7/24/09

Yeah... the doctor's appt went well. We are both happy we decided to make the change and have all in one shopping with Tyler's DAN doct and pediatrician, etc. If you want more info on the new pediatrican, you can go to the following link. http://www.integrativepediatrics.net/

We reviewed Tyler's history, treatments, diets, etc. All DAN Doctors know and parents too that it's a crap shoot, you never know what the right comination is. So he looked at Tyler's current supplements and decided to have us do a few more tests. What's great about this pediatrician is that they had the appropriate restraints necessary to ensure a safe blood draw, which was very helpful since they had trouble gettign blood at first (poor ty). Ok so the plan is to stop all supplements, except enzymes for the next 4 days. Then we are going to readminister the urine tests and He'll evaluate the data and we can then reevaluate Tyler's supplements, and go frmo there. We already know we are adding about 4 new supplements... magensium, ProDHA, VidaminD and lithium to try to compat some of the issues we talked about today, i.e. chewing on clothes, etc. He also wants us to start back up B12 injections and add to it TMG he said these two medications go together. We've had TMG sample at home to try already. From what I hear it's supposed to help with speech.. same as B12 which leads me to my next topic.

Brace yourselves.. the doc said that Tyler seems to have MILD autism. Just typing that makes my eyes well up with tears. Now know that all standaridized tests say TY has moderate to Severe Autism, however the doc says Tyler's major issue is Apraxia, i.e. absence of speech which tends to cause most of Tyler's behavioral issues. We also have sensory issues and peer issues to deal with however, healing that speech portion would obviously promote the social part a bit better and we can deal witht the sensory/food issues. Another reason to try to get going on some more one on one speech. Funny thing... I emailed Carrie for speech recommendations as I couldn't find my notes and she recommneded the person Tyler had assigned for speech towards the end of teh school year, she's typically a resource for the school/county but when the speech therapist left during the school year she stepped in. Small world in autism sometiems and good to know that some how we keep finding the best :) Anyhoo... if we had to choose between speech and music we'd choose speech as a priority but hopefully we can find a way to do both :) Can you believe it.... MILD.. the whole rest of teh appt I kept hearing "MILD" in my mind. Ahhhh.. the odds are significantly higher for a child with mild autism to recover vs. a child with moderate to severe autism. As such.. even if he does not recover, being mild is much more socially acceptable and improvements will not stop regardless of his diagnosis and we could hope for an aspergers diagnosis as an adult.. Where he could function independently and have a family aand friends and just be a bit on the quirky side.. shoot people tell me I'm weird all the time! Although I despise the peaks and valley's that you deal with fighting autism.. I love the peaks!

Ok, he also mentioned HBOT therapy.. we've heard of this before and pretty much all I knew is that it was reallye xpensive and someone at work gave me some info for a place in South Lyon. It's not expensive for a one time situation but it's repeated visits that show improvement. THe doc said today about 30% of kids show signifnicant improvements. THis may be coming down the road for us.. here is an explanation of what it is. Also you can find info on the doctors website including teh cost. He has some available for rent at $2500 a month! Sigh. We'd obviously do whatever we could and do our research if this is a way we decided to go to make it all as affordable as possible. Someone at school told me the south lyon one was reasonable. We'll see.. anyway no need to worry about that now but in case you want to know what it is when I talk about it in the future here is the info: Hyperbaric Oxygen Therapy (HBOT) has become one of the most frequently utilized approaches for Biomedical Therapy in Autism. HBOT involves supplying enriched oxygen at elevated pressures. As a result higher concentrations of oxygen get into the body tissues and enhance multiple physiological processes. Although it sounds quite simple, the effects of HBOT can be profound. There are reports of HBOT being helpful for dozens of medical conditions including wound healing, infection, intestinal inflammation, fetal alcohol syndrome, chronic pain, and degenerative brain diseases. Many hundreds of children with autism have undergone a course of hyperbaric therapy at various autism centers, with great anecdotal success. Parents report significant improvements in language, socialization, behavior, and gastrointestinal symptom. HBOT appears to work on many levels: it is anti-inflammatory. It fights abnormal oxygen-sensitive bacteria. It improves metabolic efficiency. It improves blood flow to the brain.
www.hbotreatment.com

Ok we are also going to start ben on enzymes to help with his digestion.. he's typically constipated until we started benefiber which is ok but now he's on the other end of the spectrum. He said kids with bowel movement issues typically ahve trboule with potty training so we are gonna try to get that in order, and of course he had a takl with Ben about being a big boy. Also discussed how peer pressure is a big helper so mabe at daycare they can have a potty train! I mentioend this to daycare today. As for food.. and ben's lack of interest, he said not to make it a control issue. Have healthy food availalb efor ben to eat whenever he decides he is hungry and to not force him to eat meals if he is not hungry. which our kids never seem to be hungry. Both boys are still under 30 lbs.. Ben at 29 lbs and Ty at 27 lbs. Ben was almost 1.5 inches taller than Ty. Ty is so little. But doc said as long as they are both still growing, no concerns there.

Oh and he gave us a website we can go to to track supplements and symptoms, etc. so taht's cool that we have somewhere to do all that.

Ok I think that's about it for now. he didn't seem overly concerned about yeast as his tests from previously indicited they were only slightly elevated. We are retesting urine though this week so we'll see.. the boys were on antibiotics a lot this winter so who knows it may be higher now but hopefully it will be teh same and then we don't have to deal with that antifungal medication.

So anyway it's nice to finally have a pediatrician again. It's great to hear the word "mild" in regards to Tyler. It's great to have someone really work with us on a plan for moving forward and it's great to get the reaffirmation that we have been on the right track all along and we are lucky we caught it early we are lucky that we haev before, during and after stadnardized test results thank so to the study, we are luck that we had carrie and went forward into the path that we did. I mean just this week our support group leader saw the blog and emailed me the name of a music therapist she knows.. if it weren't for us moving to Ann Arbor schools, we never would have gotten that input from her. We've met some wonderful supporting people along the way and they just keep steering us in the right direction.

So next week is the last week of summer preschool at the school and then immediately following the next week Ty goes off to Splash Camp and then after that back to school already and hopefully we'll have some sort of speech and/music plan in place.