Lax Muscles........ and.......

[pingu]

Hi everyone.

 

I thought since the weather was sooooo foul here today i would sit here and pretend there isnt an outside world. I thought instead that i would update you all on what life has thrown at us over the last week or so.

To start with, shauna (who you may remember has been very poorly with Blood Poisoning) is making a great recovery, it looks like her foot is mouldy but at least all the reddness has gone now. Still on the antibiotics for another week but she is been very very brave.

 

The other news of the week is that we had a hospital appointment yesterday to discuss K's Legs (pictures added to save explaining).......

 

http://i63.photobucket.com/albums/h146/mamapingu/kslegs.jpg

 

 

http://i63.photobucket.com/albums/h146/mamapingu/kslegs2.jpg

 

Anyways, the doc had a good pull and tug at him and said the problem is more with lax muscles and ligaments and not with a deformity of his bones, which is great news because we were dreading him having to have an operation. On the negitive side, apparently all of his joints are affected which we didnt realise and this gives him "arthiritis type pain" which are the cramps he describes. the leg lenght difference will be monitered over a year and a decicion will be made about that in due course.

 

The doc went on to say that K's problem is associated with the autism, and it is one of the few "physical features" of the condition. I know it has been discussed here before but i just wanted to ask (once again) how many of you/yourloved ones have this problem. The doc was bending his joints in some unimaginable ways yesterday which made me cringe, but K never batted an eyelid.

 

Ill have to cut this short now (i was going to talk about our garden looking like a lake) As there is a rather soggy looking cat staring at me with huge eyes which say FEED ME. so ill come back later.

I hope you are all well.

take care

shaz x

[madme]

Son has it (dx Aspergers, adhd, dyspraxia) As does hubbie( no dx - I suspect ASD), Daughter not sure will check.

Edited June 15, 2007 by madme

[NikkiSmith]

Both my ASD boys have what the paed called ligamentous laxity - floppy joints - their wrists and ankles are seriously flexible, which is causing my youngest to end up flat on his face every time he tries to run, as his feet just flop inwards!

 

I was told it's fairly common in autistic kids.

 

 

Nikki.

(lovely pair of legs too! did they mind posing for the camera?)

[Lynden]

Logan has hypotonia (general low muscle tone) and hypermobile joints (hips/ankles/wrists etc) He is unbelieably bendy and you hear his joints crack everytime you lift him.

 

Lynne x

[pingu]

Nikki.

(lovely pair of legs too! did they mind posing for the camera?)

 

Lol. the legs didnt mind at all - afterall they had just climbed the cupboard to raid the contents. so i got the pics whilst he was munching on his findings.

 

I didnt think there were any physical symptoms???? what else do they all have in commen that we thought were unique??? makes you think doesnt it.

 

Thanks for your replies.

shaz x

[Deedee]

LOL I know what you mean about the flexible bits my DS2 bends in ways I'm sure he's not supposed to.Pingu you might remember when I said before to get his little back checked just in case I also mentioned my boys feet and legs.We started with lifts to help with the aches and pains but now have a lightweight splint for days when he's really achy and its worked really well Might be something to question the doc about in case it/they may help?? My DS gets similar pains but we were told the more flexible he was the less pain he would get,although BECAUSE he's flexible thats why he's twisting more...

We also had a gait analysis done by the OT which then devised a physioplan for us.Have they given you any exercises to do with him?

 

Glad to see Shaunas doing better too <'>

Edited June 16, 2007 by Deedee

[Kathryn]

Hi Pingu,

 

L has hypermobile joints and is often in pain with it. Although she says she has always suffered with it, her difficulties became noticeable to us about 3 years ago and she started to walk with a noticeable limp. She had physio for a while and was given a crutch which she became highly dependent on. In recent months, I'm glad to say, there seems to have been some improvement and she's walking without support and a lot further than she has been able to. Apparently, hypermobility can improve after the teenage years as the joints tighten up into adulthood.

 

She still gets very tired and rests a lot - the physio says because her muscles are doing the work her floppy ligaments would normally be doing - ie holding her together, therefore she's in a constant state of physical tension. It's not all bad though; one of her party tricks is to bend her middle finger backwards till it touches the back of her hand - ugh!

 

There is evidence of a link with ASD although I don't think there's been any specific research into this. If you search under hypermobility and ehlers danlos syndrome on the forum you'll see that others have posted about this too - (if the topics are still here, haven't checked recently).

 

L appears to have a more extreme form of this condition than most, so please don't be alarmed by anything I've said. I gather hormonal changes can make it worse for girls anyway. I hope your son can be helped if he's in any discomfort - it's good that the doc is taking it seriously and monitoring it now.

 

K x

[charliesmomuk]

My son also has very poor muscle tone.. to the degree he wears AFOs (leg braces)and uses a wheelchair for long distances. His ankle bones almost sit on the floor if he doesn't have his splints on and his co-ordination in general sucks.

Low muscle tone is very common in children with ASD, tho prob not to my son's degree. Charlie didn't walk til he was 2 either.

