rywilli25
09-21-2004, 01:23 PM
Hey everyone i really need to vent. I am so upset right now. I am having one of those days where i just feel lost and dont know what to do. My ASD daughter is having a really bad day today. She has cried almost all day long. I am so lost as to what to do to help her. I feel like i have tried everything and nothing is working. I read all the wonderful stories of sucess and it gives me hope, but at the same time it makes me so upset. I would give anything to see some improvement. My baby girl is almost two years old and cant walk, crawl, or stand. She only babbles and spends most of her time crying. It is so unfair and i keep trying to help her but nothing is working. She is underweight and has very dark circles under her eyes. We have eliminated food allergies and have her on gf/cf diet. I kept a journal for six months and found no correlation of food or supplement intollerances. I have her on NO-fenol, calcium, nystatin, Grapefruit seed extract, digestive enzyems, periactin (for allergies), CO-Q10, Nu-thera, cod liver oil, and zinc. She recently had hair analysis done and it came back high in cadmium, aluminum, arsenic, antimony, tin, and off the charts in bismuth. Her mercury levels were the lowest of all, but her doctor thinks she is mercury toxic. Her minerals were all over the place. Zinc was very low. I have been supplementing with zinc for a while. NO doctor has ever been able to tell me what is wrong. She has had MRI, EEG, Chromasonal testing, Prader-Willi, Angelmans, REtt's, Fragile X, supplemental Neo-Gen, Organic Acid. EVerything normal. She has been diagnosed with an Autistic Spectrum Disorder but nothing specific. We are using PCA-Rx for detox right now. I have been using it for a little over a week with no behaivoral improvements. I feel so hopeless everything i try with cayla doesnt work. Our next step is to see a neuroligist which should have been done a long time ago but we have terrible insurance and no money to pay for it on our own. I really dont want her on any anti psychotic drugs but i am thinking we are not going to have a choice. I just keep thinking that the PCA-Rx will kick in and we will see some improvements. I long for her to reach out and want me. Just one kiss or hug. I hate autism. I hear people talk about how we have to accept it and I just feel like i cant. I dont want my daughter to be this way forever. I cant give up until I fix the problem. Sorry for the long post i just dont know what to do anymore. Another thing is she will only eat a couple of things. I took her off baby food because we couldnt afford it anymore. She will only eat pureed foods so I have to blend everything. Right now all i can get her to eat is peas. I know that sounds weird but she loves peas. She has yeast issues so no fruit is allowed. She will take the baby food chicken in her peas. I have tried everything, potatoes, green beans, carrots, sweet potatoes, squash. She just spits it out. SOOOOOOOOOOO Frustrating. I was thinking about taking her off the gluten diet and just keeping her off of the things she is allergic too. she has been gf for 4 months with no results. Thanks for letting me vent.
rochelle mother to Cayla 11/22/02
rochelle mother to Cayla 11/22/02
Sponsor
concerned grand
09-21-2004, 03:29 PM
Hi,
Sorry ! My granddaughter is 8. She has PDD/NOS.
She doesn't talk -only with sign language. Structure is very important to her. She is in school and doing good for her. Sounds like you are doing everything you can. IT WILL GET BETTER! My granddaughter didn't look at us or want you to hold her for the first few years. But now she gives you kisses and sits on your lap alot. For those who don't know --THIS IS A BIG IMPROVEMENT
Hang in there- if you need to talk -feel free !
Concerned Grand
Sorry ! My granddaughter is 8. She has PDD/NOS.
She doesn't talk -only with sign language. Structure is very important to her. She is in school and doing good for her. Sounds like you are doing everything you can. IT WILL GET BETTER! My granddaughter didn't look at us or want you to hold her for the first few years. But now she gives you kisses and sits on your lap alot. For those who don't know --THIS IS A BIG IMPROVEMENT
Hang in there- if you need to talk -feel free !
