Toe Pains in child with dyspraxia?

[zonedout]

This is my first post in sn - my ds1 was diagnosed with severe dispraxia and hypotonia 10 days ago which has come as both a shock and a relief after some truly difficult times for him since starting school (he is now in year one)

We are still waiting for the report and, as he was diagnosed at the very start of the Christmas holidays, have been unable to do much in terms of getting the ball rolling for further help etc (but did take him horse riding today which he loved!)

So, my question is whether anyone else's dc ever suffers from excruciating toe pain, particularly at night? My ds has suffered with this on and off for some time and is going through a particularly bad patch of it at the moment, with frequent night wakings from the pain. He very rarely cries from pain (sensory issues) but this is really awful for him. The only thing that seems to help a little is if I literally squeeze his toes tightly together. This morning he even woke with the pain in his hands as well as his toes. There is hyper mobility in our family but the neurodevelopmental physio who assessed him said he was not hypermobile.

Any thoughts or experience greatly appreciated until we can get further help in the new year.

Not sure zonedout but didn't want your post to go unanswered. If he is in severe pain, you could try calling NHS Direct or asking pharmacy. How old is he?

Thank you for your reply waiting. He is almost 6. Thankfully he had a better night but I know there is obviously something ongoing and chronic going on so am going to try to get him seen by a specialist early in the new year.

In the meantime, would still appreciate any advice if anyone has experience of anything similar. Think I may try posting in health too as it may be unrelated to his other problems.

I would hedge a bet its not related to his dyspraxia-it sounds a bit like a Reynauds like thing where poor circulation can cause painful and sometimes blue extremities-worth a GP having a look at him but I have a feeling its unrelated to his dyspraxia.
HTH

I have a DS age 9 with dyspraxia - but to my knowledge he doesn't have the pain that you describe. He does have other pain which as you say, he doesn't mention as he too has sensory issues and just doesn't seem to notice. Are his fingers and toes cold to touch when you squeeze them or are they red and burny - or just normal? I'm asking as that often other problems are missed or mis-diagnosed as being one of the symptoms of dyspraxia - or any of the other neurological based dxs. For example, stomach cramps and abdominal pain can be part of dyspraxia, but that doesn't mean that it is only the dyspraxia as my DS also has chronic IBS and is treated separately for that.
It is defo worth going to the GP and asking advice - it could be something circulatory if the squeezing helps - and not related to dyspraxia at all.

Thank you both so much for replying. His fingers and toes look and feel completely normal when he is having the pains, no swelling or redness and not overly hot or cold.

auntevil in what way does your ds's dyspraxia affect him? How does he get on at school? As it is such early days for us in terms of diagnosis, I am unsure of what to expect from ds's school. I haven't told them yet as he was only diagnosed on the first day of the holidays but so far they have been absolutely awful in dealing with him and the difficulties he has been having. In some ways they have actually made matters worse for him.

Schools an interesting one. They do quite a bit for him - without me having to ask as well. This is the second school he has been to as the first did absolutely nothing - in fact worse than that, they damaged him.
Unfortunately i have a jekyll and hyde DS. He works so hard at school - to the point of burn out. I then get the fall out at home. School can recognise the physical aspects of the dyspraxia and give him daily OT - work to a programme given by OT for his specific needs. They do this voluntarily - no statement. I did ask about a statement, but the school would not support as they don't see he has SEN, just SN - which they will manage without extra support. It would be difficult to justify the need for extra support when he is already at a level 4 in year 4 with no support other than reminding him what he is doing and keeping him on task. Our LA isn't a pushover for statements anyway (is any?!!)
I'm keeping a close eye on everything, as i think secondary school will be a whole new ball game. I will have to choose it carefully and be pro-active with the SENco.
Its a toughie zonedout - all of our children are different. I tried working with the system at both schools. The first one it didn't work, the second school it has. It isn't perfect, and there are some inclusion issues that i do battle with, but they have the attitude to help. Now you have a dx, that's where i'd start - seeing what the school are prepared to do for you without a statement - but be prepared to go for it yourself if your DS needs more support than the school are prepared to give.
Keep positive and keep coming back for advice from the many here who have been through the school vs parent dilemma.

Hi zonedout. I am also new to Mumsnet, but saw your message and wanted to reply. My sons don't have dyspraxia but they do experience the pains you describe - and get relief from having their toes squeezed. they have eventually been diagnosed with fabry disease, a genetic metabolic disorder, which means they are missing an essential enzyme that most people produce naturally. neuropathic pain is an early symptom. I am not wanting to worry you,but it might be worth getting checked out via a blood test? The disease is treatable by the way.

Thank you, Al62

I had never heard of fabry disease but have just looked it up. It sounds really horrid, so sorry your sons are sufferers. Hope they are not affected too badly.

Took ds to the GP today who has referred him to a paediatric rheumatologist. I shall mention fabry disease. Hopefully it's coincidental but there has been a lot of heart disease in my family - and my father had a mitral valve prolapse.

Hi Zoned. My son gets this and it can wake him in the middle of the night. First time I nearly called 999, he was so obviously in agony and we didn't know what was wrong. He is 3 and couldn't express what was happening to him. We have now taught him the word cramp so at least he can tell us what it is. It seems to happen a lot when he has spent the day walking a lot. I think temperature change can be a trigger. He is helped by toe squeezing, hot water bottles and Calpol. It is quite common and some people describe it as growing pains.

My DS has autistic traits but is not autistic. I think the foot pains are part of his neurological issues and are possibly linked to dietary problems/vitamin deficiencies. I think many kids with neuro problems are inclined to deficient in zinc/magnesium and other things and this is associated with muscle cramps.

Over the last few weeks I've been putting Epsom Salts in the bath to help up his magnesium. BUT the muscle cramps have got worse during this time! I thought it was supposed to make this better! I wonder if it is one of those weird things where symptoms get worse before they improve? I sure hope so.