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

Original poster

New to board, hello....

22 replies

AndreaCullen · 03/02/2004 07:16

our daughter is 20 months old, she suffered lack of oxygen at birth and has been having physio since then for poor muscle tone, she was diagnosed with CP at 8 months old, she has no speech or communication skills whatsoever, speech therapist puts her at a 5 month old baby level, we live in Cork, Ireland, where the services are not very good, her muscle tone has really improved and she is now walking which is super, but she has major balance problems so falls over a lot, just thought I would say hello,
Andrea

OP posts:
fio2 · 03/02/2004 07:23

hello andreaSmile and welcome to mumsnet. My dd has a global development delay, hypotonia (low muscle tone) and hypermobility, she is four. Your dd sounds like my dd did when she started walking. We still have no diagnosis but it has started to look like the birth is the most likely factor. Look forward to chatting to you adn I think you will like all the people on mumsnet they are a lovely bunchSmile

coppertop · 03/02/2004 08:08

Hi Andrea!

You'll usually find me posting or lurking somewhere around the Special Needs board. I have 2 boys. Ds1 is 3.6yrs and has a preliminary diagnosis of AS (Asperger's Syndrome) although we will hopefully find out on Friday exactly what his problems are. Ds2 (12mths) so far seems to be okay.

Welcome to Mumsnet and especially welcome to the Special Needs boards.

dinosaur · 03/02/2004 09:52

Hello Andrea!

I'm from County Donegal originally, and we still go over there quite a lot.

My DS1 is DX'd with high-functioning autism - he's aged 4.5. I also have a DS2, who is 2.5, who seems to be okay.

Hello and welcome to the board.

Thomcat · 03/02/2004 10:57

Hi Andrea and a big welcome.

My little girl was 2 a week before Christmas. She has Down syndrome and is doing really, really well. She's not walking yet but is comando creeping and is just generally pretty wonderful! The therapists put her at the level of an 18 month old which is great and apart from the not walking or standing no complaints at all.

Hope you get as much out of Mumsnet as I do. It's a great place in general but the special needs section is wonderful. It's sometimes so important to be with mothers who understand that sometimes it all feels a bit sad or best of all when your child says their first word at 3 or takes their first step at the age of 4 that there are mothers in the same position and who will realise how wonderful that feels. It's great to have others know what a huge accomplishment it was that your child blew a candle out, or pointed at the cat, or picked up a piece of sweetcorn between finger and thumb. These are HUGE things to us and it's grat to have somewhere to boast about them. It's great to sound off and come on here and say 'I'm having a shit day', the support you receive not just in SN but in general is invaluable.

Welcome and enjoy.

fairydust · 03/02/2004 11:10

Hi Andrea.

I to have a dd with CP - she is 22months old and is crawling and standing with furniture.

We have just been refered to a speech and development therapist as dd is only doing what an 16month can do - but she is still wonderful.

With out mumsnet i don't think i could have got through these last couple of months - there's always someone here for the good and the bad times.

And it gives me great pleasure when i can help someone even if it's just to offer support.

We mostly meet in the bar under the chat section at night - it'd be great to see you.

Love Fairydust.

Blu · 03/02/2004 11:10

Andrea, Hello, you should go straight in on the 'PROUD' thread for your daughters walking! Congratulations.
I am Mum to DS 2.5 who has some mobility difficulties, but is doing just fine for now....MN Health warning: bet you get addicted!
XXBlu

lou33 · 03/02/2004 14:44

Welcome to mumsnet Andrea. My youngest is 3 next week. He has cp, spastic diplegia, not walking or standing yet, but crawling. I have 3 others with hypermobility problems too.

lou33 · 03/02/2004 14:44

Sorry I meant in the next few weeks, not next week. I do know when he was born honest!

Original poster
AndreaCullen · 03/02/2004 15:19

Thanks so much everyone for all the replies!!!
sometimes it can feel so lonely, even in a crowded room, if you know what I mean!!
I wouldn't change things for the world
we love our DD very very much!!!!
wish I could take some of the pain away for her though
as I am sure everyone else feels that way too!!!
its been a very long road to get to here and there are many more roads to go
its great to be able to post here!!!
thanks again
Andrea

OP posts:
eidsvold · 03/02/2004 18:45

Oh i posted quickly earlier at school and it did not post - oh well - Hiya and welcome.

