Forum home Toddlers & older children Toddler

Annoyed at the hospital

Isaac has a condition called hypermobility and hyperextension in his joints, what this basically means is that his joints have a greater range of movement than normal, as a result they are not as supportive and he does have problems with balancing/walking etc. Anyhow, when he was 18 months and still not walking he saw a paediatrician who told me to get him some supportive boots and see how that went, all went well and he started walking, he has to wear boots all the time becuase otherwise he walks on tip toe which can cause tightening of the ligaments which will cause a whole new range of problems, the paed saw him again in January and referred him to orthotics as he thought that Isaac would need proper medical boots to support him, I have been to the hospital today where the dr at the orthotics clinic assessed him and was saying to the physio therapist about getting him some boots and she said no he will be fine with shaped insoles, now that is fine but for the fact that I have to spend ??45 on shoes every 8-12 weeks for him as he cant have clarks becuase they have no idea how to fit him and their shoes are nowhere near as supportive as he needs. The physio gave the reason as "mum obviously knows what he needs and she has good shoes for him so theres no need" I guess that means if I'd taken him in a pair of crappy shoes that didnt fit properly and didnt support him then I would have got them.

I am soooo annoyed, It is so expensive and there is apparantly no grant I can get to help wiht the cost I just have to live with it, he is going for a review in 6 months time so I maight get him a cheap pair of the peg at tesco and see what they do then.

Sorry for the moan image


  • Yes if they see you've bought him cheap shoes they will think you don't know what he needs or that you can't afford them so it will help your case.
    Thats a terrible attitude that they had toward you - it's like because you care about your child you're being penalised!
    good luck and I hope you get this sorted.
  • Emma Lou, I doubt he would be eligible for disability living allowance, I did speak to someone on their "helpline" but she just said it is hardly a disability, I dont know what you have to do to get dla but we have been trying to claim it for my hubby as he has a brain tumour and suffers from epileptic seizures as a result but they dont even consider that as a disability and have refused us it for that. Seems to me that those people that can be bothered to work hard and are willing to bring their children up with values get sod all, sorry if I offend anyone with that I dont mean to be we are struggling to make ends meet since hubby diagnosis as although he still works he cannot drive so he cant fulfill all the duties of his job and has had to take a paycut but still we get no help :\(
  • I have just been talking to my husband as he is a Rehabilitation Officer who works with Visually Impaired people and is always filling in DLA claims. He said that you should get DLA for your son, you need to go to the CAB or free legal advice centre and ask them to help you fill in the forms. Also get letters from your doctor and specialist to back up your claims. You should also get DLA for your husband.
  • hi. my 3rd son has hypermobility syndrome and flat feet. he suffers from pain and discomfort from it. we get lower level dla for him. as he needs some additional help with every day things. he is now 5. his feet and ankles slide over each other so so he has to wear surgical boots with inserts which are funded by the local nhs . we had to get letter of approval from our doctors to get them funded though as sometimes they can not be funded. we first noticed the hypermobility when we got him his first pair of shoes as he would kepp falling over and was clumbsy. so we went to see the hv. she referred us to physio and thats who we still see. he is also under consultant care for any pain or discomfort he has. he will wake through the night crying in pain. it ius hard to see hm like that.
    i would give the dla a try. they can only say no.
    i think it is bad about them refusing to give you boots for him. joshua got boots because of this ankles being unstable and the inserts for his flat feet. clarks boots arn't as supportive . we had to get joshua a pair from clarks as there was a huge over lap in getrting his new surgical boots sorted recently and they were no good. but he had to have something.
    i really hope that they have a rethink for lo in 6 months time. xx
  • Hi Pen, my eldest daughter also has hypermobility and like your son she still suffers with pains in her joints at night, especially her hips knees and ankles, it is awful to see her in such pain and not be able to do anything about it, as a result of her hypermobility her knees and her hips are now rotated inwards, her knees knock together even when her feet are straight so to stop them she now walks with both her feet outwards which is just aggravating the problem, as she is 9 she is becoming very self aware of it too, she doesnt like wearing skirts or legging becuase she says people can see her legs :\( When I recently asked the physio and the orthotic specialist they just said its part and parcel of what she has, it is sooo frustrating, it breaks my heart to think that Isaac is going to be the same, since he has had the inserts which admittingly is only a week they have done nothing to stop him tripping over and have actually forced him up onto his tiptoes more. I think I will give it a week or so then phone them back up, trouble is I have been told that the proper orthotic boots are about ??100 a pair and our health authority are one of the most in debt in the country so I am guessing that is why I can't get them.

