EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

Thanks Couty that really helps. I am not sure if doctors know much. My paediatrician friend doesn't believe hypermobility exists!! Not sure what she thinks my DDs ankle problem is. I have put DD in some sparkly cheap ballet shoes this afternoon and she walked around the house in them. She wants to wear them outside but they will be ruined. I have also got her some normal boots which do give a bit of ankle support. I have never seen an ortiotist for DD. The paediatrician who diagnosed her hypermobility was going to refer her but then we got some 2nd hand piedros through Mumsnetters, she began walking and they lost interest and said she wasn't really 'that bad'. Whatever that means. The physio didn't thunk she needed piedros at all and said I should wait until she walked on her own. But when she turned 23 months I got fed up, got her the boots and almost immediately she began walking.

Sorry for the long post, there are people on here whose DCs have far more serious problems than DD. I will take her back to the physio in a few months. Her ankles seem to be straightening out a bit but not completely straight yet.

Midnight why does your DD keep coming home early from school? I think I am 'bendy' too as I can do a weird thing with my arms bending the elbows back which used to freak other kids out at school when I did it. Never had any issues though and walked at 1 year old.

inadreamworld - Dd has POTS (basically she is really dizzy and faints a lot) and currently is going through a phase of spraining and respraining her hip each time she keels over. School are quite good at keeping her in, but occasionally quite often she feels bad enough that she needs to come home.

Do you also have "flamingo knees" where they hyperextend (bend backwards) like your arms? My one claim to fame in this house is that I have better flamingo knees than the DC with actual diagnoses .

Midnight that must be hard for you and your DD. Yes I do have the extra bendy legs as well but have never suffered any problems at all. I wonder why not? Still don't completely get the hypermobility thing!!

inadream... a very belated reply to your question about my ds's walking

Due to HV knowing about a hiereidary issue with my dad and brother and legs she picked up at his 8 month check that he would not weight bear or "bounce"up and down when held on our laps ,and refered us to pead (...I had not noticed !)

Saw her when he was 12 months and she said he was h/m in his ankles and feet so when he put weight on them it would be like us trying to stand on a wobbely board.

No further help given....buy him some boots ...come back if not walking by 2 yrs.

At 18 months he took his 1st STEP unaided (I realise this is different now to being asked "when did they walk" )....at 24 months he was still holding on to someones little finger to walk/toodle around.

I don't know if his ankles bent ...but he was not comfortable on his feet.

He is ds3 and ds1 is only 3 years older than him ...and yes one in the middle ...so for laziness/easiness sake he was in a pushchair alot for the school runs and things...but when he was 3 I noticed he was not walking properly on his feet...long story short....HV sorted physio lady to come to us (via phone call)

and boots and inserts were organised and excersises.

By 7 we were under differnent people as we had moved but they encouraged him/us to not rely on the boots as much as he was building his own strength up to support the H/M ...(I was gutted...I was going to have to buy him school shoes now !!!! )

So in my long winded way of doing things I am trying to say excersies helped with his strength to come out of his boots.....but he still fallls over allot and has to be massaged every evening due to his aches .

I am really woffeling now and not making any sense

Oh and if anyone remembers a post I did last September about my dad ....it has been confirmed that he is in the early stages of Alzheimer's

(did I put it on this tread ....sorry if not ....bed now )

My flamingo knees are second only to DS2's!

My elbows are actually not as bad as my knees.

I had orthotic shoe inserts as a DC.

DS3 took his first step at 14mo, but even now, at 2y4mo, is constantly falling over without his orthotic inserts. Tbh, he still falls frequently WITH them, but it's every third step without.

DS2 doesn't fall as much now, but he's learnt to sloooow doooown so that he doesn't do it too often. His issue is pain more than anything else.

news about your dad, Bizzey.

