6 year old diagnosed

[Jojo230383]

Hi everyone,

So my 6 year old daughter has another auto immune condition called pfapa so she is regularly seen by her paediatrician, last October after I told the Dr Rosie was in constant pain, with nausea, itchy rash etc she tested her for coeliac disease. Her iga result came back at 138. The gastro Dr put her on the waiting list immediately for the biopsies, he said less for diagnosis but more to see what damage has been done because she appears to have burn type marks in her mouth and down her throat too. We are still waiting for the biopsies how long did everyone wait for these? Only we are getting of for 5/6 months and it's getting so hard to watch her suffer. She is also deficient in a few vitamins and aneamic.

[Lynilou]

Have you contacted your dr or the consultant to ask? Over 5 months seems excessive. My biopsy result was very quick, I was given feedback on the day and had an appointment two weeks later with the consultation. My suggestion would be to return to dr.

[Jojo230383 in reply to Lynilou]

Thanks you, sorry I mean we are still waiting for the biopsies, not the results x

[Frodo]

Sorry to hear your daughter has this. I don't have anything useful to add, I'm afraid, but

your post has made me realise that my son suffered from this throughout his childhood, undiagnosed. He had all the symptoms except the ulcers. I couldn't understand what was wrong with him, but he'd regularly get high fevers and have to have a week off school. I didn't have a name for it, but it was definitely more than the usual colds other children would get. If he continued with normal life, tried to push through, and didn't rest, he'd get really ill.

If your daughter can't absorb nutrients well you'll need to ask for her B12 and folate to be checked if it hasn't been already, because that too causes awful symptoms that are under-recognised.

[Lucob2 in reply to Frodo]

Hi Frodo, this is an old post but could you tell me about your child's symptoms please for fpapa, my daughters paed has mentioned this to us as she's been ill on and off for 4 years, high temp, achy legs, vomiting, slight rash, cpr above 250, high white blood cells, ESR above 40. She's gets treated for sepsis regularly because of it, does this sound like pfapa? The docs haven't a clue what it is, but one did mention this sort of off hand. Any advice would be really appreciated, thanks.

[Sweatyfaced]

Defo go back to the GP or phone the consultant; that is far too long for a child to be waiting for the tests / biopsies, especially as it could stunt her growth etc.

I'm sure she has been lost in the system but if she hasn't and the wait is really long, kick up a fuss!! Sadly, with the underfunding of our health service right now, sometimes you have to shout really loud. They're doing their best but it sounds like your daughter needs to jump that queue...