Having tried my our 13 year old Daughter on a vitamin regime including 5 HTP amongst others, as well as Emotional Freedom Techniques, no breakthrough as yet. I would now say that She is at her lowest point. It is as if the failure of a recent Lidocaine infusion has broken her heart. Her flares are fairly constant, she has lost contact with her friends and is very low. We are about to start her on a course of Amitriptyline and hope that can improve things for Her.
We as parents are trying to use techniques set out in the the book "Conquering your child's chronic pain" by Lonnie K. Zeltzer but are getting no response. Our Daughter is stuck at the moment in a dark place.
Are there any teenage EM sufferers out there who would be willing to swap emails or online chat with with our Daughter ? We as parents recognise she is in pain but really do not fully understand how she feels. This really is a truly horrible condition.
It must be really hard to see your daughter go through this, as a parent myself I understand how devastating it must be for you all. I had a course of ACT (Acceptance Commitment Therapy) a while back and found that extremely useful, it pin pointed the fact I used all my energy trying to fight the pain which left me depressed. I stopped socialising because of the pain but would still be in pain whether I was at home or with friends… It was hard but with making lots of small positive changes managed to pull myself out of rock bottom. I really hope your daughter is able to get some sort of a healthy social life and friendships back, it won’t be easy but it will be worth it… I wish you all well. X
Hello Davipot,
Are you a member of The Erythromelalgia Association? They have a Junior Director whose role is to support youngsters struggling with EM. She has moved out of her teens recently but gives her email address and invites children to get in touch with her.
Not a bad idea anyway to join TEA.
Nel
That would be good, it would allow Emily to get some perspective from another teenager in dealing with her EM ,Emily is usually very shy and is withdrawn at the moment so perhaps they could start chatting via email initially.
We live in Adelaide Australia, we emigrated here from Scotland in 2005, Emily has been her from age 4 and Her EM has only shown itself in the last 12 Months.
Thanks again
David and Lesley
Trisha6797 said:
My daughter is 16 and would be happy to email or skype with your daughter.
Thanks Nel, that will be worth doing, we are members of the TEA.
Nel said:
Hello Davipot, Are you a member of The Erythromelalgia Association? They have a Junior Director whose role is to support youngsters struggling with EM. She has moved out of her teens recently but gives her email address and invites children to get in touch with her. Not a bad idea anyway to join TEA. Nel
Hi Laura, thanks for the advice,this is something we will also look at.
Thanks for the advice
lauraflora1 said:
It must be really hard to see your daughter go through this, as a parent myself I understand how devastating it must be for you all. I had a course of ACT (Acceptance Commitment Therapy) a while back and found that extremely useful, it pin pointed the fact I used all my energy trying to fight the pain which left me depressed. I stopped socialising because of the pain but would still be in pain whether I was at home or with friends... It was hard but with making lots of small positive changes managed to pull myself out of rock bottom. I really hope your daughter is able to get some sort of a healthy social life and friendships back, it won't be easy but it will be worth it.. I wish you all well. X
Wow Jane, I can't imagine what it must be like for you and your children. I was lucky enough to see a specialist and be tested 2 years ago to see if I had the genetic form of EM. Naturally I was worried I might have passed it on to my daughter and was really thankful to find I don't have. I have secondary EM (which is what every specialist suspected but I just wanted to be sure) and recently been dx with MS so possibly secondary to that.
I bet it was a comfort for your children to have each other to turn to when things were bad but I can also see that it must've been really hard with them seeing and going through so much pain that it kept them from doing 'normal' teenage things. I hope that you all find ways in which you can deal with this horrible disorder.!
I'm really glad that there are other teens who will contact your daughter Daviport to offer advice, support and friendship.