Concerned Grand
redflowers
09-21-2004, 04:50 PM
Rochelle-
I'm so sorry for what you're going through. My son was the same way for so long. It was horrible, and I thought I'd lose my mind. The real turning point for him came with ABA therapy. By teaching him how to attend and providing means for him to communicate his wants and needs (he began pulling me to things and pointing), the therapy really helped relieve much of his frustration. It got even better when we removed dairy. Now, one year into therapy, the change in him is amazing.
Have you read the book The Boy Who Loved Windows by Patricia Stacey? Her son had many motor issues along with his autistic tendencies. She used the floortime approach, OT and Speech and I believe dietary intervention and he has recovered. It's really an inspirational book. She's not big on ABA, but it didn't appear she knew much about it, basing her opinion on comments from two people. However, she had great success with Floortime. And, it sounds like your daughter has several OT/PT issues. Do you have help with her through Early Intervention yet? Also, you may want to check into RDI -- Relationship Development intervention. CHeck out books on this approach, which is having huge success, by Dr. Steven Gutstein.
ABA isn't for everyone. We've seen tremendous results, however I believe parents have to choose the therapy that makes the most sense for them, whether ABA, Floortime, RDI, TEACHH, SCERTS or school programs.
I wish I could be of more help. You'll find your way. It sounds like you are really on top of the biomedical stuff. Did you see any change with the diet or any other supplements?
Good luck. Keep us posted. You're in my prayers.
I'm so sorry for what you're going through. My son was the same way for so long. It was horrible, and I thought I'd lose my mind. The real turning point for him came with ABA therapy. By teaching him how to attend and providing means for him to communicate his wants and needs (he began pulling me to things and pointing), the therapy really helped relieve much of his frustration. It got even better when we removed dairy. Now, one year into therapy, the change in him is amazing.
Have you read the book The Boy Who Loved Windows by Patricia Stacey? Her son had many motor issues along with his autistic tendencies. She used the floortime approach, OT and Speech and I believe dietary intervention and he has recovered. It's really an inspirational book. She's not big on ABA, but it didn't appear she knew much about it, basing her opinion on comments from two people. However, she had great success with Floortime. And, it sounds like your daughter has several OT/PT issues. Do you have help with her through Early Intervention yet? Also, you may want to check into RDI -- Relationship Development intervention. CHeck out books on this approach, which is having huge success, by Dr. Steven Gutstein.
ABA isn't for everyone. We've seen tremendous results, however I believe parents have to choose the therapy that makes the most sense for them, whether ABA, Floortime, RDI, TEACHH, SCERTS or school programs.
I wish I could be of more help. You'll find your way. It sounds like you are really on top of the biomedical stuff. Did you see any change with the diet or any other supplements?
Good luck. Keep us posted. You're in my prayers.
redflowers
09-21-2004, 04:52 PM
I just thought of something else. It sounds like you desperately need a break or at least assistance with your daughter. Noone can do this alone. Our state funds personal care attendants (PCAs) to assist parents with disabled children. You might want to check into your state's medical assistance program. I know many parents who have PCAs full time. It is a huge help to their families.
rywilli25
09-21-2004, 05:35 PM
hey thanks for the replies I would really like to get cayla into ABA therapy. I have early intervention that come over every week for OT, PT, and ST. They dont recommend ABA They like the floor time approach. I dont think this approach is working to well for Cayla. I really want to get her into ABA, but cant seem to find anyone in Oklahoma that does it. Cost will also be an issue because she is on Medicaid right now. I put a call in to OSU tulsa to see if they had any grads that are interested in doing ABA therapy. I hope they call me back. The one supplement that has really worked is the Cod Liver Oil. When we put her on it at 13 months old she wasnt looking at anyone. She does have eye contact now and will follow me through the room. She just cant express herself. STill stuck in that shell. I am thankful that we have the eye contact because i know so many parents do not have that with their children. Thanks for the support I really need it sometimes. I know I shouldnt complain I have a beautiful little girl. redflowers was your son regressive or born with autism. My daughter was arching back and neck at 3 weeks old . I beleive the flu shot i had at eight months pregnant had part to do with it, but that is a whole other issue. Anyway thanks for the reply, and good luck with your son.
rochelle
rochelle
Lisa in Indiana
09-21-2004, 06:13 PM
:angel: Rochelle,
I'm so sorry you are having a bad day. I have those every now and then again too. Autism is ugly and I know your pain. I live with it everyday. Just wanting your child to be OK and not autistic is a prayer we all want answered. My dd was regressive type and very self-limited about what she would eat. For us, the GFCF diet gave us immediate results. We have seen a dramatic improvement in her. I am not sure that the diet is working for your dd. It doesn't help them all.
