[nathood]

Hi.
Its nat from australia - haven't posted in a while, been a little bit busy. I jst wanted to let you know that we had appt with special needs Psychologist last week and he was able to enlighten us a bit. The behaviours that many of our children have are very similar to those found on the Austism spectrum, and he felt that if we needed another diagnosis, he felt sure that Alicia would rate at the lower end of the spectrum. His first suggestion was to be seen by a Sensory Procesing Specislist which can help/explain behaviour issues and I am reading the book Out of Sync Child which he has recommended. For the first time I feel like we are realy getting positive help with her behaviour and that things will change. Although, we may still be looking at putting her on behaviour medication to see how it goes. I'll keep you updated on how we go.

Cheers Nat

[raznev]

nathood, on Feb 6 2010, 11:29 AM, said:

Hi.
Its nat from australia - haven't posted in a while, been a little bit busy. I jst wanted to let you know that we had appt with special needs Psychologist last week and he was able to enlighten us a bit. The behaviours that many of our children have are very similar to those found on the Austism spectrum, and he felt that if we needed another diagnosis, he felt sure that Alicia would rate at the lower end of the spectrum. His first suggestion was to be seen by a Sensory Procesing Specislist which can help/explain behaviour issues and I am reading the book Out of Sync Child which he has recommended. For the first time I feel like we are realy getting positive help with her behaviour and that things will change. Although, we may still be looking at putting her on behaviour medication to see how it goes. I'll keep you updated on how we go.

Cheers Nat

Hi Nat

Thank you very much for posting that, i have a 6 yr. old boy with very mild left hemiplegia. Its actually so mild physically that he uses both arms and legs as normal now! Although he is still a little weaker on his left side but it is not apparent to anyone!! He too also has problems with behaviour and we have been given a sensory processing questionnaire by hi OT, once filled in she will tally it up and phone us with the results. I have always thought that Callum displays some very autistic traits which usually worsen when he has had a bad day. He is not classically autistic but more along the lines of aspergers! It wonder if you could enlighten me and explain how and what behaviours your daughter displays as i am constantly told " but my child does that so he can't have anything wrong with him" I am well aware that some of his behaviour is obviously normal 6 yr. old behaviours but i also know that this is not normal. You obviously feel that your daughters behaviour is bad enough she would benefit from medication, we have thought about it but are not sure.
It would just be nice to hear what other hemi children do and what their behaviour is like! Sorry if am am being too personal and it you would rather not say then thats fine i completely understand but if Hope to hear from you soon.

Rachel

This post has been edited by trevor: 06 February 2010 - 02:07 PM
Reason for edit: removed email address

[kelly]

Hi

Rachel you asked a couple of questions to Nat, that I too was asking a few years ago prior to a diagnosis. Olivia is a twin to Lucy they are aged 9years. I was at my wits end with Olivia although she has very mild CP she does have severe congenitial heart disease and I could not associate her behaviour problems to the CP. I had put up with her behaviour for such a long time untill one morning I was trying to get them ready for school and get my self to a 9am meeting. I laid out her uniform as normal and she was very good at getting ready with assistance. I left the room to answer the telephone when all of a sudden there was this terrible scream, her temper tantrum was the worst I have ever seen, and it took nearly 40 min to discover what the issue was. I had given her the wrong tights, the ones I had given her she associated the texture of them with a Friday and that particular day was wednesday. I was not aware that for some strange reason she always seemed to wear these particular tights on a Friday and they were associated with that day as her dad came home on a Friday (he worked away in the Army). This really was the final straw for me, I felt I had coped well up to that day. We had a heart appt on the monday and I mentioned to the cardiologist that I needed to see the neuro dr again as her behaviour was getting out of hand and that I needed guidance points. Well you could of hit me down with a feather, he said this was to be expected as she had left side hemi. Admist all the hospital appts, someone forgot to tell us, and I thought she was autistic or had ADHD, to the extent that I asked the school edn dept to test her. We now put pointers in place, w have a good idea what sparks off the behaviour. A change in schedule is a big no no, and if it has to happen we discuss it straight away, write it down on her calander or a sign on her door. If dad could not come home on a Friday, I would have to discuss it every day with her prior to Friday arriving, Friday was still not great, but it helped reminding her that its on her calander etc. What its made us realise is we cant make her promises and not carry them through, so if you cant keep to your promise dont promise it, as we will have ###### to deal with. Its just really realising your childs boundries and what they can accept, but I do think it gets a little easier as they get older. He school teacher sets out a weekly diary for her so she knows what to expect each day, these little things really do help, it allows them to have some control over what ever it is that makes them spark. Hope this helps. Kelly

[Marina]

Hi

My daughter Hannah has mild R Hemi, mainly affecting her leg only, although she can use both hands, she stuggles a bit with writing as fast as the other kids in her class.
Hannah is 13 now and has just started High School.
I had never really thought much about her behaviour when she was younger, mainly putting it down to the " Frustration " that she must feel not being able to keep up with her younger sister or peers. My mum did say to me at one point that she just needs " social stories" .( My mum is a primary teacher). I did this for years.... talking through different situations and how to deal with them!! I thought things were going along nicely! We had moved around a bit with the RAF. Now in NZ. So having to deal with change was managable!