    As for the DLA, my husbands case has now been sent to a tribunal as they have uphelp their decision, this means that we can have a hearing but they advise we get proffesional help which we cant afford, also the stress of having to go to the tribunal could trigger another fit for him, it is an uphill struggle, they do have the medical reports from the g.p but for some reason they havent applied for a report from the nuerosurgeon, when I asked them why they just said it was irrelavent!! I may try again becuase we are needing the money but when you keep getting turned down it just seems like a battle not worth fighting. x
  • hi hayley. i really don't know how these people work out that you can't dla? it' s terrible. my mum has cancer and can't get any thing either. it's soooo madening. i really hope you get somewhere soon with your claim, it's not on.
    yes i hate seeing my joshua in so much pain, it's distressing to see isn't it? to be honest my joshua has been wearing the boots for about 3 years now and they have made no diffrernce to him at all, he still falls over and is clumbsy. but we have been told that he has to wear them. got physio next month again. not that it does any good. never mind, i just hope that he gets better in time. good luck with everything. hope all turns out ok for you. xx
  • Thanks pen, My friends little boy had boots from the hospital and she said the same thing as you, that it really didnt make alot of difference to him, I suppose I am thinking about the money side of it really, Isaacs boots cost me ??42 to ??45 every 8 weeks or so then Megans are ??55 luckily hers last about 6 months now though we have to go to a little independant shoe shop and I must admit she is fantastic, she knows all about hypermobility and other problems and she spent about 40 mins fitting Isaacs shoes and watching to check that they fitted properly and that he could walk well with them, she got out a dance mat so she could see him stamping in them and a football, she said you just cant tell from letting them take a walk up and down the shop whether they are fitting well.

    Swimming is a really good form of excercise for hypermobility and although Megan has struggled with some of her strokes it has helped her alot and her physio said that although she still gets bad pains they would be an awful lot worse if we hadnt stuck with her swimming as that is the best sort of excercise she could do. It also took her ages to be able to ride a bike and she is not very good at running becuase it makes her legs ache. The thing I found hardest when she started school was that none of the teachers seemed to have heard of it or knew about the problems it could cause for her, they know now though :lol:

  • Hi emmalou, I have sent the tribunal forms back today with loads of info from the dwp website which indicates that he should get a 2 year award, especially as his epilepsy is unlikely to be able to be controlled by medication as it is caused by a tumour, also the fact that we have young children seems to work in our favour as if I left him with the children alone then there would be significant risk for the youngest ones. Heres hoping we get somewhere, failing that as you say I can continue to apply then maybe they will get sick of me and give it to me to get me off their backs :lol:

    You are right about the genuine people not getting it, my friends hubby has severe epilepy again caused by tumours, he is in a lot worse state than my hubby and they have just had their award cut, she cannot leave her hubby alone at all as he has multiple seizures everyday, on the other hand a person at my daughters school frequently boasts about how they get the highest rate becuase their son has ADHD, now I'm not saying that there are not many genuine cases of this out their but basically she feeds him crap and has no control over him they are all massively overweight probably due to the amount of crap they eat (he was going into school the other day eating a mars bar and a pack of smarties!), yet they get it and we dont, the system sucks.
  • Hi Hayley 1 I have been reading your posts and I really feel for you. My LO has hypermobility and hyperextension of his joints too (as I do) due to what the neurologists think is a muscle disorder however it's not yet been diagnosed. We were really lucky to be awarded the highest rate for him straight away and they did ask for a report from the hospital which I think clinched it. I went to a resource centre called 'The Roundabout Centre' it's a bit like CAB but it's a government sceme I think as the govenrment has to be seen to be helping people claim the benefits they are entitled to. they helped me fill in the form.

    Have the hopsipal tested for any sort of genetic disorders in your children? they sound very like me when I was little, your daughter especially, i always tripped up (and am only just being referred to pediatrist) always fell over, couldn't run, jump or ride my bike far. I could swim though and always enjpyed that. I suffered dislocated knees which is more commong in girls with hypermibility due to the shape of our pelvis and hips.