 

Sometimes insoles are very useful if the feet are pronated (flat and rolling over) as a little support can really help:)

Julesx

Edited June 18, 2007 by charliesmomuk

[pingu]

Sometimes insoles are very useful if the feet are pronated (flat and rolling over) as a little support can really help:)

Julesx

 

Hi Jules.

He has had ortotic supports in his shoes for 3 years now, and as you say without them his ankles look really strange.

 

thanks for all your replies.

shaz x

[pingu]

There is evidence of a link with ASD although I don't think there's been any specific research into this. If you search under hypermobility and ehlers danlos syndrome on the forum you'll see that others have posted about this too - (if the topics are still here, haven't checked recently).

 

thanks for this info kathryn. the ehlers danlos syndrome has answered so many questions. I checked it out on google, and unbelivably in trying to work K out i have managed to diagnose myself. lol.

 

As a child i was excessively bendy, and even now i am more bendy than others, but i never connected this with K's probs at all, until i read the above named syndrome. Basically, i dont heal normally, i seem to heal the wrong way wround and also have lumpy (ball bearings) in my wrists and shins. This apparently is common in people with E.D.S.

 

Strange world eh. (so once again BLAME MUM <'>

 

shaz x

[madme]

Just to add my son has flat feet as does hubbie. Son saw podopediatrist(?) while in nursery about 2.5 and was given insoles which he hated as caused rubbing also sensory. The chap we saw was really great and told me that my son had adhd or dyspraxia or something -( based on his gait and feet) I rejected this out of hand - little did I know!? My son and hubbie can also bend fingers right back to the palm. Son has always had pains in joints dismissed by the paediatricians. Apparently though lax ligaments are good for cricket bowlers and runners- my hubbie keeps telling son!

[Bagpuss]

This thread has really intrigued me. Our youngest dd has MD. The MD type she has leads stiffening/shortening of tendons, causing falling, and eventual loss of ability to walk. The muscle also dies, and does not repair itself due to a missing protein, so eventually muscle is lost in the legs, arms, trunk etc. Yet our dd is very bendy. Her paediatrician has also described her (as in a previous members post) as having hypertonia. Apparantly she is exhibiting the exact opposite of what she "should" be. Her ankles are loose, her feet roll inwards, and she wears orthotic footwear, with insoles. Her hands are very bendy, as are her legs. Her hands remind me of a baby's, all squishy with no real definition, ditto her legs. She has a poor grip and works better with a PC. Her coordination is poor, and she is forever walking into doorways, door handles etc, which I am convinced is dyspraxia. Her physio actually commented to me that alot of my dd's physical probs were, in her opinion, due to ASD, rather than the MD. I had assumed at the time that she meant sensory difficulties, which she has many of, but now I'm wondering if she was referring to some "physical" probs linked with ASD. DD is due at peadiatrician's next week, going to have a chat with him about it, and see if he can shed any light on it.

Edited June 18, 2007 by Bagpuss

[Kathryn]

That's interesting, Bagpuss, and I hope your paed can help find some more answers next week.

 

I happen to have a friend who has a more severe form of hypermobility syndrome, and when she described her symptoms, they rang bells with me which started us down the road of investigating this. Apparently there are several different kinds - in it's extreme form it causes frequent dislocations, organ prolapse and extreme fatigue. At the milder end, ballet dancers and acrobats often have some traits of it and their flexible joints enable them to do the things they do.

 

K x

[dooday24]

that is really interesting was wondering aboout reece since he learnt to roll, he pops his wrists out even if we hold his hands too tight it can happen. hav been to ae a few times docs even asked reece if i done it too him.

my nephew had tried helping him get up and just held his hands .

sean can put them bac in but i cant its horrid because u hear them cracking. and im paranoid about me doing it wen he tries to get away from me wen we r out which has happened on a few occassions.

makes me feel awful.

love donnax

[darky]

very interesting, my daughter has hypermobile joints and low tone. She saw a physiotherapist only a couple of weeks ago because she complains of pain, and has low stamina, who said if an adult therapist saw how loose her knees were they would think all the ligaments had snapped! shes as floppy as a floppy thing!

[Bagpuss]

Well, we had appt with peadiatrician today so I asked him about this. He said he wasn't aware of any link between lax muscles and autism. I also asked his opinion on whether youngest dd could be dyspraxic, something we have been concerned about for a while. He said she could may well be, but because she has MD it would be impossible to distinguish what was caused by MD and what by dyspraxia. He also said the tests that he would of done, would not give an accurate result, again due to the MD.

[laine]

Hope you get this before you .... There is an Animal Park in Dalton -in Furness.... If you like museums.. There is one in Barrow.. It is not big but it is built on dockland. There is a slide show about Ship bulding... a small exibition of boats and ship building. Colony Candles which is on the way into Barrow You can see how the candles are made and the kids can dip their own candle. You can buy candles, and this also has a nice cafe.

Grange over sands has a small park... There is an indoor Aquarium at Lakeside A trip on old ratty is a must it is a little steam train. You can also go on Lake Windermere. In colony candles there is a board with all tourist info on. Hope this is of some help and you have recieved it before you go. Happy hols

 

Laine