ankle distonic and subblexed

My 12 year old daughter has recently been diagnosed with EDS, she also has(CRPS) Complex Regional Pain Syndrome, which use to be RSD and POTS. On Wed her right ankle subblexed and is now dystonic and subblexed. When her right foot became dystonic, we started her on Baclafin 10 mg. 3 x day. I am extrememly concerned that her tendons may contract given that her foot cannot be straigtened out. I am trying to find a physiatrist to see her, but of course it is next to impossible. Any suggestions, thoughts, leads? We live in Southern Ca.
Thanks so much.
Barbara

Report post

4 replies. Join the discussion

You HAVE to have your daughter evaluated at the RIC: http://www.ric.org/conditions/chronicpain/adolescentpain.aspx
My 9 YO just completed the program and she is so much better now. We met several other kids who had chronic pain and everyone was doing better within weeks. It's a max 8 week program, and many kids do so well that they are discharged at 4-6 weeks.

Report post

I agree that this shouldn't wait.... Is there someone at UCLA Childrens - maybe in the ortho dept.... that can help? Someone needs to get a look at that foot for the reasons that you mention - you want to avoid any possibility of things changing in a permanent way that's undesired...Was it a pediatric neurologist that ordered the Baclofen for the spasms? Does Baclofen do anything to help? If there's no one to help -- I wouldn't be above just going to the ER of a major pediatric hospital and just say - Look at this foot - it's been like this since ____. The medication isn't helping - and we are scared out of our wits about this - she's just a little girl and this is not normal.... WHAT shall we do? Then allow them to do what they do - hopefully call in any expert that would be best - be it neuro, orthopedics, physical medicine and rehab, pain management - But the good part being they can't turn you away - the ER is a one stop shop and if it's a peds ER doctors that ONLY see kids will see her - and if they don't want to deal with it - they will have to give you a referral and follow up appt. or a name and number of who to follow up with ...

Another idea would be to call her 'main' doctor -- if you get nowhere there - wait till the office is closed and speak with the telephone triage nurse for ideas - or pick the brain of the on-call doctor that evening - bottom line is that sometimes you have to be the squeaky wheel to get things in motion - and I agree in kids and issues as important as feet and ankles - you want prompt intelligent care. Good luck!

Report post

I went to the RIC because my daughter was in unbelievable pain and we couldn't deal with any more people who had never seen EDS before. She is something like child patient #6 with EDS who was helped by the program, and I am amazed by how much they have been able to help her in one summer. At RIC, I met people from all over the country who could not find comparable programs in their home towns... including NYC and Boston patients. At RIC, the pain management program is led jointly by an orthopedist and a psychologist, and they have PTs and OTs who report to them working on your case. The ability to deal with the head, the body, and the functions all at one really helped us break through a pain cycle that was only getting worse until we got there. I started out thinking there must be similar programs around the country, but now I am convinced that right now, RIC Chicago is the only one for kids. I believe in 5 or 10 years there will be programs like this all over the country. But there does come a time when you are no longer willing to let your child go one more day with their pain and you just bite the bullet and turn your life upside down for a month or two to get your life back. It's not like you have your life when your child suffers that much anyway...

Report post

Thank you so much for the information. SInce my post, we increased the baclofin and after 1 week, she had her leg put into a walking cast for one month. SInce coming out of the cast, her ankle has stayed in position and she is staying on 15 mg of Baclofin 3x a day which seems to be helping with all of her subluxing issues. She is doing PT to strengthen her muscles. When she was first diagnosed with RSD, she went to the in-pt pain program at Cleveland Clinic and then 6 months later, when her RSD spread to her other knee and she was in a wheelchair again, she went to the Children's Institute in Pittsburgh as they had an in-pt program that specialized in RSD. Right now her biggest challenge is her dysautonomia and POTS.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders