Forum home Toddlers & older children Children with special needs

Hypotonia and hypermobility

Hello,

I'd really appreciate some advice/support. My DS is 20 months old and after months of struggling, we finally have a diagnosis of hypotonia and hypermobility. He is still not able to stand alone, crawl or walk. He has been late to reach all his milestones and despite what others say, I have a huge niggle that there is still something else going on that we haven't got to the bottom of. He has just started weekly physio and we have several other referrals we are waiting for (OT, SALT, orthotics, eye clinic and medical paediatrics for suspected heart murmur). It really feels like we're on our own with this and people just don't get how hard it is for DS to do what others take for granted. We have been told many times from friends, family, health visitor and strangers that he is just fat and lazy! Are there any other mums out there going through anything similar that could share their experiences? Would be much appreciated.

 

Shons xx

Replies

  • Hi Shons,

    How is LO getting along these days?  Both my girls are under Physio & OT for Hypermobility (joys of being females in a family with history of HMS).  They aren't too worried about Hannah just yet because she's only just nearing 2 but Samantha is now going to Podiatry for supportive footwear (likely insoles or splint boots) to help correct her posture & enable her to walk more comfortably (she likes her pushchair but is about to outgrow it, walking is slow & very stop - start).

    Have you tried taking the children swimming?  This should be good as it exercises all the muscles with the water also offering some support to the aching joints/muscles.  You could also (if you haven't already) look at applying for DLA for LO (it's awarded upon the level of care needed & not the condition, you simply need to prove LO needs more care than someone of the same age).

  • Hi kazzie,

    I forgot my log in details so it's been a while!

     DS is doing fab. He started walking just before his second birthday (can't believe he's nearly 29monthis already!). He's had a whole host of tests since then, including an MRI so we now know he has brain damage (periventricular leukomalacia or PVL) which means he is now classed as having cerebral palsy. He has more tests to come as the paediatrician and neurologist are concerned that his muscle tone isn't improving. He struggles daily with exhaustion and he has issues with feeding due to low muscle tone but you really couldn't ask for a happier wee boy.

    hope all is good with you x

  • Hi Shons, lovely to hear young man is doing well.  His muscle tone may relate to the PVL/CP (whichever term the professionals use, I know that half mine refer to me as having Hypermobility Syndrome or HMS whilst the other half refer to it as Ehlers-Danlos Syndrome or EDS).  Feeding/gastric issues are also common with hypermobility (I have IBS as part of my condition & both Samantha & I struggle with chewing & swallowing.  Ironically this hasn't affected Hannah so much to date).

     

    Samantha is formerly diagnosed with ASD as well as being hypermobile so we have lots of professionals on her side - Specialist Teacher, Support Keyworker, Educational psychologist, SALT, Podiatry, Paediatrician, OT & the Statutory Assessment Team - all proving good fun having to keep all up to speed with where we're at (we're in process of founding her statement ready for SEN school).  She now has insoles to wear inside her shoes (although she often takes her shoes off as soon as she's indoors & has decided the insoles are great for 'Pika' (mouthing)) & we have to make sure her footwear isn't too heavy (mine & Hannah's also) as this can add to incorrect posture (pigeon toed effect).

    Some things I have learned along the way, DLA is awarded upon the amount of care LO requires compared to somebody of the same age (not their diagnosis), SEN schools typically take children from 3-19yrs of age & whilst they will generally ask for a statement to be in place for 'school age' (5yrs +) you don't have to have a statement for the 'nursery age' (3-5) all you have to do is write to the local council SEN team asking to be considered for a place (the same as writing to ask for an assessment for statement), if you have a SEN statement then you don't need to apply for schools as your statement will determine which school LO attends.

    It has been an eye-opening experience with many surprises along the way.  I have two very unique DDs & wouldn't trade them for the world (even if it's easier communicating with 2yr old Hannah than with 4yr old Samantha, they're both lovely, affectionate young ladies). Best wishes & catch up soon. X

     

  • Hi Shons I hope you and your family are well.

    i just wondered what symptoms your son had? And how long to get a diagnosis? 

    My son is almost 21 months, he can't walk or stand alone, he has been crawling since 8 months and cruising since 10. But has made no progress with walking. He can climb the stairs and on furniture. His balance is very bad and falls continually, even whilst sitting or crawling. 

    He was fine up until one, normal pregnancy, labour and reached all milestones. at aged one he had recurrent bouts of tonsillitis, and I wonder whether this set him back. He also has a heart murmur, and an echo showed he has two tiny holes In his heart, but they I'll not cause any problems. 

    We finally had his paediatric consultation today after a 3 month Wait. She said he has hyper-mobility and hypertonia, and he is mildly delayed in reaching other fine motor skills and speech. She has arranged hearing, eye tests, chromosome blood tests and physio, who will give a detailed report and if no progress in 3 months then an MRI scan. It's just more waiting and I feel in limbo.

    Everyone else is being really positive but, My main concern is his balance and non walking, like you I have  niggling feeling too. X

  • Hi ,I have just joined the site and see your posts on Hypermobilty. My son has Hypermobilty and it took a while to get a referral from his GP to crumlin for an assessment eventually I took him to another doctor because " growing pains" for 2 years doesn't really cut it . It has been along road of Physiotheraphy, occupational therapy and at the moment I am waiting on an assessment for Autism . 

    Just wondering how you and your children manage the pain level and is there anything different to try that apart from all the pain medication he takes ? 

    Also it is nice to  see a post on Hypermobilty ,nobody ever knows what I am talking about even the doctors ! 

Sign In or Register to comment.

Featured Discussions