Worried about DS, 21 months, not walking, not talking, hypermobility...

[wildflowersummermeadow]

Hi - I posted this originally on the behaviour/develpment board but was advised to come over here! I have copied and pasted the below in the hopes that some kind soul will come and reassure or give me some advice!
...
Not sure if anyone else has any experience with this but we are getting rather worried about DS2.

He is still not walking and has been seen by a consultant paediatrician who did a blood test to rule out muscular dystrophy and then referred us on to a physio.

The physio confirmed that he does have joint hypermobility, as well as low tone in his lower limbs...and has suggested we continue to try to encourage him to walk and strengthen his leg muscles by walking up stairs, encouraging to walk with his trolley etc.

He can stand up when holding on to something, and can walk with a trolley or holding my hand, but falls over when he doesn't have support. He has never even tried to take a step by himself, it's as though he isn't aware that this is even an option. Have tried to encourage him to walk between us, or have tried letting go of his hand, but to no avail, he just collapses.

The exercises basically aren't really making much difference. And the physio has now referred us back to the paeditrician for some neurological tests.

The other thing I am worried about is that he is still not talking much either, just the odd word. Otherwise, he is happy, affectionate, good eye contact.

I'm wondering

• does anyone have any experience of hypermobility causing such a delayed start to walking? are there any other exercises I could be trying? He gets very tired quickly (due to the hypermobility I think) so I can't ever sustain the exercising for very long, just try to do it in short bursts throughout the day.
  

• any idea what the neurological tests could be for?
  

• are there any other avenues I could be looking at, perhaps it is not the hypermobility causing the problem, if so what else could it be?
  

My older child didn't start walking until 17 months, and I was a very late walker...so I didn't worry too much up until he was about 17 months, but I am obviously getting much more concerned as time goes on.

Thanks VERY much in advance of any replies. Sorry for such a long post.

xxxxx

[ouryve]

Your post could have described DS1 - he finally started walking at about the age your DS is. No one picked up on it at the time and it wasn't until after his OT referred him onto physio aged 3 because he was very unsteady that he was diagnosed with hypermobility.

The not talking could be related to his hypermobility - he may find it a struggle to control his mouth and tongue in the way necessary to make the sounds necessary for speech.

This won't be helpful or encouraging to you, but in my DS2's case, he has autism, which I already suspected by not long after his first birthday, since DS1 has it and it runs in the family.

[mickeyshell]

Has anyone considered the possibility of CP (Cerebral Palsy)? Although I would be surprised if that wasnt picked up earlier but if it is mild (like in the case of me and my 12 yr old son) I supposed it could be missed. CP is a disorder involving the nervous system so maybe why they are doing neurological tests. I didnt walk until I was 6 and even then I dragged my affected side and had to hold onto something. My son was slightly more advanced but was still almost 2 before he walked. Another thing to note is my son also has hypermobility in some limbs but in his affected limbs he has poor muscle tone and we have to do streching on a daily basis to try and improve this. Do his muscles feel tight when say he is lying down flat and you try and raise the leg from the knee up?
Like I said I would be surprised if this wasnt picked up earlier but in the case of my son it was only picked up because I was well aware of the condition and saw the signs so demanded a referral to the paediatrician.
It may not be this but it is worth asking the question and I really hope I have not worried you with this and it can be easily diagnosed with an MRI scan as this is brain damage. Please do not worry as both my son and I live happy and fulfilled lives and I might be barking up the wrong tree but it sounds like it might be worth exploring.

Good luck.

[proudmum74]

Hi, my DD also has hypermobility (she was born with it as she has Down's). It absolutely delays the walking process, she's almost 27 months and can just about stand / walk a few steps with support.

We attend weekly hydrotherapy to help build muscle tone, the water is a really good form of support. In the session they like us to do 'swooshing' type exercises in water & to get DD to stand in the shallow end of the pool. We also have fortnightly physio & do lots of stair climbing etc.

