#21
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Hello everybody,

I am Simone, and I am a mum to Christopher, 11 and Antoinette, 13. Antoinette started having problems with her mobility in December 2008, when she woke with a swollen ankle for no reason. She walked with one crutch and a limp, but managed to get to school after a week off. This was followed by a fall down stairs in early January, which badly sprained the other ankle and aggravated the original ankle! The hospital x-rayed and sent her home with two crutches (i.e. me man-handling her into a cab!) This meant that she was non weight bearing and we had to get our GP to refer her for physio. As I am sure many of you know, this takes quite some time.

She finally began physio and was improving so much that in March they were going to get her onto just one crutch. As she felt so much better, she went back to school for a whole week, but completely overdid it and began having different symptoms, i.e. legs shaking and buckling. Unbelievably, that's when they stopped her physio! They were convinced her growth spurt (5 inches in 5 months - now 5 ft 7) was unrelated to her mobility problems. She became so bad that in April I bought a second hand wheelchair to enable her to at least leave the flat. We are on the third floor with no lift, so by the time she gets downstairs, she is in agony and has no energy to even try to walk.

Eventually, I think the team became a little confused by her condition, and she was told she had Chronic Pain Syndrome. I kept pushing and in October she was invited to be an in patient for two weeks when we finally got a complete diagnosis of Benign Joint Hypermobility Syndrome with Chronic Pain Syndrome after finally meeting her consultant.

She is now waiting for out patient physio, and we have finally started getting some help. The hospital OTs were great, and visited to assess our home. She has just got her new wheelchair from the Wheelchair Service (referred by the hospital), has aids such as heightened toilet seat, heightened armchair, bath board, grab rails, etc. They also helped us by giving us a copy of the home assessment and a supporting letter from the whole team to enable us to apply for rehousing.

She is barely managing her pain, but the exercises and stretches she was given in the hospital seem to be helping now, as her legs don't shake half as much as they used to. We've also adapted as a family, which has helped. She has been given a home tutor by the Council who comes three times a week for two hours, which started in June, as doing homework from school simply didn't work as they often forgot to send it or lost what we sent back.

Sorry for such a long post, but most people haven't heard of the condition!
#22
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Thank you everybody so far,
Some very intresting stories offering a diffrent element to the site.
Im sure other members will be along shortly to add more stories.
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#23
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(12-08-2009, 09:17 PM)mimi1604 Wrote: Hello everybody,

I am Simone, and I am a mum to Christopher, 11 and Antoinette, 13. Antoinette started having problems with her mobility in December 2008, when she woke with a swollen ankle for no reason. She walked with one crutch and a limp, but managed to get to school after a week off. This was followed by a fall down stairs in early January, which badly sprained the other ankle and aggravated the original ankle! The hospital x-rayed and sent her home with two crutches (i.e. me man-handling her into a cab!) This meant that she was non weight bearing and we had to get our GP to refer her for physio. As I am sure many of you know, this takes quite some time.

She finally began physio and was improving so much that in March they were going to get her onto just one crutch. As she felt so much better, she went back to school for a whole week, but completely overdid it and began having different symptoms, i.e. legs shaking and buckling. Unbelievably, that's when they stopped her physio! They were convinced her growth spurt (5 inches in 5 months - now 5 ft 7) was unrelated to her mobility problems. She became so bad that in April I bought a second hand wheelchair to enable her to at least leave the flat. We are on the third floor with no lift, so by the time she gets downstairs, she is in agony and has no energy to even try to walk.

Eventually, I think the team became a little confused by her condition, and she was told she had Chronic Pain Syndrome. I kept pushing and in October she was invited to be an in patient for two weeks when we finally got a complete diagnosis of Benign Joint Hypermobility Syndrome with Chronic Pain Syndrome after finally meeting her consultant.

She is now waiting for out patient physio, and we have finally started getting some help. The hospital OTs were great, and visited to assess our home. She has just got her new wheelchair from the Wheelchair Service (referred by the hospital), has aids such as heightened toilet seat, heightened armchair, bath board, grab rails, etc. They also helped us by giving us a copy of the home assessment and a supporting letter from the whole team to enable us to apply for rehousing.

She is barely managing her pain, but the exercises and stretches she was given in the hospital seem to be helping now, as her legs don't shake half as much as they used to. We've also adapted as a family, which has helped. She has been given a home tutor by the Council who comes three times a week for two hours, which started in June, as doing homework from school simply didn't work as they often forgot to send it or lost what we sent back.

Sorry for such a long post, but most people haven't heard of the condition!

Hi Mimi,

I wish you all the best and tell your daughter I understand how she feels as I am seeing the specialist tomorrow myself for diagnosis ref: fibromyalgia, chronic pain syndrome, hypermobility, chronic fatigue syndrome, myofacial pain syndrome and rheumatoid arthritis. I would not wish any of the above on anyone and I am so sorry that she is suffering these conditions at such a young age.


I'm a mum of 3 young men. The middle one is 21 christmas eve and has partial trisomy 8p+8 chromosome arrangement. He has a number of learning disabilities and presents with asd behaviours. He has complex learning needs and struggles with emotions, and making himself understood even though he is now able to vocalise his needs. When he was younger he was dx to have developmental articulatory dyspraxia. We found makaton sign language a great help with this and although we rarely use it now, it comes in handy when we are anywhere that C doesn't want others to hear what he wants to say to us. C is not an independant traveller and requires a taxi to take him to and from college, which annoys him greatly even though he has a great time with the taxi driver. We do have to tell any new taxi driver that C must only go to college and home as he has the habit of getting them to go on 'wild goose chases' around all his friends houses just to say hello if they haven't been in college that day. It was far easier to be 'in control' before he was 18 - now because he is an adult, we have much less say in how things are done. He also has hypertension and had acute kidney failure at the age of 13, this ameans that his diet is/should be restricted, however trying to get that through to him is like trying to plait fog!
#24
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We share a birthday Big Grin xmas eve hehe, also, about the restricted diet......what does that consist of as my son will need a kidney transplant as he will eventually go into renal failure. Does the diet make it worse if not followed?

lucy xx
#25
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    Hi Everyone
My name is Lisa and I am mom to a 5 and a half year old little boy named Keanu. Keanu was 100% when he was born but at the age of 3 months old we were involved in a car accident. At the time the dr's only gave him a 5% chance of surviving. But he pulled through :-) Keanu suffered a traumatic brain injury (similar to shaken baby syndrome). He is now mentally and physically disabled as well as blind due to optic nerve damage. He is completely dependant on me and does nothing for himself. He cannot walk, talk, hold things, sit and has no understanding of instructions. Keanu generally is a very happy little boy. He only started to laugh in September :cmas_emoticon066: which i absolutely love!!! He suffers with seizures on a daily basis, but i honestly cant tell you what kind of seizures as there are so many different kinds on the net and i'm not sure where he fits in. It is very heartbreaking for me to know what my little boy has lost but i can't give up as he has never given up


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