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 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 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

 

What you need to know about pregnancy and health insurance

It's not just waiting periods that couples need to consider - there are other factors to consider when thinking about health insurance.

Yummy mummy

Nicole Trunfio breastfeeds baby on Elle magazine cover

Australian model Nicole Trunfio has taken the concept of multitasking to a fashionable new level for Elle Australia.

Warnings after baby girl died while sleeping in bouncer

Parents have been warned about the dangers of letting babies sleep in bouncers and swings following the death of a three-month-old girl.

Coping with fatigue as a parent

Sleep deprivation is a real hazard of caring for a baby. But there are ways to manage the challenges of fatigue better.

A very 21st century issue: parents, parks and smart phones

It's not all the parents, and it's not all the time, but there is often at least one doing it. And sometimes, that 'one' is me.

Appliances

Faulty washing machines linked to house fires

More than 80,000 faulty Samsung washing machines pose a fire threat in homes throughout Australia despite a nationwide recall of the machines.

'I had a lotus birth and I loved it'

Lotus birthing is not all that common, but for a number of women it feels like the most natural thing to do.

7 things you might not know about postnatal depression

Despite its widespread nature, there is still a great amount of mystery surrounding PND - and it's important to try unravelling as much of that as we can.

Is your family's car part of the world's biggest safety recall?

More than 50 million vehicles recalled for potentially lethal airbag fault - is your car affected?

Why drinking water can be deadly for babies

H2O is one of the necessities of life, but for babies a seemingly harmless amount of water can be fatal.

Mother-in-law faceplants during proposal

He had it all planned: a romantic proposal on a windswept beach. The whole family would be there so they'd all be able to celebrate the joyous moment together.

A preschooler suddenly goes mute - and it's not just shyness

When our son stopped talking, our sense of loss was painful and acute.

The mums who ask for a 'wife bonus'

They run their homes like domestic CEOs and work tirelessly to improve their family's social standing. And now, according to a new book, they want an annual perk from their husbands.

Woman shares photo of dimple on breast to warn others of cancer risk

A widely-shared Facebook photograph of a British woman's breast has raised awareness of a more subtle breast cancer symptom.

Starting a family despite a low sperm count

"I'd never really failed a test - how could I fail this particularly manly test?"

It's official: we must better protect our kids from toxic lead exposure

New guidelines have been released, aimed at reducing children's harmful exposure to lead. But they still don't go far enough.

Trouble-shooting toddler social skills

Chances are your toddler's behaviour is all completely normal - but here's how to tackle some common social problems.

Helping your first-born welcome a sibling

We did sigh with joy at the arrival of a royal princess - but, mostly, we sighed with pity at the sight of Prince George being taken to meet her.

Farewell, daytime nap

I've been in denial and I'm not too proud to beg, but it appears I must accept the fact that you have gone. I need to let you go.

The identical triplets who are one in 50 million

The father of identical triplets born in a Texas hospital says his three daughters, including conjoined twins, are "a miracle" sent by God.

Seven questions you should be asking about your health cover

If the last time you assessed your health cover was five years ago, there?s a chance it may no longer suit your needs. To ensure it?s still right for your family, click here for seven questions to ask.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

How to use gas effectively in labour

Many women in labour don't use gas effectively and suffer more side effects than benefits. Here's how to get the most out of this pain relief option.

'He has gastro but that's okay, right?': sick kid etiquette

We cannot place all children who are sick in a bubble till they recover, but we can give other parents a choice about exposing their kids to them.

Ada Nicodemou: 'I can never be completely happy again'

Home and Away actress Ada Nicodemou has opened up about the loss of her stillborn baby.

10 things to consider when you're thinking about trying for a baby

Before you start tracking your menstrual cycle and reading up on the best positions to get pregnant, there are a few other things you may want to consider.

How special surgery and IVF can create a post-vasectomy baby

Cricket legend Glenn McGrath and his second wife Sara are expecting their first child together, thanks to IVF and a delicate surgical sperm retrieval process that helped the couple to conceive.

Belle Gibson's mother 'disgusted and embarrassed'

The mother of disgraced wellness blogger Belle Gibson has accused her daughter of lying about her childhood in an attempt to garner public sympathy.

Doctor's mobile phone 'left inside c-section mum'

A new mum claims a doctor left his mobile phone inside her after delivering her baby via caesarean section.

I'm a mum and I'm following my dreams

I want my kids to know that no matter what happens in life, you can still be who it is that you've always wanted to be.

Those first daycare days

I had this innate 'mum' moment the other day.

'If one person had listened, my life would have been so different'

Katherine's father will die in prison for the horrifying sexual abuse of his daughter. Yet she is the one with the true life sentence.

This new plan undermines breastfeeding and baby health at everyone's expense

Mothers, babies, the health system and the wider society are going to pay the price of this new budget.

Couple to celebrate terminally ill baby's birthday in unique way

Baby Jai Bishop has lived at Starship Hospital for the past seven months, with his parents flying back and forth from Hokitika, 1100km away, to be by his side.

Life On Mars

It's men who need 'retraining', not women

We are all responsible for our own behaviour. Telling victims to harden up is wrong.

Baby Gammy's dad tries to claim charity money

The biological father of baby Gammy has reportedly tried to access charity money raised for the little boy's medical costs.

Where are the childcare places?

It?s all very well to encourage women to work if they choose to, but how can the measures lead to increased workforce participation when women are once again left holding the baby?

The pain of not having babies and not knowing why

After seven years of wishing, hoping, crying, punching pillows and shouting "why me?!", the end result is more than I ever thought possible.

Getting your family finances in order

Whether you're after a new car for a growing family, a bigger house, or are just fixing up your finances, here are the basics on borrowing.

Mum shares graphic selfie to warn against tanning

A mum has shared a graphic photo of her skin cancer treatment as a warning to others.

Does parenthood make us happier?

We can certainly gain higher levels of happiness when we become parents, but the trick is to not get overwhelmed by the pressures of raising our kids.

No, having a dog is not like having a human child

It's obvious these people dote on their pets, but they're barking up the wrong tree.

 

Top baby names

Baby Names

The numbers are in and we can now bring you the 2014 top baby name list for Australia.

 
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.