Crohn's and hypermobility syndrome

[CarolinAlaska]

As we embark on a new rabbit trail involving my daughter's new diagnosis of hypermobility syndrome, I've been reading a lot about hypermobility syndrome and Ehler-Danlos syndrome. I think that it may be helpful to have a thread for anyone with similar diagnoses to share their stories, and support one another.

 

[Maya142]

My daughter has hypermobility syndrome. She's on NSAIDs and does PT for her arthritis, and that helps with the hypermobility too. She's also recently started swimming and we're hoping that will help too.

 

[Farmwife]

My kiddo had it also. EDS is a possibility for Grace but the doc wants to wait until she's 9 or 10 to see if she loses some of her hyper mobility. She does not have the elastic skin but you also don't need it to have EDS.
She does PT and OT and we'll be staying more therapies soon.

 

[my little penguin]

DS has hypermobility crohns and arthritis
He does swimming to increase muscle strength
And uses NSAID gel ( volteran ) as well as paraffin wax
And a tens unit

 

[Maya142]

We are big fans of TENS units! M uses hers a lot for pain in her back.

 

[my little penguin]

Same here back and belly pain
Two for one

 

[CarolinAlaska]

This study wasn't done on children, but I find it interesting. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821781/#!po=24.1935

 

[Maya142]

I'm confused Carol - what have they diagnosed J with? You said arthritis first, but then hypermobility? Has she been diagnosed with both?

Have they suggested any treatment for the hypermobiity - PT or any sort of strengthening exercises, for example?

The study is interesting - especially considering both my daughters have both SpA and hypermobility. Despite the fact they have some hypermobile joints, their backs are both VERY inflexible. They also have both lost some ROM in their hips, my younger daughter more so than my older one.

No one has ever mentioned EDS for either of them, but we have a family history of AS so maybe that's why.

 

[Clash]

I just wanted to bring this up because I keep seeing more and more about JH and EDS. In my research about my issues I've found a lot of info that doesn't relate to me personally but has interesting connections among diseases.

There was a Mom on here when I joined that had a daughter with dysautonomia and also CD. I didn't know what dysautonomia was then but since my dx of Postural orthostatic tachycardia syndrome and then inappropriate sinus tachycardia I read so much.

EDS is commonly associated with dysautonomia(autonomic dysfunction) but there are several studies that have linked JH, EDS, CD and dysautonomia.

I've read a number of studies just by using Google and the key words Dysautonomia and EDS and CD.

There are a number of kiddos on the other forum that suffer from all 3. Each it seems came to one dx first but didn't fit within a box completely. A lot were first diagnosed with dysautonomia due to tachycardia issues, fainting, autonomic seizures and then later dxed with EDS , CD or functional GI problems.

Worth a read if you get one or two of these diagnoses.

 

[CarolinAlaska]

Clash, I am seeing a connection and it makes me wonder what is causing what. I am suspecting that my oldest daughter may have dysautonomia, but, thankfully I don't see it in J. What are autonomic seizures?

Maya, the rheumatologist said for sure she has hypermobility syndrome. He is unsure now about the Crohn's related arthritis because the prednisone and 6MP could be masking other things. We are waiting now to get all the labs back. The sacral spine xrays were thankfully normal. So far he hasn't given her any plan.

 

[Maya142]

Glad they were normal, though at this age, you'd expect them to be normal. Really an MRI would be a much more accurate test. But he's right, pred might be masking things - it might make an MRI seem much better than it really is, for example.

Sending hugs - hope you get some answers for J soon. This whole wait and see thing is getting so old!!

 

[CarolinAlaska]

Glad they were normal, though at this age, you'd expect them to be normal. Really an MRI would be a much more accurate test. But he's right, pred might be masking things - it might make an MRI seem much better than it really is, for example.

Sending hugs - hope you get some answers for J soon. This whole wait and see thing is getting so old!!

I totally agree!

 

[CarolinAlaska]

Maya142, how did the swimming help?

 

[my little penguin]

Ds does swimming as well
Per Rheumo
No stress on joints but allows the muscles to be built up around the loose joints
This protects them more
No jarring so joints don't hyper extend etc...

 

[CarolinAlaska]

Does your son find it helpful? I'm trying to figure out a way for my daughter to make this happen on a regular basis. How much swimming does she need to do?

