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DS been referred to Great Ormond(sp?) Street

(4 Posts)
puddytats Wed 22-Aug-07 08:39:52

He had scarlet fever this time last year, since then every 5 - 6 weeks his body erupts in bit spots, similar to chicken pox, but the all become infected and take about 6 weeks to clear up. Local hospital have been a nightmare and keep tekking me he is allergic to something but they will not do tests for allergies as they do not know what they are testing for
Finally saw a Dr a couple of weeks ago who agreed it was not an allergy and he belived it was either a reoccuring strep or staph infection following on from the scarlet fever BUT they still don't know why it is happening and can only treat it reactivly with anti biotics when it occurs. He has been on anti biotics 9 times in the last year
Finally saw a Dr yesterday who said he had referred him to Great Ormond Street as they are at a complete loss still.
It has taken them a year to aknowledge they do not have a clue, the Dr even admitted that we only had yesterdays appointment because i had made such a fuss last time he was admitted (about 5 weeks ago).
I am so angry that they have taken so long to aknowledge there is a real problem there and i am not just another neuotic mother.
Just letting off stream really. Have no idea how long we have to wait to hear from Great Ormond Street, any one have any experience/ideas?

lisad123 Wed 22-Aug-07 08:47:43

Morning, I dont know anything about what you are going though but wanted to send a hug anyway. I have been to GOSH with my neice and nephew, its a lovely hospital and staff are wonderful.

I am sorry to hear your doctors have been so crap, I hate the fact that you have to get angry/upset before they listen.

Good luck and hope it wont be long before referal comes though.

PSCMUM Wed 22-Aug-07 08:57:31

my daughter spent a very long time in hospital after she was born - we took her home for 5 days, then she got very ill, and we spent the next 6 months in hospital. We were at the Royal London, which has a brilliant paeds team, and they liaised a lot with GOSH as DD's condition was so rare. I think once you're at GOSH, you are in safe hands - not just medically, but emotionally, they will really look after you and your family - all of you, not just the patient. I can't say how brilliant our nurses were in RLH and many of them had been at GOSH. And you don't even sound like you'll be admitted, just that its an investigational appoitment. Honestly, you'll be fine. But as alwyas with doctors, speak up if you're not happy with the way they're going - say if there is anything you can think of that they haven't, and object if you think a course of treatment is unecessary / necessary. For example, Drs, who were great, wanted DD to have a brain scan, for which she needed a general anasthetic, which i was not happy about, the brain scan, whatever it showed, would not change the way they treated her, but would just help all of us know what was going on, but it would not help her at all. So we said no, and they were cool with it, and ultimately agreed with us that this was the best decsion. Anyway, I'm waffling on and on, the basic point is that the nurses at GOSH are brilliant and you'll be fine! Good luck.

puddytats Wed 22-Aug-07 09:04:29

Thankyou for replying so fast. I hope your daughter is better now?
I feel so angry that it has taken so long for the Drs to agree this is not right. His little body is covered in scars. I have a skin condition that does not allow scars to heal properly and i am so concerned that he hasa this as well but they just will not listen to me.

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