May 18
We went to a nutritionist and allergist #2 at Mount Sinai. Since we were there already for the nutritionist, we decided to review TJ’s latest blood work with her. It was an all afternoon visit, getting there around 2 and not getting home until after 7. However, we got a lot of promising, encouraging advice and guidance.
1) To start, the next step was to ask our Allergist #1 to do a soy milk challenge instead of coconut milk challenge on this Wednesday (TOMORROW!!!! ugh!!!) This was because Allergist #2 is 99.9% sure he will tolerate soy which will open up his diet a lot! Soy was a 1.1 (level 2 allergy) and coconut milk was a 0.6 on allergy scale (level 1 allergy). However, she said kids pass the soy milk challenge with a higher number than 1.1 which means they can drink and eat soy products.
2) Allergist #2 also said that it is a great sign peanuts, soy, and sesame all went down. Once again she thinks wheat and oat ( gluten ) may not be a true allergies and instead TJ may tolerate them. After a soy challenge, she suggests we line up a coconut milk challenge and wheat one. Then if he passes the wheat, she advised to set up a baked egg one. (Egg is his second highest allergy.)
3) She wants me to continue to add wheat to diet since all I have added back since December is regular wheat pizza from our favorite pizzeria nearby and I only eat this once a week. She also told me to add soy back to diet.
4) Milk/dairy allergy is bad. =( She doesn’t really think it’s due to contact or exposure since we are both strictly avoiding. Instead, she thinks the increase from about 17 (level 3) to 53 (level 5) has more to do with it being his greatest allergy. Since TJ has grown a lot since December, his body is producing more ige antibodies for it. We need to be careful with dairy/milk residue and products touching his skin at day care or even kisses because if he gets hives from it it can cause more of an increase. Also he should avoid places like Starbucks and pizzerias that have steamed or airborne dairy.However, she also was very positive when she stated that he will probably outgrow dairy because most people do but it will probably take longer like maybe not until he is older than five. There are many studies too like a milk patch one that if need be, he can participate in to decrease allergy when he is a bit older.
5) In meantime, the Mount Sinai nutritionist does suggest we use an iron supplement for now even though the anemia is minor and retest iron in three months. This is not what we had planned to do with pediatrician’s help.
6) The nutritionist also provided many good brands and products for allergy free products like pancakes and waffles, etc …Some of these include Orgra Crispi Rice bread, Authentic Foods Rice and Corn Flour, Arrowhead Mills Buckwheat Flour, King Arthur, Brothers All Natural and Cherrybrook Kitchen. I will post more about these products once we purchase and try them out.
7) The next time we get blood work will probably be in October/November to test levels. Allergist #2 gave specifics of what to test for like peanut components, casein, and whey proteins. These will give a better understanding of his peanut and dairy allergy and they will be able to better predict his chance of outgrowing. A casein allergy takes longer than a whey protein allergy to outgrow.
We will also give Culturelle probiotics twice a day instead of once and follow up with both of them in four months
This sounded great until we reached out to Allergist #1 and our pediatrician about all of this. Here is where it all becomes a tough call…We have two conflicts.
1) SOY VERSUS COCONUT MILK CHALLENGE
– When we asked Allergist #1 about switching, he said, ” I estimate 50/50 chance of passing soy. We can certainly try it this week. If there is a reaction, I may need to give him an injection of Benadryl or epinephrine. It is not necessarily dangerous, but I just wanted you guys to be mentally prepared for the potential risks.”
– That is much different that Allergist #2′s outlook of 99.9% chance of passing with his level.
2) IRON SUPPLEMENT OR NOT
– Our pediatrician who we LOOOOVE does not agree with an iron supplement. Since his level is only 9.9 and he is not symptomatic, she suggests rechecking in a month or two and agree to an iron supplement if he is lower then. She explained that iron is absorbed much better with foods rather than a supplement. She even discussed it with her colleague and he agreed with her.
– The nutritionist provided this though. http://www.aafp.org/afp/2011/0301/p624.html
It is 7:30 on the night before TJ’s 8:30 am food challenge and we have no clue what to do. I just pray that the right choices are made clear to us.
SIDE NOTE ABOUT DAYCARE/LACK OF UNDERSTANDING OF THE SEVERITY OF FOOD ALLERGIES:
When I informed TJ’s teachers that he was going to be out tomorrow due to his first food challenge of coconut milk or soy milk. One of TJ’s teachers asked me, “Oh he can’t have cow’s milk ?”
Mind you, this is after I have been constantly keeping the teachers and office staff informed and updated about TJ’s allergies and levels. I have spoken to each teacher individually in the past. In addition, I recently explained to them the severity of the dairy allergy. I also gave the office staff a print out about the signs of and steps to take with anaphylaxis, asking them to hang it in his classroom. It is still not hung…I will be adamant about this once we are back at work and day care on Thursday. I will be “that mom” because if I’m not, who else will have his back.
Praying for answers as I struggle to smile on but I know that I have to for my little guy who still smiles on and on even when stuck in city traffic …
The Art of a Messy House 