I honestly don't remember how often I asked for allergy testing for Ben; I probably should have kept track. I took Ben in today for a visit with his PCM to discuss the negative endoscopy results and decide how to proceed with weaning him off Prilosec since his GI is in Seattle. In the end, there were a few other items I wanted to discuss.
My big guy weighed in at 25 pounds and measured 33 and 1/2 inches. That makes him in the 16th percentile for weight and the 30th percentile for length, which is awesome considering he was only 18 pounds and 29 inches at one year.
I told his doctor that the GI wants him to wean off Prilosec but when we tried it this summer, it was disastrous and that I am not comfortable doing it with his specialist so far away without some sort of plan in place. She said there is a local GI and offered a referral there. GREAT....that would have saved the Air Force alot of money if we had gone there initially. She isn't comfortable discussing how to wean him off Prilosec and suggested we discuss that and any on-going reflux symptoms with the new GI.
I asked for allergy testing.....again. My reasoning is that if 90% of babies outgrow reflux at 1 year old and Ben STILL has it at 2 years old, wouldn't a simple allergy test make sense to figure out why (as he has already been testing for everything ranging from cystic fibrosis to eosinophilic disorders). She denied my request saying that if his endoscopy was clear and eosinophilic disorder is not play, there is no reason to test for allergies. SIGH.....
We talked about Ben's involvement in Early Intervention. His PCM called his name, and there was not only no response, but he didn't even flinch. I called his name to show he does the same ignoring for me. I described his sensory issues. I said that he is very social, but isn't interested in peers. She recommended a referral to a developmental pediatrician (this is the type of specialist that diagnoses autism spectrum disorders). I have a roller coaster of emotions about this, but the short answer is that I *know* it is the right thing for him to see a specialist. My gut tells me that Ben is different than Liam, but my gut also tells me something is going on. The waiting list is 6 to 12 months, so hopefully by the time we are seen, Ben will be answering to his name and will be making friends.
So, the way forward....Out of pocket testing for gluten and dairy intolerance, waiting list for developmental pediatrician, staying on the Prilosec until we can consult with the new GI, and having a local GI doctor.....and going back in 4-6 weeks for his 2 year well baby visit.
3 comments:
up to 25 pounds from 18 at one year is pretty awesome! he is teeny! I am glad you got some referrals for local help...hopefully the end up being what is best for ben! I dont understand why they dont just test that little man for allergies! ugh!
25 lbs is great! But, I still don't get why they won't refer you to an allergist? I mean, the developmental ped consult is very pricey-- if the ped would refer you there, what is the deal with the allergy testing? Especially since so much of the sensory stuff you are seeing is sensitivie to gluten type of allergies, etc.??
Celeste--I checked and he was 4th percentile for weight at one year so he really has grown a ton this year! I was teeny, so I think he is just following my pattern.
Kelly--In the past, I was told they'd only refer to an allergist if Ben were LOSING weight. I brought up Ben's cluster of issues that indicate food allergies (the excema, the reflux, and GI issues) and was told that food testing often results in a "wild goose chase." One military friend had allergy testing for her son, but his GI (non-military) doctor ordered it. Another changed to a more expensive plan that includes co-pays so she could see civilian doctors and he ordered it. A third paid out of pocket for a gluten screen and used positive celiac results to justify the need for a allergy panel. I don't know of a single military doctor that will refer for allergy testing for seemingly any reason. BTW, in every one of thos ecases, the kids DID have food allergies but couldn't get any military doctor to order the tests.
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