National Jewish/Denver – Day Two

For day two, I was looking forward to our first meeting with multiple doctors.

'Lou slept in the wet wraps all night long and awoke this morning in the hospital with much improved skin. Our nurse, Eileen - was wonderful with him and so patient with my repeated fretting over everything from the mild steroids on his skin to using our own sheets from home on the beds. Her mild manner and supportive help showed me more than any words could have, that nothing was going to happen here that I was opposed to.

The food service manager and I are learning our way around each other's needs and limitations and have established a mutually satisfying relationship for getting appropriate food to 'Lou and I.

 She makes fresh fruit smoothies for us every morning and I request that she drop in a handful of spinach leaves or honey to increase the protein & calories and she does so with pleasure. It takes so much stress off this situation to know that we have a safe food source ensured!

The hospital utilizes a computer system to log each child's specific allergies and intolerances. When you call the kitchen and give your child's name, they automatically see the restrictions your child has and prepare their food accordingly. Debbie and Margaret bent over backwards to keep up with 'Lou's insatiable food demands and their role in making us feel at ease while here is possibly even more vital than any of the medical staff!

After removing his wet wraps and moisturizing Lou thoroughly, we had breakfast and then waited for our first consult with Dr. Leung – the hospital's eczema specialist.

While waiting, we had to go get his stats. Between July 9 and today, he somehow lost more than 1 pound. This fits with his usual pattern of only gaining well when he is extremely flared up. He has not been very flared up at all for the entire month of July. I am not going to feel discouraged until we get home and I can compare his weight on the same scale he usually gets checked on.

His blood pressure was also a little low, which should tell you how comfortable he is in a hospital setting!

Dr. Leung made his appearance before 9 AM. He examined Lou and noted that his eczema is not the typical pattern for a child his age. He also did not feel that Lou's growth chart made any sense, given how well he eats and how well we eliminate his allergens.

He said that 'Lou's skin problems appear to be more caused by extreme dryness than actual reactions or flareups. He recommends that we discontinue the minimal use of topical steroids within another day and go exclusively to sealant – type moisturizers. He was also adamant that oral steroids should never be used to treat or manage 'Lou's eczema.

He also recommends that we check 'Lou's cortisol levels and check his skin for yeast.

His final recommendation is that we check 'Lou for a genetic disorder called filaggrin null mutation. It could potentially explain the excessive and severe food allergies, the constant flared state of his skin with unusual presentation and his growth problems. Children with this disorder at 'Lou's age need to get 2100 calories per day.

All roads seem to lead back to a genetic disorder with 'Lou. We will do the test for it tomorrow and should know within a week. I am not going to invest much time or energy in this possibility until we get a test result that indicates I need to, as we've been down this road more than once before - and he never has what they think he has!

However, Dr. Leung did say that this genetic disorder is primarily found in very fair haired and fair skinned people with Northern Irish and/or Scottish descendancy. He seems sure that 'Lou has this and sent me a big stack of recent research on it.

Loss-of-function variants in the fila... [J Allergy Clin Immunol. 2011] - PubMed - NCBI

Filaggrin in atopic dermatitis. [J Allergy Clin Immunol. 2008] - PubMed - NCBI

Filaggrin Mutations Associated with Skin and Allergic Diseases — NEJM

Eczema—Eczema Genetics and Filaggrin Gene

In the meantime, it could also explain the abnormality 'Lou is experiencing with his foreskin. Dr. Leung wants us to see a urologist at Denver Children's Hospital while we are here, and has warned me that a surgical remedy might be necessary. I am way too overwhelmed and frankly devastated about this possibility to even process it right now.

My feelings aside, it was a wonderful breath of fresh air to have a specialist in a hospital setting really spend time explaining and speaking frankly to me. I definitely got the feeling that he spent a lot of time researching 'Lou's history and all of the medical records I provided.

We had breakfast and did another wet wrap on 'Lou while we waited for our appointment with Dr. Fleischer, the hospital's food allergy specialist.

