National Jewish/Denver – Day One

Today was our first day of treatment here at national Jewish health.

The day began with a physician's assistant, Elizabeth - taking a meticulous history about Lou's symptoms and diet.

Next we met the Dr. on duty, Dr. Spahn. This is how he looked to 'Lou and I:

and this is how my older boys back home think of him: 

He was kind, patient, gentle, soothing and very reassuring. 'Lou liked him instantly. He was there so much that 'Lou is sure he lives there.

We knew that we would be spending this first night in the hospital, so we were sure to bring the jammies and tube socks for the wet wrap treatment we were told to expect.

Lunch was a little tricky, as they do not have very many options that meet lou's restrictions. In fact, I have to admit that I found the printed menu to be somewhat shocking for an allergy hospital. It consists of pizza, hot dogs, milkshakes, cheeseburgers, bean and cheese burritos and other dairy and allergen- laden options. Gluten free items are not even listed on the main part of the menu – you have to call down to the cafeteria and speak to a cook to make a special request for them.

After lunch, he was given his first "soak and seal". He was fairly cleared up until the trip here. Exposures on the airplane and in our hotel room caused him to flare up. I had been hoping to decline the steroid application during the soak and seal process, if his skin was clear enough.

For the first one, the doctors agreed to let me try nothing but our raw Shea butter. If it worked well enough, I could hope that we would not need topical steroids at all.

However, his skin was cracking and peeling and the Shea butter was not enough. For his second soak and seal, we did mild steroids topically.

Staff at national Jewish plan and present an itinerary every day for the parents of their patients. Today mine included a class on atopic dermatitis.
I was surprised that more information on food allergies was not presented.

When making arrangements for dinner, I learned that there is a refrigerator in the common eating area of the patients – only floor of this hospital and that parents may bring their own food into the refrigerator here.

To my great surprise, there were no allergen restrictions on the foods brought in whatsoever. Families eat dairy, eggs and even nuts in this area. In fact, food trials are carried out in this spot and I saw a bag of nuts right on the table before dinner time today.

The mother of an anaphylactic – reactive peanut allergy child in me was aghast. I had to suggest to myself that perhaps most atopic – reactive children do not also have anaphylactic reactions. Or the staff here are a lot more careful than appearances would indicate at first glance.

The plan is to continue doing the soak and seals three times daily until they get his skin perfectly cleared up.

 In the meantime, I will be seeing an eczema specialist, a food allergy specialist, a psychosocial development specialist and attending classes to educate myself on Lou's condition.

Once his skin is perfectly cleared up, the food allergy testing begins. After the test results are obtained, we will do actual food trials.

The gist of the philosophy I am picking up here is that eczema is the primary diagnosis for kids like 'Lou and food allergies can often be mistakenly blamed.

I am almost being guaranteed that we will discover that many of 'Lou's restrictions are unnecessary. False positives are extremely common with children who have skin as bad as 'Lou's.

So the plan is to get his skin perfectly cleared up and teach me how to keep doing the same thing at home. The next step is to show that we were restricting things we really did not need to and begin feeding him allergens we used to withhold.

This part of the hospitalization thrills me as much as it terrifies me. To think that they might actually try to feed him dairy – which he has never had so much as a single crumb of in his life yet! Or egg, which he also has never so much as tasted.

When you have to eliminate so many allergens so religiously for so long, there is almost a brainwashing effect that has to take place. To think of anyone ever giving your child forbidden foods almost feels like sacrilege! I am working very hard to overcome my mindset and try to expand it while I am here.

I really and truly hope that we can add some foods back into our diet. However, it has been my experience that reintroducing an allergen can take several weeks to cause Lou to begin reacting. Not to mention the daughter I have who passed a food trial with flying colors and then became re- allergic to peanuts to an even greater and deadlier degree than previously!

One of the best parts of this trip so far is meeting the other parents. We have the same sense of humor about our children's issues and the impact it has on our family and finances. We have had the same experiences with doctors who don't listen and don't understand – or don't seem to want to.

For day two, I've been told that I can get some help with finally getting my allergy child out of my bed and learning to discipline him because so many parents are over-permissive when their children have been this sick for this long.

Please send thoughts for patience, tact, and the common sense to shut my mouth if I'm outnumbered.


Nancy Cuevas Weimann said...

((((( hugs )))))
sending healing thoughts and prayers <3

Unknown said...

I should be surprised about the food choices and nuts in the hospital. But something I have realized as a mother of a child with severe food one fully understands until either you or your child is effected by food allergies...even the doctors. pathetic...but true.

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