I have dd ( 18 months old) Down's syndrome and heart condition. Very cheeky but adored by all who meet her ( can be embarrassing.)

MABS · 03/02/2004 18:46

Hi Andre, just saw this so will introduce myself.

Have 3 yr old ds with mild left hemiplegic cp, he was born at 28 wks but damage had been done to his brain earlier in preg when i had massive bleed. We were advised he'd prob never walk but at just over 2 yrs old he did it! He was in dafo splints for a while and is now in piedro boots. I'm sooo verrry proud of him and 99% of the time i'm positive, but sometimes i do get upset and think - why him? Welcome to you.

mrsforgetful · 03/02/2004 19:39

Hi Andrea- You'll find mumsnetters very supportive- there'll always be someone here who has 'walked your walk already' and will be able to encourage and advise you-I have 3 sons....1 is Asperger's and another i believe has it too...the youngest is hopefully untouched by autism...i don't have experience of CP but am learning by reading posts like yours.XXX

fio2 · 03/02/2004 19:47

andrea mrsf is sooo sweet btwSmile.....and funny

Caroline5 · 03/02/2004 21:51

Hi Andrea, welcome to Mumsnet! I've got 2 daughters, dd1 is 5 on Sunday, dd2 is 2yr 8mth and has developmental delay in all areas, no diagnosis. Great news on your dd's walking!

Original poster
AndreaCullen · 04/02/2004 19:19

Just had neurological assesmnet so she is to go into to hospital and knocked out for MRI scan and CT scan, has anyone else had these done, any tips or hints??
greatfully appreciated!!
thanks
Andrea

OP posts:
fio2 · 04/02/2004 21:19

andrea my dd has had a ct scan and they just sedate them before. It is just a drink and then they let them play until it starts taking affect. Then you all go down to x-ray where they lay your little girl on a bed -type thing whilst the scaning machine goes over them. It doesnt hurt them at all, but obviously is worrying for you because you would rather it wasnt being done.

Hope this helps and let us know how you get onSmile

Davros · 04/02/2004 22:24

Hi Andrea, welcome! I saw you on another board and was going to suggest you come over here. Pleased to hear about her progress with mobility. One tip about her being sedated, get them to do any blood tests if she needs any while she out. My son could have done with a haircut too when he was out!!! Hope to hear more from you and hope you find MN useful. I too am learning a lot about CP and DS amongst other things from the other mums here.

lou33 · 04/02/2004 22:45

Andrea, ds2 had an mri at aged 18m. I don't know what age fio's was when she had hers, but at the hospital where ours was done, they gave a ga to children under 2 instead of a sedation. So we carried him to the mri suite, they gave him the gas, then we had to wait outside. I wanted to be with him, but they said there was no point as he was unconscious. He recovered from it very quickly, and all the staff were really lovely with him (surprising when the rest of the hospital was so atrocious!).

I would suggest finding out if it is a sedation or a ga, as eating and drinking rules may be different. Good luck with it.

Original poster
AndreaCullen · 05/02/2004 07:05

Thanks a million!!!
They are going to knock her out for both scans
Great tip about getting the bloods while she is asleep!!!!
hope everyone and their little angels are well
Andrea

OP posts:
fio2 · 05/02/2004 07:40

my dd was 20 months when she had hers but they used sedation because she was generally placid anyway and didnt think it would be necessary to give her ga. Then again I think different hospitals have different ways of doing things. But boy did she fight the sedation till the bitter end!! I thought we were going to be there all daySmile

Caroline5 · 07/02/2004 18:24

Same here, dd2 was about 18 months and had to have 2 or 3 lots of sedative before it worked. I spent about 2 hours pacing the hospital corridors with dd in her buggy before she finally went off. The mri scanner is very noisy so they really do need to be out for the count.

fairydust · 08/02/2004 15:52

DD was put to sleep at 18months for MRI scan - and it really wasn't as bad as i was expecting she woke up and starting bouncing around as if nothing had happened

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