Hi,
I have spent many nights here hoping to figure out what went wrong with my 2.4 y/o son. As all mothers would say about their babies, he's a beautiful, loving boy. Thankfully, the loving and beauty parts have not changed, but so much has. From much reading and research, it is obvious that he has autistic characteristics. He will be assessed but I wanted to know what I'm dealing with in case they told me he was in fact autistic.
I have read so much about the effects of MMR vaccinations and their possible link to autism, but looking back, I don't think that was the time things began to change for him. However, after a meningitis outbreak in my city, there was a city-wide vaccination for meningitis and like the good parent I am, I lead him to it like a lamb to it's slaughter. I can honestly say that it was shortly after that time that my little angle left us and went into a funny world of his own. He used to address me as "mama" and now, nothing. Even though he was still too young for accurate speech, he would lead me to the cupboard where the plastic cups are when he was thirsty. Now, nothing. I have to keep offering him water just in case he was thirsty. But the amazing part here is his ability to run the computer. I read somewhere that autistic children, and sometimes adults, need to be taught to use a mouse. He can do that and more. He knows excatly what CD he wants and what icon to click on. He knows when to press play, exit, minimize, etc. I cannot tell you enough about his computer abilities, his memory games, and any other toy that interacts with him. He is very loving and loves to laugh. However, his smiles have to be induced and are never offered by him just because. He will walk with me anywhere and will hold my hand the entire way, yet will make eye contact with me only in the morning. He does not spin in circle or spin his toys in cirlces, he uses his toys the way they were made to be used, yet he will not engage in any kind of imaginative play. He has never approached another child for play. He has never acted in a manner that scared me, like hitting his head or biting his arm, yet I noticed he liked oral stimulation because he loves to lick things..... food. He can lick a cookie for an hour before eating it. I have started him on a gf/cf diet and it has been 4 days now. I know, not much time to notice a change yet, but I'm really hoping that it will help. I purchased vitamins, B6, mangesium, folic acid, vitamin C, and one more but I can't remember the name. I gave some to him a couple of times but had to stop. I stopped because I don't know the dosage he requires and I'm affraid to harm him. I have now ordered Super-Nu something just so I don't mess up with dosages. Next, he gets his hearing checked, but I know it's fine. Then comes the autistic evaluation. I know what I will be told...if not autism, then pdd. I'm obviosly confused and very sad.

hi,
sorry your feeling sad, its a difficult time for you but your sons a lucky boy, you have obviously read stuff, awareness is a good thing, as for wether its autism, it sounds a strong possibility but then so many things are similar i guess you need someone to look at the big picture, if it is autism
then at least you'll know what you're dealing with, one of the hardest things for us was not knowing, but then when we got a dx
we didn't want to believe it, we tryed hard to find any signs that would prove they were
wrong,that our beautiful( but silent)twin girls were just a bit slow, we had to accept it but it was a very difficult time
that was 2 1/2 years ago, then 1 1/2 years
ago our little boy was dx he sounds like your
little boy, elliot switched off his language
and all interest just after his mmr. do let
us know how you get on. jo.

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Hi Jo,
Thank you for replying to my message. I was obviously down when I wrote that and it was justified. However, I'm writing back to let you know that I have seen some progress with my son. His eye contact has improved and I'm not the only one who has noticed it. I realize that we have much more work ahead of us, but I have new hope now and the future is certainly looking brighter.
His hearing test went well; hence, his speech is now the issue. What I have done with him is giving him DMG (I give him one 125 tablet a day and I read I can give him up to 4. I think I'll work my way up to two only, for now) and he's still on the g/f c/f diet. We have cheated a couple of times but I have not seen an adverse reaction. I'm not sure if this diet is for him or not. But all said, his improvement can be due to the diet or the DMG, or the combination.

Thanks again

P.S. Your nick makes a whole lot of sense. I agree, what are the odds?

