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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Sunday, May 6, 2012

Allergy, Therapy, Developmental Pediatrician

Sorry it's been so long since I last updated this blog. It's been crazy here at the Hemme Haven. 
So much has happened I dont even know where to start. I guess I'll try to start where I left off last time. 
We were under the impression that we were having patch testing done at this visit but Dr. G wanted to re-do the prick testing in his office and I was totally on board with that considering how often EE kid's allergies change. So we re-did that and John only reacted to Milk and Beef!! They were whoppers on his back but still! He reacted to Milk, Beef, Corn, Wheat, Soy, and Egg last time! Now, this does NOT mean that ALL other foods are safe for John! I wish that were true with all my heart. 
John also had a slight reaction to strawberries, navy beans, and green peas.

Now I know with out a doubt that John's EE reacts to corn, even though it didn't show up on this test. I have seen his EE symptoms flare from eating corn products. It's a perfect example of how EE kids test weird with standard allergy tests.
The next step with the unique way that Dr. G. tests EE kids is for us to do another prick test but use REAL FRESH food in place of the concentrate that is standard. Also we will do patch testing and a blood test, in that order. We will test the foods that passed on the previous test. Once we are done with all the allergy testing we should be cleared to meet with the dietitian and start food trials! I hope to be starting food trials by June. I am so ready to get some food into that boy!

Next was the hip xray and occupational therapy evaluation.
The xray showed nothing abnormal. It all looked fine so we are guessing that his preference for one hip over the other was just a learned habit. Now we will start trying to correct this habit in physical therapy.
The occupational therapist suggested that she see John twice a week for half an hour. We need to work on some sensory issues and she will help us to get John drinking out of a straw/sippy cup. 
She noticed some behaviors that had her concerned enough to suggest we take John to a developmental pediatrician to have him evaluated. 
She also told me that the local dev/peds are really good and there are only a couple so they have long waiting lists but to call and get the first available appointment and to get on the cancellation list and call once a week to check for last minute cancellations.
So that was what I did as soon as I got home. They told me she could get me in in February!! I said, "sure". Then she started taking my information and asking why I needed the appointment and when I told her about John's disease and what the OT had told me she said that they could get me in in December! I'm thinking, "wow, okay"... So I took that appointment. 
They called me the next day and asked if I could come in the following day because they had just had a cancellation and they were told to call me first for any available appointments. It was PERFECT timing!
So Dr. K (the developmental pediatrician) sits on the floor with John and plays with him for over and hour, asks me questions, like a billion of them, and continues to watch John play with various toys. All the while writing in her notes and checking things off a check list.
She said that behaviorally John scored around 7 months (!!!!!) for most things. Some things he scored up to 14 months. She said that it has nothing to do with his nutrition (or lack thereof). 
She said he has autism.
She also said he was very very smart. This is a good thing! Know we know how to help him learn and catch  up in these areas where he is behind! I dont care what you call it. Label it whatever you want. The only difference between now and a week ago is that NOW we know how to best help him succeed in everything he could ever hope to do! 

We also got a script written by the dev/ped for speech and feeding therapy that Dr. C was dragging his feet on. We have speech eval Tuesday. But funny enough John is taking off with his vocab. He has a decent (IMO) list of words growing here!!
"hi", "Ow", "DiDaddy" (daddy), "ball", "yay" and today he said "bubble" when I asked him if he wanted to take a bath! I swear he said "thank you" while he was in the bath but I have might have imagined that one.
Seems like he is growing up too fast now!

Physical therapy is going well. I was worried about her pushing him too hard too fast but since I've started doing the same things at home, he's gotten a lot better about it there.
 working on core muscles and ballance
 working on sitting correctly, and squatting down to pick up something with out sitting.
working on walking with our hands down by carrying a ball

We really like our physical therapist but she is leaving at the end of this month!! We will miss you Ms. R!!
Things are really moving now and John and I stay busy and we are working hard!
Sorry again for the long break in between updates! I dont like these long ones so maybe I'll keep up better from now on!

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