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SN children

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

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Original poster

Dd1 was dx with Turner Syndrome 18 months ago...

20 replies

largeginandtonic · 07/09/2009 10:43

I was wondering if anyone has any experience with it?

She is 9 now.

Lots of you posted on the thread when i found out about it and were very kind

I have not been dealing with it at all. I am making a concerted effort to sort this out as i know the time is coming for her to learn all there is to know about it.

I am afraid.

She is taking Growth hormone daily so far.

OP posts:

Bumblelion · 07/09/2009 11:07

Have you joined the Child Growth Foundation www.childgrowthfoundation.org/default.htm?

They are a charity that specialises in growth conditions, one of which is Turners Syndrome.

They hold a year conference (this year on 31 October in Northampton) where specialists hold seminars, etc. and you can meet other parents with the same condition.

They also produce leaflets/bookets on the conditions which you can download for free.

Original poster

largeginandtonic · 07/09/2009 11:29

Thank you Bumblelion, i have not joined but will now.

DD1 has been asking to meet others with the condition too. I have been shying away from it as i don't want her to find out about anything she does not yet know iykwim.

Am off to look

OP posts:

Bumblelion · 07/09/2009 11:31

Through the convention, I met lots of other parents whose child has the same condition and I found it very enlightening to meet up with them. We have met up on a 1-2-1 basis and my DD loved meeting another child the same as her (very tall for her age, slightly delayed although catching up fast). We have also had family days out where we have met lots of other families and we always enjoy the meetings.

Original poster

largeginandtonic · 07/09/2009 11:35

That sounds just what she needs, i am joining now.

I have not been brave enough till now.

How old is yur dd?

OP posts:

Bumblelion · 07/09/2009 11:40

My DD is now 7 and just started her new school (Juniors). She was diagnosed at nearly age 3 and I joined the CGF straight away. I went to my first convention a week after my DD was visually diagnosed (had to wait for the test results) but after meeting other children with the same condition, when I got the final result, I was not surprised in the least as she had the facial features of the other children, although as she has got older her facial features have softened.

She knows she is different and it is nice for her to meet other children the same. I hope that as she gets older she will become friends with more children who have the same condition as they will know what she is going through, how she feels, etc.

Original poster

largeginandtonic · 07/09/2009 11:44

That is what i hope for my dd Bumble. She will need to have someone who knows how she really feels later on in life.

What does your dd have?

How do you cope with it? I have been (stupidly) thinking all is well. It is not.

One of my ds's started at the juniors today The 4 year old started 'big school' on Friday. Terrifying stuff.

How was she? DD loves school and has some fantastic friends and teachers,we are so lucky.

Have to collect the 4 year old now

Thank you for answering me.

OP posts:

Bumblelion · 07/09/2009 11:53

She has Sotos Syndrome, a genetic condition that causes overgrowth and delayed development, although she does go to mainstream school, albeit having 1-2-1 help.

She is very tall for her age (although not the tallest in her class). Luckily neither her dad or I am that tall so, although she is tall to be our child, she is not overly tall compared to other children. She was late walking/talking/getting out of nappies, etc. but did get there in the end. The way I describe her is that her 'bus' (for bus read 'skill') is running a little bit late (walking, etc.) but her bus does eventually reach the end destination, just in her own good time.

She takes an adult size 4.5 shoe (her brother who is nearly 13 only takes an adult size 4) and she wears the same size clothes as him (although he is on the 'small' size).

One thing I found out from joining the CGF is that although she has Sotos syndrome, she is still unique. Some children with the same condition seem to have some problems but my DD seems to be fine. Although she definitely has the condition (diagnosed through genetics), I think she has it fairly mildly.

How do I cope with it? There is no coping to do really, Sasha is who she is and as long as she does the best she can and leads a happy life, then I will be happy and will feel successful in her upbringing - and I don't mean for that to sound as it does

Original poster

largeginandtonic · 07/09/2009 20:47

I just wiki'd Sotos Bumble. She is doing well, it sounds like she has escaped a lot of it.

dd is the same, she has no webbed neck, heart defects or permament hearing damage.

She has had terrible ear infections when she was younger and terrible UTI's too. She has a horseshoe shaped kidney and severe glue ear. The glue ear has been sorted out with just one set of gromits! We are lucky.

The kidney is monitored but the infections are non existent now thankfully.

The GH isa major issue right now, she hates it. Every night is a battle. She can doit herself now, she uses the Easy Pod.

Tonight has seen me throw in the towel though. I can't take the constant battle, i feel like i am torturing her. I amgoing to phone her consultant tomorrow

OP posts:

Metatron · 07/09/2009 20:59

A friend of a friend iyswim has turner syndrome. She is about 5' so not overly short really think she did the GH. She does have a short neck but you would have to be looking for it. She and her lovely husband have adopted two children as she could not carry a baby.

