Ehler Danlos - Hypermobility questions

1807 Views 22 Replies 11 Participants Last post by MyTwoAs, Jun 12, 2009

MyTwoAs

Discussion Starter · Apr 24, 2009

Hi Mommas,

I took my daughter to the pediatrician today as she's been having joint pain for a few months now. We've been watching it and really haven't noticed any rhyme or reason so decided to go in. Although we have a history of autoimmune disorders in the family, her symptoms aren't consistent with juvenile rheumatoid arthritis. The ped. did some flexibility tests with my daughter and then asked about a family history of Ehler Danlos.

I told her that I wasn't sure but that several of us in the family do have some loose joints (thumb laying down on the arm, toes can bend back 90 degrees, hip dysplasia, etc) and early-ish osteoarthritis (I was dx'd with arthritis in my hips a few years ago in my early 30s, symptoms started in my late 20s). The doc said she's not super familiar with the diagnostic criteria/protocol of Ehler Danlos so is going to look into it and then get us a referral to see another doc (she mentioned an ortho).

In the interim, I'm looking for input (or with the new UA on medical information, links) on ways that I can help ease my daughter's pain. Today it is her right knee that has been bugging her. She was in tears earlier and after some advil and massage, it went away. Once the advil wore off she was in tears again. I've finally got her to sleep. However, I don't want to just feed her advil all the time but I don't want her in pain either.

For those who have dealt with pain in their joints, or have a child who does, what have you found helps ease the discomfort? Also, any links out there with general hypermobility/hyperflexibility information for pediatric patients?

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lightheart

· #2 · Apr 24, 2009

I'm signed up for eMedicine's "what's new" newsletter that comes to my email, just today I got the one for April and there's an article with link in it to Ehler-Danlos,

New form of Ehlers-Danlos syndrome potentially identified
From Ehlers-Danlos Syndrome, Pediatrics: Genetics and Metabolic Disease

http://emedicine.medscape.com/articl...w_nl_0#newform

The article was updated Mar 25, 2009 so pretty new info, don't know if it will help you guys or not, hope it will.

youngwife

· #3 · Apr 24, 2009

My oldest daughter has hypermobility. She has not yet been evaluated by a geneticist, but we suspect that her " connective tissue issue" (Sorry, couldn't resist!!

) could be from EDS.

But, since we live in Mississippi, I am not convinced that we would be able to get it diagnosed. My daughter also has Chiari, and it can be connected with EDS, but few geneticist know much about that connection, unfortunately.

Rachael has had to stop playing the piano, can not stay on the computer for long periods of time, can not stand for long periods of time, or do reptitive motions because of her shoulder pain.

I truly know the pain that this can cause, and the frustration at not being able to help.

I'd love to share any info, and keep in touch!

Rebecca

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lil_stinkyfeet

· #4 · Apr 24, 2009

By son has hypermobility as well as some other things. So far we don't have a diagnosis but are looking into Marfan's and a few others.

I don't really have any advice for the joint pain as he is only 4 and we haven't dealt with any problems yet. I will be watching this thread though.

loraxc

· #5 · Apr 24, 2009

DS is low tone and is very hypermobile, but if has pain we are not aware of it (he's 14 months). We looked at ED but ruled it out, though I sort of forget why,

williamsmommy2002

· #6 · Apr 24, 2009

I have EDS although I have the classic type. The hypermobility type is quite common. During my childhood I used higher dosage ibuprofen and narcotics when I had injuries. The pain can be pretty bad, even very young. I was also able to sustain some pretty severe injuries without much pain at all.

I did wear braces of various sort for joint stability. I do have what is considered a pretty severe case of it symptom wise and wasn't stable enough to walk without braces until I was 6. The one thing I would say is that having more of a disability at a young age really helped with EDS. I was able to protect my joints while I was young and modified my activities accordingly. As a result, my adult self has had a much better outcome than what was previously thought. That is my biggest concern with watching my own kids for symptoms.

The other thing that really helps with pain is moist heat. Cold didn't ever do much for me but heat was my lifesaver at times. I did also use acupuncture at one point when I had severe pain and that helped. Also elevating swollen joints to get the fluid to drain.

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MyTwoAs

Discussion Starter · #7 · Apr 25, 2009

Thanks for the ideas! It was bugging her a bit this morning and again this evening. She fell asleep about an hour ago (it is only 5:30 pm) and when I carried her from the couch to her bed, she didn't wake up. Sleepy little girl.

My daughter was in OT for two years (she is on the autism spectrum) and her tone was on the low end of normal. She was a bit delayed with gross motor development but is doing great now.

She's 5.5 and has only about a year delay in language so is able to communicate with me better about pains, etc which is good. I'll try the heat on it as well as the elevation, good ideas.

Birdie B.