My only concern is not the amount of supplements that she is on, but rather to ask you if had introduced all of these slowly and one at a time? It could be that something may not be agreeing with her system. My DAN! dr. told me it was very, very important to introduce the vitamins and supplements slowly so that I could observe her behavior with each new introduction. She told me to wait about 2 weeks between each one.
Another thing that helps us is the epsom salt baths, and brushing...have you tried those approaches yet?
Please hang in there, I am going to say a little prayer for you to get some relief soon. Don't give up?
(((((HUGS!)))))
Lisa
I'm so sorry you are having a bad day. I have those every now and then again too. Autism is ugly and I know your pain. I live with it everyday. Just wanting your child to be OK and not autistic is a prayer we all want answered. My dd was regressive type and very self-limited about what she would eat. For us, the GFCF diet gave us immediate results. We have seen a dramatic improvement in her. I am not sure that the diet is working for your dd. It doesn't help them all.
My only concern is not the amount of supplements that she is on, but rather to ask you if had introduced all of these slowly and one at a time? It could be that something may not be agreeing with her system. My DAN! dr. told me it was very, very important to introduce the vitamins and supplements slowly so that I could observe her behavior with each new introduction. She told me to wait about 2 weeks between each one.
Another thing that helps us is the epsom salt baths, and brushing...have you tried those approaches yet?
Please hang in there, I am going to say a little prayer for you to get some relief soon. Don't give up?
(((((HUGS!)))))
Lisa
redflowers
09-21-2004, 10:19 PM
I've heard this is a group of non responders to the diet and read in Special Diets for Special Kids by Lisa Lewis that children with signs of autism since birth (yes my son was different from the start) typically have more of an issue with dairy than gluten. Trying both is a good idea in order to determine whether the diet will work for you or not. However, if your child is not eating enough and is getting worse (is this the case?) you may not be able to do the diet, according to the book. I'd go back on gluten and see what happens.
I bet your EI team would like Relationship Development Intervention. It's more like floor time, but very structured to better help parents/therapist achieve goals. However, even with RDI, it is recommended that if the child is not compliant or has behavior issues that behavior therapy be undertaken first.
You could start ABA on your own. I know of a number of parents doing this. There are many sources online for doing this.
Any chance you would move to another state. There are a number of states, New Jersey, New York, PA, Calif, MN and WI that I know cover ABA therapy. I've also heard that St. Louis has excellent services and Nebraska and Kansas have some available as well but I'm not sure at what level. Some of these provide services at home and others in schools.
It seems like a huge thing to consider a move, but if it will get your daughter the help she and your family need, it might be a reasonable option.
I would definitely check into RDI though. The founder has an office in Texas so I'm sure you could find a consultant easily. It's not nearly as expensive as ABA.
Good luck.
I bet your EI team would like Relationship Development Intervention. It's more like floor time, but very structured to better help parents/therapist achieve goals. However, even with RDI, it is recommended that if the child is not compliant or has behavior issues that behavior therapy be undertaken first.
You could start ABA on your own. I know of a number of parents doing this. There are many sources online for doing this.
Any chance you would move to another state. There are a number of states, New Jersey, New York, PA, Calif, MN and WI that I know cover ABA therapy. I've also heard that St. Louis has excellent services and Nebraska and Kansas have some available as well but I'm not sure at what level. Some of these provide services at home and others in schools.
It seems like a huge thing to consider a move, but if it will get your daughter the help she and your family need, it might be a reasonable option.
I would definitely check into RDI though. The founder has an office in Texas so I'm sure you could find a consultant easily. It's not nearly as expensive as ABA.
