13.5 mth old & Family history of HMS

Issues relating to parenting children/adolescents who have HMS / HEDS

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13.5 mth old & Family history of HMS

Postby spudgirl » Tue Sep 20, 2011 9:09 pm

Hi,

I have known of hypermobility (or double jointedness as it was called when I was younger) all my life and finally have got round to posting on here.

My older sister was born with HMS (the top part of her feet were flat back against her legs) as well as very flexible fingers, wrists etc, however she was also born with a Congenital Dislocation of her left hip (she had no socket and her femur was ? in shape). Thankfully it was picked up extremely early and one of the top surgeons in the UK for fixing such things at the time worked at a hospital not too far away (it was the worst one he had ever seen). As she was in plaster from the top of her chest down she developed using her feet like hands and was able to pull books out of the bookcase and turn the taps on. Due to the HMS it was harder for the surgeon to correct her hip as the looser tendons etc meant he had to splice and turn her femur more than he would have normally. This took most of the first 4 years of her life and she did have to learn to walk a number of times but by the time she was 4 1/2 she was walking normally, albeit with one leg shorter than the other which pretty much resolved itself over the years with lots of swimming and growth in general (she hasn't had to wear built up shoes for over 25 years and is now in her 30's). The surgeon is the one who diagnosed the HMS in both my sister and me (he never saw our younger sister) and when he checked it appears to come from our father. She has one child who developed normally, crawling, walking etc however there were a couple of instances a few years ago where pulling her up by her arms dislocated her elbow. Apart from that there is no apparant HMS but she is quite flexible.

My younger sister appeared to be the less flexible out of the 3 of us however her daughter who is now 3 years old has been diagnosed at being at the extreme end of HMS (with the possibility of some other developmental issues). She crawled at about 8mths but it took until she was about 2 1/2 year to get her walking properly. She could walk before that with help but she would stick her bum out and lock her knees, she is quite a tall child which didn't help. If she was on her knees she could 'walk' quite well. She also had digestive issues which made her constipated and her speech isn't as advanced as other children as her muscles are so loose. She is currently having physio and speech therapy on a monthly basis.

Myself I have HMS, especially in my arms as my elbows bend further than most and I can turn my arms right round (a good party trick to freak people out! :) ). My neck will turn further than most peoples and I have managed to dislocate my thumb just from pushing myself up off the ground. I was also told that I had chondromalacia patellae as a child which from reading other people's posts seems to have been a common diagnosis from doctors. I will turn my ankles but they never swell or bruise like most people's would and I can't wear shoes with any more than a couple of inches of heel as it hurts my feet after a very short time and I also don't feel stable. I do bruise quite easily and they seem to appear around places such as my knees after I've done exercise even though I've not hit anything. I can pretty much place my hands on the floor but this is not as good as it used to be as I've managed to put my back out half a dozen times over the past 13 years usually when I've been lifting things that are too heavy but now I have a small child I have to lift him which unfortunately put my back out yet again earlier this year. I tend to shift my pelvis to the left and crunch up the vertabrae in the middle of my back pinching my sciatic nerve down my left leg. I didn't have any problems being pregnant although I did wear a support to help carry my bump as I got bigger and carried quite low. I had a quick delivery with my son which apparantly is another trait of HMS and have lots of stretch marks even though I put cream on religiously the whole way through.

Now my son is 13 1/2 mths old he has never crawled and always hated being on his front. As soon as he could flip himself over he did but it then took him quite a while to master rolling. He has never pushed his front up with his arms extended or even tried to bring his knees up. A little while ago he mastered managing to sit up from lying down so now he gets around with a combination of rolling and lying on his back with his knees bent and pushing himself along like a caterpillar to where he wants to go and then works his way into a sitting position using one arm. I've tried to get him into the crawling position but he just doesn't want to take his weight on his arms. He will bear his weight slightly when you stand him up but only for a few seconds and then he wants to sit down again and he's never bounced on his legs or moved his feet independently of one another. He does appear to be much more flexible than other children and can sit on the floor and lean forward and touch it with his nose and his fingers bend further back than most. He also makes circular motions with his arms and feet especially when he gets excited. His arms, hands and feet can get very cold in the winter months and first thing in the morning can be purple in colour. This doesn't seem to bother him but I don't like it as it can take ages for them to get to a normal pink. I've finally managed to get our Health Visitor to acknowledge that he's not doing the things he should be as he doesn't seem to have the strength to pull himself up so she is going to refer him. It doesn't help the fact that he is a big child as he is already the height and weight of the average 18mth old so I know that isn't going to help him gain the strength he needs. It also doesn't help the fact that where I live I've got friends with children of the same age who have crawled and are now walking and I compare my son to them and feel that he is missing out on his learning and exploring of the world.

