Dyspraxia, poor proprioception and coordination disorder dcd

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Dyspraxia, poor proprioception and coordination disorder dcd

Postby waterlily » Fri Jul 06, 2007 2:01 pm

hi,

does anyone know if hypermobility and dyspraxia are linked?
My 10 year old has been diagnosed with dyspraxia but has a lot of joint pains and Ive made an appointement for him to see GP as I have suspicions that he is hypermobile too.
Any advice/ info glady recieved,

love Waterlily
waterlily
 

Postby nonyanomemory » Fri Jul 06, 2007 2:28 pm

Hi waterlily,

It could be worth your while reading through at your leisure the threads in this section with anything mentioning handwriting in the title as dyspraxia is discussed within these threads. Clumsiness & prociepeception (sp sorry bad spelling day :oops:) threads could also be informative.

I am also copying having a lazy day a post from mari another forum user here who wrote the following which I hope you find helpful.



Posted by Mari copied by site admin
Joined: 31 Oct 2003
Posts: 1183
Location: South Wales
Posted: Sun May 28, 2006 8:26 pm Post subject:

--------------------------------------------------------------------------------

Hi Sandy,

It's in Church Road,Whitchurch, Cardiff and the web address is
http://www.dyscovery.co.uk . There is a team of physios and OTs as well as experts like //// who specialise in a range of disorders such as Dyslexia, Dyspraxia and other Developmental Coordination Disorders (DCDs), the Autistic Spectrum, Add and so on. They also now specialise in HMS/HEDS as it transpired some time ago that alot of children referred to them as being possibly dyspraxic were in fact bendy rather than floppy. /////did a study a few years ago to assess a link/misdiagnosis issue between HMS and dyspraxia.
My nephew was asessed at the clinic after being referred there by Dr Hakim. He was found to be not dyspraxic, 'just' HEDS.

Hope that helps,
Mari
_________________
Diagnosed finally 2003 HEDS/HMS.
Part-time teacher, aged 38.
Two daughters, aged 7 and 4; both hypermobile.
Sister (aged 41), niece(19),nephew(eight) diagnosed HEDS 2004.

--------------------------------------------------------------------------------------


nonyaEdited to remove doctors name
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

d/tr severe EDS 20 yr
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Postby d.ellis » Fri Jul 06, 2007 2:36 pm

Arc (Arthritis Research Campaign) has a page on JHS and in the section titled Hypermobility in children and adolescents, the articles states that dyspraxia can be associated with JHS. The article I mention can be found here: http://www.arc.org.uk/arthinfo/medpubs/6527/6527.asp. Hope that helps.
d.ellis
 

Postby jakerleen » Fri Jul 06, 2007 4:00 pm

Thanks so much for this thread, i have also asked another member for info and she was fantastic. Have had a dificult week so not been round much to thank her again.

Am now mooching through for info for Dom and on the Developmental co-ordination I pulled this site

http://www.psychnet-uk.com/dsm_iv/devel ... sorder.htm

and read the words "tying shoe-laces" ...............

Now it's lead me to think more about Cassie too, she had speech therapy as a child and was told she had Arthritis when she was younger, but she bends like no tomorrow, I think we need to go back to the GP and get some more advice.

Thanks all

Jackie xxxxxxxxxxxxxx
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just dyspraxic or hypermobile too?

Postby waterlily » Fri Jul 06, 2007 4:32 pm

Hi,

thanks to you all for the info!
My son has been referred to a psychiatrist as the Docs at the hospital could not find a physical cause. I dont feel in myself that he needs a psychiatrist and Im going to see my Gp on tuesday with my son.
He has been diagnosed with dyspraxia and anxiety already but suffers from a lot of physical pain, flat feet etc. He didnt take to solids as a baby and was not properly weaned at 1 year old. he does have swallowing problems which the peads thought was due to anxiety and referred him to psychiatrist.
I also was diagnosed (wrongly) with depression because of physical pain for years. I knew i wasnt depressed but every time I complained of pain the Gp just gave me anti depressants!
When I went to casualty the Doc asked me if I had been diagnosed with Ehlers Danos or arthritis. I have read up on ED and think I and my son may both have it.
When I mentioned this to my sons OT, she said she hadnt heard of ED and that she didnt think his poor handwrting was due to Hypermobility, and that I should mention it to my GP. Im sure my son has hypermobility as he gets a lot of neck pain and clicking and constant leg pains.
My instincts tell me to run from the psychiatrist! So I will see what mt GP
has to say.
Any advice will be very welcome!