[hi, glad to hear you're feeling less sad,
you have to have bad days to help us see
and recognize the good days, seems like things are improving for you, things do get better, i know when abbey & bethan were dx
we thought that they would stay how they were then, and just get older, how wrong we were, we now have two girls who talk non-stop and the biggest hurdle so far both out of nappies day and night, we found a real lack of support in our area, so i set up a support group, most families kids are younger than abbey & bethan so its good for
them to see the way ahead, i guess with elliot we don't tend to worry as much as
we've been through most of the things in stereo!!!!! i know things will get better for you, take care. jo.


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Hi Jo,
I'm sure you've probably posted this already, but would you mind emailing me about the sort of treatments your kids went through. Did this include vitamins and DMG? Diet? Speech assistance? etc. I would very much like to hear what you have to say. I want to add that on a couple of occasions, I've reintroduced gluten to my son and I did not see any unusual reactions. But I am, however, confident about the DMG.

samoura_c@ivillage.com

Thanx again for taking the time.

Sam

hi sam,
afraid i'm not very good at working out e-mails and did try to send one, could you leave a link to make it easy for me.
it's true to say i find tecnology harder than autism!!!!!!! i find i don't know what a lot of the treatment on this site are and
also living in england things are very different here regarding research and treatment my kids have had input from speech therapists. the girls were dx at 4 1/2
so missed out on preschool support, they went
to special needs school where staff numbers
were 4 staff to eight kids they have been there two years and we are now arranging one
session a week in mainstream with one to one
support, other than the work we'vedone with them at home, which is enormous.

elliot was dx at 2 1/2 so he's had more input
he had a preschool worker 2x month speech
therapy not very often. we got him a statement of special educational needs which
enabled us to get a place for him at a nursery which is just for children with
autism they have 7 children and 4 staff
plus a speech therapist, we've just been to his review today which went really well
he is helping the other children to talk!!!!
elliot will go on to mainstream in a years time (hopefully!)

we haven't used any medications or therapy
with our kids it would be very difficult to
do any dietry stuff with elliot as he has a
very limited diet anyway, we did try milk free for a time but no change noticed, i'd
be interested to here more about the treatments you've tried or want to try, you
can e-mail me then i can just reply its
probably better that way

broadhurstfamily@ntlworld.com

take care jo.


