Northern Ireland

[jen]

Hi, was wondering if there are any people on this forum living in Northern Ireland, and if anyone knows of any consultants in Northern Ireland who specialise in HMS. As I've said in a previous post, my 7 year old son Ryan has HMS, his physio is good and seems to have quite a good understanding of HMS, although she admitted yesterday she googled most of it after meeting Ryan, and hadn't been aware until then of the problems it could cause. The orthopaedic consultant Ryan saw, thought the bed wetting/constipation and tantrums were unrelated to HMS, but I know they are related, not just because a lot of posts on this forum confirm this, but because it stands to reason, the muscles that control the blader/bowells, and the constant tierdness and pain is bound to cause the child to have tantrumns. Physio agreed with me. Would love to have Ryan seen by someone who understands and specialises in all aspects of HMS. Help!!

[Rosie]

Hi jen

Have you contacted the HMSA and asked them?

Rosie

[orchidmum]

Hi
I don't live where you do but a few thoughts come to mind.I have two boys with hypermobility-one who is 9 and the other 5. The youngest is thought to have classical hypermobilie ehlers.
Has you son seen a paediatrican. This can be a bit hit or miss from my expeireine. Some are knowledgable and others not.
What about a paediatric rheumatologist. Again might help. Others here might be better able to tell whether a rheumatologist is the right route.
As far as the tantrums I agree they are related. Having lived with two boys with this especially my experience with the older one as we only really got a diagnosis for him when he was 8 although I had started to connect the dots when he was 5 due to the experience with the youngest.
Tantrums could be related to many things; how is school and writing? If it is hard then it is so easy to become frustrated.
another thing is how is his eating and drinking. This is a big area for my kids and I see behaviour changes when they are hungry/thirsty. They can have slower stomach emptying time so can feel full before they have eaten enough. Mine need to eat little and often through the day for a steady energy release and this helps with behaviour/mood in big way.
Bowels can be affected and this to can influence eating etc.. Is he drinking enough as they can in turn affect bowels too.
Bed wetting too as my oldest wasn't completely dry at night until at least 6 possibly 6. For the youngest toilet training was delayed till 4 and a half. Often they go into a very deep sleep as mine do. We wake the youngest up and take him to the toile about 10 pm which is what we did with the oldest too.
Not sure if any of this helps. But it is very surprising what things are connected and my strong feeling is it isn't that well undertood or recognized.
Good luck

[jen]

Thank you both for your replies, i wasnt overly impressed by the consultant, dont think he knows enough about HMS, he said ryan didnt look as if he had a syndrome, normally kids with a syndrome were a bit odd looking, but said his joints were very mobile, and he was surprised his shoulder stayed in at all. I waited over 3 years for this apt, and was so dissapointed. when i asked what i could do to help ryan he said that was a good question. at least he referred him to his physio, who is good, ryan is coming on well, can now do buttons on his shirt (just not the top one) and has been able to put his own socks on, his look of pure joy when he done this made me cry. i had asked his gp to refer him to OT 3 weeks ago, as per the physio, phoned today and suprise suprise, he hasnt bothered. going to phone round the hospitals tomorrow and ask to speak to all the consultants secretarys to see if any of them are very clued up in HMS, dont know what else to do,

[jen]

Rosie, sorry meant to say, ive contacted HMSA a couple of times, but no-one got back to me, will keep trying x

[fussymum]

Hi Jen,
Sorry your learning the hard way some medical practioners are more equal than others. Sadly not everyone we come in contact with take the trouble to gen up on hms even though they are assigned patients with hms.
I was shocked at the consultants statement that because your son did not look odd he could not have a syndrome. This statement is both inaccurate and insensitive. The problem with hms is that it is not visible to the human eye. However the implications and the way in which it presents itself are.
When jr was first diagnosed at a teaching hospital the dr made the statement to his student - "just because the child in front of you is blonde haired blue eyed and perfect to look at does not mean that there are no underlying problems". At the time i didnt appreciate this statement but over the years I have come to appreciate what he was trying to say. I would recomend that you bring information re hms with you to all apts and to ask the question what exactly do they know about hms.
Wishing you lots of luck
best wishes fussymum

[jen]

just a little update, i found a private rheumatologist who adverstises as specialising in HMS, approx 5 miles from our home. He refused to see Ryan as he said Ryan was too young, and suggested I paid privately for him to see a paediatric consultant. Although I would need a GP referral for this. I have been trying for a week to get through to Ryans GP, without any luck. I spoke to his receptionist who confirmed he has not referred Ryan to OT or to a paediatrician, although this was receommended by the orthopaedic consultant he saw a few months ago. Short of taking out a band loan and taking my son to Great Ormond Street, I dont know what else to do.

[orchidmum]

Oh heavens. What a tough time.
Only thing I can think of is can you make a face to face appointment to see GP and ask again for referral to be sent. It is possible it has been overlooked. I know I had to chase everything. I usually give things a couple of weeks and if I haven't heard anything then I follow up with phone calls.
As far as the comment about syndrome that is completely ignorant. There is an explannation somewhere of why it is called hypermobility syndrome but I just can't think of where I read it. For what is worth my boys "look just fine" and that is a double edged sword because people assume they are fine.
Good luck

[jen]

Ryan had his appointment with the GP today. I was ready for battle, fully armed with imformation I'd printed off the internet with regard to HMS and a list I'd written myself of what I expected the doctor to do. Was pleasently surprised when the doc first of all apologised for referring Ryan to that particular consultant. He said he wasn't happy with the very breif letter the consultant had written to him. He has now referred Ryan to a Rheumotologist and an Occupational Therapist. Has asked me to contact him in 2 weeks if I have not heard from the rheumotologist, as he is concerned about Ryan and is demanding he be given an urgent appointment. Left my literature with him anyway, informing him I had highlighted the parts he had previously said were irrelevant to HMS. Heres hoping Ryan finally gets some help.

[red72]

Hi
Hope you have managed to get some help. I live in NI too and there is a severe lack of knowledge about HMS here. I attended a rheumatologist who advised that I would be in pain, there was nothing that could be done and that I should continue to exercise to build muscle to keep my joints in place Needless to say it's a battle. Youngest dd has been given orthotics which did help to some extent but she is still in pain and tires easily. I ended up giving her school the HMSA info leaflet for schools so at least they would understand the condition.

Think it would help if a regional group were here so that sufferers and families have a voice. Maybe then the medical fraternity would listen..

[jen]

really sorry, only seeing your post now. ryan has at last been referred to a rheumatologist in MPH. he will be getting his apt in a few weeks as the GP has written 2 referral letters stating the urgency. I know of a private rheumatologist who specialises in HMS, who unfortunately refused to see ryan, as he said he was too young. didnt matter that I was begging. It would be brilliant if a group was set up over here. I printed out imformation on HMS, highlighting the parts that were relevant to Ryan and gave it to his GP. He admitted that when they were taught about HMS they only touched on the very basics. When I asked him if he ever tried to google it, he got a bit embarresed. Although I really dont wish Ryan had any other type of syndrome, I cant help feeling if he did, we would be given an appointment as soon as he was diagnosed, and talked to at length about how the syndrome would affect him, and what we could do to help him. Its a real pity that sufferers of HMS arent treated like that