All the best,

love Waterlily
waterlily
 

Postby kit » Fri Jul 06, 2007 5:18 pm

It's amazing how many Ehlers Danlos patients have to pass by way of the psychiatrist before they get their diagnosis. My daughter too and it was stressful. The good news is, if it's a reasonably good psychiatrist, they'll be the first to say, well, actually, this doesn't lookanything like the patients I normally see, I think this is physical.
kit
 

Postby nonyanomemory » Fri Jul 06, 2007 10:11 pm

My son is dispraxic (sorry very bad sp day today) and after many years this was diagnosed by an educational pyschologist whom we had to pay for privately after many years of misdiagnosis and labelling, he was our godsend. The difficulty with writing comes from the messages from the brain and difficulty with the fine muscles in the fingers etc. My daughter has eds and the classic poor proprioception and clumsiness associated with the condition. Her difficulty with handwriting turned out to be entirely due to her EDS and very bendy fingers. I think it is often difficult to distinguish between the two and often the name for the problem is often not as important as the quest for the parent of a child struggling with such problems to receive the recognition of their difficulties and the help they deserve particularly within the school setting. I used to work in schools with children with learning and developmental difficulties and I used to find the very reason they may be perceived as anxious were in fact a result of living and trying at school with an undiagnosed condition and following diagnosis with appropriate help and support their self esteem and experience of success within the school setting improved. For the dispraxic child life can often be confusing at school, they and those around them have little idea that difficulties with tying laces and problems with hand writing and possibly group sport activities can mean that the dispraxic child is labelled as not trying or unmotivated this is not the case. This website is dedicated to the condition and has been extrememly helpful to me dyspraxiafoundation.org.

My son albeit many years too late following diagnosis of dyspraxia is now allowed to use his laptop at school and in exams this has changed his chances of success.

Good luck and I hope you find all the links and tips from people helpful. Struggling with the system is hard, I know so well from experience and many troubled times. A strong will is needed to battle with the system. Take care nonya
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

d/tr severe EDS 20 yr
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the dreaded psychiatrist

Postby waterlily » Fri Jul 06, 2007 10:58 pm

hi,
thanks for all your help.
Aaargh the psychiatrist, I dont want to see her with my son. He gets bewildered and upset and she does my head in. I am glad to have the OTs help though.
what I dont understand is:-
1) why the school havent put anything in place to help my son with his dyspraxia
2) Why they are reluctant to involve the Ed Psych
3) Why his teacher wont accept that he has dyspraxia
4) What can I do, I hate conflict, but I am in a place of feeling like I have no power.

I wonder if my Gp will be supportive and if he will have heard about ED/ hypermobility as the OT hadnt.
I hope that my Gp will refer my son to someone who can look at him as tonight he had neck pain. He often has clicking/crunching in the neck as well as pain/clicking in knees, ankles, shoulders. His shoulder blades also stick out from his back. I dont want him to suffer like i have.
No wonder lots of suffers get referred to a psychiatrist first- the thing is anyone would be down in the dumps if they were in constant pain and no one believed them! Its not fair!
Is it that many Docs dont know about EDS and HEDS?
I have emailed an independant Ed Psych for advice and hope to get things sorted as my son goes into year 6 in September.
I really appreciate all the advice and you have been such a help!

Love Waterlily
waterlily
 

dyspraxia and chest pain

Postby waterlily » Fri Jul 06, 2007 11:14 pm

Hi I meant to add that he gets bad chest pains that have not been diagnosed even though he spent 3 weeks in an assessment unit at the hospital.
any help/ advice please!

Love Waterlily
waterlily
 

Postby jakerleen » Sat Jul 07, 2007 12:54 pm

Waterlily some schools don't like dealing with special needs hun. My daughter did work experience recently at a school and overheard them trying to send a parent whose child has Aspergers to another school because "they deal with special needs much better than we do". Now I know how bad that sounds, but sadly it's very true ......... and pretty displicable.

This thread is opening my eyes more and more, Cassie also would take solids, in fact she refused anything in her mouth at one point, she would heave if I tried to feed her, huge trouble swallowing. I talked to health visitors and ws told to "keep trying" I ended up dealing with everything myself and trying to help her on my own.

nonyanomemory the minute you mentioned anxiety of the children, a lump came in my throat, oh hun both of mine suffer with anxiety. Cass has now developed this "tough" shell to protect herself and is the type you wouldn't mess with lol, but Dom is still v. sensitive and hates going no creative writing days to school, he is really "anxious" about it, the answers all lie in his illness. He's afraid to write because his mind and hand aren't working in sync, I really feel for the kids, it's got to be a daunting task going into school and feeling so worried about things, they are just kids after all. Some schools are no help whatsoever are they :evil:

I will be glad when we see the OT on 18 July so we can talk some more to people who really know what this illness means.