    I haven't applied for DLA for myself because i'm terrified of them saying no you don't deserve it so I haven't plucked up the courage yet.

    i think your little boy sounds like he should be entitled to something and even your little girl, Do they both have regukar physio?

    Mine and the baby's physio are great but we do have excellent services where I am, It's a shame it's not the same accross the board

  • Hi chriss, thanks for your reply, my children see the physio as part of their visits to orthotics, Isaac was referred to the physio but there is a severe shortage of paediatric physios in our area and it took 6 months to get the appointment through, she watched him for about 10 mins, agreed with what the paediatrician had said 4 months earlier and said that she would refer him to orthotics and he would see a physio as part of that. Trouble is the orthotics appointments are 6 months apart. With regards to the muscle disorder, I did wonder whether there was somwhting else causing it in my son as he still cannot get himself up off the floor without using something to pull himself up on, Its hard to explain but my 3 others including my daughter who also has hypermobility all learnt to crawl, then stand and cruise, then they learnt to stand up by themselves unaided before they walked, he will be 2 in April and still cannot stand himself up. It does worry me a bit but I am trying not to think too much about it. Also he has developed a squint which he is waiting to see the opthalmologist with. When I took him to the g.p. he just said that it was all to do with his muscles and didnt take it any further than that. I am worried becuase initially when he was referred to the paediatrician the hv was concerned that he may be showing some of the traits for muscular dystrophy and although the paediatrician has said the most likely cause is down to the hypermobility and hyperextension he didnt actually do any tests or rule it out completely.

    As for my daughter, again she only sees the physio when she sees the orthotics for her inserts into her shoes, her hips have now rotated inwards as have her knees, she has been in a lot of pain recently and I am wondering whether to take her back to the g.p. about it, although all she will do is refer her to the physio which will take 6 months then the physio will just say that as she sees her as part of her orthotics appointment and do as she did last time and give me sheet with some excersises on which do absolutely naff all to help then tell her that pain when shes growing is part and parcel of what she has. Her joints are constantly clicking sometimes quite loudly and she is often tearful about it. It sucks that if we were living somewhere else that we may have access to better services, it is just so frustrating. :cry:
  • Oh Hayley I really feel for you. I know what it's like to have to just wait and wait but I do feel lucky that the services here are so good. Paul's physio sees us every 3 weeks at home, we also have access each week to a playgroup where the occupational health and physio goes to, and we have hydrotherapy each week too. It helps so much with Paul's muscles and is invaluable for meeting other people in similar positions. where about in the country are you?

    you mentioned a squint. have you read anything about Ptosis (pronounced tosis) it's to do with what looks like a droopy eyelid. i have it but no one ever really knew what itwas, someone suggested a squint when i was very little but i was a puzzle to everyone. now that paul is being assessed, we have noticed something with him and his neurologist says it's a ptosis which is common in muscular problems.

    if you look into muscular problems muscular dystrophy is the name for a group of about 16 different conditions and myopathy's are others, but they all can have very similar issues

    we saw the paediatrician as soon as paul was born as he was very floppy which is his main problem really, this tends to increase the chance of then being hypermobile etc, after lots of tests which came back clear he referred us to neurology at Alder Hey and it's gone from there

    although i'm lucky with paul's referrals i know lots of others even here who haven't had quite the same treatment but i do tend to push for things in a very nice way of course. luckily my gp if fab too so i always get help here.

    maybe you could speak to your gp again and just address your concerns, maybe stress you're not sure that you're happy to accept that this is just the was it is, you want more done, mor einvestigations or more physio at least
  • Hi Chriss, its so frustrating I could cry, I took Megan and Isaac to see my g.p. this morning, Meg has been getting such bad pains in her hips and ankles that she has found it hard to walk some days, I explained to the g.p. that I wasnt happy and that I was concerned there may be underlying genetic problems. Her reply was simply that if the orthotic specialist had thought there were further problems he would have said. I pushed for a referal for Meg back to the physio or the paediatrician and she said I was unlikely to get an appointment with in 6 months!!! Megan started crying and said she was fed up with her legs hurting and not looking right (due to the hip and knee rotation) and the g.p told her to ask me for bloody calpol when it hurt. What p*ssed me off even more is that I read her notes whilst I was in there and the initial referal says that although there was slight rotation on her knee her hips were straight, now her knees are severely rotated and her hips are too. When I said I had spoken to people who found it no problem to get referals she just told me that she cant help the system and if I want to beat it I could go private. I cant afford to go private we are struggling with money as it is. I am so angry I could really just scream.

