http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=9849&start=1 (http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=9849&start=1)
Hopefully the link above from the old site works for anyone who wants more details. But a quick summary: he started the baked milk clinical trial at Mt. Sinani in NYC in 2009. He's eaten the first year baked milk in the form of a muffin, then the next year pizza, then the next year mac and cheese, then finally, he just passed regular ole milk by drinking a cup of it!! You could either be put on a six month or a year rotation, and he was on a year, and I understand he took longer than many other patients, which really doesn't matter, just giving information. Each year we would go home and he would eat the equivalent of what he passed in milk protein on a daily basis.
I'm so grateful we could participate in this study, so he can now add dairy to his diet! Since he's still allergic to eggs, peanuts, tree nuts, and soy, we still avoid many things, but if I had to pick one to shake, dairy would be it!
He's been such a trooper during all these trips...they used to put in an IV in case emergency meds were needed, which they stopped doing last year. Now they just take blood and do skin tests. He just holds out his arm, and they do what they need. Mt. Sinai has also been absolutely wonderful.
We need to go back in three months for bloodwork, and then he's supposed to go off dairy for one month, and then be re-challenged. I'm not thrilled about the last part, as he eats pizza all the time, and it will be difficult...but they explained it's for his safety. They want to make sure if he ever removed dairy from his diet, that he won't start reacting again.
Here's a happy mother/son moment: he said (and I'll never forget this) "Mom thank you so much for finding out about Mt. Sinai and taking me there every year. I'm so happy I outgrew milk". ;D :coolbeans: :heart:
:thumbsup: :happydance: Such awesome news!!!
FANTASTIC!! :thumbsup: ;D :thumbsup: ;D :thumbsup: ;D I am so happy for him and you! When I get a chance I will email you. As you know, we tried milk densitization, but dd was never in a study and the allergist who did it was not very reachable (not our regular allergist, someone who our regular allergist referred us to). Dd had symptoms, allergist did not return calls, and we gave up. Now I am motivated again, although dd says she is too busy with high school committments, AP exams, etc. You really did it at the right time, before your ds is so involved with other things that there is no time for the appointments.
CONTGRATULATIONS!!
Wonderful wonderful new. I am sitting here crying tears of joy. What amazing news.
Oh, that's wonderful! Congratulations. I just told my husband and he was amazed, too- and thought that maybe that could be one of our guys someday. What a road it must have been, but wow... milk. Yay for you guys!
Great News!!! Thanks for sharing!
Thanks everybody! ;D Thanks for being happy about our good news, and I hope it gives you hope that your kids with milk allergies can someday outgrow! It's been such a roller coaster these nine years...in the beginning thinking by 3 he'll outgrow, then by 5, then starting to give up hope, then enrolling at Mt. Sinai and making the yearly trek, to here. The study has been very successful, and I'm thinking will be replicated elsewhere based on it's success. Fingers crossed it's somewhere you can participate!
Thanks for cheering me on mfamom and venturing into the milk allergy area :) Carefulmom, I'll look for your email.
Hurray!!
This is fantastic news! Just curious-- did they advise you to continue dosing?
Or is he actually "resolved" rather than having "improved tolerance" of some sort??
It's absolutely fantastic that he was able to drink actual milk. WOW.
It does more than give me hope it gives me a hand in trying to figure out how we can approach a medical path. That is so wonderful to hear. What a victory.
CM: They want him to continue all dairy in his diet for 3 mos, then take all dairy out for a month, then re-challenge him to make sure he'll do ok not consuming dairy on a regular basis if he chooses to. What's nagging at me is what if it sets him back... He eats pizza and mac and cheese at least a few times a week. I don't want that to change....
Glad you liked our news twinturbo!
Yay, Yay, YAY!!!!!
So happy for you and your son! :)
Congratulations!!! I'm so happy for you guys!
Fantastic news! Unbelievably amazing!! I had tears reading your post. Congratulations! :happydance:
Just reading this now - many congratulations!!! I hope you celebrated with a big ole ice cream sundae.
I actually logged on to let folks know we have a milk challenge on May 18. Soooooooo nervous. But you are definitely giving me hope!!
Thanks you guys!!
Good luck suev!! Let us know, fingers crossed!
Oh congratulations!!