Jump to content

Hypermobility
Any thoughts would be greatly appreciated


  • Please log in to reply
19 replies to this topic

#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 jkate_

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 Cat©

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





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Tell us what you think

to WIN 1 of 2 $500 Coles/Myer gift cards

Dealing with a toddler's morning tantrums

Your schedule is not important to your two-year-old, and you cannot convince her otherwise. So what can you do?

Child in suitcase 'could have died eight years ago'

A child whose remains were dumped in a suitcase in the South Australian bush is believed to have been a girl aged between two-and-a-half to four.

MP breastfeeds baby during parliamentary session

An Argentinian mum and politician has caused a stir on social media after being filmed breastfeeding her baby.

My baby's first seizure

It was 1am on a cold winter's night when I woke suddenly to the screams of my 12-month-old son. Our lives were about to change forever.

Portable pools 'more dangerous than permanent ones'

Inflatable and portable children's pools may be required to be sold with compulsory fencing to prevent backyard drownings, with some experts even floating the idea of a ban.

Heartbreaking moment mum kisses her one-week-old goodbye

At 11.07am on April 2 this year, Sarah Marriott welcomed baby Sebastian into the world.

The amazing Tee Pee bed and kid-friendly Frankie Bunk bed

These kids' beds definitely fit the brief of providing personality and personal space for little people who are moving up in the world.

The funny things kids say when you're pregnant

Since becoming noticeably pregnant, my son has taken more of an interest in the sibling he'll soon have.

The real problem with having one child

In this age of political correctness, it seems the one subject still subject to discrimination is that of the Only Child.

Six-week-old baby found dead, believed stabbed

A neighbour heard a child screaming before a baby was found dead, believed to have been stabbed, in a house in Newcastle.

The fire hazard in more than 70,000 Australian homes

So far, 206 Samsung washing machines have caught fire and some have exploded. But many remain in people's homes.

How having a baby can bring on OCD

We all know that having a baby can turn your life upside down - and it can also bring a raft of new anxieties and worries.

IVF gender selection being considered for Australian parents

Couples using IVF may be able to choose the gender of their babies and women could be financially compensated for donating their eggs.

The best age to get married (according to the latest study)

Not too young, and not too old. That's reportedly the best age to get married. Not everyone agrees.

Yes, you can get pregnant before your period returns post-baby

After giving birth, the last thing you want to think about is contraception. But you can get pregnant before your period comes back.

Fellow diner rewards mum after toddler's tantrum

Parents of toddlers everywhere know the feeling. After working up the courage to take your child out for lunch or dinner in public you are rewarded with a mid-meal meltdown. 

IKEA begins massive safety campaign after two toddler deaths

Two children were killed when pieces from their Malm furniture line tipped over.

Beaneasy: sweet nursery furniture with a twist

If you're looking to introduce an organic element into your baby's nursery but want to step away from natural timber, we have the perfect alternative.

A dad's guide to hyperemesis

I am in no way qualified to advise women on how to cope with hyperemesis, but I've learnt some lessons that might be worth sharing with other partners.

Woman adopts best friend's four daughters after cancer tragedy

Best friends share everything - and for these two life-long friends, that includes family.

Baby Leo's mum excluded from $500K trust 'for her own protection'

Samuel Forrest didn't want his wife as a trustee of their baby Leo's half million dollar trust for her own "protection", it has emerged.

Confirmed: men gain weight when they become dads

Men who become fathers experience weight gain and an increase in body mass index, a measurement of body fat based on height and weight, according to a new, large-scale study

Carer investigated over washing machine photo posted 'for a laugh'

She said the photo of a boy with Down syndrome in a washing machine was taken just for fun, but no one else was laughing.

Mum's premature labour nightmare after high tea salmonella outbreak

An opulent high tea at a luxury Melbourne hotel has left 44 people with salmonella poisoning - including a pregnant woman, who went into early labour.

The day my son started a fire

Would you know what to do in a fire emergency? How safe is your home and family?