We were able to wash a couple of loads of laundry, which is another perk that is worth its weight in gold.

Dr. Fleischer is one of those doctors of the persuasion that eczema can cause many false positives on food allergy tests.

He says he is only going to assume that 'Lou's very worst reactions and highest test scores are true allergies: egg, dairy, peanut, some tree nuts and sesame.

The rest of the foods that we are eliminating, he feels are fair game for food challenges. He says time and time again the families of children like 'Lou eliminate a vast number of food options unnecessarily.

We decided that I would stay late today and we would fast track doing a skin allergy test before deciding which foods to food challenge for Lou – as soon as tomorrow!

If we are really going to try giving him corn and beans and lentils and soy and wheat, I want to do it as soon as possible so we have as many days as possible to see any delayed reactions.

Lou's skin is not quite perfectly cleared up yet, but the skin testing still only showed moderate reactions to most legumes, beans and some nuts. I have a feeling the doctor will want to challenge them tomorrow, as well as corn.

I am very excited – if there was ever a time and a place to absolutely confirm or rule out a problem with certain foods, it is now. Additionally, another fabulous opportunity available by being at this hospital is the chance to bring in specific items from home and have them tested.

I brought dog fur and dander that I carefully combed from our two great Danes. The doctor also requested a soap nut and my raw Shea butter to test, as well. He will perform another skin scratch test with these items sometime this week.

He agrees that he is not happy with 'Lou's growth charts and would also like to see him consuming 2100 calories per day. Even if 'Lou does not have the genetic disorder Dr. Leung suspects, Dr. Fleischer theorizes that constant extensive skin damage can take up a lot of calories and energy to heal, thus slowing growth.

After seeing Dr. Fleischer, I went to attend a parent group on helping school children with chronic health conditions and 'Lou was off to art therapy class!

While we discussed 504 plans drawn up to include our children being moisturized halfway through the school day, he painted a beautiful picture and got to socialize with the other children in the program.

There are play therapists waiting to watch your child and play with them while you attend education classes or have meetings with doctors. I am still trying to get used to basically having a babysitter at any moment and leaving my child with them. 'Lou has not so much has batted an eye at being left with a stranger for an hour and a half!

They use a reward system of stickers to fill up a page for good behavior. When the page is full, the child gets to pick a toy out of a large toy closet. They get stickers for things like cooperating with the wet wrap process, being brave for blood draws and skin scratch tests, taking a bath when they hate them, or eating foods they may not want to during a food challenge.

There is also a meeting provided with a licensed clinical social worker who is basically there as a therapist for you and/ or your child. I had mine today and was pleasantly surprised that she did not spontaneously combust when I told her that I am not in a hurry to get my child out of my bed nor wean him.

In fact, National Jewish and the staff there have far surpassed my expectations. I have seen families from every walk of life and every national demographic in every state of stress and sickness – and all have been treated with the utmost care, concern and professionalism. I have seen kids of every temperament being treated with equal nurturing and patience. There is no feeling of being rushed or that you are just another number.

Even though the philosophy about my son's food allergies does not jibe with what I have learned and experienced, I have decided to open my mind completely and cooperate to the fullest and make sure that I make every minute of this trip worth it.

I sensed that they were expecting some resistance on my part to many of the proposed food challenges. But I am adopting a "you break him, you buy him" attitude about it. What other time am I going to be afforded the opportunity to see if my son truly reacts to the foods I think he will – and if he does, I have an entire hospital there to help him?

I already know they won't even touch any of his potentially anaphylactic foods, so all we are talking about is more eczema and rashes or possibly hives. I'm excited to have the chance to find out once and for all – it has been so long since he has had so many of these foods!

Sent from my iPhone


Unknown said... following intently and sending you lots of good energy to help you two stay strong as you navigate this adventure! LOVE and HUGS my friend!


Unknown said...

Thinking of you and Lou during this time. Thank you for posting it all and allowing us to have a view into your life. It could help others in the same situation.

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