Any ideas? sorry long post!

[Annea]

Hi Everyone,

 

I'm not looking for online diagnosis, more some opinions about whether anyone has experienced what my daughter is suffering.

 

I have 4 children 3of whom are girls, my eldest daughter was diagnosed with A/S 18 months ago.

My middle daughter is fine apart from impending PMT.

My son aged 5 seems fine.

 

My youngest daughter is 10, and she has always been quite aloof.... but compared to my daughter with Aspergers has always seemed not quite right but not too much to worry about.

 

However about 12 months ago, I noticed my daughter had a very odd standing posture, and when I laid her flat things didn't seem quite right. I took her to the GP who said he was very worried and that she did appear to have certain problems with flexibility in her legs and hips.

 

My daughter saw an orthopaedic surgeon who suggested she had missed cerebral palsy and asked a paed to confirm this. The paediarician saw her and said she did have a few 'odd' neurological symptoms but he was sure it wasn't cerebral palsy. Becuase of the neuro symptoms though he did a brain scan. The scan was negative so he discharged her into the care of the physios.

 

Now when she was seen by the physios they said she has very poor mobility in her pelvis and had very tight tendons in the backs of her legs so she was plastered to stretch them.

The physio said she may have to be plastered again if she had a growth spurt.

 

However she has retightened up at intervals and has been plastered 3 times now. Yesterday the physio came to the house to do her exercises and commented that once again she had really tightened up and said that in only 6 weeks with no evidence of a growth spurt, this was a little worrying. She thinks that my daughter should be reassessed by the paediatrician for further testing.

 

Now my daughter also has several other symptoms that I think are worth noting but on their own don't seem to give anyone else any alarm these are:

She is 10 but doesn't know the months of the year, she can't tell the time (only o'clocks and half pasts), she only just manges the days of the week.

 

Her reading is above average! But her spelling is about 2 yrs less than her age.

She has odd moods, when laughing she is often quite over the top and very loud (not quite knowing when to stop) she also dances and flaps when excited.

 

She also has episodes of 'not caring' I mean she does lot's of naughty things like snip the curtains with scissors, stir her fish tank, and when told off she just say's "sooorrreeee" in this exagerated voice, but when I settle her and question her, she really doesn't seem to care and doesn't seem to know why she did it, although she knows it was wrong.

 

She also still wees the bed on occasion and also often dribbles in her knicks in the daytime, often without realizing. I am now aware that she often is very whiffy but she doesn't seem to notice or care. Her concentration span at times <not always> is zero and I have now resorted to giving her one instruction at a time, such as "go brush your teeth" becuase if I tell her to go to the toilet, brush teeth and wash, I will just find her playing as she just forgets what I have asked her to do.

 

I am now getting really concerned about her, the school will not refer her to ed psych because they have other children who they feel are higher priority. The paed discharged her once already. And I am just feeling Oh here we go again!!!

 

Has anyone else experienced the above symptoms together, or am I just seeing something that isn't there?

 

grateful for all comments.

 

Anne

Edited April 6, 2007 by Annea

[bid]

Can't offer any real advice, but I think you are right to be concerned and to pursue a thorough investigation of your daughter's difficulties.

 

Bid <'>

[witsend]

Hi Annea, certainly don't have a starightforward answer for you at all but I do think there's enough stuff there for you to be rightly concerned. i get the impression just from what you've posted that there are two probably seperate things going on first the physical stuff and secondly the 'behaviour' type stuff which need not be related at all.

I thought a lot of what you've said about the behaviour side of things is recognisable to me as symptomatic of AS, does your daughter with dx display similar traits? Maybe because her AS is more obvious you've not noticed (not right wording really) or downplayed your other daughters symptoms? This only comes into my mind because my yougest son is on verge of ADHD dx and to be honest I've never been as concerned about his behaviour as much as my eldests (dx AS) , partly because it's not so obvious in some ways and I think partly because I have got used to my kids not being 'normal' 'neurotypical' whatever so I just sort of think they are normal now if you know what I mean.