    I asked if Isaac could be referred too as I didnt want to have to be going through this in 7 years time if it could be avoided and she just said the same sort of stuff. I asked whether they could do tests or things as I'm still concerned about Isaac and all she said was that they are costly and not always necessary and that as he was still under the paediatrician at the hospital I should ask him when I see him again, unfortunately that isnt likely to be for another 10 months. I might go back to the hv about him becuase she was really good about getting him seen in the first place and really pushed for him to be seen.

    When you mention about droopy eyelids what exactly do you mean? Sorry if that sounds a bit dippy, but Megan has always had really big eyes (so does Isaac) but in the last 3-4 years her eyes look as though they are half closed sometimes and where in a 'normal' looking eye the eyelid seems to be completely covered when the eye is open, Megans eyelid can be seen (sorry that prob sounds a bit vague but Icouldnt think how else to put it) she almost looks half asleep at times.

    I think I will wait and see if I get a call back regarding the physio referral and if not I will take her to see a different g.p. and see if I get anywhere with them.

    Sorry to go on but it just seems that you do understand what I am going through and it is just so frustrating to be getting nowhere. In answer to your question I am from Huntingdon which is in Cambridgeshire so we come under hinchingbrooke hospital which has and I believe still is being threatened with closure, the next nearest hospital which would be the one we went to if hinchingbrooked closed would be Addenbrookes which in my opinion is not really a lot better. Maybe I will move to a completely different part of the country, drastic I know but thats how bad I feel about it. x
  • Sorry Hayley I've been trying to reply for the last couple of days but have had trouble with the laptop.

    Did you get a referral for Meg then? you should have one then after a couple oif months you can start telephoning the hospital and pestering them for an appointment. I have had to do this and although i am normally quite shy and quiet, since having Paul I have become more pushy, in a very polite way of course, but it's a sad fact that us quiet mums normally go to the back of the que because someone else is kicking up a fuss. when you get your appointment, make sure you ask them what regular physio sessions are available on the NHS. Paul sees the physio when we go to Alder Hey, but this is more of an assessment, his regular physio is like community physio who comes to the house. this was set up originally while i was still on the maternity ward in hospital

    I live in Wirral Merseyside so I am very very lucky to have Arrow Park Hospital 5 mins away which has a seperat echildrens A&E and paediatric assesment unit, Clatterbridge 20 mins away where the childrens services are based (physio etc) and Alder Hey childrens hospital in Liverpool 30 mins away.

    Do you get DLA for Meg? if she has trouble walking some days maybe she would be entitled to the mobility part too as she is over 3 years.

    Your children's eyes sound a lot like mine. I'm not way up on the Ptosis thing as we've only just found out about it really, but as a child i used to get called 'druggy' due to my eyes often looking only half open. it is mostly just my left eye though when i'm tired, this is the same for Paul too. When i was little the dr suggested a squint but the opthalmic dr said no but didn't give any other diagnosis just said it didn't affect reading ability or anything and that was that. Only when we saw Paul's Neurologist he said strait away Ptosis. if when you go for the appointment with the eye dr they suggest it's not a squint, ask about Ptosis see what they say.

    do your kids have muscle problems too? Paul's hypermobility etc, and my own, is due to the the weak muscles really because the muscles aren't really strong enough to support the joints propery, it leaves them voulnerable just wondered whether this was the same for you.

    have you thought about contacting social services for help with getting referrals etc? someone suggested that to me, i haven't needed to but it might be worth it for you.

    keep pushing, i know it's hard but you can come on here and let off steam to me anytime. we've had a rocky road and we have been getting the referrals etc so i know you must be at the end of your teather.

