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Original poster

I am not paranoid, possible diagnogis!!!

33 replies

misdee · 09/11/2005 10:28

Just got in from physio with dd2. she has hypertonia and low muscle tone. hyperflexable.

am confused with all the correct terms, but i am not paranoid!! after 18months of paed appointments and gp, and everyone saying she is fine, i am just releived we are getting somewhere.

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Original poster
misdee · 09/11/2005 10:35

now gotta add loads of physio to our day. but also that i am not paranoid lol.

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coppertop · 09/11/2005 10:36

At last! Someone's finally listened to your concerns. No wonder you are feeling so relieved.

piffle · 09/11/2005 10:38

misdee your dd is sounding an awful lot like mine!

piffle · 09/11/2005 10:38

I just posted on your other thread too, glad you've got some sort of answer and something to work on.
Swimming awesome for hypotonia if you can mangae it and also trampolining....

sparklymieow · 09/11/2005 10:40

Misdee is at mine, what she didn't realise, is that although my kids have cerebral palsy, they also have hypertonia and are hyperflexible. Its genitic.

Davros · 09/11/2005 10:56

Well Misdee, you are NOT paranoid, never thought you were. Interesting about Sparkly's children too. Pleased you're getting somewhere even though its added work.

butty · 09/11/2005 11:21

Hi Misdee,
Glad you got a DX. It looks like a fair few have been DX'ed with Hypotonia.
Jenk1's little one has just been DX'ed.
My dylan has Hypotonia from the lower truncal down.
I am a firm believer that he will be a contortionist when he grows up!!!!!!!
Butty.xxx

Original poster
misdee · 09/11/2005 11:26

just phoned for mobility forms.

maybe one day she will walk without yanking my arm out of joint when she falls.

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Original poster
misdee · 09/11/2005 11:29

its hypotonia not hypertonia. she has increased movements and is floppy.

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butty · 09/11/2005 11:37

Misdee,
I know how you feel about the pulling arm out of sockets!!!!!!!
Dylan can't walk on his own yet although he does try when holding my hand, and may i say, that he has a good little dancing twirl coming on!!!!!!
Dylan has improved very much with physio and he also has splints to help him.
The floppiness can be hard as when he is tired his whole body just gives way at any given second.
Some of the positions he get's himself into is beyond my knowledge or capabilities!!!!
At least your peads are now starting to listen to you and get you some extra help.
It took 6 months for them to Dx hypotonia, unfortunately i am waiting for the other Dx next thursday, as until then they class him as severe GDD.
Butty.xxx

Original poster
misdee · 09/11/2005 11:47

it has taken 18months to get this far, her 1st appintment was at 8months old, she had been wlaking for 10months and just wasnt getting any better at it. have been fobbed off by paed twice, and gp a few times. wasnt expecting a physio appointment at all, but for some reason the last paed referred her dispite also disacharging her from hospital care. so was very confused by it all. but so glad appointment came through and we can now move forward a bit.

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Original poster
misdee · 09/11/2005 11:48

sorry, 1st appointment was at 18months old.

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butty · 09/11/2005 11:54

I'm glad ther listening to you eventually.
I first had concerns with dylan at 9 months when he couldn't sit up or crawl.
The HV said he was lazy!!!!!!!!
It took ages to be listened to and then i took him to the GP when he was 16 months old and he urgently referred to pead, of which we eventually sore and he confirmed straight away that he had hypotonia, he also said that he had CP, but this has since been changed to Severe GDD as stated as they know something that i dont and next week i will find out after nearly 20 months!!!!!!
I thinks its a chromasomal thing as well as his under developed frontal lobe.
PS: you should be entitled to Mobility but when filling the form, get the Physio to be the person with extra info as really goes in favour.
Hope you get some where with it.
Butty.xxx

Original poster
misdee · 09/11/2005 11:55

because she was walking at 10months they just didnt see it as a problem. i may put some pipe lagging on the doorframes tho lol.

