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EDS Hypermobility

1000 replies

SparkleRainbow · 13/08/2010 17:12

I thought I would start a thread to see how many of you are out there, fighting the battles I am fighting. I have EDS myself, had genetic counselling and even though mine is quite severe I was told no problems with having children. I have three dc, the eldest my ds is the only one believed to have inherited it. He was diagnosed by Prof Grahame at 19 months, and has always had pain, but it wasn't until September last year that he dislocated vertebrae in his neck C2 and C3 by turning his head to talk to me. He has been in recovery ever since. In the last 11 months he has dislocated or subluxated his neck twice, his knee cap three times, his left shoulder three time and the fingers of his left hand once. He has missed so much school, he is in pain almost constantly, he has a health plan and risk assessment to be in school, he is depressed and frightened and he doesn't know at all how serious his neck problem is. I am constantly fighting with some of the Consultants, and school, but there are also some wonderful people too. I would love to hear others stories, very selfishly to know I am not alone and neither is my precious ds.

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dolfrog · 29/08/2011 18:17

MrsVictorUbogu

Speech and Language Pathology cover a vast area of issues which can cause speech and language problems, many of which are on the cutting edge of research. APD is only one of these issues. And children can one or more of these various problems which can cause their speech related problems. Verbal Dyspraxia is better know in research terms as apraxia of speech or more specifically Childhood Apraxia of Speech
Phonology or phonological issues have tend to be related to dyslexia, and used as term to explain the combined auditory and visual processing problems which can cause the dyslexic symptom. So i was really trying to understand how phonology was being used as part of your DS's diagnosis

I am still on the same learning curve with regard to these issues, just i started back in 1998. It is still all very complicated and the professionals sometimes just make understanding the real issues worse lol.

MrsVictorUbogu · 29/08/2011 19:54

Lol, it all feels like a mine field to me!! Thanks for all these links :) I had a quick look at the symptoms of APD, and the only one that DS has is he often doesn't hear in a crowded room/noisy background. My brother is dyslexic, DD1 is probably dyslexic and so I wouldn't be surprised if DD2 and DS are too, although it would be well masked by their speech problems.

DS has been diagnosed as having the phonological disorder because he misses fronts, backs and middles of words, not all words, sometimes all at once, sometimes not. Packaging would be ba a in He swaps sounds round in a word, so dog would be god . He adds sounds into words that shouldn't be there at all, so steam train is dea dain and timber is bur row Confused . It is hard to get him to drop the extra sounds. His speech, not vocabulary, is I think like a 2 year old. It is so complicated, like learning a new language with none of the usual rules, lol! I have to decipher everything he says and translate to others, close family can get the gist of what he is saying, but strangers haven't got a clue. And, if he says something out of context, it is really hard. It really does sound as though he is slightly deaf....there is no definition to his words, but he's had a hearing test and a thorough examination by ENT, which confirmed a weakness in his tongue and lips. He can't lick his lips very well, can't control his tongue well and looks like he is 'chewing' his words.

He had the DEAP assessment done, should I ask for more assessments?

DD2 says things like additioner instead of conditioner, b sketti for spaghetti, crotted tream for clotted cream. She still has a lot of trouble sounding out words to read, as some of the sounds are alien to her.

I will mention APD to DS's SALT, and see what she thinks....we are waiting now for more therapy, hopefully more targeted to DS's problems. Do you think DS is likely to progress? I still feel like this is only the very tip of the iceberg, and there is a long way to go, but everything moves so slowly and I worry that it has been left too late for DS and he'll be stuck like this forever unable to express himself :( . He is such a bright, lovely, hard-working little boy.

dolfrog · 29/08/2011 20:24

MrsVictorUbogu

About this time last year I was trying to helping to edit the Wikipedia Speech-Language Pathology article, (not very well unfortunately) but you may find some useful information therw regarding some of these issues. And at the same time i started my PubMed Speech and Language Pathology research paper collection which you may also find interesting

SparkleRainbow · 31/08/2011 08:14

bump

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TheHumanCatapult · 31/08/2011 08:37

hi wow you ladies have been busy chatting hope all dc are doing ok and yourselves to .been manic here and am looking forward to dc going back to school so can catch up,

Very quick question how do you ladies fit physio program in with school were doing a daily program and it takes about 45 mins to do and he is tired after .My concern is on school day he already needs to eb up by 6.30 to eat , wash and get dressed to leave from 7.30 and doing after school no good he be wiped as not home till 4.30 ish

.

TheHumanCatapult · 31/08/2011 08:38

oh and should add speech problems are very common with hypermoblity/eds due to low muscle tone that often goes hand in hand with it

SparkleRainbow · 31/08/2011 14:18

Hi THC I was looking for you earlier on messager. Glad you are ok, and I know what you mean about more time when they go back next week, but I shall miss them so much, it has been lovely to be with them this summer.