Prince George celebrates second birthday

Prince George's second birthday has been marked by the release of an official picture showing the toddler smiling as he is held by his proud beaming father.

Which beauty treatments are safe in pregnancy?

Is it safe to use fake tan, hair dye and nail varnish during pregnancy?

The five ways I know my 'baby' is no longer a baby

The truth is, I can no longer deny that my walking, babbling, somewhat-independent little miss is no longer a bona fide 'baby'.

Review: Cybex Platinum PRIAM pram

I'm not usually one who believes in love at first sight but that's exactly what happened when I first saw the Cybex PRIAM.

Get your FREE Baby & Toddler Show ticket!

Get your free ticket to the Sydney Essential Baby & Toddler Show for September 25-27 - register online now.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Tell us what you think

to WIN 1 of 2 $500 Coles/Myer gift cards

Why I'm choosing to be a single mother right from the start

I believe that you get out of families what you put into them, and I will give mine my all.

Mother and baby units are a necessity for mental health, not a luxury

I have had two postnatal psychotic episodes. The first when my eldest child was six weeks old, and another after my second child was born.

30 French baby names

French names are always in fashion, but a few have risen in popularity in recent years.

New mum's Spanish maternity nightmare

A British woman who gave birth in Spain has told of her ordeal after spending weeks trying to convince medics the baby girl was hers.

Preparing Rover to be a good dog with baby

Some friends of ours say that it's dangerous to have a dog around a newborn and that we should start looking for a new home for him. Is it?

Company offers to ship working mums' breast milk home

First Apple and Facebook announced they would pay $20,000 towards the cost of their female employees freezing their eggs, now IBM in the US has come up with an innovative new policy aimed at retaining female employees.

Prince William speaks of his pride at wife Kate and 'little joy of heaven' Charlotte

The Duke of Cambridge opened up about family life and his plans for the future in an interview to mark his first day as an air ambulance pilot.

'Glowing' eye saves baby Mason's life

A simple photo taken in front of an evening fire gave new mother Sarah Bowers the power to save her baby's life. 

Parenting and decision overload

Of all the advice people told me before having a baby, no one warned me about the amount of decisions involved.

Proof that toddlers can't be left unsupervised - ever

Parents of toddlers all know the moment when realise your child is being suspiciously quiet. It can only mean one thing - trouble!

Meet Jeremy Ryan, The Voice contestant with seven kids

If you have trouble recalling the ages of Jeremy Ryan's seven children on The Voice, you're not alone. So does he.

Baby's adorable reaction to wearing glasses for the first time

Getting glasses can be a formative moment in a person's life.

Police officer buys supplies for family after mum of six caught shoplifting

When a mum of six was caught shoplifting nappies, clothes and shoes for her kids, the last thing she expected was for a stranger to pay for her haul.

Why pregnant women on antidepressants shouldn’t panic about birth defect claims

The risk of having uncontrolled depression is far greater than the small increased risk of birth defects that may be associated with specific antidepressants.

Arrests made over children's birthday party brawl

Police have raided properties and arrested a number of people over a brawl at a child's birthday party at a play centre in Sydney's west.

Family shares awesome drone baby announcement

Looking for a creative way to share some big news? Look to the skies, like this family did.

Young warrior Owen defies doctors' predictions

Little Owen DiCandilo's name means "young warrior", and it's a description that perfectly fits the inspiring 18-month-old

Advice for dads: when to approach your wife for sex

The exhaustion that comes with caring for young children often means romance between parents becomes a thing of the past.

I might be fat, but I don't need saving

I've been fat for pretty much most of life, besides a few crazy moments of being less-fat, but for the most part I've existed on this earth with a little more meat on my bones than desirable.

The rookie mistakes we make as parents

Since the dawn of civilisation, generation after generation of new parents have had to rely on instinct, trial and error - and sometimes get it wrong.

 

FREE TICKET

See Pinky McKay live in Sydney

Get your free ticket to The Essential Baby & Toddler Show and save $20 - register online now!

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.