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SN children

Here are some suggested organisations that offer expert advice on special needs.

Hands Up Everyone

48 replies

lou33 · 06/04/2003 23:56

Thanks to Tech we now have a special needs area, so maybe we should all start off by saying which of us have special needs kids and what their disability/syndrome etc is?

I know I've said it so many times, but my youngest child has cerebral palsy, spastic diplegia. He was 2 at the end of February. He has great speech, good fine motor skills,and is extremely gorgeous, but cannot sit up unsupported, stand or walk. He can commando crawl, but only manages a bunny hop if he goes onto all fours before slinking back onto his tummy. His trunk has quite low muscle tone, which makes him flop forwards, and his spasticity makes it hard for him to straighten up again. Wears glasses and has a squint.Used to be allergic to wheat, dairy , soya and disposable nappies, but the wheat one seem to be conquered now. Suffers from extreme shyness in the presence of anyone not in his immediate family, and currently screams his way through an entire physio session each week unless we stop and let him play cars.

He has the funniest sense of humour, I have never heard another child laugh as much, and is obsessively devoted to his daddy. His hobby is watching Gareth Gates singing Spirit in the Sky, and trying to mimic his arm actions (I know all the moves off by heart now too!). Has recently developed a new interest in Justin Timberlake in the Cry Me a River Video, and likes to try and sing along to that too. Am slightly concerned that he loves GG a bit too much, after he recognised him in a 1 inch picture in a newspaper, saw a poster of him at Asda and refused to be moved from it, and thinks the young lad on Eastenders that plays Spencer is him too!

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Caroline5 · 10/04/2003 21:35

Sorry jimjams, didn't get back to you as have been off line for a couple of days due to incompetent internet provider!! (had withdrawal symptoms!) Do you still need the hc charts? If so, I have one for girls. According to my chart, a 6 year old girl would have microcephaly if her head circ is 48 cms or less (2% or less on the chart). Not all children with a mild degree of microcephaly show any developmental issues. However, the smaller the head the higher the likelihood of problems. Let me know if you need any more info.

Caroline5 · 10/04/2003 21:38

BTW, there is also some disagreement as to at what head circ microcephaly is officially diagnosed, so if your friend's dd is right on the 2% line, this may be why the paed is not mentioning it.

doormat · 19/04/2003 09:26

Hello girls, A bit worried here so hope someone can help me. I noticed last night that my ds2 eyes were rolling into the back of his head. Is this a type of epilepsy or something else. he did the same a couple of weeks back. He has no fit (like you see on the t.v) just the eye movements and then goes to sleep for awhile. Can anyone advise please?

P.S Told consultant concerns couple of weeks back, he said he would not be suprised if he had epilepsy.

Jimjams · 19/04/2003 10:28

doormat- I think that can be an indication of epilepsy, but not necessarily. A friends dd has different type of seizures and one type sounds quite similar to what you have described.

Can you ask the consultant for an EEG (is that what it's called?). Obviously if it is epilepsy they need to decide whether or not to give medication, so they need to decide whether it is or not.

One problem my friend has had is that she never really sees an epilepsy specialist (her dd has all sorts of problems). Maybe worth asking for a possible referral now? I would try to get more infomration or at least a decsion so you know what you are dealing with. For example if you did get an epilepsy dx then you may get access to other services (here for example there is an outreach epilepsy nurse that will visit you at home to give advise).

Don't you just hate it when things like epilepsy problems are just ignored in your SEN child, but all the stops are pulled out for your "normal" children. grrrrrr

doormat · 19/04/2003 13:31

Thanx jimjams, The consultant has asked me to keep a diary of when these "episodes" occur. it is just frightening when it happens.

Caroline5 · 19/04/2003 14:40

My dd has small seizures many evenings and it is common with her condition. I've been keeping a diary for the consultant and he wants me to get some video footage of them (will have to borrow a video camera). She had an EEG, but unless your child has a seizure during it, it probably won't show anything. They try flashing strobe lights etc during it to set one off.

As far as I can make out, epilepsy is fairly common with all "neurological" conditions and they don't always bother with any medication (our dd isn't on any).

I know it's really frightening when it happens, although we've got used to it a bit. It doesn't seem to have any adverse effect on her. Can you "make contact" with him at all while it's happening?

lou33 · 19/04/2003 14:51

I'm epileptic Doormat and have been since I was 6 months old. They sound like the sort of thing I used to do as a child, unfortunately. There are many different types of epilepsy, not all to do with falling down and thrashing around, some are very subtle and you may not even notice unless you knew what you are looking for. They sound like petit mal type of seizure if they are. You need to get a referral to a paediatric neurologist. If you are in London I know of a very good nhs one, who also does private appts. If you have an eeg done, please bear in mind that it will only record what is happening to the electrical activity in the brain at that time. So an epileptic can have a negative result from an eeg, because nothing "triggered" a reaction. It is far from conclusive. If there is anything I can help with please ask.

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doormat · 19/04/2003 14:51

Thanx caroline5 i would not be able to get in touch with the consultant as they are always busy. He had seizures as soon as he was born but they went away until just recently. They did EEG and MRI's until he was around 2 years old but found nothing.The consultant asked me about abscences and he does have them but that is normal for him. I will see G.P after easter and ask her opinion.

great idea about video camera I will have to keep it charged up.

