It's a wonder what in the world we have been doing with Alex all this time. We have recently found a new component to Alex's story. On August 5th, Alex had his routine check up with his GI doc, and they decided to do an allergy test (per my request). I just wanted to see if his diet had annything to do with...anything. Apparently, it does!
Alex is allergic to wheat, milk, sesame seeds, and egg whites. That explains the demanding shake of his head and avoidance to eggs in the morning. I just thought he didn't like it and needed to be coerced...oops! Luckily his allergies are on the low side of the allergy scale (whatever that means), and he has not had a horrific anaphylactic shock moment. However, here is what concerns me: I have fed Alex wheat products and milk products every day of his entire "food" life. Why have there been ZERO symptoms? Those questions were not answered by the allergists that we visited this past week. What I got from him was that Alex has not shown the basic symptoms of vomiting, hives, etc. while eating these foods. Since these were not apparent when he first ate the foods, we have probably created a tolerance to them. Here is where I am lost. I have had a few doctors tell me that if you don't see these inital symptoms then there is not an allergy. So, how do you get a test that says there is an allergy and even gives you a level of seriousness? What is it doing to his body if the "normal" symptoms are not showing up on a daily basis? Here is where I figured out the title to this little ditty; the conundrum of the body. It baffles me! The doc still has to look at Alex's allergy tests that were taken by Cook's GI to help us further. So we are back to the words that I hate...let's just wait and see!
In the meantime, we have put Alex on a wheat, milk, sesame seed, eggless diet. Boring and super expensive! I feel bad for Alex because he really wants those things he use to eat, but we are adapting and making many meals for him daily to help create something worth eating! I wish we didn't have to do this, but I want to make sure that we are not poising his system.
We have also added a few new specialists to our list. We currently have seven and are adding two more to the mix. I have many eyes on my little boy! On September 7th Alex is going to have a big day. We have three appointments that I am not sure we can realistically get to on time. I was shooting for one day off versus multiple days, and we will see how it goes.
So, first up on the agenda is his genetics appointment. We took a genetics test almost two years ago and everything came back normal. However, when meeting with our neurosurgeon (who did Alex's tethered spine), he suggested to do some new things. So, we are going to do some further research with the genetisist. He will analyze his testing, evaluate Alex, and give us some suggestions or advice. Apparently in the field of genetics, there is a lack of understanding in all that encompasses genetics. When you get a test back that is negative, there are still possibilies that you fall into the rhelm of a disease. So we are going to purpuse that avenue. We are also going to see our ENT as a follow up. I am excited to see this guy because Alex has had two ear infections since the placement of the long-term tubes. He growls when he sleeps and he tends to have some problems with really think snot (for lack of a better word). I am curious to see what this doctor has to say.
After the ENT we head over to the orthopedic surgeon. Alex's feet are, interesting! They lack arch support, they are turned out, they are fatty, and they turn out at the knee. The toes have a funny ball at the base of the foot and knuckle of the toes. I have notice his weird tootsies, and when we saw our neurosurgeon (catching on to the fact that there is one doc in our corner to solve our mysteries) he told us that it might be worthwhile to see the orthopedic guy.
So Alex's time has come again to explore the world of medicine, and it happens to be right when mommy's school year is starting and we don't have free days to take off for appointments. Who cares though! I want to see what others have to say so we can add on to Alex's adventure.
On a side note, Alex's PPCD school starts next week (August 22). There can only be a maximum of 10 students in the class with one teacher and two aids. This is our year! There are only 3 students, including Alex, in the class. I am so excited about the one on one attention he will receive!
I will update you on Elle and Matt at another time. This was just an Alex update! :)
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2 comments:
Wheat,eh? Maybe its a family thing! I don't know much about wheat allergies, but with Celiac Disease the symptoms can be hidden or can be dramatic and obvious, or can even seem completely unrelated (anxiety, restless legs, muscle weakness, etc) . Glad to see that you are investigating all the avenues you can. Keep us posted. Big hugs to all of you...love, Aunt Melissa.
I continue to be so inspired by your positive attitude, strength and perserverance to get to know your little man better.
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