Sunday, August 30, 2009

An email from CH in Boston

The email below was sent to me by a writer for Children's Hospital in Boston. I am looking forward to watching the series of videos, this could be a big break through for food allergies.

Dear Jeanette,

I came across Mom to Food Allergy Kid while researching children with food allergies. It looks like a fantastic resource for families dealing with similar issues.

I’m a writer at Children's Hospital Boston and we just posted the first in our series of videos about our first patient who is going through a milk desensitization study to potentially cure his severe milk allergy. Here is a link to it, in case you could share it with your readers:

Annie Cardi

Saturday, August 22, 2009

What's that?

I was eating some cheese and Nathan said "What' that mommy?" I said "Cheese." Before I could say anything else he said "cheese, I am allergic." This is exciting because he is learning about his allergies and if someone tries to give him something he can tell them he is allergic.

Sunday, August 16, 2009

Allergy Free Chex Mix Buddies

A good snack because it has protein and can be made allergy free. I took the Chex mix recipe and made it dairy, peanut and wheat free.

9 cups of Rice Chex cereal
1 cup Enjoy Life dairy free chocolate chips
1/2 cup of soy nut butter or sunflower butter
1/2 of dairy free margarine
1 teaspoon of vanilla
1 1/2 cups powdered sugar

In large bowel measure, cereal; set aside
In a 1 quart microwavable bowl, microwave chocolate chips, soy nut butter and margarine uncovered until mixture can be stirred smooth. Stir in vanilla. Pour mixture over cereal stirring until evenly coated. Pour into 2 gallon resealable food storage plastic bag.
Add powered sugar. Seal bag; and shake until well coated. Spread on wax paper to cool store in airtight container or refrigerator.

Wednesday, August 12, 2009

We survived the State Fair

Today we took Nathan to the State Fair which we try to go every year. Before allergies we never thought twice about it. Every year as he is getting older it is getting more difficult, I am more nervous and have more anxiety.
First, the animals. Nathan is allergic to cats and dogs and once at the zoo and he pet the sheep and lambs he had a horrible allergic reaction so I didn't want him touching any animals at the fair. When we walked through the animal barns every 5 minutes I said "just look, don't touch," "don't touch anything." I did notice he was scratching his hands without even touching anything. When we went through the cow barn and how milk was made I was really nervous because he is so allergic to milk. He does love looking at the animals.
Second, was the food. I fed Nathan a sandwhich on the way to the fair so then he could just snack at the fair. It is so hard to find items that he can eat and then we worry about cross contamination. Our first stop was corn on the cob. I told the girl no butter, allergies. And she said she would take off her gloves that have butter on them and no butter would touch his corn. That was so nice of her and no butter touched his corn. Then we got him some french fries and I asked the guy over and over if they used peanut oil and if the fries were made of just potatoes, no seasoning. He said "no peanut oil, pure potatoes." We also got him a slushie. Then there was the food we were eating, he sees us eating foods that he can't have and then we have to tell him he can't have it, so hard!! So we have to sneak food when he isn't looking.
Nathan rode a couple of kiddie rides and he had fun and wanted to go on again and again. He jumped in the inflatables and loved to watch people

Allergy test results

January 2008 v.s. August 2009
Egg: Was: > 100 Now: >100 (Still high, the highest)
Casein: January 2008: 45.3
August 2009: 10.9
Was 37.6 Now: 24.5 (Improved)
Wheat: Was: 52.4 Now: 24.6 (Improved)

The good news is: Milk, Wheat, Peanut numbers went down.
The bad news is: Egg white and yoke has stayed the same.

To do a food challenge the allergist wants the numbers to be < .35

The test he just did he only did the milk protein not casein but it baffles me that milk is that low -I mean, come on - remember the bad reaction to milk at dayare back in March? There is no way his milk is that low.

How were we going to do a food challenge for wheat back in April at another doctor's office when wheat is higher then milk and he was just recently exposed to wheat with no reaction.