Thanx everyone

MABS · 21/04/2003 20:47

Love this new section - thanks Mumsnet. Now back from USA I'll add my details here.

I have had 2 prems dd at 31 wks and ds at 29 weeks. My daughter is'fine' but son is now two and a half and has left hemiplegia.He does walk though he was late and he falls a lot but, he does brilliantly considering everything. He has such a sunny nature and everyone loves him.

We were told he had CP VERY bluntly when he was 4 days old and still on full ventilation.At the time I was more concerned about him breathing but, I won't deny that it was a very, very hard time for us all.

On a lighter note , feeling 'happy ' today as my application for his blue disabled badge has been accepted

lou33 · 21/04/2003 21:37

Ooh good news Mabs! We have been having a lot of fun making non badge holders move from the disabled bays they are hogging ,when we arrive with ours recently. They really get the hump about it, strange as it should be the other way around, with us getting annoyed they are misusing a place. Apparently the book that comes with the badge says it can be a £1000 fine for illegally using a disabled badge. Wish I was able to enforce it!

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eidsvold · 23/04/2003 21:16

What changes have occurred in my three weeks away.

As some of you know - my dd ( almost 9 months) was born with Down Syndrome and had AVSD - complete. We knew about the heart defect prior to brith but refused an amnio although the chance of dd having down syndrome was very high.

We have had two open heart surgeries within four days ( at 2 months old) and a few complications that saw her revisit ICU twice before finally leaving hopsital.

As to medical staff - well not going to give them the energy suffice to say - think it was medical incompetence that saw dd revisit ICU not that anyone will admit it.

Now she is just back from her first holiday - three weeks visiting family and friends in Australia - a little tanned and relaxed with a touch of jet lag no doubt thrown in. She managed to win hearts and make friends. ( Not sure how she is going to go just her and me when dad has to go back to work tomorrow and there is no one else to amuse her/spoil her)

MABS · 23/04/2003 22:02

wonderful Eidsvold - glad she enjoyed it all

lou33 · 23/04/2003 22:43

Sighs with envy at the fact Mabs and Eidsvold have both been on fabulous holidays.

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eidsvold · 24/04/2003 07:49

Lou - while it was great to be away - at times it was hard - fitting baby into others routines and having to visit lots of family and friends in a week and a half - as none of them had seen dd. However we did get a fabulous first week at the beach )

lou33 · 24/04/2003 11:17

That can be a problem when having to combine family and holiday, that's true. Still, did you have to rub it in about the beach!!!!!!

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MABS · 24/04/2003 11:31

Lots of people thought we were mad , and you lot will forgive me saying this... funny how helpful airlines and hotels become when you use the disability thing...!!

eidsvold · 24/04/2003 12:26

no Mabs you are right we had a hire car company not being very helpful when asked to supply an appriopriate car seat until I finally told them why we needed a rear facing car seat and they could not have been more helpful borrowing a seat from an office in another part of the state. I can say that Singapore Airlines were fabulous in a number of ways and for a number of reasons - we will definitely use them again!!!

Lou - if it is any consolation I now had a little madam who wants 24 hr attention ( like she had on holidays from everyone) and a tooth or two trying to come through and JET LAGGED - both of us

lou33 · 24/04/2003 12:44

Eidsvold , no - still jealous

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2under2 · 24/04/2003 14:28

not been to Mumsnet for a while, what a pleasant surprise! I have two dds, the youngest has just turned two (I know, I should change my username ) and has Down's syndrome. She was also born with a heart defect for which she had surgery at 7 weeks old. She had a rough ride and ended up being on oxygen at home for a while, but is all heart-healthy now.
She has quite recently developed hearing loss due to glue ear which we're still trying to sort out somehow (can't do grommets & hearing aids won't stay in).
Dd is an absoutely gorgeous and engaging little girl who is very capable of wrapping everybody round her little finger, and we feel so fortunate to have two wonderful children.

MABS · 24/04/2003 17:57

Beautifully written 2under2, your children are lucky to have you too
Eidsvold - I know what you mean , my kids are jet lagged and demanding at the moment and dh has just got the credit card bill...Happy Families.

lou33 · 24/04/2003 21:49

Has anyone seen this ?

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doormat · 24/04/2003 22:02

Lou33 i seen your link. Very interesting. i know in my sons school they have been raising money for a minibus for years and I think they are 2/3rds of the way there. This government is very sad!!!!!!!!!!!

Jimjams · 25/04/2003 08:22

I would like my son to go a specialist language unit. Ideally attached to a mainstream school. Nothing suitable exists. There is an underfunded, falling apart at the seams autism unit that I wouldn't let him near. The local mld schols are really sld now and he doesn't have learning difficulties anyway.

We have found a lovely primary school, but it will only work if they set up something totally individual for hom and he is given full time one to one including mealtime and break time assistants. Luckily I don't believe the school will accept any less. I think we'll both agree that he will only attend when there is sufficient help. If he isn't funded full time one to one he won't go full time. Even with this great school I'm not sure he's going to cope with a class of 30. If we get through primary school I have no idea whther he could manage secondary.

Inclusion for autistic kiddies is more often than not a joke. I'm meant to be taking part in a national campaign this year.

Oh and incidentally the attitude of that teacher in the link didn't exactly inspire me to send my son into his care!

Pretty sure I'm going to end up home edding at some stage.

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