Tuesday, August 12, 2008

so it's a true milk allergy and it's a true asthma

Yesterday I got a call from the pediatric allergist that they had a cancellation for 1pm today and if I wanted to, I could have it. Of course I said yes. We were to arrive 15-30 minutes early, but got my time all wrong and we got there right at 1pm. But funny how it all works, apparently my appointment was really 1:30. I guess they heard about me and my mommy brain. And we didn't leave the place until 5:30. Yup, we were there for 4 1/2 hours. Poor little Things.

The crying began at the very start when the nurse weighed them. Then we were ushered into the room where I was asked a heck of a lot of questions. An hour or so later, more people came (doctors and students) and there were more preliminary examinations. Then the pricking began. While Thing 2 was on the table with one doctor listening to her lungs and looking at her ears, I was sitting down with Thing 1. The nurse had drawn a line of letters on her whole back, then the pricks. Of course Thing 1 cried and cried and cried. To the nurse's credit, she did it super fast. When Thing 1 was done, someone put Thing 2 on my other leg. She cried and cried and cried, and Thing 1 cried. They both cried so hard, their noses started bleeding. After all the crying, I was left alone in the room "hugging" a baby on each leg. I couldn't really touch their backs.

Instantly, there were obvious reactions. When the nurse returned and measured the welts (if any), Thing 1's welt for the milk allergy was 9mm and Thing 2's was 8mm. This is actually very big! The only other reactions that were noted were for peanut (4mm).

The doctor said that around 4mm is really not considered 'true' at this age. But the milk welt being so big, it is a true milk allergy. The peanut allergy is noted and would be watched, but it's not enough to be worried about right now. So the girls were prescribed an epi pen, Singulair and antibiotic (apparently they have a sinus infection). Then she went on to the subject of asthma. She said with the risks factors of eczema, food allergy and family history of asthma, this is an asthma that must be treated, especially that the girls often wheeze. For the asthma, they were given Singulair which they are to take everyday for a loooooong time. If it doesn't control the wheezing, we'll have to consider a steriod by nebulizer.

After being shown how to use the epi pen, we were sent for blood work. The blood work is to put quanitity to the allergy and for the purpose of comparison a year from now when they get tested again.

The blood work. Well. The phelobotomist worked on Thing 1 first. I normally don't look at the needle when I get blood work done, but this time I did. I thought I should see the whole thing in case something goes wrong. The woman had to fish for a vein. She stuck Thing 1 and fished this way and that way. It was horrible. Finally the blood flowed, but then it stopped. Absolutely horrible. The poor girl is exhausted, sleepy and she has been through too much by this time. But finally it was over. Than it was Thing 2's turn. The woman exclaimed, "wow, they have the same vein", but yet she also had to fish for it. It was especially horrible. Thing 2 trashed and kicked and I had to really really hold her down. She was hysterical at this point but yet no blood. The woman took out the needle and said she wanted to try the other arm. Thing 2 kicked and trashed some more. The woman said, she doesn't like this arm, she'll do the first one instead. Finally, she got the vein. By this time Thing 2 was absolutely hysterical. By this time, I am so frustrated and felt so bad for the girls I was on the verge of crying.

I really needed another pair of arms today. Not because it was tiring for me, but because it was a horrible experience for the girls. They needed a familiar face to comfort them but there was no one. I did my best, but someone had to be put in the stroller to cry by herself so that I could hold the other one.

The day has been horrible and the girls faced it like little troopers. I'm glad it's over with, though the diagnosis has left me a little depressed. There's nothing like being made to carry an epi pen to shock you to your motherly core. I know it's not the end of the world. I just need time to process and to adjust.

We are to avoid any milk products for a year and then the girls will get another blood test to see where they are then. Having no clue about food allergies, it was another shocker to think that all we had to avoid was the word "milk" on the ingredients. I need to read up on a lot of information.

We were given this as a trusted source: The Food Allergy & Anaphylaxis Network

3 comments:

Anne said...

Hi!

I am so sorry you had to face the appointment by yourself. Also, the blood test should have been scheduled for another day. After going through skin testing, your girls should not have been through that. Waiting a week for the blood test would have been fine.

I went through a similar experience with my daughter. But I had just one. She ended up being allergic to dairy, egg, soy, peanut, tree nut, wheat and corn. True allergies for all. I felt the air coming out of me when they were reading out the list (not to mention the maybes that were going to be monitored).

Now when I go, I have two to deal with. And I need my husband with me (non-negotiable) to help out. We came up with ways of taking the mind off the pricking. For our oldest (4 1/2 now), we tell her they are drawing a race track on her back. She brings lightning McQueen and we pretend to race it up and down her body while waiting for the results. No crying! For the little one, we bring a portable DVD player and play his favorite Baby Einstein Video. No crying either. Another thing we have done is to have our oldest bring a stuffed animal and ask the nurse to pretend to test the animal for food allergies. She got a kick out of that!

Starting a milk (all dairy) free diet is a challenge. But once you get used to it, you will see that lots of alternative foods are out there. The terms used by manufacturers for Milk (dairy) are many. So consulting FAAN for navigating food labels is a great idea. I am webmaster for Loudoun Allergy Network, a local FAAN support group in Virginia, and we have reproduced the list on our website (www.loudounallergynetwork.org) under the Allergens button. You can also find sources of foods that are allergen free (products page) and allergen-free recipes (recipe page).

FAAN has local support groups in many states. You can look on their website to see if there is one near you. Meeting with others in your situation will be helpful.

Good Luck!

Anne Gibbens said...

I am so sorry you had such a bad experience with allergy testing. I had a similar one with my daughter when she was first diagnosed, but I only had one child to deal with. I cannot even imagine having to deal with two!

Now that I have a second child, I go to testing with my husband. One parent for every child being tested. I have come up with little tricks that help my kids get through it. For my oldest (she is 4 1/2 now), I tell her the nurse will be drawing an obstacle course on her back. She brings Lightning McQueen & friends and we race her cars all over her body (minus back!). For my youngest (18 months), I bring a portable DVD player and play his favorite Baby Einstein video (you can use a laptop too). No crying for either children.

As for starting a dairy free diet, its hard at first, but you will realize there are many options out there that are dairy free. The best product we use: organic enriched rice milk (they make plain, vanilla and chocolate flavors too). They make ice cream too! You can find good soy and rice cheese substitutes.

The hard part is trying to get a complete list of terms manufacturers use to describe milk. FAAN has a list on their website. I am webmaster for a local Virignia FAAN support group and we have the same list on our website too (www.loudounallergynetwork.org) under the allergens page. We also have allergen-free products list, restaurant guide and allergen-free recipes.

You can find a local FAAN support group in your area on the FAAN website. Hopefully, you can build a support network for yourself as you begin to deal with your children's allergies.

Another helpful website is the epi-pen manufacturer website. They have a short training video that I watch once a week. in over 4 years now, I have never had to give the epi-pen. So I have to remind myself how to do it in case of an emergency.

Good Luck!

/Anne

Heather & Chaos said...

Wow. I'm so sorry you had to deal with all this by yourself. What a day. I have no advice for you as I haven't had to deal with this but know that I'm thinking of you and the Things. {{{HUGS}}}