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Hypermobility
Any thoughts would be greatly appreciated


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#1 meerkat

Posted 12 November 2012 - 01:28 PM

Hi All

My youngest , Peter has recently been diagnosed as being hypermobile (we think).
He is one year old now - can't roll, cannot do anything from lying down (ie can't get into sitting position, roll over etc), he can't crawl, or bum shuffle or move at all, and he can't walk.

What he can do is he can sit and he can bear some weight on his legs.

I am so utterly bewildered by everything and feel like we have been shunted from clueless place to place.
Our history:  I knew something wasn't right about 6 months ago. Since then it has been a fight to just get someone to assess him.
GP referred us finally at 8 months after much badgering to have an ultrasound of his hips - found out at the appointment that they cannot ultrasound an 8 month baby, so he had xrays. Xrays all clear.

Back at GP I insist I want further testing. GP refers us to an "Assessment centre". I make an appointment - earliest is February (appointment made four months ago). I recently found out that the Assessment centre we were referred to is actually just a Paediatrician who specializes in Autism?????

In the mean time, I took Peter to see a physio (referral from another GP). Physio said that they thought he had arthritis. Went to Paed Arthritis specialist  (wonderful man saw us the next day )- he said that its definitely hypermobility, not arthritis. He said he would send an email to physio re what she should advise us.

A few weeks later went back to physio. Told her it isn't arthritis, but specialist thinks its hypermobility. Physio says that is what she thought all along (?? then why send me to arthritis specialist). She has just come back from holiday and apparently hasn't checked her mail. We spend an hour there with her not telling us much at all except to get a walking ring to get his legs moving and take him swimming.

This has all happened over the span of 6 months! I am incredibly frustrated. I feel like all we have been doing is going on wild goose chases. Problem is that each wild goose chase means a long wait for a specialist appointment (with the exception of the arthritis specialist), which means wasted time.

What do I do now? Physio wants to see us again next month. Honestly I don't see the point as she hasn't really done anything to help at all. The Autism Paed appointment is coming up in February - I am going to cancel that one as he definitely is not Autistic.

I feel like I have spent a lot of money and wasted a lot of time and I am still nowhere. Considering all the mistakes, I don't have a lot of faith in anyone I have seen so far. I don't really feel as if I am anywhere at all - like after all of this, I don't have a proper support plan or treatment plan etc.

Any advice would be most welcome. I really feel like the GP's etc that have passed us around so far have less of a clue than
  we do. Where do we go from here? Is this just something I leave and hope he eventually manages to get mobile? How do I get a confirmed diagnosis (I am a little doubtful at this point considering the whole rigmarole).? Any thoughts or help would be enormously appreciated.

#2 waawa17

Posted 12 November 2012 - 02:04 PM

QUOTE (meerkat @ 12/11/2012, 11:28 AM) <{POST_SNAPBACK}>
What do I do now? Physio wants to see us again next month. Honestly I don't see the point as she hasn't really done anything to help at all. The Autism Paed appointment is coming up in February - I am going to cancel that one as he definitely is not Autistic.



Hold the phone on that cancellation - who is the paediatrician? Paeds who specialise in autism are still full paediatricians, and an autism area of special interest probably means they're a developmental paediatrician, which could be an entirely appropriate assessment referral.

#3 weekendsrule

Posted 25 November 2012 - 10:30 PM

Well, first of all, big huge (((hugs))).  I can empathise with your frustration, believe me.

A few things...

One is that I am a qualified child care worker who spent time working in a role that was to provide one on one with kids with ASD - And I didn't pick up Aspergers in my son until he was four/five years old.  Sometimes, it is just not that obvious at first.

Also - hypermobility is one of the least known about conditions in the world.  Seriously.  Most doctors can not tell the difference between flexibility and hypermobility and those that do know what hypermobility looks like, know so little about the parent condition - Ehlers Danlos Syndrome - that seeing them is usually a waste of time.

Also - some think that there is a link between ASD and EDS.  A lot of kids with ASD have low muscle tone, which can be an indicator for hypermobility.

