Night Time Leg Gaiters causing DS pain in morning

[SprMum]

Hi I'm new to MumsNet
My DS2 is almost 5. He has Hypermobility Syndrome and also tight hamstrings and achilles tendons. He suffers from pain in his legs and cannot ride a bike or a scooter like his peers. He's had a rough year started school just after 4th birthday and was nowhere near socially and emotionally ready. Now his Physion has introduced a night time leg gaite (basically a thick fabric wrap-around support which is boned like a corset and fastens with long velcro straps - it keeps his leg completely straight). He wears it on alternate leg each night and HATES it with a passion. He is waking up with stiff leg on a mornign and pain behing the knee of whichever leg it is on. Any advice or just a sympathetic ear please!

Ok that was 'Gaiter' not Gaite and 'Physio' not Physion, also 'morning'and 'behind' not whatever i put - told you i'm new at this!!

I would call the physio as there is little point IMO him wearing it if it alters his gait due to knee pain.

My ds had problems walking b/c of tight tendons throughout primary school, so tight that he wouldn't be walking now had we waited any longer. Everything was put down to his genetic condition and we were just offered insoles that rubbed his feet so much that they bled, they did consider some splints next but I felt that as the problem seemed to be coming from the inside, no torture implement was going to fix it on the outside (someone else was with the same genetic problem was given all there was around and he is in the wheelchair now).

In fact when drs gave up on him, I started to look into it from the inside. A chance remark by a nurse who said oh, it looks like his tendons stopped growing, made me look into stuff further - why?

Then I found out that there is very little blood supply to tendons so if that's affected, then they will stop growing. I looked into nutrition and discovered that some nutrients eg vit Bs, Mg, Zn could potentially help. Because of my ds other weird symptoms, we went gluten free.

Within weeks the tension in his tendons released, he visibly straightened and stopped tripping over. He used to look frail, bent and unsteady and within a few months he was selected to represent his school in badminton (secondary). Other problems improved significantly, inc learning, speech, concentration, it was almost as if opened up to everything around him.

It could be that your ds is missing some specific vits? Do look into nutrition, inc stuff like omegas etc, there really is quite a lot that can be done from the inside.

You have my sympathy! Ds wears day and night time splints, he is supposed to wear gaiters over the splints but we have enough trouble with the splints. I suspect it is hurting behind the knee because it is doing it's job, stretching the tendon and the stretch is causing pain. There is probably nothing that can be done other than giving a dose of calpol and reassuring him that they are working. It may ease with time too as the use of the gaiters takes effect.

nightcat - I'm interested to hear about those minerals and vits. DS has CP but i've stopped giving Zn on a regular basis, I think I'll go back!

HM, my ds was dx when little with a progressive neuro deterioration with "once started there is nothing you can do". For 10 years I really thought that was the end and he was getting progressively worse. When internet came about I was looking everywhere for anything that might help, he had various tests (ALD etc) but no clues and was still slipping.

Via another forum I found out that in some cases gluten affects neurology, well, I just had to try it.

Before diet, his shoe soles were drastically assymetrically worn, but it was osteo who pointed out that we need to look at the whole posture rather than just doing soles/splints. He had a few sessions when already on the diet as I wanted to kick start him in various areas when I realised he started to improve. The soles progressively changed and the current are almost symmetrical, although one of his feet is ever so slighthly curling to the inside, I don't think it can be fixed now. It was also noticeable, when we went gluten-free how he started uncurling his fingers, stretching them outwards, for me it was like a miracle.

Hard to know if it would work for someone born(?) with CP. Our neuro said that in his experience of gluten sensitivity cases, once gluten is out of the way, he will start absorbing everything better, but 2 years on I did a hair test for him and he was still low in Zn, Mg and high in Cu which is toxic. Was also advised to add B vits. The key was to do it selectively, rather than multivit.

The best bit is that I feel we are in control of it all as it's just food and vits and by golly, I do know when he has been glutened as his speech and reactions drop and take a few days to recover. We just do an occasional vitamin/omega capsule from time to time, maybe 2-3 times a week and not in mega doses and he is def not getting worse overall in any area if we make sure we stick to diet.