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Hi Sam and JO,
I just wanted to share an encouraging story with both of you. When I was pregnant with my son, Michael, I was on three different types of antibiotics on and off through out the 2nd and last trimester. This was due to a chronic sinus infection. When Michael was born I can guarantee you he was immune compromised, due to the illness I had during my pregnancy. He was most likely born with colonized bad bacteria and yeast as well, instead of normal flora. I breast fed him while AGAIN on antibiotics even though I had been reluctant, the MD's assured me that it wouldn't hurt him. NEVER TRUST A PERSON BEFORE YOUR GUT INSTINCT!!! Anyway, things got worse with his intestines. He was born with a birth defect, hypospadias. Which I believe was due to a certain antibiotic given to me right before my 4th month. Overall he appeared normal, but very tired the first month. After the second month immunizations I noticed he didn't make eye contact while I would breast feed him. He never smiled as a baby, unless he had gas. My husband and I just shrugged it off to saying he was a serious baby. We had many sleepless nights with him in pain, however we didn't know what was causing him pain. He was diagnosed with colic, and we treated him accordingly. We went through some testing to see if he had allergies because he was sick with viruses (Intestinal and upper respiratory) every week it seemed. He developed repeated ear infections and had tubes by 10 months old at which point they corrected his hypospadias. After his 1 year immunizations we noticed that he declined even further immune wise. He had fevers of unknown cause, and chronic ammonia smelling stools 5-7 times per day. The MD's were clueless, and sort of told us to deal with it he'll grow out of it. We could never get a baby sitter because he wouldn't stay with anyone but us. He cried a lot! He didn't start sleeping through the night until I decided to remove milk from his diet at 15 months! All allergy testing came up for the most part negative, until we had him tested for 90 foods IgE and IgG. He reacted to all the offending foods on IgG, which indicated an intestinal allergy! Now we were getting somewhere. I chose to dedicate as much of my free time to finding out what was wrong with my son and how to cure his intestinal problem ( leaky-gut syndrome ). He never interacted with people he was for the most part withdrawn and irritable. He was and is real pale and has a constant elevated liver enzyme and platelet count, which again the MD"S just kept rechecking with no idea of what was causing this. He was tested for celiac which was negative. He didn't meet a lot of the developmental milestones that other babies meet. He never crawled. He had no interest in anything at most points but sitting undisturbed. He developed obvious Autistic symptoms by 1 year but we overlooked it as we new he got a bad start with all the illness. After his last set of immunizations he became very difficult to deal with behaviorally. He had major tempertantrums, screamed if he was to make any transitions, non compliant when it came to simple things like sitting down to eat dinner, taking a nap, or getting in his car seat. He still had episodes where he would wake up in the middle of the night screaming, and sweating perfusely ( phenyl intolerance). We were told that he was born miserable and would always be miserable by a traditional Allergist who refused to test him for candida, at my request. I new he had to have a problem with his intestine, ultimately. Now the break through occured when I read Doris Rapps book "Is this your child". I found a MD who worked with kids who had behavioral problems due to allergy related illnesses. I started FAITHFULLY!!!! a diet free from all high protein molecule foods like milk, wheat, eggs, cheese, soy, casein, whey, gluten, and sugar was also restricted as it caused him to have diarrhea and yeast rashes. We also don't give him any preservatives, artificial colors or flavors or artificial sweetners. This was real difficult and it din't illiminate the symptoms immediately, but we saw some progress. When I decided to put him on nystatin for the yeast and culturelle GG for replacing the good bacteria in the GI, is when I saw significant progress. He started maintaining eye contact for the first time!! He began to speak, and really gained some great language skills. When we started the super nu thera vitamins is when he really started to come out of his own world. This I hope encourages you both. I have to say that the diet, nystatin, and culturelle GG along with praying, has brought Michael out of his own world which was painful and miserable for him. I think this can help all Autistic children, however, if the child doesn't have the genetic fragile X, but has the injury to the intestine causing all the problems with leaky-gut and candida and metabolizing and vitamin difficiency ect. I believe this is the first step to healing. I honestly believe that if they can heal the intestine the child would overall heal. I realize that in some cases it is a matter of mercury poisoning, which we are having tests performed on Michael for. I am hopeing to e able to convince the Immuneologist next week to try the IV gamma Globulin IV therapy on Michael, in hopes to heal his intestines. Overall he is doing great he has tested above average for his age (3), he sometimes lacks appropriate behavior in social settings and transitions. But he is affectionate and he finally has a sparkle in his eye. You would never know anything was wrong with him, outside of some behavior issues. Please if you wish to try this don't miss a dose of medicine or cheat by giving any offending foods the child will regress and for Michael regression lasts sometimes for up to a week. Sorry so long, but I just wish other people could see the benefits from hanging in there and making the diet a way of life regardless of not seeing results immediately, or feeling bad that the child can't have a food they like. The point is the foods are like HEROIN in their bodies, and the damage will only continue. There are so many parents out there that are clueless to this, but I am one who has a passion for the other parents and children to have the opportunity to grow and I know it works. Until there is a cure, this has to be a way of life for my son. It is a lot of work but it's all worth it! God Bless

Hi Krisyd,
I’m a firm believer in the saying that “God does not give us more than we can handle,” and from your posting, it is obvious that you are a very strong woman. I applaud you for your accomplishments. As for my situation with my son, I find myself in a difficult spot at the moment. He has not been dx as of yet and the symptoms he displayed a while ago are diminishing (such as lack of eye contact and lack of socialization). I’m not sure any longer if in fact he is autistic.
I have tried the g/f c/f diet and I didn’t notice any difference. Actually, what ended up happening is my son became sickly looking and sad. He was never like this. Also, I
understand that he would have had some stool irregularities (such as constant diarrhea or
constipation) which would indicate some intestinal problems but he never had. He has never had any form of yeast infection. That is what made me think that may be this diet is not for him. Also, he never had any
behavioral issues that I understand would be alleviated by the diet. He was never an angry
or overactive child. He rarely, if ever, had tantrums. His sleeping habbits have always been good.....he sleeps from 8 pm till 8 am without waking. Once I put him back on his regular diet, he became a much happier little boy. Further, the more time I spend with him and really pay attention, the more I realize that he is verbally communicating. However, some are only understood by myself. When I start singing a song he likes, he will join in with all the hand movements. Granted his words are not perfect, but they are none-the-less words! He initiates activities with me and I never thought about that in the past. There were a great deal of subtleties that I ignored. So, as you can see, I’m back to being confused. I went from confused about what autism is, to understanding autism to a degree. Then I find myself confused again as to whether or not my son fits the profile at all. I will continue with the suggested assessments and I will remain open to any suggestions. As for now, my son seems to be benefiting a great deal from the time we’re spending together, and hey, maybe that’s what he’s been needing all along.