Personally - who knows at this age...  He may have both, or either, or just be a really late developer.  Only an expert is going to be able to tell for sure.  Your main problem is going to be finding that expert.  I have had a rheumy tell me that I can't have EDS because I don't have heart problems.  This is wrong.  She also told me that I had hypermobility but not EDS - whereas current research indicates that hypermobility IS EDS - hypermobile type.  If you do some research, you will find that this lack of information, and wrong information, is common.  It took eight years of disability for my diagnosis - and I'm one of the lucky ones!  In the end, I found a geneticist/paed to diagnose the boys and myself.  It was well worth the money (there is a lot of support you are not eligible for in QLD until you have a diagnosis).

I would keep the paed appointment, and bring up both ASD and EDS and see what he thinks.  I would also do some research and find out a little about EDS so that you can ascertain whether he knows his stuff or not.

Please feel free to PM me any time.

#4 jks91

Posted 26 November 2012 - 10:42 AM

QUOTE (weekendsrule @ 25/11/2012, 08:30 PM) <{POST_SNAPBACK}>
Also - hypermobility is one of the least known about conditions in the world.  Seriously.  Most doctors can not tell the difference between flexibility and hypermobility and those that do know what hypermobility looks like, know so little about the parent condition - Ehlers Danlos Syndrome - that seeing them is usually a waste of time.


This.  My mum, sister and I all have EDS - the hypermobility type and we have spent so long explaining what it is to doctors, physios etc.  

When we were first diagnosed mum spent some time on this site http://edsaus.ning.com/.  They might be able to point you in the direction of hypermobility-savvy medical professionals in your state.

#5 Carmen02

Posted 26 November 2012 - 10:51 AM

my first two children have hypermobility (EDS) and there are alot of doctors that know nothing about it, they got diganoised in perth we now moved to melb and by some magic powers they say nothing is wrong with them Ive hit a brick wall in all areas to do with their hypermobility. I know there is a problem there but the specialist here doesnt think so. I know it can be quite expensive but hopefully you get some answers real soon! my 8yr old suffered so many dislocations in his life and is struggling with sore knees (and they say his not hypermobile  rolleyes.gif )

#6 CatĀ©

Posted 26 November 2012 - 11:55 PM

I have 5 ALL with EDS (hypermobility) and autism, I also have EDS. My husband has been diangosed with hypermobility.

Dont cancel anything if you dont have to and keep the appointments, are you in WA? If so who did you see and whos the paed?

#7 *lightning

Posted 27 November 2012 - 12:08 AM

I agree with PP's keep that appointment, you wil be seeing a developmental paed.

#8 Brissygal

Posted 04 January 2013 - 02:48 AM

i have a question for all you ELS sufferers, do you suffer more in the hot summer conditions?

My 18mo has just been diagnosed with low muscle tone and hypermobility. He seemed to be doing great in winter but the summer before he had issues and now he seems to be doing more poorly now the weather is really hot again?

#9 sophiasmum

Posted 04 January 2013 - 08:31 AM

Sorry in advance, long story follows.

My DD2 only ever commando crawled, never 4 points, & couldn't transition from one position to another (eg. crawling to sitting). But she could sit if put in that position. She wasn't pulling to standing let alone cruising furniture. She also had solid feeding issues (gagging, vomitting food) which I had seen several doctors & paeds about previously, who just put her on reflux meds. But at 12 mths I took her to the baby clinic for her 1 yr check, mentioned all these concerns & they referred me firstly to a speech path specialising in feeding issues to get that sorted. Which we did with a lot of hands on therapy. And secondly to a child physio who saw us weekly for a couple of months & then less frequently but did exercises in the clinic & also for us at home to get her hitting the correct milestones. She suggested mild hypotonia, and this can also affect feeding because it's all using muscles, which finally made sense of all her challenges. Finally at 16 mths she began 4 point crawling, and at 18 mths began walking. So from about 13 mths to 18 mths it was not quick, it took a lot of work, but we got there in the end & you would never know she had those issues now.

To get to my point, my advice is to find a good physio who will be able to help you in the correct way. Good luck & all the best.

