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i need help... Posted By: leeannpetty13
Posted On: 04/06/2008
so i'm gonna try to make a long story short here it goes....
dylan was almost born at 26 weeks they stopped my labor with tributiline (sp.) and gave me brethine to take for a while. he managed to stay in and i was induced at 39 weeks. they had to use a vaccum and forceps and left a huge hematoma on his head for an hour or so. from day one he cried and threw up and couldn't go poop. they said colic..he will grow out of it, blah blah blah. well he finally stopped throwing up at 18 months and then he still couldn't poop, he would strain til he was blood red in the face, finally at age 3 he prolapsed his rectum. so then came the rx laxatives. he seemed to always be an angry baby and toddler, was social with adults but not other children, he head butted his little brother the day we brought him home from the hospital. since then it has been downhill. he had his tonsils and adnoids removed due to obstructive sleep apnea at 4 and from birth til 3 had endoscopy, colonoscopy, upper gi, ultrasound....he was thought to have colitis, gastroenteritis, ect. well at age 5 we noticed to facial grimacing thing he was doing, took him to the neuro they discovered he had a seizure disorder, tics (motor and vocal), anxiety, mood disorder, sensory integration disorder...you know the whole sha-bam. then at age 7 pdd-nos and now adhd. they have had him on so many drugs but as of now he is on haldol, depakote, clonidine, adderall and he was on topamax for his tics but when his neuro got tired of us....he took him off of it so now his possible tourette's is in full swing, to the point of him being in pain. so here's my question and i could really use your advice.....i'm thinking of having his psychiatrist take him off everything gradually of course, and only taking clonidine for his sleep and topamax for his tics and putting him a gluten free diet. possibly taking him to the mayo clinic in jacksonville florida. what do you guys think? any advice or helpful hints?

thanks for listening to me ramble
with love,
leeann
       
mercurymom wrote this reply on 04/06/2008
Never try to take the drugs from him without your MD to top of things..that's first an foremost. Second..the gluten free cannot hurt him, it's a food choice more or less..I have 2 members of my home gfcf..my son and husband..both do much better health wise off gluten for sure, and Dh has been able to stop several drugs. Do read Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock and Cameron Stauth (Paperback - April 29, 2008) to better help you understand some points of view on going a different route. www.generationrescue.org has a state by state list of MD's you can contact. You have some very good ones in Florida. My main thing is..we are not MD's here and anything anyone suggest needs to be just that..a suggestion. I wish you well..your sweet baby has had it hard..and we all want him to get better!!!

suefrank wrote this reply on 04/06/2008
The mayo clinic in Jacksonville sounds like a good place to start. Do they have a neurologist that specializes in Tourette's or Autism? Have you seen the Frontline episode called:The Medicated Child? It was quite good, I could mail you a copy or you can check PBS to see if you can watch it online. If you are uncomfortable with the amount or types of medication he is on, surely bring that up to your doctor. In the meantime, the diet can't hurt him and might just help! Good luck Leann!

KevinLivsDad wrote this reply on 04/06/2008
Only thing I have heard is not too get your expectations too high on the mayo clinic. A lot of people think they are the know all end all to medical solutions. They may be

Motherof4 wrote this reply on 04/07/2008
You've been given great advice so far. Definitely try to take him off gluten, also milk and milk products. You might want to talk to an allergist. It's possible that his neurological issues are causing his intestines to stop peristalsis, or it may be that his immune problems are irritating his neurological system, or there might be something else going on. As long as he gets all the nutrition he needs (try gluten-free vitamins) the special diet won't hurt him a bit... as long as he'll eat it. Good luck. He's in my prayers.

mommyof3gr8boys wrote this reply on 04/07/2008
Well, EJ was somewhat similar to your little guy... He too cried and threw up from day one and I was told it was colic... he too was a very irritable toddler, and has continued to have issue.. He has the ASD dx, he also had an ADHD dx and was on meds for it which only seemed to make him worse. EJ also has SPD, anxiety, and dispraxia. He has had an EEG to rule out seisures. He does not have them but he has what they call spells... Which look similar to a very mild seisure but with out the damage that they can cause...We have taken EJ to a new psychiatrist who has taken him off of the stimulants for the ADHD.. from what she told me is that they do not like to give the ADHD dx once they already have a spectrum dx becuase it is redunadant... ADHD symptoms are also Autism Symptoms... THe meds were making EJ totaly out of control with aggression and emotions. Since he has been off of them he has made a lot of imporvemnt. He is still on andother med for anxiety, compulsions, and aggression. Of course we still have daily issues thes meds by no means have cured EJ nor are they to treat Autism they are just to help him with some of his out of control symptoms. EJ does not have some of the other major health issues that your child does so I cant speak to those things... There are other ways to treat Autism with out medications so dont be afraid to ask the doctors to take him off the meds... Good luck

PebblePolisher wrote this reply on 04/07/2008
Wow! My heart goes out to you. Is the psychiatrist collaborating with his other physicians? What other type of physicians are part of his team, if any?

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