What do your freinds relatives say about your daughters behaviour etc, do they find it odd?

It's all a bit baffling but I do think you should pursue the relevant people for answers second opinions as they do seem to be missing something somewhere and they sure won't come to you.

Good luck, Take care

Luv Witsend.

[Annea]

Hi Annea, certainly don't have a starightforward answer for you at all but I do think there's enough stuff there for you to be rightly concerned. i get the impression just from what you've posted that there are two probably seperate things going on first the physical stuff and secondly the 'behaviour' type stuff which need not be related at all.

I thought a lot of what you've said about the behaviour side of things is recognisable to me as symptomatic of AS, does your daughter with dx display similar traits? Hi Witsend - No my daughter with dx AS is very very different from my youngest, my eldest is very anxious, very tense and neurotic, can't tolerate noise or being touched, This daughter is very loud, loves noise.. has a real love of white knuckle rides etc... (In fact we did wonder if this is because a lot of time she is in a buuble emotionally - she needs big thrills to get an effect)Maybe because her AS is more obvious you've not noticed (not right wording really) or downplayed your other daughters symptoms? This does make sense as my eldest daughter suffers terrible meltdowns and the whole house is ruled by how she is.This only comes into my mind because my yougest son is on verge of ADHD dx and to be honest I've never been as concerned about his behaviour as much as my eldests (dx AS) , partly because it's not so obvious in some ways and I think partly because I have got used to my kids not being 'normal' 'neurotypical' whatever so I just sort of think they are normal now if you know what I mean.

What do your freinds relatives say about your daughters behaviour etc, do they find it odd? We don't have any family close by, but my husband and her dad <we are divorced> shares concern. Her teacher also sees some odd behaviour but constantly compares it to children with major learning difficulties so she say's things like " she's not as bad as some of the children in school"It's all a bit baffling but I do think you should pursue the relevant people for answers second opinions as they do seem to be missing something somewhere and they sure won't come to you.

 

Maybe i Should take her to the doctor who privately diagnosed my eldest, at least I would have some answers then![/color]

 

Good luck, Take care

Luv Witsend.

 

 

I forgot, she is also very clumsy and her spacial awareness is not good... she can't walk in a straight line, and constsntly walks into things or trips up when out and about.

 

Anne

Edited April 6, 2007 by Annea

[pingu]

Hi Annea

 

just a few things stuck out of your 1st posting. Have you looked into whether your daughter could have dyspraxia? http://www.dyspraxiafoundation.org.uk/serv...ad_symptoms.php

 

Also we are going through all this worry with hips and legs at the moment too, although our son is only 8. intrestingly though he does dribble his pants all the time, and has to wee every 15 mins otherwise he wets. this has been passed offf as a habit, but im not too sure.

 

Sorry i cant be more help.

 

shaz

[hobbityhole]

Hi there, I can't offer advice but it sounds like you are right to worry. Don't let the medical profession (strange choice of word 'profession') fob you off, if need be start with your GP again - I know it's frustrating but the only way I got listened to in the end about my son was to keep a list of concerns or behaviours or to keep a diary and then when I presented them to the GP, they referred me straight on to the paediatrician. Have her school got any concerns? Always worth asking as I discovered that schools aren't often allowed to approach parents directly if they think there are any worries - it was only me breaking down in front of one of son's pre school teachers that made them say well, yes we've known since the day he walked in something was wrong! I was so relieved and glad of their back up and support and I think without their help we would've still been tearing our hair out. From my own personal experience I know that doctors are loath/can't sort out bone/spine problems...

 

Chin up! Things have to get better....

[Annea]

Thank you to those who have answered me.

 

My husband and I read the dyspraxia site, and there is an awful lot of stuff that 'fits'. Certain things made me smile, especially the unique swimming style (she swims in circles, and often flips over whilst swimming)

 

I am going to take advice and get together all the symptoms, and a diary. I'll go back to my GP and just refuse to be fobbed off.

 

Thanks again

 

Oh and "Happy Easter"

 

Anne