Good luck.
ang64063
09-22-2004, 12:28 AM
Have you tried doing a chealation therapy on her? I am not sure what it is exactly, but I think it does help remove the metals from the body. You might try adding magnesium and epsom salts to her bath water.
How long has she been on the GSE? From what I have been told is that if it has not shown any signs of improvment within 7 days, you should stop giving it to her. I can do other type of damage to her and that could be the reason for the low weight (GSE is found in most OTC diet pills).
As far as the diet goes, it may take as long as a year before you might see some results. You say she is on digestive enzymes, can you increase them? I just recently increased my kids intake of their enzymes and I am seeing some big time changes in my son just since increasing them this past weekend. He has gone from just talking a little bit and making some conversation to being a real chatter box.
Does Cayla participate in any kind of therapy (speech, Occupational Therapy, Physical Therapy)? If not, then you need to get her started ASAP. A place to start would be through your local school district. You can call them and see what services you might be able to get her in (if any). Research the internet and see what services and facilities are available to you. You might have to travel a little ways to get it, but it might be worth it.
As for you. I know that not all of these parents here have rosy and cheerful days. We all have had days when we just want to give up, but you know what we do? We get up the next morning and think of how blessed we are to have our kids no matter what a challenge they might be for us.
I would suggest that you look into respite care. This way maybe you can get an hour or so to yourself and every so often and maybe go out and have lunch with an old friend, get your hair and nails done, enjoy a quiet trip to the grocery store or just go to your room ,lock the door and do something that we really enjoy (nap, read, crafts, watch a non kids movie, etc). Just because we are moms, doesn't mean that we can't have a life outside of our kids. We have to take time for us so we can regroup, have alone time, and realize that we are truly valued. I personally make a point to stay up and hour or so later than the kids just so I can have some "me" time. I also find a long soak in a hot bath with Epsom Salts a great way to unwind.
One last thing, you said she has a Autism diagnosis, right? Have you tried applying for SSI benefits? What about Medicaid? You could also try contacting local charities (United Way, Shriners, The Children's Miracle Network, just to name a few) and see what help they can give you and Cayla.
Good Luck!
How long has she been on the GSE? From what I have been told is that if it has not shown any signs of improvment within 7 days, you should stop giving it to her. I can do other type of damage to her and that could be the reason for the low weight (GSE is found in most OTC diet pills).
As far as the diet goes, it may take as long as a year before you might see some results. You say she is on digestive enzymes, can you increase them? I just recently increased my kids intake of their enzymes and I am seeing some big time changes in my son just since increasing them this past weekend. He has gone from just talking a little bit and making some conversation to being a real chatter box.
Does Cayla participate in any kind of therapy (speech, Occupational Therapy, Physical Therapy)? If not, then you need to get her started ASAP. A place to start would be through your local school district. You can call them and see what services you might be able to get her in (if any). Research the internet and see what services and facilities are available to you. You might have to travel a little ways to get it, but it might be worth it.
As for you. I know that not all of these parents here have rosy and cheerful days. We all have had days when we just want to give up, but you know what we do? We get up the next morning and think of how blessed we are to have our kids no matter what a challenge they might be for us.
I would suggest that you look into respite care. This way maybe you can get an hour or so to yourself and every so often and maybe go out and have lunch with an old friend, get your hair and nails done, enjoy a quiet trip to the grocery store or just go to your room ,lock the door and do something that we really enjoy (nap, read, crafts, watch a non kids movie, etc). Just because we are moms, doesn't mean that we can't have a life outside of our kids. We have to take time for us so we can regroup, have alone time, and realize that we are truly valued. I personally make a point to stay up and hour or so later than the kids just so I can have some "me" time. I also find a long soak in a hot bath with Epsom Salts a great way to unwind.
One last thing, you said she has a Autism diagnosis, right? Have you tried applying for SSI benefits? What about Medicaid? You could also try contacting local charities (United Way, Shriners, The Children's Miracle Network, just to name a few) and see what help they can give you and Cayla.
