Mum with recently diagnosed baby

[MeghanAndSammy]

Hello

I’m a mum of a 6 month old who was diagnosed with mastocytosis this week, after weeks of been told it was probably chicken pox.

We are now under a consultant at the dermatology ward and she has done blood tests (waiting on results) and discussed maybe doing an ultrasound and biopsy. We have been given lots of information and to be honest I feel so scared, confused, emotional and don’t know what to expect or do for the best. I’d love to speak to any parents in a similar situation.

My little boy was given cetirizine through a private GP which has helped reduce his spots, however our local GP is now saying they won’t prescribe this to us again, as really only children over 2 should have it. It’s the only thing that really helped us and normal piriton doesn’t make a difference Would love to know if standard anti histamine is working for others and just to preserve with this or try fight it.

Just feeling very overwhelmed.

[Topnumpty]

I am so sorry you are feeling so scared and of course emotional.

I am afraid I don’t know a great dealabout mastocytosis in children, other than I believe it often resolves as they get older.

I just wanted to offer reassurance that you have found the right place here for support and information, and someone will be along soon who will be able to give better advice than I can.

Best wishes to you and your little one.

[MeghanAndSammy in reply to Topnumpty]

Thanks so much - I really appreciate this

[Stone17]

So sorry to hear your little one has mastocytosis although good that he has an early diagnosis and you dont spend months being passed round from one doctor to another. Hopefully someone else with a child who has been through this will come along to give you advice. Also a chance he will grow out of it. Must be so worrying for you, I can only wish you well, sometimes you have to be a step ahead of your GP and do some research on your own. Could there be a child version of cetirizine? Good luck, hope dermatologist is helpful.

[happytulip]

I very much suspect that your GP is out of their depth. Many GPs have never even heard of mastosytosis, let alone know how to manage it, especially in a child.

If it were me I would get in contact with my dermatology consultant via their secretary, explain the situation and you may find they can help with a prescription by either providing it themselves or by instructing the GP.

Your little boy obviously needs it and in his situation witholding certirizine may do more harm than good.

Best of luck.

[Redfleur]

HiIt’s a emotional rollercoaster as a new mum but to have this on top is awful. I’ve been in this situation with a different condition.

At its worst I was in hospital and my son another. All I wanted to do was get to him.

My advice is to get back to the consultant via the secretary. Always tell the Consultant to give advice in the letter about what’s prescribed. If your not happy ask to be referred back. If your not happy with the consultant I would email or ring this society. There so helpful. Trust your gut instinct as a mum.

Stay positive and I’m glad you found this site.

[Jess-UKMasto Partner]

Hi Meghan, you've had just the right advice here, in that the GP is really not knowledgeable here and doesn't know that cetirizine is frequently prescribed for little ones with mastocytosis because it helps manage the symptoms of the disease. Because your little one has too many mast cells in the skin spots, and because mast cells release histamine, an antihistamine like cetirizine can block the effects of the histamine that will be having an effect on the skin and can be affecting other body parts because it can travel from the skin to places like the GI tract and sometimes respiratory tract. Your specialist is on the right track to do an ultrasound (to make sure the spleen and liver are of normal size) and the biopsy of the skin would confirm the diagnosis if it isn't completely clear. If a bone marrow biopsy is the kind of biopsy suggested that's something we could have a longer conversation about as it isn't too common in children and is done if there's a particular concern. I hope perhaps you've had time to hear back from the consultant by now and have had some reassurance. I'm happy to have a chat by phone or email if you still have questions that aren't yet answered. With best wishes, Jess