Xolair at age 5?

[Guest guest]

Hello, everyone!

I am the mother of a 5 year old with moderate persistent asthma and severe

eczema which are closely tied to his food, pet and environmental allergies.

He also has eosinophilic esophagitis (EoE). With the effects of each

condition considered, ie is effectively allergic to every food that he

has ever eaten with only one exception: cane sugar. His diet has, since

August 2008, been limited to Neocate One Plus, Neocate Nutra, artificial

colors and artificial flavors with cane sugar added back to his diet in

December 2008. Attempts to reintroduce other foods have consistently

failed. Occasionally, ie will outgrow a food allergy but then will

quickly resensitize after eating it again for a matter of weeks. Perhaps

most problematic is the airborne aspect of certain food allergies. Peeling

oranges in his presence causes immediate bronchospasm, as does the use of

orange-based cleaners. Cooking or reheating of eggs and pork cause

wheezing, coughing and a flare of his eczema even if they are only minor

ingredients. Peanuts and tree nuts will cause a rash and bronchospasm even

without heating. This effectively prevents him from even walking into a

grocery store from mid-November through the end of the year when bulk bins

of nuts are unavoidable. After a recent increase in the frequency of

airborne food reactions, ie now becomes quite anxious whenever he smells

food and cleansers anywhere away from home. Contact reactions are also

problematic, but easier to deal with. Allergy shots were initiated in June

2008 when outside time had to be limited to a cumulative 30 minutes per day.

ie can now play outside for up to an hour at a time before the wheezing

and coughing begin -- 90 minutes outside last week led to a flare of asthma

and allergic rhinitis that we are still fighting.

Medications that are currently in use are Pulmicort (nebbed once daily in

the summer, twice daily otherwise), albuterol (nebbed at varying rates),

Singulair (daily), Allegra (twice daily), Periactin (two to three times

daily), Nasonex (once to twice daily), Benadryl (mostly for breakthrough

hives and reactions at school), EpiPen Jr (used once, narrowly avoided too

many times to count) and Orapred (roughly 5 to 7 days per month except in

summer). Today was Day 4 of Orapred. ie's lungs are essentially clear

of wheeze and crackle, but the bronchospasms continue. Daytime is bearable,

but last night we were still doing neb treatments every 2 1/2 hours with

plenty of coughing in between. I was up all night repositioning him because

he couldn't catch a breath between coughs unless he was propped upright.

Albuterol in his neb did help, but not completely and never for long. We

added a nasal steroid today with the hope that doing so will allow us to

avoid extending the Orapred beyond 5 days. I am not holding my breath...

Historically, we have not pursued Xolair due to ie's age and because his

quality of life was still pretty good. That is no longer the case. Now in

kindergarten, he is noticing all that he misses out on due to airborne

environmental and food allergens. The anxiety is new and very concerning,

as he has always had a lot of self-confidence. Until very recently, ie

was respectful of his allergens but not afraid of them. Now that he is in

school full time, his education is being negatively impacted. He missed 6

of the first 40 days of school and has had multiple early dismissals for

medical appointments that could only be scheduled during the school day.

Just as we get him caught up from one absence, he is out again. As of now,

we have his pediatrician, a GI specialist and 2 allergists recommending

Xolair.

I can no longer ignore Xolair as a valid treatment option for my son. I am

looking to get input from anyone who has had a child on Xolair as young as 5

or 6 years. What kind of difficulties can I expect with regard to getting

insurance coverage for this treatment? Are they likely to refuse coverage

based solely on his age? Anything else that I should know about the use of

Xolair in kids this young? Any information and guidance that you can give

will be must appreciated!

--

*Kendra Tiedemann*