I know I've just got to wait for the referal to come through but I was wondering if there is anyone who has had similar things with their children as I feel frustrated that I don't know what to do to try and help him to the next stage of movement.

Many thanks x
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Re: 13.5 mth old & Family history of HMS

Postby Alison C » Mon Oct 03, 2011 9:29 pm

Hello
Your son's development does sound similar to my son when he was a baby. You should find that physio will really help and maybe occupational therapy (see my page on the main website for more info), also orthotics for boots to help him learn to stand and cruise. Has he been referred to a paediatrician? If so, the paed should be able to refer to the therapists and orthotist. You may wish to apply to DLA if you need to spend more time with him, helping him achieve his milestones. You may also find you need physio advice re lifting him and your post natal recovery. It all does get better in time. I remember well seeing other toddlers walking etc and coping With comments from others - a tough time. My son however developed his hand skills and loved jigsaws etc, having better concentration than the toddler tornadoes! We had advice from physio and occupational therapy re how best for him to sit so he could use his arms for play, not supporting himself.

Do you think he may be a bottom shuffler? My daughter was as she could not support herself with her hands in crawling. My son learnt to crawl, kneel, stand, walk with physio advice eg sat at 11 mths, stood at 18 mths, walked a week before 2. At 13' you wouldn't know he had been so delayed altho boots do give a clue. My daughter walked at 18 mths, standing at approx 15 mths, and now aged 7 loves ballet!

You have done the right thing in asking for help.
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Re: 13.5 mth old & Family history of HMS

Postby Alison C » Mon Oct 03, 2011 9:40 pm

Ps
My daughter also had physio and occupational therapy to help her kneel, stand, walk and she has boots from orthotics since learning to stand and cruise with them.
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Re: 13.5 mth old & Family history of HMS

Postby spudgirl » Wed Oct 05, 2011 8:42 am

Hi Alison,

Thanks for your reply. We're still waiting for the referral to come through but I'm going to ask my HV on Friday where she has sent it to as we put our son on my husbands health insurance at work so we are going to use that once we know. It is the waiting for me that is most frustrating as I just want to get on with the exercises that are going to help him. Once we know what we need to do the nursery that he goes to 3 days a week have said they will do whatever needs to be done on the days that he is there which will be very helpful. He does have very good concentration and hand co-ordination and his pincer grasp with both hands is excellent as he will eat peas one by one (we're not sure which hand he will favour later on as both my husband and my dad are ambidextrous). He has also just started to try and pull himself up in his cot and playpen and this morning I noticed he managed to nearly get to a kneeling position which I was impressed with.

I don't think he's going to be a bottom shuffler as he seems to favour rolling/ 'swimming' on his back and then sitting up whenever he gets to where he wants to. It's not as quick as crawling but he does get to where he wants to fairly quickly.

Does your son enjoy sports etc. and do they cause him any pain? I hope my son will as we wish for him to be as active as possible but I can still hear my sports teacher shouting at me to get some power behind the ball when playing hockey or tennis and me just thinking I can't tighten my wrists any more! :)

I'm sure as we progress along this path I'll have many more questions and it is just nice to find out that there are many others who have been or are in the same position and we can help one another.
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Re: 13.5 mth old & Family history of HMS

Postby Alison C » Wed Oct 05, 2011 6:29 pm

Hello

Ohhh as you have health insurance, could you arrange to see sue maillard - the expert in physio for children with hms? She is at great ormond street hospital and manages the hms service incl ot, orthotics, clinical psychology. You could ring her rather than go via hv, I think. She is a world famous specialist paed physio in rhematology. And very friendly!

My son tolerates PE and does have a go, preferring gymnastics, athletics to football and other contact sports. We are not a sporty family btw! Wii is fab! Also Sportscoach. Others with hms are sporty.