No food challenge with this doctor in the near future, off to find another doctor or go back to the one who tried to do the wheat challenge in April.

I am confused and frustrated that two different doctor's and two different opinion. So when you go to get a second opinion and it is different, which is correct?

Saturday, August 8, 2009

Allergy walk 2009

This morning was the annual allergy walk in Madison, I really wanted to go but it was raining and we didn't know if it would stop. I would have went in the rain but then Nathan was getting cranking so we decided not to go.

I really hope to make the walk next year.

A bag of chips

We have a very nice neighbor who works for a local chip company and he gets free bags of chips. The other day he stopped over with a bag a Cheetos for Nathan and gave him the unopened bag. I then told the neighbor that Nathan can't have the Cheetos, that Nathan is allergic to milk and cheese and the Cheetos. The neighbor felt horrible and my husband jumped in and said "I like them, I will eat them." I told the neighbor that is was fine, you didn't know - if you want to get something for Nathan, he can have plain potato chips or Fritos."

The next day our neighbor came over with a big bag of Fritos and apologized over and over. I thanked him and told him there is no need to apologize.

I don't want people to apologize for my son's allergies. Really no big deal.

Friday, August 7, 2009

Daycare gave Nathan two pretzels with wheat

At 3:45 daycare calls me and to tell me Nathan ate two regular pretzels, NOT wheat free. She said he is not reacting and asked I wanted her to give him Benadryl. I said if he has no signs of an allergy attack then she didn't need too. I asked her to read the ingredients, "was there any egg or milk in these pretzels?" She said "no, there wasn't." I said "if you see one little hive on him (check his whole body) or any other reaction, give it too him and call me." She said "ok, we will call you if anything changes."

I arrive at 4:45 and Nathan is happy as can be and playing. He didn't seem like he had any ill effects from these pretzels. I said to the owner "are you sure he ate pretzels with wheat", "was wheat the first ingredient?" and the owner said "Yes". She apologized many times and said there had a lot of kids in his classroom and didn't exactly say if Nathan was given the pretzel or if Nathan took another child's pretzel ,which I don't think he would do.

I really wasn't mad, I told her she was lucky it wasn't a food that would have a more severe reaction like milk, egg or peanut. She said "oh no, we are careful". Um yeah.

Could it be true? Could his wheat allergy be gone, back in April we tried to do a food challenge with wheat because his numbers were down. Nathan just had another blood test done last night so I really can't wait to find out the results, especially the wheat.

Thursday, August 6, 2009

Allergy appointment

Tonight, we went back to CHW for an allergy appointment we haven't been there in a year or more. We have been going to a different allergist but feel she didn't do well with children.

We went to the brand new clinic that was huge and beautiful, just opened this month. Nice and clean and had that new smell. Well looks are not everything, they were slow. They were still trying to figure out stuff and there was a very few patients and we waited and waited.

Well, I really wasn't impressed with the allergist tonight either, he did so much small talk and talked so much about Asthma which has been a lot better. Then he was amazed that Nathan still had tubes in his ears, he wanted our next appointment to also be with the ENT. What about the food allergies??? I want to know about them. I asked him to do a blood test, he agreed and said to come back in October, October I don't want to wait until October. The blood test results don't take that long and if he was close to losing the wheat allergy then let's do a food challenge and get on with life. He said to call in a week for the results.

Why is this so hard??? Why can't I find a good allergist? My husband feels the same way.

Allergy Support Group

Tonight was our monthly meeting and it was a great meeting. I felt like I got some ideas and information as well as helping out other moms with information.

One of the topics was about a Dr. in our area who does a sort of "alternative medicine" the allergy drops and they don't costs as much as I thought. I called this morning to get an appointment but can't get in to see him until October.

Monday, August 3, 2009

Nathan's 3 year Dr. appointment

Age: 3 years
Height: 35 inches
Weight: 25.5lbs.
Head Circumference: 14.9

He is growing, buy slowly.