· #8 · Apr 25, 2009

I just wnat to thank everyone for contributing to this thread - especially for that link to the article. We have been searching for a diagnosis for my daughter since her birth, and that article was very helpful. Her orthopedic doctor recently mentioned Ehlers-Danlos, but we didn't pay much attention because her pediatrician and eye doctors had been saying she has another genetic syndrome. But the more I learn, the more her symptoms fit with EDS. She has soft "doughy" skin, hypotonia, hip dysplasia, club feet, and her eye disorder that is related to collagen disorders, and she is very small for her age.

I am definitely bringing this up with her doctors ASAP. Thank you so much!

Kathryn

· #9 · Apr 25, 2009

I have EDS, as do 3 of my kiddos.
EDNF.org is a great site and they have a forum as well.
There's a good book on EDS hypermobility type and it gives some ideas/solutions on pain and such. It's this one: http://www.amazon.com/Issues-Managem.../dp/0981836003
I bought the book and immediately realized things I shouldn't be asking the kids to do (sitting crosslegged, holding a marker a certain way) and I remember those things hurting me as well.

MyTwoAs

Discussion Starter · #10 · Apr 26, 2009

Thanks for the heat recommendation - it helped her tremendously. I also found that when I could distract her from it, she felt better. She had a good day yesterday with regards to her knee but her wrist was really bugging her. Go figure. =P

Kathryn - thanks for the book rec, I'll have to get that. I tried registering on the EDNF.org website and just chose the free registration but couldn't see the majority of the forums. Do you know if you have to register at the $15 level to get access to the forums? I could only read one forum and there were only a handful of posts there.

youngwife

· #11 · Apr 27, 2009

Quote:

Originally Posted by MyTwoAs

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Thanks for the heat recommendation - it helped her tremendously. I also found that when I could distract her from it, she felt better. She had a good day yesterday with regards to her knee but her wrist was really bugging her. Go figure. =P

Kathryn - thanks for the book rec, I'll have to get that. I tried registering on the EDNF.org website and just chose the free registration but couldn't see the majority of the forums. Do you know if you have to register at the $15 level to get access to the forums? I could only read one forum and there were only a handful of posts there.

If it's the same one I tried, yes, you do have to pay to register. I spent a good 3 hours on the computer trying to figure out why I couldn't see the posts!!

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MyTwoAs

Discussion Starter · #12 · Apr 27, 2009

Thanks youngwife, I gave up after about 45 mins - you are far more persistent than I. =P

youngwife

· #13 · Apr 27, 2009

Quote:

Originally Posted by MyTwoAs

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Thanks youngwife, I gave up after about 45 mins - you are far more persistent than I. =P

Or just not as bright as you are!!

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EJP

· #14 · May 3, 2009

we use epsom salt baths for the joint pain.

pixiekisses

· #15 · May 3, 2009

My friend with EDS (classic) says elevated limbs, like putting the legs up, having a pillow between her legs if she's on her side, hot water bottle, warm baths, massage (muscle relaxant oils in the bath and with the massages) and pain killers when needed. (Ibuprofen, because it decreases inflammation.)
Don't use bandages all the time, it can help to support, but it's important that the kid train the little muscles around the joints to get stronger. (Same with braces.)
It's very important with good and right shoes with good support, also over the ankles.
Clothes that's not tight, it can hurt outside the joint.

MyTwoAs

Discussion Starter · #16 · Jun 3, 2009

Just wanted to thank everyone again for the pain control ideas, these have helped my daughter tremendously. She has her appointment with the orthopedist in a couple of hours. It is at the local children's hospital and the doctor was ranked the best pediatric orthopedist in the entire metro area (I'm in Phoenix) so hopefully it will be a productive appointment from which we get some answers.

MyTwoAs

Discussion Starter · #17 · Jun 4, 2009

Ugh, another referral. He wants us to see a ped. rheumatologist.

williamsmommy2002

· #18 · Jun 4, 2009

Well at least you will hopefully get answers.

I'm going to ask for a referral for ds2 when he goes to the ped next week. I just have seen too many signs of it lately. I'm also concerned with him starting school.

MyTwoAs

Discussion Starter · #19 · Jun 4, 2009

Good luck with your ds2's appointment Misty. I was happy with the ortho and what he says makes sense but I hate the several month wait thing hehe.

lisas mom

· #20 · Jun 5, 2009

I am the local group leader for south florida for ehlers-danlos, my child has hypermobile ehlers, chiari/cranial settling[ the connective tissue cant hold the head on the spinal cord properly] and POTS, she cant keep enough blood up in the head.It took years to get the correct diagnosis. Hypermobile EDS does not have a DNA marker, vascular and classical do. EDNf.ORG is the primary site for info, they are also on Facebook.
The best ehlers-danlos docs are 1. clair francomano in baltimore 443-849-3131, she also is very good with the chiari issues.
2. Brad Tinkle in cincinnati 513-636-7297, he wrote a book called Issues and Management of Joint Hypermobility [ my bible] They both are worth the time and money to see, as they have hearts of gold.
Any more questions, post to FB- Linda Tupler-Simmons or [email protected] I live in Ft Lauderdale, Fla so we travel alot for good docs too

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