecially with his tossing the checklist into the trash! Actually, my one friend sees his partner and she has heard lots of horrilbe things about the one we saw. When I told them that a doc. told us he wasn't low muscle tone, the PT & OT said, "When a kid sits with his back arched over and we can spread his legs into a complete split...he's low muscle toned."
Oh, well...now what? I am just reading lots and lots of books.
ang64063
09-30-2004, 11:40 AM
Read, Research, Re-read, take notes, become knowledgable in all aspects of Autism, read about the diets, vitamins, minerals, enzymes, alternative treatments, [ removed ] etc. Do all of this until you are bleary eyed and think you know enough and then do more. Don't be afraid to try new things with him, you never know it might work for him.
I Love LJC
09-30-2004, 02:44 PM
Naomi what shots did your child receive prior to 6 months when he started to get digestive problems. . Does your child have any milk allergy issues.Your feedback will be much appreciated.Thankyou :)
I Love LJC
09-30-2004, 02:55 PM
Angela what digestive enzymes would you recommend.. Thanks :)
NaomiR
09-30-2004, 04:47 PM
I Love LJC,
Right now my life is going by in a blur of tears and confusion! I just brought my 6 yr old back from the ER for stitches and now I have a headache.
I am not 100% certain which shots my son received prior to 6 months. I know it was NOT the MMR. I think he received the HepB and maybe the one or two more. I need to contact our old ped. and ask them to fax medical records to US.
I know that he is not allergic to milk. He was food allergy tested in August of last year. My oldest son does have food allergies though. Whether he is experiencing "leaky gut" symptoms I am not sure. I may implement the CF diet soon since he is already GF.
Can you please tell us about your child?? Thanks!!
Right now my life is going by in a blur of tears and confusion! I just brought my 6 yr old back from the ER for stitches and now I have a headache.
I am not 100% certain which shots my son received prior to 6 months. I know it was NOT the MMR. I think he received the HepB and maybe the one or two more. I need to contact our old ped. and ask them to fax medical records to US.
I know that he is not allergic to milk. He was food allergy tested in August of last year. My oldest son does have food allergies though. Whether he is experiencing "leaky gut" symptoms I am not sure. I may implement the CF diet soon since he is already GF.
Can you please tell us about your child?? Thanks!!
ang64063
10-01-2004, 03:05 PM
Houston Nutraceuticals, Inc makes some products that I have heard of people trying and having good results with. I personally could not see paying $19.99 for 90 capsules when could go to GNC and pay 17.99 for 120 capsules. Since we started the kids on the GNC Multi Enzymes, my son's speech has improved. At first he would just talk enough to get him though the day and now he is wantingto carry on more of a conversation with you. He is wanting to play with the kids a lot more and has actually asked me several times if he can go out and play without having me around to watch him. I let him go out and play as long as he either has the 2 way radio with him or he stays right out in front where I can see him. Instead of having 2 plus hours of homework a night, he might have that in an entire to week.
My daughter on the other hand is not responding as we would have liked for her to, but it is definately noticable with her when she has something like ice cream and not take the enzymes (same with my son).
My daughter on the other hand is not responding as we would have liked for her to, but it is definately noticable with her when she has something like ice cream and not take the enzymes (same with my son).
I Love LJC
10-04-2004, 05:58 PM
Hi Naomi,Thanks for your input i appreciate it.Hope your son gets well soon.Sorry to hear he had to go to the ER for stitches.I have a 8 year old gal with ASD so im interested in Autism Research been researching for 5 years.Take Care
I Love LJC
10-04-2004, 06:24 PM
Hi Angela thankyou for the info on the enzymes.Glad they helped your kids.Whats got me scratching my head is the CFGF diet it seems its similar in ways to a diet of a person who has Cystic Fibrosis of the digestive system and i know enzymes for digestion are used interesting. Also vitamin A D E K.Take Care
ang64063
10-04-2004, 11:08 PM
Your welcome. With Autism you should be sure and add things like Evening Primrose, Fish Oil, Magnesium, B-6, calcium and a good multivitamin that is high in all of the Daily Values. I recently went on a search and looked at a lot of the multivitamins to see which one had the best %DV of calcium (something that people on a GFCF lack). I found only one that was over 10% per tablet and that was Equate's Complete Mutivitamin. They say it is similar to Centrum with Lycopene (which is one I didn't check). If anyone knows of one that has a calcium % higher than 16%, please let me know.
NaomiR
10-05-2004, 10:24 PM
We had our IFSP meeting today with the early intervention. We set our goals and I think overall things went well.
They are not going to provide physical/occupational therapy yet. I think it is needed but I must agree with them that the part of his motor skills that he needs to acquire require more cognitive thinking skills which he lacks right now. He is now 27 months old and isn't jumping, kicking a ball, riding on tricycle, ect.
His assessment report is really hard to look at! His lowest is the speech. The receptive is at 6 months and the expressive is at 9 months. The highest is gross motor at 18 months. All the others (cognitive, social, self help, and fine motor) are around 12 months.
Guess we have a long way to go, but hopefully, we will see improvement!
They are not going to provide physical/occupational therapy yet. I think it is needed but I must agree with them that the part of his motor skills that he needs to acquire require more cognitive thinking skills which he lacks right now. He is now 27 months old and isn't jumping, kicking a ball, riding on tricycle, ect.
His assessment report is really hard to look at! His lowest is the speech. The receptive is at 6 months and the expressive is at 9 months. The highest is gross motor at 18 months. All the others (cognitive, social, self help, and fine motor) are around 12 months.
Guess we have a long way to go, but hopefully, we will see improvement!
ang64063
10-07-2004, 01:11 PM
At least now you know where he is at developmentally and where you need to get him headed. I personally would have fought for the PTand OT and no you did not have to agree with their decision (that is a part of your rights). What I would do is work with him one on one yourself. Thsi way he can be at least trying these skills and maybe when you all do decide t o start these therapies with him, he will be more willing to accept the change and will know what to expect.
Good Luck!
Good Luck!
I Love LJC
10-08-2004, 06:34 PM
Going to start my girl on childrens DHA Nordic Naturals. Ask Louise. Has anyone tryed this .Thanks :)
atresize
10-13-2004, 10:37 AM
All symptoms are consistent with autism. Once diagnosed check state medicaid waiver official through local behavioral clinic. Ask to make a application. The program offers a community service worker, a case worker, therapy, and offers a parent the opportunity to provide re-hab for child in home and medicaid reimburses the parent for their services, transportation reimbursement and many other. First is medical evaluation and approval through medicaid waiver department. Then wait slot on list. But is worth the wait.Plus child will get medical card to cover medial expenses.
Also, according to family income call Social Security child could be eligible for SSI. Ask for application appointment. My child recieves both and is life-saving.
Also, according to family income call Social Security child could be eligible for SSI. Ask for application appointment. My child recieves both and is life-saving.