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Babies: 9 - 12 Months
ABColeslaw
member
Angel Baby Elisabeth Adelle April 2008
Asher Update (Allergy Related) Long
ABColeslaw
member
I figured that I haven't updated in a while and some advice from the immunologist has sorta thrown me for a loop, so I figured I'd post.
1. I think we've changed our minds. The immunologist told us that we made one strong child. Most babies who have Asher's condition are 10th percentile and below for both height and weight. We have to work hard to keep Asher's weight up, making sure he has enough calories, and adding in some fat when he hasn't eaten enough. But its manageable and hes in the 40th percentile for weight. Which is unheard of. The clinic we take him too has a couple other families whose kids have similar conditions and these kids are sooo tiny and can eat more solid foods than Asher can. Asher is also in the 100th percentile for height. He is beyond thriving and the immunologist told us that without reservation that if it were him in our shoes, he would definately try having another child. Our chances of concieving another child with Asher's condition are about 30% leaving a 70% chance on our side. I knew it was going to be hard to be "done" but when Phill started to waver...I knew that any good news was going to sway our decision. That said, even though I have removed my "one and done" badge, we are still committed to waiting until Asher is three to see how he grows and to see what he grows out of and how manageable things are once he goes to preschool, before we start trying for another.
2. Asher can currently have Rice (Which includes rice pasta and rice flour, Squash (All types including summer, winter, butternut, zuccini, and eggplant", and potato starch. The next food trial will be a complex protein trial. It keeps getting put off because he keeps getting hives because certain people in my house aren't careful wiping down surfaces and washing hands. And of course everything goes into his mouth. Anyway, everytime a reaction happen, doesn't matter how mild, a food trial gets put off by three weeks. So we have another two weeks before starting a free range organic turkey trial. Finger crossed for us that he can eat it. And if he can....everyday will be Thanks Giving for Asher with his Turkey, Rice, and Squash. After the complex trial we will be trying green beans followed by peas. If he can have even one of those and the turkey, then I think I'll be able to feed him.
3. As far as additional treatment options are concerned, we've stalled. We were given the option of Immunotherapy...which has some risks associated with it and requires consent from both parents. I didn't really even get to the consideration stage, but Phill has flat out refused the treatment, saying that "Asher will learn to eat what he can have, and we'll teach him self discipline" For him its not worth any risks. I'm torn, because if successful it might mean that he could eat A LOT more. But I see Phill's point of view...theres a chance that it would be unsuccessful and he doesn't want Asher to be a testing rat. Which I get. He said when Asher is post puberty, he can be given the facts and decide for himself. I can't argue that really. Although, at some point I might.
Thats pretty much it. Keep your fingers crossed for us as we head toward this complex protein trial. The ability to eat Turkey would make it much much easier for us to feed our growing little dude.
Asher Benjamin and Lola Aisling
Infertility
PCOS, Progesterone Deficiency Disorder, Multiple Miscarriage
Clomid, Metformin, Ovadril, PIO, P17 Iron/Platlet Tranfusion
My Spring Babies!
Angel Baby Elisabeth Adelle April 2008 Asher Benjamin April 2010
Lola Aisling May 2014
This discussion has been closed.
Re: Asher Update (Allergy Related) Long
I'm glad Asher is doing so well. It is too bad that the turkey trial keeps getting postponed but at the same time it might be a blessing. The weather sucks for you guys and getting to a hospital would be difficult at this time. As for having another baby, give yourself time to process everything and then decide. No rush right now. You are only 30 so you have tons of time.
BTW - I am wearing a sun dress and flip flops!!
la di da di da da!!!
You just love to rub it in!
And yeah don't worry, like I said we are committed to waiting until he is 3 and in preschool to decide. We may change our minds back at that point if the road has been tough or if he loses ground in the weight department.
Thanks for the update, I'm glad he is doing so well, I pray that his trials start to go very well and whoever can't figure out how to wipe stuff down/wash hands will realize how big of a deal this is.
I have a cousin that is like A, he has gotten much much better as far as foods but it was a very long road. Good luck
I still need to write and get alternate ingredients, but I did forward the recipes to the allergist and nutritionist and I'm waiting to hear back to see what they think.
Asher has Primary Immunodefiency, which manifests in him as an Acute Multiple Protein Allergy. He is on Amino formula and medical food and we've been trying to find other things to add to his diet. Some of his allergies are life threatening, but not all. So its been quite a long road trying to weed out which is which and what are the safe foods.
I honestly don't know that much about it. Phill nixed it before we got into the fine details. From what I understand its a combination of drugs that they use for autoimmune disorders like lupus and injecting small strands of allergens and the allergen antibody from another person, and building on it over time to trick Asher's body into making the antibodies.
Oh ok. I would probably wait a little on that as well....especially if the other trials go well. GL!