1st appointment with consultant

[jen]

Hi, my 7 year old son has his FIRST appointment with a consultant this weekend. He was diagnosed by a podiatrist 3 years ago with HMS. I suspect EDS, as he is showing most of the signs of this. I am worried sick that his consultant will not take him seriously. His shoulder has dislocated a couple of times, and his arm. I put it back in myself. The first GP told me this was impossible and HMS just meant that he was bendy. Three GPs later and countless bottles of calpol, he has finally been referred. He has constant trouble with his bowells, for which he was given laxatives. I took him off these as he was starting to have accidents in school. He wets the bed at night, which his GP thinks is unrelated. He sometimes needs spoonfed at dinnertime, as his hands go into spasms and he is unable to feed himself. Thankfully his teacher this year has been brilliant, monitoring how much written work and colouring in he has to do, and giving him shortcuts so he doesnt overdo things, unlike his teacher from last year who gave him detention for being unable to write a lot, and shouted at him to run quicker when he was unable to walk. I feel I have to constantly fight for my little son to get help, In the middle of the night when he is screaming in agony, and I cant even cuddle him as it hurts him so much, I tell him it will ease the older and stronger he gets. I'm not even sure if this is true. Has anyone else experienced or had a child who experienced any of these things? Does anyone know of any support groups in Northern Ireland?

[barkingmad]

Hi Jen,

Welcome to the HMSA boards. I am so sorry that your son is suffering so much.

The bowel and bladder issues may be directly related to a HMS. I hope that your appt with the consultant goes well. have a look through all of the children section you may find something there to help.
TC BM

[jen]

Thank you, had a look through the childrens section. It does seem his bowell/bladder problems are because of the HMS, Will say to the consultant on Saturday.

[jen]

Thank you, his appointment is tomorrow, so nervous, hope I remember what all I want to ask, if I do, will be there all day, checked out the childrens section, there is so much I can identify with for my son, really wish he had been referred earlier,

[Superstottie]

Good luck for tomorrow! Maybe take a list of the questions you have, I tend to do this a lot as my memory is totally rubbish and saves a lot of kicking yourself afterwards having forgotten everything and sitting there like a complete idiot!

Bex! x x

[barkingmad]

definitely the list of questions but also the list of things the child struggles with, including physical skills and educational ones. Good luck we will keep our fingers crossed.

[jen]

saw the consultant earlier, he has ruled out EDS, thankful for that but a little worried he is wrong, he is referring ryan to a paediatrician as he says the bed wetting and bowell problems are unrelated to HM, I'm not convinced as it seems so commom in other children with HM, is also referring him to another physio (private) who he says will be better imformed on HM, told me not to go back to the podiatrist as the othotics Ryan has been wearing for the past 3 years, just added to his pain, and would not correct his feet, as it was due to problems with his muscles and not his bones. He couldnt tell me where to get special pencils or reccommend which type of matress would be good for Ryan. Am still very worried about Ryan, as I was given no tips on how to make things easier for him. Am grateful for all your advice and best wishes. I have gained more from this forum than from any doctor.

[jen]

my wee son had his apt with the physio on Wednesday, she was brilliant, gave him exercises to do and said his bowell and bladder problems were because of the HMS. we were there for nearly an hour and have to go back this week, she said he has the most severe case of HMS she has ever seen, feel like someone at last doesnt think im an over anxious mother

[trekster]

Welcome to the boards and good luck in getting help for your son.

Have you tried applying for child DLA? Not sure if this applies in NI but you must provide a large amount of care
for your son especially at night.

I don't understand the reasoning behind the orthotics being no good. I've found they help with another HMS complication
flat feet.

I've also got the bowel and bladder problems relating to HMS, have to go quite frequently and was checked out for diabetes
a few times because it was so bad, also severely constipated at times.

[sheppeyescapee]

Welcome to the forum I hope the people on here can be of some help. There are a few parents lingering around on here.

[jen]

I applied for DLA for him, but got turned down with the letter stating he wasnt entitled to it as he can walk unaided. I have the form to apply again, as it defines DLA entitlement as for a child who needs more care than other children of the same age. Just so releived that someone has recognised that my son does have a condition and does need help. Sometimes I just felt I was going mad. When he was 2 his arm came out of the socket. I took him to his GP who told me I'd imagined it. His physio on Wednesday asked if his left shoulder or arm had ever dislocated as there was a lump there. I told her what happened 5 years ago and she said that explained the lump. Have tried to stop thinking about all the times he's been let down in the past, as me getting angry isnt going to help him. As I've said before this forum is brilliant. Was looking through it last night, and only made the connection with the teeth grinding to HMS. My son wakens me grinding his teeth, and hes in another room. Thanks again for your replies, it really does help to know my wee man isnt on his own.

[trekster]

I didn't know HMS and teeth grinding were related either that's 2 things I've learnt this week. your GP.

[jen]

nor did I, and Im a dental nurse.
Thats what I mean, a lot of health care professionals arent aware of it at all.

[Smol]

I clench my teeth as well as grind them. Left side of jaw is really clicky/crunchy and feels loose, but the side I grind (right) is stable and tight. what a weird and wonderful bunch we are

[gila]

Hi and welcome jen
yeahhhhh for the physio! that referral is at least one thing the paed did get right, as otherwise he doesnt sound all too clued up about the difference between being HM and having HMS...

maybe the physio could write to the paed, explaining that bowel and bladder probs are most likely due to HMS (paed will most likely believe a 'fellow professional' more than "just a parent who read something on a forum" )

I'd also ask that physio their opinion on orthotics for your son, and if they can refer him to an OT (occupational therapist) or advise which OT near you might be clued up on HMS- as OT are the ones that tend to deal with hands (so they can advise on/'prescribe' special pens/pencils, supports and exercises for the hands)-
maybe they could include their advice/opinion on that (and also maybe the jaw/grinding teeth probs etc) in letter to paed as well

good luck on your 'journey'- at least you now have one med bod who seems to get HMS and hopefully the physio will take this opportunity to educate a paed on HMS and write to them as then you (and everyone following in the future) will also have a clued up paed-
here's hopin...
xxg