Hi all, wondering if you can help. Ds2 has been seeing a physio since he was 4mo. We were told he is hypermobile throughout his body and at 13 months (nearly) cannot weight bear, won't put his feet on the floor, has ridiculously mobile hips and ankles and to dress him, change his nappy, pick him up its like doing it with a little baby not a "toddler" as he's so floppy.

We've been doing the physio (no change) and his first paediatrician appointment is in July with his brother who had hypotonia and has hypermobile elbows with some other unrelated issues.

What are we to expect from the paediatrician appointment and how do we know if he's bad or not too bad. We don't seem to get any answers other than "he seems to have everything he needs to walk but it's going to take a lot of time and hard work." This isn't helping me but I also feel like when I look on google and wheelchairs etc are mentioned I am being a bit over the top. He's very happy but other than sitting and rolling has the gross motor skills and "loosness" of a 3/4 month old.

Hugandroll - don't give up. My DS2 at 13mo was still as floppy as a newborn, and I'd been doing hours of Physio with him every day since he was 7mo. He eventually took his first steps at 3y7mo.

He is now 9, and yes, he is in a lot of pain again now, and things are starting to deteriorate again, but he can walk, run, jump, climb and use a scooter, just we know that the next day, his feet and legs will hurt.

Writing is not good, I'll be honest, and he still can't pedal a bike or trike, and he needs help brushing his teeth as he hasn't got the fine motor control to do it properly, but he CAN walk.

You need a referral to Physio, Occupational Therapy and Orthotics.

Physio for exercises, OT for equipment to help, and orthotics for shoe inserts, and/or Piedro boots.

I had to think 'outside the box' for additional Physio exercises when DS2 was little.

My best but was a mini gym ball.

One thing I did was lay him across it, and roll him forwards and backwards up and down his tummy on it.

Another thing I did was to 'sit' him up on it (holding him), and bounce him up and down on it.

I got a sturdy baby push-along toy (look out for one that won't tip under their weight - I ended up getting a carpenter friend to make one with weights glued under the front, though used buggy weights on the front wheels of a plastic one before that).

What I did was sort of 'drape' him over the handle ( ) and literally move one foot, then the other, then the first again, up and down the front room, and back again, over and over.

Then I used to put one of his feet on top of each of my feet, hold him around his chest (best way to hold a hypermobile DC, under the armpits but around the chest, prevents subluxes...), whilst bent practically double so that he was as upright as he could be, and step, step, step, step, step. Relentlessly.

I used to have a Galt dinosaur thing that I would prop him up on - it went right around the back of him - it's this one - Dinosaur cushion.

It really WAS relentless, but I didn't want to give up on him walking.

And he's ahead of where my DS2 was at 13mo if he's already rolling and sitting!

My DS2 started rolling over at 2y7mo...

He didn't sit until just before his 3rd Birthday.

I will give those a go and I won't give up, it's just very hard to get information which isn't from the Internet. We're lucky he already has a physiotherapist and a paediatrician (but not had his first paed appointment just yet) and orthotics have been mentioned but not until he's standing.

Problem we have is he will not put his feet down on the floor. He does "the frog" but as soon as he will i will try the feet walking. Thank you.

I think he's sitting and rolling because he's had physio since he was 4 months. This was due to a torticullis which is unrelated but involved a lot of tummy time (which he hated) and other core strengthening exercises which have almost certainly helped. We are very lucky we were already "in the system".

YY, Physio from 4mo is brilliant. DS2 was 7mo when he started Physio, it still took him another 3 years to walk though.

Aww bless him. Very proud moment when he did I bet.

DD2 has her teeth extraction surgery tomorrow - GA as we didn't want to risk a local; and they've put her first on the list so she doesn't get too dehydrated, which is incredibly helpful and understanding of them. Trouble is we need to leave the house at 6.45am which is a bit early during half term .

She managed the whole week at school last week which was v. good, but has spent the past 5 days falling asleep as soon as I take my eyes off her, which hasn't been good for the amount of homework and revision she was supposed to be doing. But as school are generally pretty good, I'm hoping she gets away with it.