When she was about 20 months she got special boots to help give extra ankle support, which have really helped & we're now looking into walking frames.

The good news is that DD will eventually walk unaided, it will just take her longer to get there...

In terms of delayed speech, I'm not sure if that is linked to hypermobility. DD speech is delayed, but I think that's more to do with the fact she has glue ear & a learning difficulty. Has your DS2 had his hearing tested lately?

Sorry, not sure what the neurological tests are for.

HTH

[madwomanintheattic]

does sound like possible cp - and i would suspect that's what the neuro side is for - they will probably just mri as mickey says. sometimes cp is dx just by clinical presentation though - and they can (and do) just use the term 'developmental delay' until they are sure there is something else underlying, and then use the terms 'cp' to describe the motor issue.

i'm assuming the paed went through all the obvious birth history stuff, and you discussed any other issues such as feeding (including v early difficulties), fine motor development etc.

dd2 has cp (but they called it developmental delay until she was two, even though they gave me high rate dla from 6 months as it was bleeding obvious) and we were told she would be unlikely to walk or talk. her tone was intially quite high, but she's now largely low toned and has hypermobility.

she had physio and slt from birth, and ot from v early. she had a standing frame from her first brithday, and a walking frame which we finally discarded in the summer before she went into yr 1. she used makaton to start with to communicate, and started to verbalise around 3. her speech can still be a little dysarthric, but it doesn't stop her at all. she's always been in mainstream school, and has an iq higher than her paed, and has lawyas accessed gifted programmes. she 's in brownies, loves to ski, and generally is just like any other 8 yo girl, just a bit wobblier. last weekend she took part in her dance school's end of year show, and they are happy for her to continue to participate in any of the recreational classes. she does ballet and jazz.

i know i've given you a lot of info, but i'm just trying to echo what mickey said - sometimes cp is dx later, and it sounds really scary at first, but it's just one of those things. dd2 is dd2. last summer she wanted to learn to skateboard. this summer she wants to go rockclimbing.

my only word of advice would be to get this possibility out into the open with your paed. because cp seems like the scariest place imaginable, docs are often reluctant to admit that's what they are considering. but the sooner you get it onto the table, they will know you can handle it, and you can all start being honest and getting the right support in place.

there is a cp thread running on the sn board as well - fell free to pop in and ask some q's, or have a read. there are quite a lot of us now!

[Firsttimer7259]

Hi wildflower..I'm glad you made it over here

[hanbee]

Hi Wildflower,

Sounds rather like my DS1, 3.8, who didn't walk until he was 23 months. He was cruising before he even crawled at 13 months. We've been told variously that he does and doesn't have low tone. (helpful huh?). He is termed as having developmental delay whilst a genetic cause is being investigated. He doesn't talk but makes a wide variety of sounds with the occasional word slung in to frustrate me, he uses makaton.

The physio exercises we were given also made little difference, he just had to get there in his own time.

[JoinTheDots]

Hi Wildflower.

My DD is 22 months, has hypermobility, and also only has a handful of words (most of them unclear too!).

She also only walks with my hands or a trolley and sees a physio (same suggested exercises as you) and a developmental paed. We have been offered blood tests for neuro causes but have not taken the offer up yet. Paed said it would map DDs genetics to see if there was anything unusual in her DNA which might point to a cause e.g. fragile x syndrome or CP as mentioned above. She also said she thought they would come back clear, and it is likely to just be developmental delay.

I am very aware that developmental delay can sometimes be the beginning of the diagnosis with things like dyspraxia and ASD sometimes presenting more strongly as a child grows, but sometimes a delay is just that and the child does catch up, or just remains a bit behind but has no further diagnosis.

