How will hypermobility affect my toddler's future?

[spottywotty]

Hello,

Firstly let me appologize for the long winded post.

I saw the HV when my daughter turned 18 months regarding her not walking yet. She referred us to a physiotherapist which we saw about 5 weeks later.
The physiotherapist said that my daughter has hypermobility in her ankles. She uses one leg more than the other when lifting herself up. She has flat feet that overpronate (walks on the insides of her feet' soles, where the arch should be). The physiotherapist said that she also has a low muscle tone.

She stands alone for no more than a few seconds (longest was 5 seconds at the physiotherapist). She can climb, she's been crawling since 14 months. She sat up without support 8 months.

She can hold crayons and scribble, feeds herself since 8 months old, she points at things, says 6 words clearly and many more with syllabs missing and lots of baby babbling. She is usually very smiley, very happy.

When I see other toddlers her age, they can say many more words very clearly, they are bigger. I see kids under a year about her size!! But I just thought she was just a petite build like our families. Now I wonder if there is something more to it.
My daughter wasn't premature and there were no complications in her delivery apart from meconuim/stress near the delivery. She was assessed at all the recommended dates and nobody ever said she was a floppy baby.

My daughter has been prescribed special boots and another appointment with the physiotherapist in September. She will probably need orthotics in her shoes for many years to come. I was told we'll have to wait until she starts walking before they do more.
I've been giving advice on how to help her build some strength in her muscles.
The physiotherapist was brilliant and explained very well. However, once I got home I googled it like mad.

I was under the impression that it just means that you're a little bit more flexible. But I came here and I read posts on how kids complain from pain, how to explain why they are in pain and how they miss out on school.. how it makes them more likely to be overweight (I was an overweight child and was bullied badly for it, I really want her to avoid going through what I went through). Her shoulders make a clicking sound when I pick her up. She doesn't seem to mind it. Could she be hypermobile there too?
Now I'm worried this is more serious than I first thought.

Is it a very serious condition?
Will she be in unbearable pain or just aches like after a session of exercising?
I heard some have to take medication for the pain...

I'm so worried and I don't know what it means for her future...
Thank you for reading.

[Flora]

Hi there, and welcome
It is understandable that you are worried about her, not only to find that there is something wrong with your daughter, but also to find out just how much of a problem it can be for some. I would recommend searching for relevant topics to find out more, and feel free to ask questions.
Firstly, half the battle with hms is to catch it early, as preventing problems is far easier than curing them once they have become long term and damaging. As your daughter is so young, and by the sounds of it has a fantastic physio, she has a major advantage there. The right footwear can help so much. if the feet are supported well, they support the ankles, which support the knees, and so on. She may need to avoid high risk activities, such as contact sports, but should be able , with the right support, to enjoy a full childhood/life.
Another point to remember is that often those of us struggling the most, are most likly to come here. HMS can be mild and only occasionally cause problems, but when we are coping with life well, we are less likely to come here. Just because some have it to a severe degree, doesn't mean your little one will. As I said before, catching it early and preventing things from progressing is a major advantage to her.
For most people who are hypermobile, they are just bendy. Think of the gymnasts on the olympics. There are some fantasticly bendy girls out there, who are clearly hypermobile, but unless they have pain and other problems due to the bendiness it is not HMS. Only a few bendy people have pain, so only a few have HMS. Assessing pain in children is not easy when they are too little to tell you. You know your daughter the best, and at that age you can only use her behaviour to tell you if she may be in pain. Maybe you could discuss the possibility of pain and how to deal with it with your physio?
Her physio sounds brilliant, and a good one who actually understands how wobbly joints can be improved , can make such a difference.
Hope this site can clear things up a bit for you,
Flora

[madmum]

Hello and welcome. I agree with Flora. Sadly my son was not caught early,quite the opposite it was a fight to get diagnosed. I am sure he would not have had half the pain if he was and had received proper support. It sounds like your daughter is lucky to have the support in place. Keep up with any exercises the physio said to do and things can improve greatly. Good luck and hugs to you both.

[spottywotty]

Hello Flora and madmum,

Thank you for replying. Your posts are reassuring and have cleared up quite a bit. Flora, your explanation was what I really wanted to know.. I knew people in my family that can bend their fingers and lock them..etc but without anyother problems...and then when I saw that it can cause pain I was confused. Now I know you have HMS if you're having pains associated with it. So, thanks for clearing it up.

Madmum, I'm sorry to hear about your sons difficulties.It must be frustrating knowing that earlier support would've improved things for him. We are very lucky to have accessed these services quickly and to have a supportive physiotherapist.


Currently, she is 20 months old and I haven't noticed her to be in pain from her joints. As you say, she's still too young to communicate pain. I do massage her with the baby massage techniques after bath so I hope that helps her if she had any aches.

[Milford_Cubicle]

Hello

I didn't really notice any pain from my HM until I was in my mid to late teens and even then I didn't really know what was going on until I was in my 20's - "pulled muscles" and lower back pain was normal for me and I was always extra bendy

Anyway, my now 11 year old daughter didn't walk unaided until she was 18 months - she always chose to "walk" on her knees, but was normal in every other respect. I was young and somewhat ignorant when I had her so didn't approach the GP until she was between 18 months and 2 years about her severely pronated flat feet. She ended up with orthotics for around 3-4 years which really helped, but even now you can see when you stand behind her how severely dropped her arches are. Right now she has no pain at all and is flexible, but not as flexible as I was at that age so I'm hoping she's going to be OK. She's aware of my issues and knows to tell me.

My younger daughter is a different story - she's now 9.5 months and issues with her feet are already very obvious. Mentally she's streets ahead (and going to give her teachers hell when she gets to school!!) but I can see that her feet and most likely her having HMS is going to pose a problem in the future, especially as both myself and her father have been diagnosed with HMS!! I have already let the HV and GP know and she will be referred when she's one. The geneticist I saw about having EDS has said he's more than happy to see her when she's a bit older

[Retro]

Hi Milford,

Don't worry too much about your younger daughter at this stage as all babies are born hypermobile or they'd get stuck and we'd all need c-sections. They gradually grow out of it within their first couple of years or so.

Lindsey