Original poster

largeginandtonic · 07/09/2009 21:06

Thanks for that Metatron, it is good to hear of people that have it and have a good life.

OP posts:

ChopsTheDuck · 08/09/2009 09:10

Hi largegin

Not seen you in aaages, can't keep up with the multiples threads. I tend to lurk around here quite a bit though.

Sorry to hear you are having a rough time. Do you do rewards with the GH? I houseshared for a while with somebody who had to give her 3yo GH. She found it also helped to give him some control over the jab was to be each time, not sure if you can do that? Then if he sat to have it done nicely all week (as opposed to chasing him around the house!) he would get a treat at the weekend. It is horrible, I used to dread it and he wasn't even my child, heart jsut goes out to them. I'm sure it will get easier as she gets older, take it one day at a time.

Original poster

largeginandtonic · 08/09/2009 09:56

Hi Chops

I lurk a bit too but cant keep up.

She has done reward charts, special days out, she does the jab entirely on her own and has a preference to left bum cheek

She just refused for the last time last night. I end up pleading and then ordering I have said i will do it while she sleeps but nope.

I give up. I feel like i am torturing her for something that may or may not be of any use. She is growing, a little.

I am so worn out with it. Bed time get's later and later.

I am frazzled atm, dh is away for 6 months on deployment. The baby and 2 year old are inmy room. I tag team all night. My resolve is gone.

I need dh back home

Just for fun i am in court on Thursday too, my ex (the twins Dad) is taking me to court for joint residency. They won't even see him atm, not since Feb when he scared the bejesus out of them being a tit. They were shocked to learn he was not such a good man after all. They have been to couselling.

I knew he was a awful but you can't tell them these things. They are only 10

Sorry that just turned in to a bit of an out pouring

OP posts:

ChopsTheDuck · 08/09/2009 11:30

Oh you have got a lot going on.

I don't really know a lot about gh, but the little boy I knew, it did do wonders for him. He'd previously stopped growing at all (some very rare disorder I can't remember), had been on gh a year when I met him, and had grown quite a bit in that year. Fingers crossed it is the same for your dd.

good luck with the court case. Surely if he hasnt been seeing them, there is no chance of it being granted?

It sounds like you could do with a really good break! {{{hugs}}}

I was wondering if there were any websites for kids with TS, and had a google, the Magic Foundation looks like it has good kids' stuff. Don't know if you've seen that but it offers penpals/internet friends and things. That might be good for dd, without too much pressure on you.
I keep meaning to do something similar for ds, but it's so easy to get tied up with everything else!

Would you believe my dts started school last week.

Original poster

largeginandtonic · 09/09/2009 07:14

Schhol surely not those mischievous toddlers!!

I am waiting to hear back from her Endcrinologist, she may have some suggestions.

I just keep thinking if i don't enforce this she will hate me in later life when she is barely 5'8. When do you start considering her wishes now. I mean she would still ask for high heels or school and chocolate for tea but i know these things are to be overridden

Blardy parenting.

Ladidadi is being very helpful, i have CAT her

OP posts:

nailpolish · 11/09/2009 08:09

hi LG&T

im just lurking as i was a bit worried about you on fb - so sorry to hear things are down. i dont really have any advice to offer, i hope, good god i HOPE that it all goes well in court, you deserve nothing less - looking in from the outside you are doing a fantastic job - i wish i lived close by, i would rush over and be an extra pair of hands/shoulder to cry on/ g&T pourer

much love to you and the children

much love to you and dd - its a struggle, i can see that

mwah

ChopsTheDuck · 11/09/2009 09:08

thinking of you today and hoping it goes well for you. xxx

misscutandstick · 11/09/2009 09:17

sending good luck too

Original poster

largeginandtonic · 11/09/2009 14:40

Thank you!

It was hellish, he was mad. He refuses to believe the boy's don't want to see him. He thinks i am making it all up.

He kept interrupting the judge it was painful. If my brother ha not been there with me i may have run

They have ordered statements from all involved, a long tiring process. I am not looking forward to it, the poor boy's will have to be interviewed.

DD has been taking her GH for the last 2 days though... not sure why. She has spoken to her Psychologist so maybe that has done something. I am not holding my breath, she is like a little whirl wind atm.

I am really hoping they get dh home to help me with all this. Not sure how long i can keep upright tbh.

NP i think you should come and stay immediately, you are not far away after all!! Oh and you should also bring your hand bag collection to make me feel better

OP posts:

ChopsTheDuck · 11/09/2009 15:53

sorry to hear it was such a horrible experience. Hopefully if they do get statements from the boys at least then they will have some input.

fingers crossed for your dp returning quickly.

oooggs · 13/09/2009 21:50

Hi LG&T

Sorry to hear this is being so difficult with DD and I hope dh gets home asap

What a mess with dts and their father (doesn't deserve to be called dad) I hope that this is resolved without too more heartache and distress to them and you.

Next time you are down please give me a shout (but my cakes won't be as good as yours )

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