Just wanted to say you are not alone, and in fact our situations sound very similar - try not to worry about the tests, ask lots of questions of the paed so you feel as in control as you can.

xx

[Monkeychops41]

My daughter didn't walk independently until 22 months. She will be 4 in nov. She has ataxia, hypermobility and low muscle tone. It too is a neurological condition, which affects the part of her brain that controls movement. Her speach is unaffected however. SHe has had lots of blood tests and an MRI. She uses a walking frame sometimes and still has a wide based gait.

Im sure things will improve soon x

[mariamariam]

You sound like you're doing the right things. I'd suggest also getting on local waiting lists for portage and speech therapy, and phoning for a DLA form 080 882200, even if you don't think you'll bother claiming.

[wildflowersummermeadow]

Thank you all soooo much - I am SO glad I posted. Sob! I will let you know how things go, we are arranging to go back to the doc in the next couple of weeks. xxxx

[SparkleRainbow]

Wildflower - My ds has hypermobility, actually Ehlers Danlos Syndrome Hypermobile type, this can delay all gross motor skills and delay speech. Why dont you find out EDS/hypermobility thread on SN, there are lots of mums on there who have dc with low muscle tone, hypermobility, and delayed physicial development....don't panic yet there are lots of possibilities for the dx.

[SparkleRainbow]

Thread here www.mumsnet.com/Talk/special_needs/1493160-EDS-Hypermobility-3

[Galena]

DD has hypermobile hips and ankles and CP causing tight muscles in her calves and thighs! She didn't walk unaided until she was 2.2 - about 3 days before we received her CP diagnosis. Our diagnosis was purely on clinical presentation, not MRI, but because DD was born at 27 weeks, it was not a complete surprise.

The important thing is not to panic - another child who was in SCBU at the same time as DD didn't start to walk until she was over 2.6yo and has no 'issues' she was just a late walker!

[shouldbedoingtheironing]

DD was 20 months when she walked - primarily she has low tone and hypermobile joints which slowed her development down. She also has slurred speech because she has low tone in her mouth muscles too. Her main issues now she is 5 are her balance and fine motor skills - she has a very mild case of CP.

[medievalgirl]

I could have written your post! My identical twins are 20 months and they're not walking or talking yet. (Actually one of them has a couple of words, but rarely uses them.) They've both been diagnosed with severe hypermobility. I can't write more now as by coincidence today is the day they're going to be assessed by a paediatrician - AT LAST! Must go and get them ready.

Good luck with your DS.

[chickensaresafehere]

Hi wildflowersummermeadow,my dd,5.3,didn't reach her developmental milestones,so at 18 months I took her to the GP.That started the ball rolling with physio,who said she was hypermobile,she initially had a standing frame,to strengthen her legs,which we used for an hour each day,then she progressed to a k-walker,but she didn't take her first un-aided steps until she was 3.6.Now she tires quite quickly&is not very steady on her feet,but is doing well.She cannot run or jump though.
She is still non verbal & has a learning disability.We have had blood tests & an MRI scan,which all came back clear,we have just had micro array chromosome testing too,which was clear.
I have thought for a long time(after a hint by the pead neuro) that she may have Worster Drought Syndrome,so finally after a long journey we are off tomorrow to see a specialist in it,in Surrey,with hopes that she will be dx'd.
Don't give up on pushing the professionals for the things your DS needs.
Good Luck!!

[fedup2012]

My dd had developmental delay and hypotonia (weak muscle strength), which describes yours too.

I found out later that this was caused by medication I was taking while pregnant. Were you taking anything at all?

[Practicallyperfectnot]

Fed up - which meds?

Medieval girl - there is a Hypermobikity Clinic at Gt Ormond Street for severe hypermobility - it's fab!

Wildflower - my son with physio walked a week before he turned 2, I walked at 3 without physio, my daughter walked at 19 mths after bottom shuffling And having some physio - all very typical of hypermobility. Boots help via orthotics to help learn sit to stand, stay standing and take first step. We have all been late talkers but make up for it now. We are fine.

Sending positive vibes