TICMOMOFF1
New member
Anyone out there with these two together? Our 10 yr old has both of these and wondered if there is any studies on this or recommendations & if we should do her cpt treatments different.
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Cystic Fibrosis and Hypotonia
- Thread starter TICMOMOFF1
- Start date
lilmac1177
New member
may i ask ... what is hypotonia?
Low muscle tone...I have CF and some sort of myopathy which makes my muscles in my lower legs, diaphragm and arms on the weak side. I don't think that they are related, if anything it is probably related to another inherited disorder that I have called Ehler's-Danlos syndrome, but you never know. I wish I had more answers for you...
Jenn 41 wCF
Jenn 41 wCF
T
Tombliboo
Guest
I have Ehlers Danlos Syndrome too JustDucky (and CF)! I also know of at least one other CF adult with it and a CF child with hypermobility (which is what Ehlers Danlos is).
Wow! I have only known one other person with EDS and CF, nice to know others with the same issues are out there. The hypermobility is something else, causes my joints to dislocate at will (dislocated my hip during childbirth) and I have pretty much everything else that goes with this syndrome (very poor eyesight, high palate, arrhythmias and yes...hypotonia). It's sometimes hard to differentiate between what is CF related or EDS related as they both involve so many systems. I also have a bleeding disorder that makes my blood clot way too easily....complicates my CF as I have occasional hemoptysis and I'm on blood thinners for life.
When were you finally diagnosed with EDS Tombliboo? I was diagnosed about 4 years ago after being called nuts by 3 different rheumys , saying that since my xrays weren't horrible, that the pain was not real. Pfffft....I ultimately found a geneticist who specialized in collagen disorders and he immediately thought EDS. After some tests and a very thorough physical, I was diagnosed with EDS III. My daughter has hypermobility joint disorder (not the full EDS syndrome)...in fact, if she didn't have pain in her joints and didn't dislocate them, I would never have found my current doctor and who knows, I would have still been asked to see a shrink. Anyhow...my biggest problem with EDS is pain control (and accidentally dislocating my ankles or knees). CF was a late diagnosis with me as well, at 33. I am 41 currently....it was quite a journey to get the correct diagnosis and care, but I finally am getting it after years of being treated for asthma or allergies along with chronic infections.
Jenn 41 wCF
When were you finally diagnosed with EDS Tombliboo? I was diagnosed about 4 years ago after being called nuts by 3 different rheumys , saying that since my xrays weren't horrible, that the pain was not real. Pfffft....I ultimately found a geneticist who specialized in collagen disorders and he immediately thought EDS. After some tests and a very thorough physical, I was diagnosed with EDS III. My daughter has hypermobility joint disorder (not the full EDS syndrome)...in fact, if she didn't have pain in her joints and didn't dislocate them, I would never have found my current doctor and who knows, I would have still been asked to see a shrink. Anyhow...my biggest problem with EDS is pain control (and accidentally dislocating my ankles or knees). CF was a late diagnosis with me as well, at 33. I am 41 currently....it was quite a journey to get the correct diagnosis and care, but I finally am getting it after years of being treated for asthma or allergies along with chronic infections.
Jenn 41 wCF
T
Tombliboo
Guest
I was diagnosed with CF at 4 weeks old (I'm 39 now) and with EDS III in February 2010. I am just wondering if you use a website forum called 'CF Mothers'? Only I know there is a Mom on there with a daughter and both have EDS (user name is Beccasmom I think?) If not, there's another one of us haha! My son is also majorly hypermobile and has hypotonia, along with lots of bowel problems. He may well have EDS (there's a 50% chance of it) but he's currently being tested for chromosomal problems as a first step. I am lucky that I've never had a dislocation but I do suffer with other symptoms - joint pain, bowel problems, chronic fatigue, POTS (which means I can't stand for more than a minute or so as I go faint and my blood pressure drops), etc. I have also had surgery for scoliosis and was born with club feet. Like you, I find it hard sometimes to know where one condition begins and the other ends! x
No..I haven't been to that site, will have to check it out. That's the thing about EDS, it has that 50/50 chance of passing it to your kids. My son as far as I know, doesn't have it, he does have a bad back at 19, perhaps the discs are a bit too slippy and he also has poor eyesight and a high palate. It sounds like your son could easily have it or at least some related syndrome. I know as I get older, I have more and more issues with my joints. I also find that I bruise extremely easily along with terrible scarring for even the most minor of procedures. I always tell surgeons/docs to avoid sutures if possible and use crazy glue to close minor incisions (like for my port placement). Even so, I have wicked scars where they were placed as well as all over my body. I have very stretchy skin, freaks people out whenever I demonstrate this. Everytime I am in the hospital, I always get visited for grand rounds and the docs love seeing how flexible I am (I can dislocate my wrist joints and get out of hand cuffs lol) as well as my stretchy skin. It also boggles their minds that I have not only CF but EDS as well. I think the one thing that I often wonder is if I have CFRA versus joint pain from my EDS or both...I guess they both could over lap as far as symptoms go.
Jenn 41 wCF
Jenn 41 wCF