Physio programme is a nightmare for us too. Ds has 30min morning and night to complete, which if he is very cooperative and not too tired we can complete in 20. I have gained a little time with the new school, more so with dd1 now joining him, so that helps us we don't have to be out until 8.15. Having said that the evening one plus the typing skills lessons by PDSS and then any homework etc is too much for him. Some days we just have to miss it, which completely trashes the point of the physio. Some days I do a reduced version, focussing one day on one area. and another area the nexct day. I am hoping, at least the plan is that the new one to one support will take some of the burden of one session, during school hours. Is there any chance the unit could pick up some of the exercises?

It is interestig to read about the speech problems. Ds was sent to a SALT when he was 4 as his speech was unclear. He is generally fine now, it wasn't a major problem, as it is for others, but his speech is still incredibly unclear when he is tired, it is like all his words to meld into each other, with consonents at the beginning and end of words being missed off. I would still always say not a major problem for ds, I just think when his body is tired, the muscles just have got no more to give, plus with ds the muscles are already working so much harder around his face and neck, to support his head......maybe.

He has grown 2 cm this month, and right on cue pain has come with a vengence, he has just asked to stop playing on the computer, lie down and have his collar on, so it must be uncomfortable Wink

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TheHumanCatapult · 31/08/2011 18:03

have not been on messenger due to holidays ( we been camping a lot Grin and then i had row with London foootpath and i lost .

Hmm be intresting them to see how we are going to mange looks like I shall be waking him at 5.30 Shock to ifit it in

auntevil · 31/08/2011 18:09

Sparkle - you know its bad when they stop playing on the computer.
Bit of an evil moment here - DS had a friend around and i asked him to pick up some toys left in the garden. 10 minutes later he had to go in for a rest. He sounded like a little old lady when he said to me that all that bending down was too much. I would have felt sorry for him until he said that i could finish it as i had many more years practise at tidying so it wouldn't hurt me as much Hmm .
I agree re the speech becoming more 'slurred' as they get tired. That's one of the warning signs that there could be trouble brewing when he mixes his sounds up.

SparkleRainbow · 31/08/2011 18:53

Grin at many more years of tidying experience auntevil.

Pain seems to have eased a bit, thank you aspen collar!

THC - what happened with the footpath?

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TheHumanCatapult · 31/08/2011 19:39

the ramp on the london bus jerked as we was going down wheelchair went one way i went the other and lol we brought chaos to Liverpool street staion parmaedics police the lot and have to say the police were fab they transorted the kids to the hopspital and stayed looking ater them till my mum got there best part of 2 hours .While i was being patched up

evil ok thats be a bad sign here no computer as tired

auntevil · 01/09/2011 08:14

OMG THC - that sounds awful. How patched up did you need to be - if it's not too personal. Pleased to hear that the services all rallied and did a good job. Also quite sneakily pleased that there could have been any chaos caused to any of those snarly commuters that regularly tut and glare and generally try to make us feel intimidated when i take the kids up town. Guess that's where the 'evil' part of me comes from Grin

SparkleRainbow · 01/09/2011 08:18

Grin at your evil side auntevil.

Oh THC, that is awful, are you all right, healing ok? You didn't hurt your back anymore did you? Did you have to stay in? so many questions......

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ariane5 · 01/09/2011 08:59

hpe you are ok now thc that must have been scary, iam glad you were well looked after by all involved though and hope you are feeling ok today.

I have found it so interesting about speech problems as ds speech is still not good (well, quite terrible really poor thing) he struggles with a lot of sounds fish=tish, sun=tun, please=mrease, grandme=bammar i could go on and on there are not many words he can pronounce and he has had so many speech therapy sessions, different therapists etc and has never progressed at all which really concerns me.his hearing is ok now (glue ear when younger) but he can hear things fine now. he has another block of speech therapy starting next week in a group with other children who have difficulty with the same sounds.He starts school next week too, he still seems too small! i think i will be in tears on his first day!

ariane5 · 01/09/2011 09:00

it was meant to be grandma not grandme!

SparkleRainbow · 01/09/2011 09:17

That is interesting my ds had an imaginary friend who he called bammar, which I always thought was a combination of Bill and Grandma his favourite grandparents...but maybe it was a series of mispronunciations which we interpreted for something else and he just adopted as an imaginary friend later. I was gutted when he was 5 and killed off his imaginary friend, he did come and say to me later "Mummy, you know that bammar isn't real don't you" with a there there, silly mummy compassionate look on his face Grin

The ages of 5 to 6 were the break through point for my ds's speech clearing up enough to make him more comprehensible. We still have the slurring of speech, and very poor pronunciation when he is tired, but the rest is near normal now, so don't panic ariane...he is very young yet. I too cried when dd1 and ds started school, particularly dd1, cos she was only just 4 and not ready for it, should have pulled her out as soon as I realsied, but ds was in hospital having dislocated his neck for the first time, and I was caring for my SIL dc, as she was unable to, so my dd1 suffered for me being pulled in so many directions. I shall never forgive myself for that.