thanks again everyone

Jackie xxxxxxxxxxxxxx
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Postby sarahh » Sat Jul 07, 2007 12:55 pm

Hi WaterLily I have Dyspraxia. I was diagnosed with it when I was alot younger it did take a while cause the school wouln't accept that there was a problem and they said they were watching me which they weren't. It was my mum who pushed for a diagnosis and I think I saw a psychologist who diagnosed it. You may have to get pushy with the school for extra help. Has you son got a statement to say he has dyspraxia make sure you get one of these. I never got a statement I was suppost to but I got pushed aside as some parcially sighted children came in and I never got it which made it hard at school cause they said that I didn't have a statment so no proper help and the teachers at secondary school said that they didn't have time to help me so I used to sit there and do nothing. At college they were alot better and with me having hms they gave me my own learning support assistant who was brilliant and helped alot. She used to expain things better than my tutors did, write the lesson plan down for me and carry me bag when my joints were really bad.

I would definatly ask for a refferal to a specialist maybe GOSH for the EDS/Hypermobility and also ask to get the chest pains investigated. Also to help with schoolwork you could try Omega 3 fish oils aswell

I hope this helps, let me know how you get on.

Sarah x
Last edited by sarahh on Sat Jul 07, 2007 10:49 pm, edited 1 time in total.
Hms December 99, Dormant Lupus Sept 07, Back Pain, Raynauds, RLS, Fibromyalgia June 08, EDs Aug 08, Marfanoid features Aug 08, Dyspraxia age 5
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Postby Linny » Sat Jul 07, 2007 3:05 pm

Hi,
Reading this thread was like reading parts of my own families life. My daughter has Heds and I know I have it too although not formally diagnosed, well not unless I can count Prof Grahames inspection of my hands and stating that I had it lol.
Anyway, my son has Dyspraxia and Asphraxia (? spelling), poor muscle tone in his lower legs and when confused which is quite often, has dreadful anx attacks. He too was passed around from pillar to post and didnt get any help at school which to this day bothers me as everyone failed him and I include myself in that. He was supposed to be statemented but there were more excuses than beggars belief and this went on and on and on and he simply slipped through the cracks.
I feel there is a correlation between the two although again getting the right diagnosis is whats difficult.

Linny
Linny
 

gp appointment

Postby waterlily » Mon Jul 09, 2007 12:37 am

Hi,

Thanks for all your messages.
im taking him to the Gp on tues.
Im going to talk to the SENCO at his school about when they are going to get the Ed Psych in to see him and he has an appointment at the hospital at the end of the month with his OT and psychiatrist. I dont feel that his symptoms are in the mind and I value your support.
He has just had a v good school report in all academic subjects and is a year ahead with them, but a year behind in speaking, listening and handwriting.
He has had a lot of ankle pain over the weekend and I will mention all his pains to the Gp and say that I dont think its all in the mind. After all my Gp thought i was depressed because I had pains in differnet body areas and he just seemed to think i was depressed. Makes me wonder if Drs just assume that if they dont know. I wasnt depressed but I WAS in pain!
Apparently children can have problems with handwriting due to HMS and other pain such as his chest pains could also be due to it I have read. He also has had swallowing problems which could be a cartilage problem. I think he does have other problems such as ( he has been diagnosed with dyspraxia) but Im not sure the pain is anxiety like the psychiatrist says.

Love to hear your opinions/ advice,

Love Waterlily
waterlily
 

Postby janey » Mon Jul 09, 2007 9:20 am

I found the report from the Ed Psych very useful in helping my daughter to get a statement of special needs for school. She spent a long time with Rosie who told her that she feels 'low' when she is in a lot of pain. She now has 15 hours of help when at school (secondary) which has made a real difference.
Good luck, it's not easy being on this treadmill.
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we'll get there in the end- I hope!

Postby waterlily » Mon Jul 09, 2007 10:55 am

Hi,

Thanks for your messages of support.
Im going to speak to the SENCO again. Im not going to be fobbed off by the school telling me that the ED Psych is on maternity leave as I spoke to someone from Contact A Family today and she said that they cant say that and that there will be maternity cover.
I feel like Im having to fight here.
I realise that some schools just dont like special needs kids and I think this is one. It is a Beacon schooland is proud of its "gifted" children. It gets extra funding because of its high profile and teachers from other chools visit to learn from its "example". It stinks and i dont like it. I have read the special needs policy and its very cleverly worded to skirt round the issue while not seeming like it is.
Its been really interesting to read your posts and so many of you understand exactly what its like which is a comfort.
Im really sorry to hear of all your troubles too.

Love Waterlily
waterlily
 

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