Private or NHS route for diagnosing my 6 year old?

[Danstclair]

Hello

I hope I am ok starting a new thread on this. I have read some of the other topics regarding what to do about getting children diagnosed with Hypermobility/HMS and wasn't sure whether to post there or not. But seen as my main question is regarding just cutting out the NHS at the start, I will post here. (Modnote: Moved to Intros - Hi & Welcome!)

My 6 year old son has been complaining for a long time that his bones hurt. All his bones from head to toe and he says it is all day and the only time it doesnt hurt is when he is asleep. Initially I thought growing pains, but It started getting so frequent I mentioned it to our Doctor when we were there for a different problem. She looked at him and said it is likely he is hypermobile as he is very bendy (wrists/shoulders/knees) etc. It turns out that his dad is also the same, but has never caused him a problem and his dad's sister. I am also a bit double jointed in my fingers and my sister is also quite bendy! But none of us have ever experienced any problems. So I am guessing with a bendy family on both sides, there is a high chance he is Hypermobile. The doctor has referred (at end of December) us to Paed Physio and the appointment is at our local hospital in mid March. The Doc said if he is not hypermobile then we will have to look at other possible causes of the pain.

Fine, or so I thought. When my son found out he complained bitterly that the appointment was 'so far away'. I told him it was relatively quick and he'd have to wait! Fast forward to Parents Evening at his School last night where I was flicking through his Reflection Journal while waiting to see the Teacher. I was a bit concerned to see a couple of entries about feeling sad with a sad face drawn next to the entry. When I questioned him later at home he looked a bit embarrassed and said he wrote it because he felt sad that his bones hurt so much all the time.

I must admit I didn't quite realise how much pain he has been in. He is not the sort of child to complain and I should have taken more notice. His order of pain is 1) head, the top, then front, then neck, then face, including headaches, 2) arms, from shoulder to and including all fingers, 3) legs, again from top to toe, 4) body, ribs and then chest. Which obviously includes the whole body!! He described the pain to me by indicating a very fast lightening zig zag movement with his hands and says it is just continuous. I have now come on the Internet to look a lot more closely at the implications of being Hypermobile and an awful lot now makes sense. I must say he is not included in the bracket with any speech problems, he had no problem crawling he was early at 6 months and then was walking at 9 months. I don't know if this would exclude him from HMS. But a lot of other stuff sounds very familiar, flat feet, terrible writing problems, constant falling over, his feet are a bit turned in, he has had a broken arm and of course all the bendiness - both his shoulder blades stick out in the most alarming way! And the pain, which many describe on here. There are other familiar things too that I can't remember now I am in full flow of typing! He constantly complains about being cold and he never used to complain about that. I am not sure if that is linked at all?

I am guessing my main questions are....

Will a physio be able to properly assess and diagnose him? From your experiences with this, would I be better off just booking a private appointment with a Rheumatologist? I am shocked to read at the merry-go round a lot of you have been on with getting a diagnosis and am wondering if I should just get a private appointment and take it fom there. I have spent time in physio departments myself after childbirth and I think sometimes they are not always sure what to do!

If it is not HMS, then I want to find out what is causing this pain and the headaches pretty quickly as I am getting very concerned now. Sorry for rambling and I really hope that it is not a problem starting this in a new thread!

Thanks

Danielle

[Blaadyblah]

Hi Danielle, yes you can just post into existing topics, in fact that helps people to find information here so please do! If you're overwhelmed at the length of a topic you can search within it for keywords.

Oh your son's story does sound familiar. Diagnosis or not it sounds as though seeing a decent physiotherapist and occupational therapist would benefit him and Paeds will run some tests to rule out other similar conditions (there is no test they can run to diagnose, so it must be done largely by exclusion of other causes for the various criteria). Depending on where you are the this may be excellent or flaky... that does sound pretty quick though, February is short! One other thing, it might be an idea to record your son's activities and pain levels for a while leading up to his appointment.

They will likely refer him for physiotherapy (call your local department to find out roughly how long the wait is) and probably a podiatrist. They should be able to advise you on appropriate pain control for him. The improvements aren't quick, as we're all so different any treatment has an element of trial and error. That will be the same whether you go private or NHS and your son needs to understand that - there is no magic cure. Sometimes little kids think they'll see the doctor and everything will be better right away. I remember vividly as a child being so furious the doctor couldn't fix the problem that I later wouldn't co-operate with the physiotherapist. Whichever route you choose it might be an idea to gently prepare him for the idea that getting better can be like growing - it takes a long time and you don't notice you're getting bigger/better until you can reach something you couldn't before.