High School seems to have been the "crunch".... Its as if her whole world has been turned upside down, and I am finding it hard to understand! One minute she says its fab and the next day its all change again and she hates HS.
To break down what her behaviour is I would say.. When tierd she gets over emotional. Socially she has friends, but I wouldnt say they were" Real Best Friends". Hannah never asks for them for sleepovers, to come round, she never thinks to call them for a chat. Its as if she is waiting for them to do it first. Its me that encourages her to contact her friends. I notice the differece as I have an 11yr old who is very social.
I suppose everyone is different and I dont expect her to be like her sister, but some of these things are Usual everyday things. I can empasise with the " not adapting to change" thing mentioned earlier. when younger I had to prepare Hannah for any change and it was mainly silly things that upset her the most. almost like she was extremely fussy!! I think she is finding HS very different, in ways like going to different classes, different teachers, new children to meet. Hopefully it will get better , It may be her age now 13 and having to deal with all the usual problems a 13yr old has to as well as her own difficulties. There is so much more I want to talk about but haveto go now.
Bye for now, Marina

[nathood]

raznev, on 06 February 2010 - 01:46 PM, said:

Hi Nat

Thank you very much for posting that, i have a 6 yr. old boy with very mild left hemiplegia. Its actually so mild physically that he uses both arms and legs as normal now! Although he is still a little weaker on his left side but it is not apparent to anyone!! He too also has problems with behaviour and we have been given a sensory processing questionnaire by hi OT, once filled in she will tally it up and phone us with the results. I have always thought that Callum displays some very autistic traits which usually worsen when he has had a bad day. He is not classically autistic but more along the lines of aspergers! It wonder if you could enlighten me and explain how and what behaviours your daughter displays as i am constantly told " but my child does that so he can't have anything wrong with him" I am well aware that some of his behaviour is obviously normal 6 yr. old behaviours but i also know that this is not normal. You obviously feel that your daughters behaviour is bad enough she would benefit from medication, we have thought about it but are not sure.
It would just be nice to hear what other hemi children do and what their behaviour is like! Sorry if am am being too personal and it you would rather not say then thats fine i completely understand but if Hope to hear from you soon.

Rachel

Hi rachel,

Sorry its taken me so long to get back to you. Alicia had an operation on her leg to correct her foot so I've been fairly busy with that. In regards to her behaviour she has a lot of tantrums where she screams, yells, throws, hits kicks. She is always screamiong or yelling about something. She is very moody and demanding. She is obsessive about alot of things, and certain thinhgs ahve to be done a certain way or she loses it, plus she has oppositonal behaviour most of the time - ie non-compliant with everything and the only way we can get her to do most things is with bribery or rewards. She is also hyperactive and swears like a trooper. Hope this helps.

Cheers Nat

[Elli]