    stay strong x x x
  • Thanks chriss. The gp is going to refer Megan to the physio but basically said that all she will do is give me a sheet with some excersises on it, which is pretty much what happened when she went to orthotics, she wouldnt refer her to the paediatrician as she said there was little point as there is nothing they can do for hypermobility. I did ask her about the possibility of the hypermobility being a symptom of somehting else and she said oh its unlikely. I think she is just trying to fob me off, she is a bit crap to be honest, she comes across as sympathetic but I just think she sees it as a hassle, when we were waiting for hubby mri scan results last year and we had been waiting 5 weeks I phoned her up to ask and she said if it was bad news the hospital would have told us by now, I said I wanted to hear that for myself and asked her if she could get the results and she just told me that I was being stressy over something and nothing and I had to learn to live with it!!! I mean I think I am entitled to be stressy over that as he has inoperable brain tumours which luckily are benign but there is a chance they could grow or change which is why hes monitored, also we were told twice in 6 months to prepare for the worst and that he would die so I think I am allowed stress on that front.

    I am defo going to see another gp with her, I will give it a few weeks to see if I hear anything then take her to see another dr and refuse to leave untill they refer her and Isaac.

    We dont know the reason for the hypermobility as the drs have never suggested it could be down to anything other than the fact that I have it and it has been passed down to them although there was concern that Isaac may have muscular dystrophy to start but the paediatrician has now said thats unlikely, they havent done any tests for anything and Isaacs I think is definitely down to muscle problems as although he is walking he still cant stand himself up without help which he should be doing now. Thanks for the point about social services, I never thought of asking them for help but if I get no joy from the drs I will go down that route.

    To top it all I noticed that since having the orthortic inserts in his shoes Isaac has been tripping over more and walking on his toes more, also when I take off his shoes and I have been told he has to wear them all the time (apart from when hes asleep) he has huge red marks where they have rubbed his feet. I phoned the orthotics dept who said it was possibly because with the inserts in the shoes would be too small and I should buy him some more. I got a bit arsey with them and told them that as his shoes cost me ??42 and he has only had them 4 weeks that I wasnt prepared to pay for another pair just now and they told me to keep the inserts out of his shoes untill I buy him a new pair which will be in about 4-6 weeks time and put them in then. I did point out that if his feet had grown out of his shoes that possibly the inserts would be too small by then too and she said yes probably but we cant be seeing him everytime he needs new shoes :roll:

    I guess I am going to have to learn to get a lot more pushy. x
  • Your gp sounds rubbish, i'd have been very upset at that. My sister on the other hadn would have gone mental and tore a strip off her I'm sure, she's not as quiet as me.

    at least she's given you a physio referral, just get the number for the right dept and ring in a couple of weeks saying you're checking that the referral has reached them (i did this with Occupational therapy) then the next time you ring ask how long the list is (i managed to find out how many were on the list and where i was on it) then the next time you ring say you're checking where you are on the list, then just keep pestering them. i waited just over 3 months for an appointment from occupational therapy so we could get a chair to feed paul in as he couldn't sit up, and a bath support. luckily though i was going back to work and insisted i get an appointment before then as nursery would need same equipment. they saw me before i got to the top of the list. As long as you're not rude or abusive what can they say???

    when you get the appointment, see what they say and then stress that you don't just want an assessment, you want some sort of regular sessions so they can try and get some correction in her knees and feet, they have to tell you what's available, even if there is a waiting list for that too it's worth getting on it at some point rather than having nothing at all. don't let them just discharge you, i did this too many times when i had physio myself when really i think i should have asked them to keep me on so i could check back with them

    let me know how you get on chasing them up anyway, it's horrible to have to do it and if anyone including your gp is funny with you, just be really calm and say you understand that they are stretched however you just want what is best for your children. that's what we all want.

    my sister was the one who got me to be pushy, she is a special needs assistant in the local infant school and has always said that the parents of the children she looks after are all very demanding and pushy, but its because they have to be, they have had to fight for every little thing or do without. I have freinds who have kids with more severe problems than Paul that haven't got half the equipment we've got, or have had to wait years for it. I feel bad but it won't stop me from pushing for everything we need.

    i hope you hear something soon anyway. x x x
  • Joints Hypermobility. My story of recovery.

    I am familiar with these symptoms.
    This is the connective tissue disease.
    It is called “Joints Hypermobility”.
    The joints sore, they become crunchy, soft tissue may ache…
    The ligaments are stretched.
    Cartilage tissue wears out fast.
    I published treatment regimens.
    There is information regarding alternative medicine preparations as well.
    I’ll tell what can help you!
    This is my story of recovery -

Sign In or Register to comment.

Featured Discussions