Comments on: A cure for milk allergies? Part 1: Meet Brett, whose severe allergy to milk may be cured

By: Rowtie Singh

Rowtie Singh — Wed, 20 Oct 2010 20:47:00 +0000

what were ur symptoms did t include mouth ulcers

By: Robyn Nasuti

Robyn Nasuti — Sat, 25 Sep 2010 01:29:00 +0000

Hello friends,
I’ve received some inquiries so I thought I’d give you an update. I am happy to report that a year later, Brett is doing great. He is still eating dairy products everyday to keep his tolerance from slipping. But funny enough he doesn’t like the taste of cow’s milk so he gets his dairy from other sources like cheese & ice cream. We got the go ahead from his Doctor in August to begin desensitizing to egg (in baked products.) He is doing great although still gaining weight. He’s gained about 15 pounds since the study began 16 months ago. He is doing great with the egg products and if it is successful he will only have a peanut allergy left. How far we’ve come in 12 years.Thank you to all the wonderful staff at Children’s for granting us our wish. We look forward to
hearing more success stories in the future.

By: mpaxton

mpaxton — Thu, 05 Aug 2010 17:43:00 +0000

You know, sadly, you here so much about the “anaphylactic” food allergies, but not that much about “delayed” food allergies…My son was 5 years old when he suddenly came down with the worst case of “tummy virus” (or so we thought) that I’d ever seen…of course I took away the “tummy akers”, milk, cheese, spicy, etc. just like my mom and grandma did for me when I was little and he would get better. Within a day or two of going back to eating “normally”, he was back in the bathroom…My son had 2 open heart surgies by the time he was 18 months old and had had his tonsils and adenoids removed and ear tubes placed at age 4, so needless to say, we’re very leary when he gets sick…a panel of blood tests revealed no “anaphylactic” (IgE) allergies, but a myriad of “delayed” (IgG) allergies – also called sensitivities…milk was at the top of the list…we’ve tried our best to keep him away from it…but every once in a while his grandma “forgets” and gives him corndogs – ya know, with butter”milk” breading…This past July 4th, we were faced with a 6 year old who refused to eat ANYTHING…He said he felt like he was being choked, like it was getting stuck, but was fine with drinks…Barium xray showed nothing, but thanks to the internet, I was able to guide me and his doctor in the right direction; a CBC revealed, high counts of eosinophils – a type of white blood cell that is the “allergy reactor”…without the biopsy we can’t yet be 100% sure, but we believe he has what is known as Eosinophilic Esophagitis, or “allergic esophagitis…The perils of a food allergy child never really end…sometimes they just subside (sometimes for 70 or 80 years…a human lifetime)…sometimes, they get worse…

a note to “Grandma” I understand completely about small town WV and limited Medical resources…food resources sucks too!!!

And to Sarah…Right on girl friend…I’ve been wishing for years that they would have help for families like ours…Every day families, with special FOOD needs kids…but unless you’re below the poverty level…you’re screwed!!!

God Bless to the Nasuti’s…I will keep you all in my prayers….

By: Robyn

Robyn — Tue, 01 Jun 2010 23:02:00 +0000

We had to choose which child to put in the study. At teh time the study begoan they did not want siblings. We will wait until he is older and understand the benefits of the study. He is 5 1/2 and claims, “I don’t want any shots like Brett.”

On a separate note, Brett is doing great! He loves eating pizza and ice cream and has gained 14 pounds since the start of the study more than a year ago.

By: Aryn

Aryn — Tue, 01 Jun 2010 19:46:00 +0000

Robyn,
I was just curious, has Nicholas able to try the study?

By: Aryn

Aryn — Tue, 01 Jun 2010 19:44:00 +0000

Hi Grandma,
Allergen food definitely can cross over. My neice had bad eczema while breastfeeding, we didn’t know that my sister’s food intake was what was causing it. When we found out she was so highly allergic to dairy my sister cut it out of her diet and the eczema subsided. Your daughter definitely needs to find foods that she can eat that your granddaughter isn’t allergic to. It may be harder for her to find a “Whole Foods” type store in her area, but if she can make the trip to the closest one she might find some things she can order and get at home and not have to travel. A nutritionist is definitely a good option and actually going and meeting one is best, but even a consult via phone or email might help her with food ideas. Also when your granddaughter is trying food, remember that it may not be something that a non-allergic person would eat if given a choice, when it comes to babies/kids they don’t know the difference between foods like mozzerella cheese vs. soy cheese substitute because they’ve never had them so keep a smiley face and let them decide whether something is good. Best Wishes and Good Luck to them.

By: Aryn

Aryn — Tue, 01 Jun 2010 19:31:00 +0000

Wow you must be very ignorant when it comes to allergies. Do you have any clue how many things contain milk and don’t say milk? There are over 30 words that mean milk and don’t have any form of “milk” in them. I agree with Sarah that you should try going a week without anything containing milk and see how hard it is. My neice is highly allergic to anything dairy. If someone has touched anything dairy and comes into contact with her skin she gets hives. If she ingests we are headed to the hospital. FDA guidelines say it the container is supposed to be clearly labelled if it contains milk, but a lot of times it doesn’t. Gerber’s food doesn’t have such labels and since their ingredient list written in such a small font, my sister swore off Gerber altogether. You can also have your allergic child eating one type of a specific food and switch brands and the new brand happens to contain a dairy product. Oh and make no mistake Non-Dairy does not mean it does not contain a dairy derivitive. I applaud Robyn and Brett for doing the trial study and actually overcoming the allergy. That’s amazing…Congratulations.

By: Anonymous

Anonymous — Thu, 29 Apr 2010 11:38:00 +0000

Hi Grandma,
I was lucky to work with a great nutritoinist at Children’s. I kept a bland diet chicken turkey rice beans and salads while nursing. It was worked for me. We made sure he had the right amount of variety of foods and nutrients. I bought a fry daddy and fried broccoli, tofu and my own foods to make sure he got the right amount of fat. We made rice and beans and tofu and gave them funny names so he would try them. We had hoo hoo sticks (stirfry tofu) that everyone loved. Today there are many gluten free mixes that can be made into muffins, cakes and more. We made soups from what ingredients he could eat. Have her get a good book with recipes and then fill in with the ingredients he can tolerate. Find a good nutritoinist who can make sure she is getting the right mix of foods. Good luck!