#10 Therese

Posted 04 January 2013 - 08:34 AM

I have just moved this to the babies and kids with disablities and special needs forum as you may get more replies there original.gif

#11 whatnamenow

Posted 04 January 2013 - 06:56 PM

QUOTE (Brissygal @ 04/01/2013, 02:48 AM) <{POST_SNAPBACK}>
i have a question for all you ELS sufferers, do you suffer more in the hot summer conditions?

My 18mo has just been diagnosed with low muscle tone and hypermobility. He seemed to be doing great in winter but the summer before he had issues and now he seems to be doing more poorly now the weather is really hot again?


POTS is fairly co-morbid with EDS and can cause more fatigue in warmer weather. Also EDS just makes you more tired in general.  Your muscles simply have to work harder. Even a normal person often doesnt want to move to much in warm weather.  personally My DD is better in summer but thats because we can increase the hydrotherapy and general swimming in the warmer weather.

Please anyone come and find us at EDSAUS.  We are a rather helpful bunch.

#12 Megs25

Posted 04 January 2013 - 07:30 PM

I would be insisting on blood and urine tests to rule out anything obvious to start with that may point you in the right direction.



#13 LittleMissPink

Posted 05 January 2013 - 02:32 PM

See the paediatrician, they will be the one that can offer more info and ideas on what could be happening. The GP has limited knowledge, as does the physio, the paed will know more!

Yes it is a goose chase sometimes, my daughter is 3.5 and we still dont have a Dx, have seen Geneticist, physios, paeds, had blood tests, MRI, ultrasound, wee tests, more blood tests, and now waiting for another MRI. You get used to it!

#14 mummabear

Posted 05 January 2013 - 10:00 PM

QUOTE
She also told me that I had hypermobility but not EDS - whereas current research indicates that hypermobility IS EDS - hypermobile type.


Can you link to any documents on this? How much hypermobility do you need? My ds is very very hypermobile in his feet apparently as well as other places. I was recently told I have hypermobility in my ankles as well. My dd also. The level of knee pain in my kids is awful. Could this be EDS? I have asked this a long time ago, but ds was diagnosed with CP. I wonder if it is co morbid with EDS? A question for his team when he comes under review?

#15 HoneyMurcott

Posted 06 January 2013 - 08:06 PM

QUOTE (mummabear @ 05/01/2013, 11:00 PM) <{POST_SNAPBACK}>
Could this be EDS? I have asked this a long time ago, but ds was diagnosed with CP. I wonder if it is co morbid with EDS? A question for his team when he comes under review?


Mummabear - you can certainly have both CP and EDS. Our DD was diagnosed firstly with EDS but has significant hypotonia and also has retained some primitive reflexes so was assessed for CP - which she doesn't have ...... but it was a distinct possibility. Quite a few other EDS kids I know of (several here on EB) have been assessed (sometimes repeatedly) for CP and some had an initial diagnosis of CP that was then changed to EDS.

The diagnostic criteria for EDS Hypermobility Type (Type 3) is here.

ETA: If you 'google' the Beighton Criteria you will be able to test your children's hypermobility at home. I think you can get a diagnosis of EDS from a 5 out of 9 if you meet some of the other diagnositic criteria. Our DD is a 9/9 and is extraordinarily hypermobile in many other joints not assessed through the Beighton.

Edited by HoneyMurcott, 06 January 2013 - 08:10 PM.


#16 mummabear

Posted 07 January 2013 - 01:20 PM

HoneyMurcott thank you for that information.

Both my boys scored an 8... BUT a few of the moves were only just and definitely end range...so I am wondering if that counts! Their knees and elbows definitely stretch back, that was easy! It was the thumb and pinky test where they both just touched their arms at a stretch, and pinkies both just a fraction past the 90 degrees. Possibly only like 92 degrees, but past nonetheless!

It was very helpful thank you. Now what to do with that information!