Sam

[This message has been edited by no_longer_sad (edited 03-28-2001).]

Hi Sam,
I am so happy for you. I know how discouraging it can be when you know something is wrong with your child but you can't seem to find the help they need or even put your finger on exactly what could be causing the problem. Myt suggestion to you would be to really engage in play time and learning time with him as well as reading to him. The other suggestion is to ask you Ped's MD for a referral to a ? Regional Center that works with children and tests them for developmental delays. Mt son went through this just recently, and it is a wonderful tool for you to use in finding out where he is in the developmental areas. I have learned to also pray for my boys, as there is so much in life that is out of my control. God Bless

Hi,
If you feel your child may have regressed because of his vaccines, please look at getting his mercury levels checked. Chelation can produce some exciting results. Although ridding the body of heavy metals and then a later improvement in behaviour can achieve "coming out from a diagnosis" it is annoying to see kids formally dx as having autism, recover or partially recover to have experts then say "well it obvioulsy wasn't autism"

Anyway there is a great e-group at Yahoo called Mercury-Autism. It has lots of people currently chelating their autistic children. People who believe their children slipped into autism post vaccination.

Hi Supermamma, I had my son tested for mercury via hair. The results were normal. Whatis your view on hair as opposed to a 24 hour urine? Also would you know what is considered to be a high rubella titer? My son's was 2.4 and the test said anything over(1.1). He had this at 18 months, and it has been almost 18 months since. Do you know if 2.4 is considered high? I thought you might have some info since you are into the chelating. Thanks for the advice

I have been away from the board for a while now...and deep down, hoping that this site wasn't for me and my family at all! I had posted that my son may be autistic but had not yet been dx. Well, he has been dx as autistic and when my husband and I were told, neither of us were surprised or overly angry. We had done a great deal of reading on the subject and were prepared for whatever the experts had to say. The reason I say we were not angry is because our son is so special (like all of our children here.) We actually had him placed in a program for children like himself even before we saw the experts because of information provided by people here. We were told that he can only enter such programs with a letter of referral from a doctor, but we kept on them till they got sick of us...and it worked. Our son has come a long way. He no longer stands at the fridge where I have to play a guessing game. Now, "tuise" means juice...and he asks for it. Eye contact, I don't remember him not having it. Social play....he attacks his brother and tries to tickle him. His ability to learn is amazing. We were told that he will not learn the traditional way....but boy did we prove them wrong. I sat with him one day and I decided to teach him to write his numbers. We fooled around a little and the next day, he was able to write his numbers to 20!!! As for the alphabet, not only does he recognize them, he writes them. I can ask him to identify letters and says them out loud.
I know that there is still a long road ahead but I'm not as scared as I was. I see that the potential is there and it bothers me to think that when his doctor first suspected autism, he told us with pitty...as though he would be lost to us. Not only is he not lost to us, or to himself, he is making wonderful leaps and gains daily and I'm sure it's only a matter of time when this whole thing will be a faint memory.
The main reason I'm writing now is give others hope and remind you not to let some Dr. tell you, in a sad tone,that your child is autistic. It is not the end of the world....as I once thought, it is the start of a different world...that's all. Certainly, it will be a world of uncertainty at times, but the joys you get from minor achievements are priceless.
By the way, he is now three years old...

Take care all,

Sam