Also she's finally off crutches, but hasn't really been able to do much physio, so not sure what they'll say when we have the follow up appointment on Monday. That's a worry for another day - I just have to get her through the whole "magic cream - no the needle won't hurt - stop being pathetic and keep your hand still DD! - honestly how old are you?" stuff first thing tomorrow morning... Plus the constant moaning about how she hasn't eaten since 10 oclock last night, and hasn't had any water since 6 and she's SOOOOOO thirsty..... (will be on quite early tomorrow night I reckon

Ugh. DS2 had to have a tooth extracted under GA when he was 7.

Couthy - how come your DC got physio from 4 months? Sorry if I haven't read your earlier posts, this is a long thread!!

DD1 is doing really well with her walking since getting the Piedro boots two months ago. She is 2 yrs 2 months and has gone from walking on her knees three months ago to toddling around and climbing steps now. She can also walk without the boots but her ankles still bend to the side a little bit but not as much as they did previously.

I am keeping an eye on DD2 who is 4 and a half months. She hasn't rolled over yet but can put her weight on her legs for ages if you hold her up. DD1 couldn't weight bear until about 18 months!! Does anyone think I should worry because DD2 hasn't rolled or am I just imagining things because of DD1 having hypermobility? DD1 didn't roll until about 10 months and started crawling soon after that.

DS2 got Physio that early because he still was like a newborn at 4mo, and his hypermobility was picked up earlier because he was my second DC to be dxd with it, so the HV was actively looking for it.

He still couldn't support his head at 4mo.

In fact he was 9mo before he could do that.

Couthy how is your DS2 now and how old is he? DD1 supported her head at 4 months but didn't roll over until she was around 10 months then she started to crawl then walk on her knees by a year old. I wasn't worried at this stage really as I thought she would walk by 18 months but it took the Piedro boots to make her start walking at age 2. I can't believe they helped so much, now at 2 yrs 2 months she can walk without them - and the NHS in England wouldn't give them to me!!!! A lovely mumsnetter sent me 2nd hand ones though

In my (very unprofessional) opinion DD2 isn't hypermobile as she supported her head at 3 months, can weight bear already - my Mum is going on about the fact that she hasn't rolled over yet but I am not going to worry about that too much. I will keep on with the tummy time which is supposed to help.

hi all
well daisy had her orthopaedic app today
they said that the right foot will right itself again in time&wasnt worried that it had gone back to how it was at the start!
just to keep on with the orthotic boots&insoles(which in his opinion dont really do much anyway!!eh???)
didnt think a referral to physio would be any good as her feet have an arch when she goes on tiptoe&she can hop on right foot(for about30seconds before she loses her balance!)&that that is advanced for her age&all the usual walking running about etc shes doing will be physio enough!
they want to see her again in a yrs time but for us just to go on as we have been&to try teaching her to walk with her feet straight&not with her(primarily)left foot out to the side as she is doing&has been doing all along!!

also want to ask what your views on hypermobility being linked to asd are?
i have some concerns about dd in that area
tia

DS4 was born last Monday, by C-section at 35 weeks because he had his feet by his face and my waters had gone. He is in the neonatal unit and is scarily similar to DS2 at that age. He definitely has hypotonia but it's too early to know if he is hypermobile or not.

Congratulations on your DS4.

Even within the same family, you can have DC's that have hypermobility but at differing levels of severity.

DD has moderate hypermobility.

DS1 isn't hypermobile at all.

DS2 has VERY severe hypermobility.

DS3 has mild-moderate hypermobility.

On another note, DS3 got his replacement insoles today at Orthotics, to replace the ones he lost.

Also, DS2 got his insoles and he's got his Piedro's too, for the first time in 3+ years. Lets hope it starts to make a difference, combined with the Hydrotherapy and the Physio.