Hi
I found this thread very interesting as my nearly 6 year old has a very mild left sided hemi and I think that she has a bunch of problems connected to this. Kelly's comment was especially interesting. I had heard that right sided hemi often causes intellectual impirment but I have been unable to find information about the common cognitive and behavioural effects of left sided hemi and as my daughter's motor and growth impaiment is mild I felt that the attitude seems to be that if the motor impairment is mild then there can't be any other effects - however, it is the other effects that are more of a problem. My daughter's sensory perception appears to be impaired - some sensory hypersensitivity (hairbrushing and washing - glad she can wash her own hair with minimal help now) and failure to recognise other sensations - including difficulty with bladder control and recogising if her bladder is full or properly emptied (to the point of having urine retention and stretching her bladder). She has difficulty with number sequencing, days of the week and remembering what she did yesterday. She is a slow reader and mishears words (she also has/had glue ear which didn't help) and she has difficulty concentrating when there is background noise. Her reading comprehension is good for a few pages but she loses the thread as she tires and struggles to decode. Her general processing seems a little slow and she has a mild degree of hyperactivity. She is very well behaved at school but hates medical appointments as she hates the noise, being talked about and being touched. She tends to hold it together at school but often "loses the plot" when she gets home. At home she loves her cuddles and likes to hug her friends at school. She works vey hard but is often exhausted and the more tired she is the more stroppy and emotional she becomes. She is very sociable and is more than happy in 1 to 1 situations sometimes struggles to process all the incoming information in a group.Everything I read says that damage to the left side of the brain causes these problems, not the right, but this is not the case with our daughter.
What problems are common with left sided hemi and are there any others out there who have similar problems with a very mild left sided hemi? How do we get help? Ed psych is no good to us as our daughter is not yet behind academically so school will not provide support with our daughter's care plan. Will the NHS do anything to help as so far they only seem to focus on the motor impairment and don't seem to take the other stuff seriously as the motor impairment is mild?
After a negative spine scan (owing to the hemi and urine retention) our GP advised our old health visitor behind our back she felt he problem was autism (without physically examining her atall and ignoring the fact our health visitor had repeatedly referred her asymmetrical gait to the GP's when she began crawling and walking - in the end it was a physio who confirmed the hemiplegia). Having firmly ruled out autism with a speech and language assessment we now realise that we would almost be better off with a diagnosis of ASD as there are services for ASD in our area. There is no sensory integration service in our area and we don't know how to get a full psych evaluation without going through the autism route - plus the impaired sensation falls somewhere between the psych and the strictly neurological. Where do we go from here to get diagnosis and support for these problems? We have decided to go for a second brain mri to try and confirm the hemiplegia but are worried that as the problem is mild and the injury is very old it may not show on the mri - thus making our position worse. We are sure our daughter's problems are connected to her hemiplegia but don't know where to start. Comments welcome

Many thanks

Marina, on 18 February 2010 - 08:11 PM, said:

Hi

My daughter Hannah has mild R Hemi, mainly affecting her leg only, although she can use both hands, she stuggles a bit with writing as fast as the other kids in her class.
Hannah is 13 now and has just started High School.
I had never really thought much about her behaviour when she was younger, mainly putting it down to the " Frustration " that she must feel not being able to keep up with her younger sister or peers. My mum did say to me at one point that she just needs " social stories" .( My mum is a primary teacher). I did this for years.... talking through different situations and how to deal with them!! I thought things were going along nicely! We had moved around a bit with the RAF. Now in NZ. So having to deal with change was managable!

High School seems to have been the "crunch".... Its as if her whole world has been turned upside down, and I am finding it hard to understand! One minute she says its fab and the next day its all change again and she hates HS.
To break down what her behaviour is I would say.. When tierd she gets over emotional. Socially she has friends, but I wouldnt say they were" Real Best Friends". Hannah never asks for them for sleepovers, to come round, she never thinks to call them for a chat. Its as if she is waiting for them to do it first. Its me that encourages her to contact her friends. I notice the differece as I have an 11yr old who is very social.
I suppose everyone is different and I dont expect her to be like her sister, but some of these things are Usual everyday things. I can empasise with the " not adapting to change" thing mentioned earlier. when younger I had to prepare Hannah for any change and it was mainly silly things that upset her the most. almost like she was extremely fussy!! I think she is finding HS very different, in ways like going to different classes, different teachers, new children to meet. Hopefully it will get better , It may be her age now 13 and having to deal with all the usual problems a 13yr old has to as well as her own difficulties. There is so much more I want to talk about but haveto go now.
Bye for now, Marina

[pgd]

Elli posted (in part): Hi I found this thread very interesting as my nearly 6 year old has a very mild left sided hemi and I think that she has a bunch of problems connected to this... - Elli - I was born with invisible/almost invisible left side hemiparesis (weakness, not paralysis). Even today, when trying to play the piano using both hands, there is a noticeable difference for me in using my left hand (slightly out-of-sync) vs my right hand (in-sync). Also, a piano teacher years ago pointed out a slight glitch when I cross the midline of my body while trying to play the piano (~ corpus callosum/maybe a very small part of the cerebellum also). There are so many parts to your question. Here is a cluster of ideas which may help understand small parts of what may/may not be going on. Mildest type of ADHD Inattentive, central auditory processing disorder (CAPD), mild dyspraxia. - http://en.wikipedia...._brain_function - It's all neurological. In my case, for some reason, the old medicine - coffee - caffeine - (a weak stimulant - alerting agent) works a little for me to temporarily reduce distractibility a little and temporarily increase attention span a little (not a cure). Just because caffeine works a little for me to temporarily pay attention a little easier does not mean it works for everyone. - http://www.rsna.org/...2005/Coffee.cfm - Very slowly over time - many months - often years - symptoms can sort themselves out/be slightly clarified a little. Some symptoms may not ever go away such as sequencing challenges/challenges with sustained attention/subtle memory glitches. I believe it is good to allow children to experience lots of different activities. Best wishes. - pgd