hi My 9 year old baby has been battling chronic urticaria, angioedema, anaphylaxis.

My 9 year old baby has been battling chronic urticaria, angioedema, anaphylaxis .

My 9 year old has been battling chronic urticaria, angiodema, anaphylaxis & an auto inflammatory disorder since 18 months old my 13 year old gets urticaria when on grass. now my lil 18 month old started with it last week.. around his mouth/face/nappy line.

I hope it’s just a 1 off & the antihistamines the doc gave us for a week work. or else he’s being referred to my daughters specialist as hers is caused by a gene mutation. praying he hasn’t got it too


Discussion


Kelly-Anne Bailey If one child has hereditary Alpha Tryptasemia all do..
All of my kids have minor forms of contact urticaria/ angiodema with anaphylaxis.
Two of my children have it minor and one is very sick and is under high dose treatment .
Have you or any of your children had Tryptase tests done?? If so do they all show elevation?
I feel for you, but you are not alone, very similar to my life and my kids.

Mel Collins Kelly-Anne Bailey we have a gene mutation in the interleukin 18 gene, my daughter has TRAPS which is a rare auto inflammatory disorder, she is under rheumatology at great ormond street, we have been told that it’s her disorder that causes her urticaria & anaphylaxis, it’s a response from her innate immune system, we were under immunology for many years & been down the allergy etc route

Kelly-Anne Bailey Mel Collins Wow, sorry for my assumption, we ended up with a bunch of gene mutations.
I hope for you that you get many answers.

Mel Collins thankyou, it’s very rare so treatment options are limited, she suffers greatly & we are unsure what the future holds as she gets older

Kelly-Anne Bailey Mel Collins I can feel for that part, my youngest now 13 is having such a horrible go..
He was just diagnosed with two new diagnoses and were awaiting this last round of genetics.
The only solace I am holding to right now is gene therapy is having huge leaps in testing and techniques.. I am really hoping there will be better treatments soon.

Mel Collins i hope you get some answers too… I’m hoping that as we are under great ormond street that she’s in the best place for the help

Michelle Duzan let us know if it’s a genetic mutation and have you talked to anyone abt Xolair or another immunosuppressive therapy? I am so sorry and praying

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