My 6 year old daughter has just been diagonised today after a very long 4 years of not knowing, Her dr's told me its a rare condition and her's is extreme as it affects her genital area. She has been on Tofrianil since March this year, then on Fluoxitene, both of these didn't do anything, she is now is on Apo-Gabapentin, Im from Australia and have no idea about this condition. Anyone's advice would be greatly appreciated.
Jacqui-
I am sorry to hear your daughter's diagnosis. My son Drew is 14 and was dignosed with EM about 9 years ago. We have tried several medications. The combination we have now has reduced his pain a lot. He takes Mexilitene, Topamax, and Clonidine. He took Gabapentin in the past and we had limited success with that. Drew's flares are almost always in his legs from the knees down. Occasionally his face and hands flare too. He also went through a peiod of time when he constantly placed his feet in a large bowl filled with ice water. I had to take the bowl away because his feet were starting to show signs of damage. Now he has several ice packs in the freezer covered in fabric. Drew usues a power chair to get around at school. He can walk but far before the pain sets in. We also have a manual chair we keep in the car. Message me if you'd like to know more. As moms, I bet we've had a lot of th same experiences with our children!
Thankyou, im finding it hard as there isnt alot about this in your genital are, the dr's say its rare but it happens, id never heard of it until 24hrs ago, im glad we got a diagnosis but at the same time i know nothing at all about this. She has missed so much school in the last 2 years, misses out on lots of after school activities, it seems to flare up from around lunch time and goes on to well into the night. Im hoping the new meds give her some relief
Is there a way that the school could accomodate her illness and let her go in for just the mornings when things are a little easier..? I work in a school and know that ours do everything in their power to make sure we work around illnesses, disability etc. And maybe if she rested in the afternoons there could be times where she could join in some of her favourite after school activities..
Jacqui Kuschert said:
Thankyou, im finding it hard as there isnt alot about this in your genital are, the dr's say its rare but it happens, id never heard of it until 24hrs ago, im glad we got a diagnosis but at the same time i know nothing at all about this. She has missed so much school in the last 2 years, misses out on lots of after school activities, it seems to flare up from around lunch time and goes on to well into the night. Im hoping the new meds give her some relief
Hi Jacqui, I just found this online and thought maybe you'd findi it interesting.. http://www.hindawi.com/journals/crim/2011/374167/
THANKYOU so very much for that, I just read it and its CHLOE all over!!!!!! Its the only thing ive read relating to her!!! A few people ive talked to have told me it isnt Erythromelalgia as it doesnt appear in the genital area!! Im going to see her teacher on Monday and talk to her about what they can do to help, Her teacher has been really good so far. Im so glad I found this site:):)
Get a bed fan! It really helps! I have had EM since I was 9, but was not diagnosed until I was 25years old. some things that I have learned extream cold, even holding icecubes can induce a flair up and will cause more flair ups
elevating the effected area helps, you need to elevate it until the episode is done. adidas makes a running shoe climacool that is very well ventilated and get the socks that are super ventilated...they have lots of holes in them. the thinner the better.
Just knowing that information as a kid would have prevented tons of pain for me.
i have em and raynauds and am under 16 my school is terrible for sorting things out P.E is my last lesson on a friday so my mum asked if I could leave to go home early on Fridays they wont let me do this. It took me 3 years and 10 doctors letters to get them to partly understand. My support teacher left this year and my new one doesnt know what either condition is even though I gave her the information. she is truly useless and I am in pain everyday. when I get home I cry due to the pain and wake up throughout the night. I feel like im becoming disabled and have had no medication help so far as the two conditions conflict with each other.
Does any one know if em causes bladder issues like wetting yourself.
My daughter had bladder problems for 4 years, she was constantly wet during the day, she was diagosed with a small bladder yeard before being told she has EM, not sure if there is a connection but I think there could be. Her teachers at school have been really understanding with her and what she can and can't do. My daughter is on Gabapentin, it eases the pain but doesnt stop it.