We had our follow up appointment with our developmental pediatrician today. Earlier this month, I did post that all of the genetics testing (FISH, Angelman's, Fragile X, etc...) that we had done came back negative but now the doctor is asking us to come in for an MRI and Urine Organic Acid test. Not that either of these things have a high chance of revealing the cause of all this but just to have a better understanding.
The doctor also did his normal spill about how diets, supplaments, etc... will not work or be worth my time. Which is fine that he has that opinion but I don't know why in heck he has to be so very anti biomedical. I don't understand why most doctors are not even open to giving these types of things trial periods. Which brings me to my next point.
I have been posting on a developmental delays/concerns board since March of this year. There is also an ASD board with a lot of good information but some of the stories make me very sad so I try not to read too much there but there is a plethora of information regarding GF/CF, Feingold, supplaments, and therapies. If you have read my blog lately, you know that we have not seen any dramatic or really even subtle changes in Austin during these first two months on GFCF but I can't help but wonder if there are more things that we can be doing to help. Unfortunately seeing a DAN! dr. is just not in the cards for us right now but I am seriously considering eliminating soy and doing Feingold in addition to GFCF. I am also thinking about ordering a few supplaments. From what I have heard, Kirkman Labs has trial portions that are around $3 so that you can see if they might help your child out before you buy a large bottle.
It's still something that DH and I are talking about but I honestly don't know if I can just give up knowing that there is other things that I never gave a shot. I would always be wondering what if.
4 comments:
Hang in there...I can share our experinces so far with the supplements. Someone told me there is a website that sells Kirkman's products but cheaper! I'll look for that one and will email you later/tomorrow. Matthew is not doing well on CF (we just started yesterday!!!) He hates all the milk substitutes. And he is starting preschool soon and I am freaking out...very scared and nervous! :0 Cyndi
I was worried about the milk substitutes with Austin too but I got Vanilla soy milk and he loved it. But I have decided to eliminate most soy so now I bought rice milk. I'll have to see how he does with that. With Kirkmans, I just bought some trial sizes of Super Nu Thera and Enzymes so I can see if I like them before I buy a big bottle.
Hi J, Try not to get discouraged. The DAN protocol is still new in the world of science, so many doctors don't know much about it and are negative. Plus it is complicated to find the exact combo of the right diet and biomed treatments, supplements that work for your child, since they all are different.
You said you had questions about Feingold? You can email me directly if you want at revellsk@yahoo.com. Maybe that would be easier.
Katherine
Yes you will always wonder.
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