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TheHumanCatapult · 01/09/2011 13:14

araine , would they not consider a speech unit ? it is only now he has regular theraphy he has come on speech wise and learning as he struggled with language before hand

And the school thing I bawled to rather loudly he was my baby and not helped with the GDD and he was just 4 .And hate it even now putting him in a taxi

sparkle how is ds today ?

oh we had intresting report seems ds needs a better seat for school rather than the special one with pelvic supports that he has he needs a bit more all dancy one as he is still slumping

We are of to GOSH on the 21st for yet another appointment

auntevil · 01/09/2011 17:52

THC - we were up at GOSH this week - for DS3. It makes me laugh as DS1 always says how much he likes it there and 'can we come again' - like its some kind of outing that you can do in the school holidays and maybe plan a trip for a rainy day! I don't have the heart to say that I wished none of them had to have appointments!
Don't you think it's weird that you have special names for certain hospitals/health centres/GP etc? GOSH is known as the 'Wii hospital' by my eldest 2 and the 'nice' hospital by DS3.

SparkleRainbow · 01/09/2011 18:02

UHNS Paed unit is known as "Sing a song of sixpence one" (they have a wall painting of it), The rheumatology hospital is known as the "far, far away one" (self explanatory) the clinical psyc is known as the "MacDonalds one" (they are ever hopeful) A&E hospital is....."the one I hate" (ds) and the Gps is "XXX daddy's with all the books" (I am friends with my gps wife and children, and gp obviously cos he is wonderful) Grin I wish they didn't have to know about hospitals too!

THC what kind of seat are they looking at then? I am concerned about ds curved back/slumping over as it is much worse, although is better wehn he is on the wobble cushion.

He is doing all right today thank you, reduced mobility in his neck, and some loss of sensation, but definitely better than yesterday.

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auntevil · 01/09/2011 18:39

sparkle Grin at 'the macdonalds one' !

TheHumanCatapult · 01/09/2011 19:21

hehe love the names .Ds loves addenbrook as they have fab waiting room with ninetend and has a burger king in .

Were not actually in Gosh think its Uch we are seeing them in but under Gosh iyknwim do need to check and book transport as is a early one

Ds has a tezzi breezi with pelvis supports so stop the wobble side to side but he is struggling tio stay up right so they are looking at something that has a tipped seat backwards and a pommel and a sacral pad to orce his pelvis forward .We been told it is because of his low core muscle and holding him slef upright takes so much effort he then can not use his upper body properley or his arms and becuase of progressive scolosis they are finally sitting up and listerning to us

SparkleRainbow · 02/09/2011 08:11

It will be interesting to see if that works for him. It does make sense that his muscles are having work so hard that he is not moving his upper body properly. It will be making him more tired too, so that might help. Fingers crossed they pull themselves together and get it sorted quickly.

I used to see Prof Grahame in his clinic at UCHL, where he has a specialist hypermonility clinic, that was where he saw ds when ds was 19 months ish. How I wish we could see him again.

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elliejjtiny · 02/09/2011 23:59

DS2 calls our local hospital "the hostible". When we used to go to see the neurologist that one was called "the other hostible", so imaginative lol. DS2 loves the hospital although he was confused when we visited DH's grandad and kept asking why he didn't have any toys! DS2 charms all the nurses with his winning smile and his "I like the hostible". DS1 is brutally honest, told a midwife that there weren't enough toys in the antenatal clinic waiting room and said to a nurse "I was born at home because I don't like hospitals".

TheHumanCatapult · 03/09/2011 07:53

the upper body been told is due to the hypermoblity in his pelvis shoulder wtrist and elbows .

Not proff Graham he has declined to see us as we hae dx of EDS and a query chromsome would not see us before becuase of a possible chromsome so not impressed with him .It is a proff pilkington at ucl

SparkleRainbow · 03/09/2011 08:23

I don't get that reasoning on behalf of Prof Grahame Angry Confused

Hypermobility in his shoulders and pelvis would make it very hard to sit up and maintain a stable sitting position too. Ds has it there too (well shoulders and hips rather than whole pelvis), and even without the further complications your ds has he still finds the whole sitting and standing thing difficult, so so much harder for your ds Sad

How do you like Prof Pilkington and does he/she have experience of ds'type of EDS?

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