I have a child that might have erythromelalgia that just started only on her nose, cheeks,ear last month. She is very itchy, hot and red/blue. I have older child who was diagnosed with erythromelalgia several year ago, but her symptoms are very mild - only sometimes your her feet red and hot and she does not take any medications for it and does not see a doctor for it. The youngest child is just 13 years old and they checked her on lupus already. All doctors have no idea what wrong with her.
Just wondering how common is to have erythromelalgia only on face? Can anybody recommend a doctor in Toronto, Canada? Any medications to help her? Any suggestions on genetic testing here in Canada?
I just can't see how my child is struggling and nobody can't help.
I understand. My younger son has many mental health issues, and it's so hard to watch him suffer with no friends, etc. Regardless of the issue or their age, it's painful to watch our "children" suffer.
I can absolutely refer you to a great Dr. I saw recently at Sunnybrook Hospital. His name is Dr. Alhuseyen and he's in the Dermatology Dept, which is a perfect fit for what you're describing. You need a referral and it may take a few months, but he's very knowledgeable about EM, took his time, did lots of tests and was good to talk to. See if you can get the Dr to make a referral SOON! Dr's # 416-■■■■■■■■
I don't think anyone can recommend any meds until you know what's wrong, ESP since that's such an unusual presentation for EM.
Hi Worried Mom.I was given the names Dr. Janet Pope in Ontario and Professor Murray Baron at McGill University for EM They specialize in scleroderma but will see patients with EM of they can tell you collegues that are experts in EM. Hope this is helpful. Judy
It is wonderful that through this site you have quickly been given names of knowledgable physicians. That is one of the most difficult things, finding experienced help. I agree it is so hard to watch your child suffer. I've been through finding the right medication mix with both my children.
I have it in my face, but it is tolerable . Sometimes I think it may be where it all started since I had an extensive dermatology procedure on my face for skin cancer. Now the worst areas are my hands and feet, more so the right side. Oddly, with my face the left side is worse.
I hope you find releif for your child soon. Your second child is fortunate in that though a milder case your first born has been through it. In children often what works for one sibling will work for the other.
I have Erythromelagia on my face and it's more rare than on feet and hands that's why it's harder to get diagnoses. It took me two years and my fourth Neurologist to finally diagnose it. Don't give up just keep trying to find someone. Better yet print out the info on this disease and hand it to the doctor. It'll give them a starting point. The only thing I've tried, and I've tried many things, that have really helped is Gabapentin. Hope you find some help.
I'm so glad people had doctor's names for you! If you want some other ideas on what the condition could be, you may want to google some info on Dysautonomia (ie, POTS) or Mast Cell Activation Syndrome (MCAS). I only suggest it because the presentation in both kids sounds just a little unusual in that they aren't having severe burning pain and these are conditions the docs may not think of or know about but are sometimes implicated in EM and can be milder than the usual pain presentation (but can also be in people with severe EM pain).Both kinds of conditions seem to be running within the same families at times and with some relatives of those having EM. That's my family's situation and, for us, it looks related to a difficult to diagnose hereditary connective tissue disorder (not autoimmune).
The Canadian Mastocytosis Society may know of docs who can evaluate for MCAS if all else seems to get ruled out. And I think Dinet.org has a physician directory for dysautomonia docs (if blood is pooling in the feet of your older child).
While I have all that stuff, I also have plain hypersensitivities to some chemicals in shampoos, soaps, lotions, fabrics (chemicals from manufacturing them) and a dermatologist could test your son for those without needles. They're called allergy patch tests and you can read about them on the TRUE test website. Google TRUE test panels to find the site.
Those are just some thoughts. Sounds like you're already on the right track.
Hello worried mom
My heart goes out to you, I’ve been diagnosed for 3 years and live in constant fear that I have passed it on to my son. I live in Montreal and deal with the french hospitals. My neurologist is very kind and understanding but not knowledgeable of EM. I did go to genetic neurology to have my blood tested in the Netherlands. My EM began only in the feet and then progressed to hands and recently cheeks nose ears and chin so I guess not all uncommon…hope this helps
God bless
I know a doctor in toronto Dr. Scott Walsh diagnosed me about 4 years ago. He is from Sunnybrook hospital and you need to get a referral from your doctor.
