I have a 5 yo boy who was diagnosed with severe eosinophilic asthma when he was 2yrs 8 mths. He is on lots of medications(ciclesonide, seritide, montilucast, salbutamol, dexamethosone, cetirizine, nasal spray and eye drops) but he still has daily symptoms and regular asthma attacks which result in him being admitted onto the ward He had a severe attack on Monday evening where we ended up on the ward for 2 nights. I think this was triggered by the drop in temperature last weekend.
His respiratory consultant has mentioned putting him on xolair next year just prior to the grass pollen season taking hold. His last total Ige was 2224. Has anyone else got a younger child on xolair?
It would be good to hear from others in a similar situation.
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SazSeb
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Hi so sorry to hear your son is so poorly, I truly hope he gets the drug soon, I am waiting for the drug, all research claim it's a wonder drug, just keep intouch with the hospital and ask all the questions, especially as his so young. I strongly believe this drug is a life changer and will benefit those with ashma.
As like your son my triggers are dust, pollen, temperature change, there is nothing at this point we can do. Keep the inhalers going, I found keeping a peak flow chart help as it starts to show a pattern, when you peakflow is low. This helps the doctor as well. I wish you well and please stay intouch.
Hi, I am so sorry to hear your little boy is having such a rough time of it with the severe asthma. That must be very worrying for you as parents. I take it the real problem for your little boy is the allergens as it sounds like he has allergic asthma? Do they know what the triggers are? I don’t have allergic asthma but severe refractory eosinophilic asthma & am awaiting treatment with one of the biological treatments which specifically target the IL5 receptors in order to try to deal with the chronic eosinophilia.
I always thought that allergic asthma and eosinophilic asthma were two entirely different things..with eosinophilic asthma having no actual identifiable triggers whilst with allergic asthma it’s a matter of identifying the triggers.
I think I would be asking the doctors some questions...which does my son have? Is it allergic asthma or eosinophilic asthma? As you know yourself, the treatment would be very different for your little boy depending on which form of asthma he has.
Hi sorry to hear that you and your little boy are struggling so much 😞
On the case of what type it could be that he has both! I have both eosinophilic and allergic (it’s a real pain!). They’re probably pushing for the xolair due to his age (age criteria for xolair is 6+ whereas mepolizumab is 12+ I think). If eosinophilic was his ‘first’ diagnosis then it’s probably correct but may be worth getting rechecked so you can work out which is the ‘leader’ (for me it’s eosinophilic which is worse). It may not help knowing tho - it’s just academic (other than the biological and antihistamines treatment is the same).
I had xolair as an adult and whilst it didn’t stop my issues (like it does for some) it did significantly reduced my time spent overnight in hospital (2 nights separately in 6 months conparded to 30+ the previous year!). Had to stop in July due to hypersensitivereaction (hives/angioedema) and definitely noticed a significant difference (in 2 months of no biological treatment I had a total of 10 days overnight 🙄)
I’m now on mepolizumab which I’m hoping will work even better!
I hope xolair works well for him, especially with such a high IgE level! Good luck x
In my sleep deprived state, I got my first post slightly wrong, he was diagnosed asthmatic by the paediatrician at 2 yrs 8 months. At 3 yrs 10 months he had a broncoscopy and other tests done, this was when he was diagnosed as a severe eosinophilic asthmatic, due to the inflammation seen during the broncoscopy and the markedly raised eosinophils from the blood test (or sample they took from the lungs, can't remember which).
If they start him on the xolair in March he will be 5 and a half and they will have to put an exceptional case forward for him to receive the drug off licence.
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