My experience of private was decades ago, surgical and before they worked out I had EDS so not relevant here. My daughter got a formal diagnosis of HMS last year, but has been treated for various related conditions since she was tiny by her GP, Paeds, physio and podiatrist. It became an issue because her school needed it formalised rather than because she was unable to get treatment via her doctor.

Anyway, welcome to the boards, I'm sure someone will be along shortly who's better able to answer the NHS/Private query, but I hope the general stuff helps. Take a look at the topics we have on pacing, pens and writing and so on. I can't use a normal biro for more than my name and address!

[Superstottie]

Hi Danielle

I have just gone down the Paediatric Physio route with my 3 year old. This was through the NHS and we had to wait about 6 weeks from referral. I know that it can seem a long time to you to have to wait, but I think it would be worth going down the NHS route, as they do seem to be getting more knowledge, and could you afford to pay for al the Physio etc that he may need, otherwise you would have to wait for this through the NHS anyway, and would probably have to go through your GP to get a referral after getting a diagnosis privately.

In our case my 3 year old isn't too bad at present, and we are doing the watch and wait thing. I did ask about my 8 year old while I was there though, and the Physio suggested that I should get him referred to him, who will assess and decide if he should be sent to Newcastle to see the Paediatric Rheumy and the specialist Physio and OT etc, to get a full care plan and then come back to the local team. It could be that they have a similar system in your area, where the Physio assess and them can refer to specialist teams. As they aren't even sure if it is HMS that is causing your sons pain then this would probably be the best route, as then you can be referred to the right people, without the expense of you paying out to see someone who will just say it's not whatever they specialise in. The Physio we saw was very knowledgeable in lots different conditions, and surprising knowledgeable in HMS.

I hope that you get some answers for your little boy soon, as I know how hard it is to see your child suffer and not know how to help. I take it that you are giving him Calpol etc? Also have you tried heat packs/pads? I find them very helpful and have an electric one that was pretty cheap from Argos. If he is struggling with school then maybe you could arrange a meeting with them and discuss him only doing part days, or having somewhere he can go and have a lie down if he gets too tired or in too much pain, with lots of cushions and heat packs. You can Flexi-school, which mean part school and part home educating, it can be very useful in cases where children are struggling at school due to pain/fatigue as it means they can have a break and do work later in the day, or over weekends. The coldness thing can be common in HMS, I have always complained of it being cold and everyone else complaining they are too hot as I have the heating on full, wrapped in jumpers and blankets. I am not sure why it happens but my personal theory is that we use so much of our energy just staying together that we can't keep warm too, or that it is down to useless circulation that many of us also suffer from. Hot baths and heat pack are useful for this as well.

Hugs to you and your son! You may not be suffering the pain like your son, but I think the pain of seeing your child suffer can be just as bad!

Bex! x x x

[Lauren]

My physiotherapist and general treatment from the NHS has been brilliant. What is posted on here are the worst cases. At least give the NHS physio a try before you go private. Physiotherapy is not easy, it's time consuming and tiring, but I believe it is probably your son's best chance of reducing his pain levels. DON'T give up if it's not helping after a month or so, it takes quite a bit of time to build up the muscles.

Also, it's always a long wait for the first appointment, but after that the appointments will probably be regular, every two weeks or so if it's anything like the adult physiotherapy. If your son is upset because it's such a long time before he gets to see a physio, (Six weeks seems like forever when you're a kid) then you might want to try doing some exercises that will help develop his core muscles which is kind of essential for most bendies. It might not help, but at least it will mean you are doing something instead of just waiting for the appointment so it's less frustrating to him. Try looking for really basic core muscle exercises on the internet. If your son is tired he might be slouching a lot when he sits. It might seem a bit cruel to pester him to sit up straight when he's in pain, but its important to develop those muscles. Help him find a happy medium that is not slouching, but is comfortable.

I'm going to say now I'm really not an expert, this is just information I've picked up from my treatment.

Muscles naturally tighten up as you become older, so chances are it will probably get better as your son grows up, so don't worry, this isn't a definate life sentance!