Em is such an odd and complicated condition that not one treatment or drug works for all em suffers, it is a matter of trial and error and the support of a good doctor. My family doctor supports me 100 percent, I see dr. Walsh rarely because he is so far from me and he likes to push pills and I am not fond of the chemical drugs. Have tried many and if anything it made my condition worse and the side effects of some of these meds are worse than the em. I am going to try a new med, one that Dr. Cohen is on, figure if it helps him I will try ;)
You are not alone Lana, and it must be awful as a parent to watch you children suffer, I pray my boys don't get it, but my oldest who is 20 has it on his ears, haven't gotten him diagnosed but I can tell. I have em on my feet, legs, hands, fingers and sometimes ears. I have gotten creative in adjusting, I use gloves that I have put in the freezer to help me cook or if I need to cool my hands, I also use magic bags from the freezer too and in the summer I take alot of cold showers.
Just so you know, Dr Alhuseyen, who I referred you to, is in same clinic as Dr. Walsh. It was easier to get an earlier appt with Dr. A.
Sue said:
Hi Lana
I know a doctor in toronto Dr. Scott Walsh diagnosed me about 4 years ago. He is from Sunnybrook hospital and you need to get a referral from your doctor.
Em is such an odd and complicated condition that not one treatment or drug works for all em suffers, it is a matter of trial and error and the support of a good doctor. My family doctor supports me 100 percent, I see dr. Walsh rarely because he is so far from me and he likes to push pills and I am not fond of the chemical drugs. Have tried many and if anything it made my condition worse and the side effects of some of these meds are worse than the em. I am going to try a new med, one that Dr. Cohen is on, figure if it helps him I will try ;)
You are not alone Lana, and it must be awful as a parent to watch you children suffer, I pray my boys don't get it, but my oldest who is 20 has it on his ears, haven't gotten him diagnosed but I can tell. I have em on my feet, legs, hands, fingers and sometimes ears. I have gotten creative in adjusting, I use gloves that I have put in the freezer to help me cook or if I need to cool my hands, I also use magic bags from the freezer too and in the summer I take alot of cold showers.
I have had it on my face/ right ear for over 2 years now. It came really suddenly and I didn't know what was wrong with me. I felt like I was majorly burning up and didn't know what it was. I get a really red, hot and burning face. I have tried lots of different meds, so far nothing really has helped me except I do take one for my anxiety occasionally called Ativan and sometimes it really helps to bring down the temperature/ burning in my face. My neurologist is going to start giving me Botox treatments because he thinks they will really benefit me as they benefit a lot of his migraine patients. Anyway, I know how your son feels... I am a mom of twins and it seems like I just can't handle the pain a lot. But I hope they can find a diagnosis for him and he can get to feeling some relief soon. Don't give up on finding the right doc who will understand his needs. :)
I have had it on my face/ right ear for over 2 years now. It came really suddenly and I didn't know what was wrong with me. I felt like I was majorly burning up and didn't know what it was. I get a really red, hot and burning face. I have tried lots of different meds, so far nothing really has helped me except I do take one for my anxiety occasionally called Ativan and sometimes it really helps to bring down the temperature/ burning in my face. My neurologist is going to start giving me Botox treatments because he thinks they will really benefit me as they benefit a lot of his migraine patients. Anyway, I know how your son feels... I am a mom of twins and it seems like I just can't handle the pain a lot. But I hope they can find a diagnosis for him and he can get to feeling some relief soon. Don't give up on finding the right doc who will understand his needs. :)
I've had it on my entire face and both ears, mostly left ear, for over two years now. Try taking Gabapentin. It's about the only thing that's helped me!!!
I also have symptoms that effect my face. I was worked up for Lupus several times all negative. I have a red discoloration to both cheeks and my Left ear swells, becomes red and I have burning pain often. This happens more frequently than my feet.
My 7 year old daughter has Em in her genital area, She is currently on 500mg a day of Gabapentin and 20ml Tegretol twice a day it helps a little, on her really bad days she has endone. Its very hard here in Australia as there isnt alot of dr's who know about it or who are willing to help.
Jacqui, Have you tried doing a google search on "Erythromelalgia and Australia", looking for medical journal articles in the results that are written by docs in Australia, then write them and ask if they treat it or could recommend someone who does? It would take a log time to sort through all the results and track down the docs, but it could pay off. It's so incredibly hard to find anyone who understands EM! I've never found a doctor in my area who gets it. But I've stumbled upon some things that help some (by luck) anyway. I hope you can find better help for your daughter.
I have and have come up with a few things but its mostly info from overseas. Chloes dr's got the diagnosis from a dr in America, her dr had never heard of it before, im trying to do lots of research myself to take to her dr.