• Jac78
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8 years 5 months ago #11144 by Jac78
Erythromelalgia was created by Jac78
My name is Jacqui and my 7 year old daughter has been diagnosed with Erythromelalgia, the odd thing is its in her genital area. She has had severe pain for 4 years aswell as bladder problems, her dr at the royal childrens hospital in Melbourne got the diagnosis from a peadiatric problem email group as they had no idea what was wrong with her. She is on gabapentin and tegretol which ease's the pain a little, she has lots of other problems and im not sure if its related to EM or not, it seems as though since the diagnosis and meds the dr's have forgotten about us:( Im desperate to find a dr in Australia who is aware of EM and who would be willing to see my daughter and help ease the chronic pain she has.

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8 years 5 months ago #11147 by Mary
Replied by Mary on topic Erythromelalgia
Hi Jacqui and welcome to our forum. I can't recall anyone here mentioning Erythromelalgia but there may be someone who knows something about it. I have just had quick look to educate myself as to exactly what it is and it certainly sounds like a rare disorder and not particularly nice for anyone, especially a child. i do feel for your daughter.

As far as finding a doctor with good knowledge of this condition; I think that perhaps your only option may be to email or write to the head of paediatrics in every children's hospital in Australia as a starting point. If you don't have any luck with that, there may be someone who can point you in the direction of someone overseas who is an expert. With communications as good as they are now, you may be able to find someone who can liaise with your own doctors and help out that way.

That is all I can think of at the moment, but I will follow up after I get home and see if I can find out anything. I am sure that you have already done all this though!


Not every day is a good day, but there is good in every day.

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8 years 5 months ago #11148 by titan55
Replied by titan55 on topic Erythromelalgia
welcome jacqui.i a so sorry to hear about what your young daughter is dealing with.the strange thing is that it sounds like what i have.IC,intercystital cystitis.i did not think children got this disease but teenagers do have it plus it can be male or causes problems with the bladder and creates pain in the genital area.i hope you find a doctor who can help your daughter because she is too young to have to deal with this problem.take care.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain

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8 years 5 months ago #11155 by Florrie
Replied by Florrie on topic Erythromelalgia
Welcome to this wonderful group Jacqui.

I am truly saddened that your poor little daughter is suffering so terribly. For you as her Mum, my heart is with you. I fully understand what it is like when you have a sick child and when the Doctor's cannot help you much. Our youngest son had a tumour intertwined in his sinuses, we were desperate for it to be removed before it got into his brain. We had huge difficulty in finding a surgeon and thought we were going to have to go to America. Long story short, we were ever so fortunate in finding a surgeon here whom operated successfully. I will never, ever forget that horrible feeling of helplessness during the whole experience. I really do fully empthamise with you.

I think Mary offered you some excellent words of wisdom in writing to all the paediatric hospitals in Australia.

If you have an excellent GP, he/she should also be able to assist you in your search and give you some tips.

Take care. All the best :)

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8 years 5 months ago #11156 by BIY
Replied by BIY on topic Erythromelalgia
My heart goes out to you Jacqui and welcome to this loving, supportive forum. We are always here for you even if you just need to get on here and let out your worries and fears; it is a safe environment to do so because we all understand what it's like living and struggling with chronic conditions.

It is difficult enough for us on here to struggle with our own pain; I can imagine how much more difficult it must be to see your child suffering. My husband says that the hardest thing for him personally about my CP, is feeling so helpless to fix it or make it go away for me. I imagine that must be heart wrenching for you as a mother.

Mary had some great suggestions. There is also Skype as an option to talk to specialists overseas.

Hugs to you and your daughter,

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8 years 4 months ago #11162 by GarfieldRules
Replied by GarfieldRules on topic Erythromelalgia
Hi Jacqui and welcome to this wonderful forum. So sorry to hear about your daughter. No child should ever have to suffer. As a mother as well I could only imagine what you are going through. There seems to have been some good suggestions put on here for you. Hopefully if you follow through on those ideas you may get some success out of it. I wish you and your daughter all the luck in the universe and hope you find someone soon who can help your little girl. Keep us informed. Take care. xx

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