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butty · 09/11/2005 12:06

Misdee,
Does she have problems with her walking??
Yes Obviousley!!!!!!!
Just because she can walk does not mean that she doesn't have problems with her walking in the fact of balence and loss of it etc......
Dont let them fob you off!!!
They are quite good at doing that!!!
Does she have a tendency to fall over? How frequently? Is she putting herself in danger when walking due to the loss of balence?
If yes to any of them, then be really sure to emphasise that on the forms!!!
Hope this info can be of any help.
Butty.xxx

butty · 09/11/2005 12:08

sorry, when i say loss of balence, i mean it as in the low muscle tone Hypotonia.
It is the only way i know how to describe it to others in the way that it affects dylan!!
Butty.xx

Original poster
misdee · 09/11/2005 12:13

she is always falling over. but she has taught herslef to fall safely. on holiday last year there was a small set of steps, she looked at the, then just rolled down them. some people looked in shock and thought she had hurt herself, but she was fine, just couldnt walk down the steps lol.

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butty · 09/11/2005 12:23

I know exactly what you mean!!!!!!!
Dylan is always falling over and people who don't really know him are shocked when he doesn't cry!!!!
He has a high pain thresh hold as he is used to one thing and one thing only Falling over!!!!!!!!
He to has taught himself to fall safely, but it doesn't always end up safe!!!
Emphasise that she falls over and is putting herself at harm.
Don't mention the fall over safely part as they will only use it against you!!!!!!!!
I could draw dot to dot on scars that dylan has from falling over!!!!!!!
The worse thing is that there is nothing that i can do to stop it other then to stand over him 24/7 and that is the part that i hate, oh apart from when people frown upon me coz i don't seem to look bothered when he falls.!!
It's not that i ain't bothered, its just that i'm used to it on a very daily basis.!!!
Theres only so much that i can do apart from cuddle him when really bad, as normally he picks himself up and just carries on with a smile. He is that used to it!!!!!!
Butty.xxx

Original poster
misdee · 09/11/2005 15:46

you have described my dd2 perfectly. can i ask if you qualify for mobility at all? we already get hiugh rate care due to her eczema and vomiting issues (she can vomit for britain)

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Original poster
misdee · 09/11/2005 18:19

sorry to go on and on, just trying to remember everything physio said. she asked if dd2 can sit up at the table, i said she can but not very well. she has a tendancy to fall off chairs and slouches permantly, she cannot sit up straight for long periods of times. her body awareness also not great, she tripped up over the mat they were working on today, even tho she knew it was there. she has problems with walking up/down steps as she cannot palce her foot correctly on the step each time, its an exercise which requires concentration from dd2 and she finds it very tiring. her 'controlled' movement is good, but when it comes to putting it all together, (running and jumping) she just cannot do it, when she does run she is all over the place. she can jump but stumbles, she can do things buts its very slow movements. its hard to explain.

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aloha · 09/11/2005 18:26

Misdee, my ds has low muscle tone and is extremely flexible (as well as dyspraxia) and he has driven me MAD, MAD, MAD today because he is so slow, cannot co-ordinate his movements and tires so easily. It takes so long to get upstairs, another age for him to get into the bathroom to go to the loo, another age for him to get the step stool, yet more decades pass as he works out how to pull down his trousers.... no wonder I feel about 180 today (dh has taken over!). He also falls over, can't jump properly, slumps, leans on me really, really heavily (which sometimes I find almost unbearably irritating) and we can't walk very far. It's been particularly frustrating.
Sorry this post is all about me - I was about to go off POP! at any moment today.
I sympathise with you!!

Original poster
misdee · 09/11/2005 18:32

oh dear aloha, the leaning on me thing is what gets me most days. i know its not her fault, but i feel like yelling i am not a post!!

upmost sympathies.

and oh the slowness some days, i am so glad i live in a bungalow and mnow she is safe walking around.

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aloha · 09/11/2005 18:33

I know, it's hard to explain why it is SO incredibly irritating, but it is! And I feel very mean because it's not his fault, so then I feel cross and mean. Gah. I need some wine.

Original poster
misdee · 09/11/2005 18:36

its like having an extra limb some days. go get the wine lol.

have you got a list of exercises to do with your ds? mine will be arriving by post as the physio needed to get mroe printed out.

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Original poster
misdee · 09/11/2005 18:37

dd1 is also very flexable, can do the splits, walks on her ankles(hard to explain, but its not nice to see, makes me cringe) but she doesnt have low muscle tone so doesnt have these other problems.

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