#17 Sydmumma

Posted 07 January 2013 - 04:39 PM

Hi,

At first dealing with an developomental issue can be confonting and confusing.  You are doing the right things by investigating what to do next.  Once you meet a good pead. you will be on your way and get the help you need. I know this, as I have been there. My daughter was also hypermobile with lax ligaments (flexiable and loose around her joints).
We discovered this when she was 9mths, when I realised she was not hitting her milestones (so good on you for picking things up aswell - I know some people prefer to bury their head in the sand/or dont get the apporpraite advice).

Yes, there are some kids that are slightly hypermobile and with physio, it can improve and they are on there way.  Yes, there are also various conditions and syndromes linked to hypermobility and low tone (there are 100's and I promise Googling them, will only cause you more grief then good - ive been there - but do it if you must - beware tho). EDS is usually pick up very young and can be severe - its rare, but one of many.

There are various methods of diagnosis (if any is uncovered) but that will come down the track if your Pead. feels necessary to investigate further.

Right now, you will need to find a good Physio that specialises in children only and ask them if they treat other children with this condition. You will work with a physio that will treat your son and give you excersises to do at home, everyday.

Find a reputable Pead. that may see alot of children with special needs (Im not suggesting your son is, but these Pead. are usually up with service providers for kids with additional needs and funding -for if you do or dont need that down the track).

My child is 2.5 at at 18mth we got a MRI (we could not have this done sooner) which picked up an abdomality with her cerebellum (part of the brain that controls balance and movement).  Kids with damage to this area have low-tone and hypermobility (not saying this is the reason for your sons hypermobility tho).  Her diag. is long but she falls into the catagory on Hypertonic/Ataxic Cerebral Palsy.  She is progressing all the time, but will walk and talk later then other kids.  She needs lots of therapy, so that is my role and prority as a Mother to her. She is a delightful little girl and still feels blessed that she is part of my life.

Good Luck.

#18 weekendsrule

Posted 07 January 2013 - 05:14 PM

EDS has with it other symptoms too - it's not that hypermobility itself means that someone has EDS - it is that Hypermobility Syndrome (with capitals) is the same as EDS (they used to be two different "things").

In order to have an EDS diagnosis, there has to be other signs of screwed up collagen...  Do your kids bruise easily for no apparent reason?  For example, I've had a bruise on my leg now for over a month, complete with all pretty colours and a big lump, and have no recollection of hurting myself at all original.gif.  When I was a kid, my grandmother thought my mum was beating me up!  If your kids have ever been injured, how do they heal?  Do they get growing pains?  Etc etc.  

http://www.ednf.org/documents/EDSinPracticeS.pdf

If you do your research, and think they have EDS, and need a diagnosis, then a rhuematologist is often the first point of call.  89% of rhuemy's in the UK got answers on a test about EDS wrong, and the rate in Australia is probably higher than that though, so ask the receptionist if they have EDS experience, and even then, be prepared for them to get it wrong.   Mine thought you had to have heart trouble to have EDS, but that is only one type - there are many others!  If it's possible, and you can afford it, I would head straight to a geneticist.  In general (although not always), people have more luck with them.  Again, ask first to make sure they have experience with EDS, and even then, question their "knowledge".

#19 meerkat

Posted 31 March 2013 - 02:50 PM

Thanks so much for the useful advice everyone! I have a follow up visit with the developmental Paed next month - I will ask her about EDS.

In the mean time, Peter is now 16 months old. He can now crawl and turn over. He can stand, but not walk yet. He has only just started cruising.

We managed to get into a proper government assessment centre - have seen the physio so far. Apparently Peter is severely hypermobile in his toes, feet, ankles, knees and hips. The physio checked me out and apparently I am very hypermobile too in most of my joints.

At least we are in the system now. The physio said that considering his degree of hypermobility, she is amazed that he has progressed so well.

I am less worried now as he is developing at least. The only worry I have now is that he doesn't really talk. The develpmental paed definitely ruled out autism. He did have a period - from 10-12 months where he couldn't hear properly and had grommets put in. Since then though, his hearing is fine, but he still isn't getting onto the speach thing.

#20 WildMum

Posted 02 April 2013 - 09:47 AM

Amazing what physio can do my girl is 18m and cruising and is borderline EDS. She doesn't talk much either its all muscle related really. Ask for a speech referral





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