Advice on four year old boy please?!

[Lau85]

Hi, I'm after some advice/opinions/I don't know regarding my almost four year old son.

He has been a poorly child since birth really. Suspected Leukaemia a year ago, which turned out to be suspected bleeding disorder due to AWOL clotting and platelets. This was then disregarded by his amazing Haematologist who said it was down to recurrent viral inhibitors; he has suffered recurrent infections forever. This all took us til December to get those answers. By which time he was then hospitalised with another mystery virus, unable to stay awake and uncontrollable temperature. He was diagnosed with Mesenteric Adenitis and viral infection.

He just hasn't recovered from this. He had a pea sized lump in his neck that grew over the next two months, his Haem had him in straight away, she is a Paediatric Oncologist too and we were referred to the Oncology clinic on the Children's ward with suspected Lymphoma, due to other symptoms such as itching, night sweats, abdominal pain, diarrhoea and constipation, fluctuating temperature, feeling crap all the time, majorly lumpy bruises still, despite clotting factors returning to normal. Ultrasound came back as reactive nodes, 3cm big and nothing sinister to report. Great. He also had abdo US to rule out Neuroblastoma which also came back okay. This has all happened in the last couple months. He had his tonsils and adenoids removed on the 5th for Sleep Apnoea and recurrent infections after being diagnosed with Chronic Epstein-Barr Virus due to sinister stuff being "ruled out" (no biopsies of nodes which worries me but I do trust his Haematologist/Oncologist. Six days post op, he is brought back into children's ward with massive Urticaria which he had an episode of in Sept 2010 and we trialled wheat and dairy free which seemed to have some improvement but not long term. He also had minor urticarial flare ups a few weeks before his operation which I mentioned to the Reg who viewed Samuel.

With all his symptoms, she is referring him to a Periodic Fever Clinic near us (I am relatively medical but had never heard of periodic fever!) as his temps fluctuate daily from 35-41oC not always with an apparent reason. She has mentioned it seems like there could be a rare form/syndrome of Vasculitis going on here and thinks its all underlying and nothing "new" I.e. viral meningitis which they suspected at first.

I just feel so awful for him. He is suffering SO badly with post op pain, and this itchy hives on top, poor boy.

Anyway, I've done some Googling and he does seem VERY close to the symptoms, he doesn't really get the typical Purpura, he gets petechia occasionally and has had platelet issues; high platelet count which fluctuates also.

He had his immunity checked in January and all his IGs came back normal bar occasional high WBC and high Platelets. He has had Lupus checked too - ANA neg and the other Lupus Antibody checked was fine.

Anyone know of, or heard of such a young male with any form of Vasculitis. The Dr didn't mention a specific name but I am assuming its more likely to be Urticarial Vasculitis.

Do the other types cause urticaria? He is a very rashy boy in general. Goes white porcelain to very rashy face etc.

Sorry for dragging on!

Laura.

[LynneJ Vasculitis UK Volunteer]

Hi Laura

It must be awful for him and you must be so worried.

Have you seen our website? There is a section there with the individual diseases and there are a couple that affect mainly children.

vasculitis.org.uk/about-vas...

Perhaps something there might ring a bell.

There is one called Henoch-Schonlein-Purpura This affects children between the ages of 2 and 11 years old and it seems to affect slightly higher numbers of boys than girls.

There is also one called Kawasaki Disease and the symptoms are

Fever (lasting for five or more days), rash (worse in the groin area), bloodshot eyes, red, swollen, cracked lips, "strawberry" tongue with shiny bright red spots, swollen hands and feet with redness of the palms and soles of the feet, swollen lymph nodes in the neck.

It does affect children under 5 and boys more than girls but It is very rare so it might not be this one.

I am not sure if anyone on this site has experience of it but hopefully there will be someone out there to help you.

There is also information on the Great Ormond Street website

gosh.nhs.uk/medical-conditi...

Good luck, I hope you get it sorted soon.

Lynne

[John_Mills Volunteer]

Yes there are rare forms of vasculitis that effect children and yes several forms of vasculitis do cause urticaria. Probably the best person who knows most about vasculitis and children is Dr Paul Brogan at Great Ormond Street Hospital.

You can ask for a referral through your GP or Paul will work with Samuel's consultant.

john

[Lau85]

Thank you for your replies. It's great to feel welcomed without a definitive diagnosis.

In your opinions, with your personal experience with a form of Vascuilitis, does my little boy's symptoms match some of those that conform to certain types of Vasculitis? In my view of someone with no experience with Vasculitis at all, it appears he has symptoms of a few different types, but none specifically, so I'm unsure. He's had chest x-rays recently and they were normal, and his adrenal function via blood test is also normal, although he does exhibit symptoms both chest and abdominally.

Lynne. Thank you for your links, they are really useful ones that I have had a good look at.

John, thank you for your advice too. I had a look on the GOSH website and at the profile of Dr Brogan. Will keep his name in mind if we see other professionals about this.

Laura.