Good Luck!
redflowers
09-22-2004, 12:00 PM
Rochelle, I know you mentioned in your first post that you are doing chelation therapy. I've heard this can make children very sick. I've also heard that you need to get the gut issues (yeast, digestion) under control before attempting this and that this can take up to a year.
Has she always been this way with the crying and stuff? If not, then maybe you need to take a major step back in her supplementation program. She's getting so much. Maybe stop and reintroduce one at a time to see if you can track differences.
I'm sorry. I hope you're not getting irritated with all of the suggestions. You sound like such a good mom, like you're really trying everything you can.
Best of luck. This is a horrible disease with devastating effects on families. Most days I do feel blessed and others I just feel defeated and overwhelmed. I'm getting there again now after a few weeks of feeling pretty good. I know that it always gets better and then gets worse for a while again. The ups and downs I've come to accept as part of life, but worse when dealing with all of the issues related to having a child with special needs.
Take care of yourself. Try to get a break. (I'm not good at doing this either, even though I know it would help.)
Has she always been this way with the crying and stuff? If not, then maybe you need to take a major step back in her supplementation program. She's getting so much. Maybe stop and reintroduce one at a time to see if you can track differences.
I'm sorry. I hope you're not getting irritated with all of the suggestions. You sound like such a good mom, like you're really trying everything you can.
Best of luck. This is a horrible disease with devastating effects on families. Most days I do feel blessed and others I just feel defeated and overwhelmed. I'm getting there again now after a few weeks of feeling pretty good. I know that it always gets better and then gets worse for a while again. The ups and downs I've come to accept as part of life, but worse when dealing with all of the issues related to having a child with special needs.
Take care of yourself. Try to get a break. (I'm not good at doing this either, even though I know it would help.)
shue
09-22-2004, 10:17 PM
(((hugs)))
(((hugs)))
(((hugs)))
We had many days like the ones you are describing. I am so sorry. It is too hard. I hate autism too.
ABA has been our turning point. We also supplement it with the OT and have begun the nutrient/vitamin regime. All of it has worked together and Abby has made a 180, she really has. We still have bad days, recently some new stuff has come up, but it still better and more manageable than before. EI would not recommend ABA either, but EI is the mouthpiece for the schools around here and since the schools don't want to provide ABA, they only have therapists/psychologists on the team who will not recommend it, KWIM? A psychologist outsie of the system whose dx and recommendations we decided to abide by encouraged us to use it with Abby. I know it is not a cure-all. I know that not all children have the response to it that Abby has, but I encourage you to pursue learning all you can about all of the interventions and while it is good to listen to the experts, you are the best advocate that Cayla has. God bless and habng in there.
(((hugs)))
(((hugs)))
We had many days like the ones you are describing. I am so sorry. It is too hard. I hate autism too.
ABA has been our turning point. We also supplement it with the OT and have begun the nutrient/vitamin regime. All of it has worked together and Abby has made a 180, she really has. We still have bad days, recently some new stuff has come up, but it still better and more manageable than before. EI would not recommend ABA either, but EI is the mouthpiece for the schools around here and since the schools don't want to provide ABA, they only have therapists/psychologists on the team who will not recommend it, KWIM? A psychologist outsie of the system whose dx and recommendations we decided to abide by encouraged us to use it with Abby. I know it is not a cure-all. I know that not all children have the response to it that Abby has, but I encourage you to pursue learning all you can about all of the interventions and while it is good to listen to the experts, you are the best advocate that Cayla has. God bless and habng in there.
lillypad
09-23-2004, 03:48 PM
Have you tried music to calm her? and perhaps you? I can take just about anything but unconsonable crying. One friend of mine found the only thing that calmed her son was the sound of the vacuum cleaner! Swaddling with a blanket has worked for some, ski hats sometime calm, baths - both of you! Place calls to every agency that might provide you help - if they say no, ask who can - and call them. It is awful that in a time of need it is the parents who have to find the help, unfortunately, it is. Another idea is to see if someone can point you to a parent group where you can find some local - face to face support. When my son was your daughter's age I made friends with another mom - we became best friends and I know we saved each other's sanity many times.