Emily is seeing a pain psychologist once a week for some CBT part of which includes ACT as well I believe, the pediatric Councillor is very good. It will take time but we are hoping that this will have a positive outcome to help Emily with Her EM. Thanks for the advice all of these things are good to know.
lauraflora1 said:
It must be really hard to see your daughter go through this, as a parent myself I understand how devastating it must be for you all. I had a course of ACT (Acceptance Commitment Therapy) a while back and found that extremely useful, it pin pointed the fact I used all my energy trying to fight the pain which left me depressed. I stopped socialising because of the pain but would still be in pain whether I was at home or with friends... It was hard but with making lots of small positive changes managed to pull myself out of rock bottom. I really hope your daughter is able to get some sort of a healthy social life and friendships back, it won't be easy but it will be worth it.. I wish you all well. X
Hi Jane, It would be great if your Kids did get in touch, the depression and dark nights stuff sounds familiar as does the friends drifting away. There is probably not a lot I can tell you about dealing with EM or paths you could take however have a look at the letter I had posted from Xenon , there is some research actively going on and hopefully there will be relief for everyone in the next couple of years in the form of Xen402. It sounds like you have been and continue to go through a very challenging time it must be very difficult. I feel for you and your Kids I really do, this is a truly horrible disease.
Jane said:
I am so sorry you are all going through this. I have four children with EM and it is devastating to the entire family when our children suffer. I know also that for my children, it wasn't that they withdrew from friends and society, it is that they got left behind from a social life. Because they have the primary familial genetic form of EM, it is typical in that case to not respond to any medication, and unfortunately they have not. So they can't go out and do stuff with friends, they can't go to the movies or events or even school. They have had to homeschool...there is no way they could handle the warmth of the rooms at the school. Staying in a constantly climate controlled environment is the only pain relief they have. It is just the way it goes sometimes; at first the people they knew would stop by once in awhile, but their lives go on and since my kids couldn't get out eventually their friends faded away despite my kid's efforts to keep the friendships up. I have one who is still a teen, one of my sons just turned 17. I also think that my daughter would be willing to email your daughter...she is 25 now but still a child at heart and has not forgotten one iota what it feels like to be that age and suffering from this. She has been through the suicidal stages, etc. I will jot down your daughter's email from below and have at least a couple of my kids get in touch. Also, we will make sure that we stay positive. All of my kids have been through the suicidal stages, the deep depressions, and the dark nights of the soul and have seen the other side. They have not responded to any medications but that doesn't mean Emily won't find something that helps. And just in case anyone wonders how I could have been cruel enough to have four children with the genetic form of EM, well, I didn't begin to have any symptoms of the disease until after I had three of the four children. It was still fairly mild, and I didn't know what I had and was going the round of doctors trying to ask why parts of me were turning red and had gotten no answers at all, just hormone imbalance, rosacea, all these maybe things they threw around, when I got pregnant with my fourth I still had no idea I had anything WRONG with me. By that time my oldest child was having symptoms but it took us ten years to get diagnosed so we had no idea we had anything at all.
Yes often CBT is done alongside ACT and mindfulness… I really hope you see some improvements in Emily, she has her whole life ahead of her to enjoy and experience… Wish you lots of luck x
I am so sorry your daughter has to go through this. I wish I knew of someone younger she could talk to. I see you have had some replies from others that could help. Please keep us updated if she has found that someone that might be able to give her some comfort ,tips and understanding. We get new members all of the time so if you are still looking after a while don't hesitate to ask again. I wish you and your family well. I am sorry I couldn't be of more help.
I can put you in contact tomorrow with a lovely 16 year oldUSA girl with EM. Please befriend me so we can exchange details. I shall speak to Daniella first just to ok it.
Thanks Alina, this site has been a great source of support, In reality though I wish that there was no need for it to exist. Hopefully there will be a medical breakthrough in the near future that gives everyone the relief they deserve, is truly is a wicked condition.
Alina Delp said:
I am so sorry your daughter has to go through this. I wish I knew of someone younger she could talk to. I see you have had some replies from others that could help. Please keep us updated if she has found that someone that might be able to give her some comfort ,tips and understanding. We get new members all of the time so if you are still looking after a while don't hesitate to ask again. I wish you and your family well. I am sorry I couldn't be of more help.
I am so glad you are able to get some of the support you need here. It truly is a wonderful place for us and I am so grateful to have found it. I too wish some day there will be no need for it. Maybe a ....I used to have EM site where we can get together and talk about all of the wonderful things we are doing now that we are better. I hope to see the day!
Thanks for the information Mads, we had contacted Danielle already via the TEA site . I believe she has already written to Emily. Thank for taking the time to do this.
David
mads said:
Dear Davipot,
I can put you in contact tomorrow with a lovely 16 year oldUSA girl with EM. Please befriend me so we can exchange details. I shall speak to Daniella first just to ok it.