Cheerio and do keep in touch. :)
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Re: 13.5 mth old & Family history of HMS

Postby Alison C » Wed Oct 05, 2011 6:34 pm

Ps it is good to have local paed and therapists via nhs as well as gosh ( gosh take older children via nhs - see msg board).
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Re: 13.5 mth old & Family history of HMS

Postby Alison C » Wed Oct 05, 2011 6:37 pm

Ps my son was not a bottom shuffled and needed physio to help him move from rolling/moving on his back into crawling despite initial protests! Hard work for everyone but worth it ESP as kneeling helps develop sense of proprioception in knees something which is lacking in some adults with hms.
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Re: 13.5 mth old & Family history of HMS

Postby claram » Sat Oct 22, 2011 2:03 pm

Hiya your son sounds similar to mine. He hadn't ever rolled and would scream if I put him on his front as he had no strength to lift his head up so I took him to the docs at 12 months and they referred me to a paediatrician. He had various other tests but they said he's significantly hypermobile in his ankles and wrists. He's been seeing a physio once a month and has hydrotherapy every week. He has the piedro boots to strengthen his ankles and we do his exercises at home too. He's now nearly 18 months and can roll over. He sits on his own fine but can't pull himself to sitting which we are working on. He can now bum shuffle. And he walks if we hold his hands although he's still a way off walking by himself. But he's getting stronger by the day and is so pleased with himself when he does something new. My seven year old daughter was born with hip displasia and is very bendy but she hasn't had the same probs as him although she occasionally gets painful legs. My physio has said it will just take him a bit longer to do things and he will be more tired than the average child as he's having to work that much harder. She also said in the future he may find writing painful as his wrists are weak- but he could always use a laptop. So for us I think it's just a case of fingers crossed and well see how he goes. Hopefully he won't need loads of help to do things forever as he's getting so strong. Good luck with everything x
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Re: 13.5 mth old & Family history of HMS

Postby Alison C » Sat Oct 22, 2011 2:49 pm

My son is super bendy but so far no pain in writing despite holding his pen with all his fingers/thumb. At 13 , he uses computers for a lot of school work just like his friends. Maybe ask your physio for an occupational therapy (OT) referral? Do have a look at my page re OT for ideas how this may help.

My son walked at two. It sounds as if your son is getting lots of encouragement and is chuffed when he does something new - these really help! Physio exercises are time consuming and hard work for everyone but well worth it. Perhaps consider applying for DLA as you spend time doing the exercises?

Cheerio :bye:
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Re: 13.5 mth old & Family history of HMS

Postby claram » Sun Oct 23, 2011 11:00 am

Thanks Alison. I have thought about applying for dla but I'm not sure I would get it. Suppose it's worth a try though x
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Re: 13.5 mth old & Family history of HMS

Postby spudgirl » Thu Nov 03, 2011 5:32 pm

We've got my son's initial paediatrics appointment next week and was wondering whether anyone can tell me what to expect and perhaps some tips on things to definitely mention?

I've been standing him as much as possible and getting him to hold onto his cot or playpen and sometimes he will stand and bounce a little (although seemingly from his hips rather than bending his knees) but other times he just sits down and doesn't want to stand at all. I've noticed that he will sometimes now also move his legs independently in his walker rather than bouncing along with both feet so I know it is all progress and hopefully the Paediatrician will be able to advise us of other things we can be doing to help him along.
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Re: 13.5 mth old & Family history of HMS

Postby claram » Thu Nov 10, 2011 10:33 pm

How did your appointment go spudgirl? X
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Re: 13.5 mth old & Family history of HMS

Postby spudgirl » Thu Nov 17, 2011 4:35 pm

Hi Claram,

We were quite impressed by the Paediatrician as he fairly quickly picked up on the mobility issues that our DS has. Across the board he scored at his age or higher for everything apart from mobility which he is obviously behind on. The conclusion was that he has low muscle tone and needs a physio assessment so that he can be set a programme of exercises to help him gain strength and get on his feet. On his own he is getting stronger as ever since he's started to kick at swimming about a month ago we've noticed improvements like he will try a pull himself up onto his knees but not quite correctly as one of them is bent across rather than out to the back (I've tried doing this and even I find it nearly impossible to do so it just shows me how bendy he is!). He's also able to now completely push himself up on his arms and sometimes very nearly gets into a crawling position. The Paediatrician also mentioned Ehlers-Danlos Syndrome and he said that he's got another patient with it and our son is very similar. He was also amazed at how our son moves on his back (a bit like swimming and a caterpiller combined) and had never seen it before. The other thing that was mentioned was to send us to a geneticist in 6 mths time as he could see how flexible I am and I'd also gone through the family history. We're just impatient now to get going with the physio and exercises so that we can do as much as we can at home and help him catch up with his friends!

Cheers
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