 

[my little penguin]

Ds feels like a new kid after the pool
He swam competively from age 6-12
He swims at the YMCA three days a week during fall winter and spring - pool is heated
Rheumo gave him water exercises
For summer we have a heated pool so he swims everyday

 

[Maya142]

My daughter swims 1-2 times per week usually (she's had to take a break recently because of hip issues).

She swims more often in the summer - 3 times or so. It helps a LOT. Often I have to nag her to go because if she is stiff and sore, the last thing she wants to do is move.

But once she's there, she's happy and she always feels better after swimming.

Her rheumatologist has always said swimming is the best exercise for her. She has also done Aqua PT which was a great help. She now does regular PT twice a week.

Her rheumatologist always tells her we need to strengthen her muscles so that they support the joints well. And also keep her joints flexible (she has lost a lot of flexibility in her back because of the AS).

Good luck!!

 

[Tesscorm]

Had only skimmed this thread in the past but now find the CD and hypermobility connection interesting. Ortho said S had hypermobility - at least, in his elbow. He saw it when he asked S to straighten his arm but didn't specifically check any other joints. If you have hypermobiity, does that mean it applies to all joints? Or can it be specific to certain ones? Ortho explained it left his joints 'looser' but didn't seem very concerned. He did say this might have contributed to S's multiple dislocations (altho no question his dislocations have been caused by forceful impacts/falls but, perhaps, it wouldn't have initially dislocated if not for the hypermobility??).

 

[CarolinAlaska]

Had only skimmed this thread in the past but now find the CD and hypermobility connection interesting. Ortho said S had hypermobility - at least, in his elbow. He saw it when he asked S to straighten his arm but didn't specifically check any other joints. If you have hypermobiity, does that mean it applies to all joints? Or can it be specific to certain ones? Ortho explained it left his joints 'looser' but didn't seem very concerned. He did say this might have contributed to S's multiple dislocations (altho no question his dislocations have been caused by forceful impacts/falls but, perhaps, it wouldn't have initially dislocated if not for the hypermobility??).

Tesscorm, hypermobility syndrome looks at the Beighton and Brighton scores, which test several joints specifically as well as nonjoint related symptoms. Look up Ehlers-Danlos syndrome, hypermobility type, and read about that. I think anyone who says that hypermobility is a benign condition is ignorant as it is a connective tissue syndrome that can range from mild symptoms to severe disabling disease. It isn't very common in the general population, and in my experience, most doctors are pretty clueless about it and therefore aren't very helpful. In the U.S., some rheumatologists, like J's, are knowledgeable about diagnosing it, but less so about managing it. From what I read, a geneticist with a special interest in connective tissue disorders is the best person to have on your specialist team to help diagnose what type one has, but also to help manage it. In my opinion, if your son is having multiple dislocations and loose joints as well as GI problems, it would be beneficial to ask for a referral to a geneticist to help rule out several connective tissue disorders that cause these issues and much more.

 

[Maya142]

Not everyone with hypermobility has EDS, though, right?

I just ask because my daughters' rheumatologists have both told us they are hypermobile. But only certain joints seem to be - their elbows and shoulders for example.

We have been told hypermobility is not a big deal - they both do PT and swim, but I would imagine theirs is as mild as can be. It can certainly cause extra joint pain and that is of course, not any fun.

I have researched EDS since Gastroparesis is common with it, but it doesn't really seem to "fit" for my daughter.

 

[my little penguin]

Maya is right not all that is hypermobile is eds
There are criteria AND type III is mostly benign /extremely common
A few folks can have more extreme cases
The other types are not as common and not necessarily benign
I have extremely mild type III - yes it can cause other things but not anything critical

 

[Tesscorm]

In August, coincidentally, we have S's GI follow-up two days before his surgery. I'll research before then and will then have the opportunity to speak to both specialists. I did read a bit about it (but, really just generalized sites) but, what I'd read hadn't implied great concern (except in more severe cases) so I hadn't put much more thought into it.

S's first dislocation was caused by trauma, so it can be explained (of course, there could be the question of whether the trauma would have resulted in a dislocation without hypermobility??) and his ortho ddi say hypermobility could/would leave him vulnerable to dislocations. To be honest, I can't say for certain whether he was referring only to his injured shoulder or just future dislocations in general... but, an easy question to ask him.

He didn't do any special testing - just asked him to straighten his arm and saw the elbow hypermobility. But, other than his comment above, he didn't seem overly concerned. I don't have a copy of the report from his rheumi apptmt (chest issue) but I'll ask his GI if it was mentioned in her report. (GI has copies of all these reports as he's made the referral to both specialists and all work out of the same hospital.)