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SN children

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

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Original poster

Cant take much more of this

30 replies

jenk1 · 16/10/2005 20:29

im feeling very sorry for myself at the moment so please forgive the ramble-i just need to get this off my chest.

As a few of you may know dd was in hospital for the best part of a week with convulsions and they have picked up on her developent delay and told us she has something wrong with her legs, they have taken countless blood tests but wont tell us what they think.

On friday we took dd back to the hospital for a scan on her kidneys, they made her lie on her chest, she has NEVER EVER lay on her front and screams if you try and make her,so she was lay on the bed screaming, im trying to tell them theres something wrong with her legs and this is making it worse but they said they needed to scan her from the back.

She wont hardly eat anything, is just drinking b/milk which involves feeding almost hourly through the night at the moment, im shattered have no energy,ds has started playing up because we havent been keeping to the "schedule" us and the psychologist devised for him (ASD).

and to top it all we got a letter from hospital saying she is to have MORE blood tests and yesterday the dreaded letter from the DLA came to say she can only have lower rate despite us asking for a reconsideration

Someone tell me to shut up and start feeling positive cos i cant see ANY light at the end of the tunnel at the moment

Right Rant over !

OP posts:

coppertop · 16/10/2005 20:44

I'm certainly not going to tell you to shut up! You've had so much going on lately that it's no wonder you're feeling so stressed out. Feel free to rant away. xx

stripey · 16/10/2005 20:45

Don't know what to say really but things will have to get better. Sounds horrible what she is having to go through. I remember ds1 had to have a blood test when he was about 3 and it was terrible. I didn't get a second one as he was OK and they didn't think they could definitely find out what was wrong with him anyway.

How old is your dd? Will she take bottles of milk. Sounds like you could do with a break do you have anyone who could help you out.

Good luck try and get a bit of rest if you can.

allhallows · 16/10/2005 20:45

No Jenk. I can't tell you to shut up in the face of such heartache. How old is your dd & what is "wrong" with her? It is the absolute worst to see your child suffer & I wish i could wave a magic wand for you & make it better.

Chocol8 · 16/10/2005 20:53

I'm so sorry you and your dd are having to go through this - i just hope they find out what is wrong quickly and she can get the help she needs immediately.

DLA - well that's another story. Can you appeal? Do you have anyone who can help you - CAB? I'm sorry i'm of no use, but am thinking of you and sending HOOOOOOJ hugs ((((((((((HUGS))))))))))

SoBlue · 16/10/2005 21:48

I think you deserve to feel sorry for yourself not sure i could cope with all that at once. You must be very emotional at the moment and probably could do with a good sleep. Can some family come over and help you? Hope things start looking up soon.

Original poster

jenk1 · 16/10/2005 22:00

We dont know whats wrong with dd, they have got her on a long course on antibiotics while they investigate, not good i know but at least its brought her temperature down from last week.

they wont tell us anything, me and dh think that they know what it is but are just making 100% sure-which is a good thing.

We think that she has very mild CP in her legs and maybe her back,as for the infection that she has-not a clue, they have also said she,s anaemic and is on iron supplements now as well as multivitamins,i cook her meals with nutramigen and she,s still being b/fed so i dont know what more i can do really.

Just to give you an idea, shes 18months and weighs less than 19 pounds
She has stayed in the same clothes size/nappies since the beginning of the year and isnt developing for her age.

I just worry myself and i know its no good but i cant help it, i know nothing about development delay-i mean is it normal for delayed developers not to put on weight?
She does eat though, she has never eaten large portions but sort of snacks all day.

Thanks for your messages of support-its really cheering me up

OP posts:

Blossomhowl · 16/10/2005 22:02

Wanted to send you and your family {{{hugs}}} and let you know I am thinking of you xxx

allhallows · 16/10/2005 22:05

not one to send virtual hugs but I think you deserve a big one! (squish!!)

QueenVictoria · 16/10/2005 22:06

Im sorry to hear you are having such a tough time jenk. I really hope they find out whats wrong soon and that its nothing serious.

Pages · 16/10/2005 22:09

So sorry you are going through all this. It sounds very similar to what we went through with DS1 and he was low in weight gain and has developmental delay, he too was ill a lot until he was about your DD's age. Hopefully they will find out what's wrong, but you know that convulsions do often come with high temparature, so it may not be anything long lasting to worry about - our DS1 has grown out of the epilepsy (or so it seems - seizure free for 2 years now, although he still has developmental delay). Will keep my fingers crossed for you.

Original poster

jenk1 · 16/10/2005 22:19

pages-was your ds referred to physio because of his delay like my dd?

Thanks for the bit about the low weight gain you have just made me feel better, ive been thinking that its something IM doing wrong as to why she,s not putting on weight.

OP posts:

KarenThirl · 17/10/2005 07:33

Thinking of you Jenk, you're having a tough time just now. Gentle hugs to dd as well.

Bethron · 17/10/2005 09:04

This reply has been deleted

Message withdrawn

dinosaur · 17/10/2005 10:24

Sorry that things are so tough jen. Thinking of you and your dd.

dinosaur · 17/10/2005 10:24

Sorry that things are so tough jen. Thinking of you and your dd.

macwoozy · 17/10/2005 11:07

Jenk1, you've really had it tough lately haven't you, I'm not surprised that you can't see light at the end of the tunnel, but it will get better. When's your dd's next hospital appointment? Could you ask then what they are testing for so then at least you could get some sort of idea. The not knowing must be terrible.

Original poster

jenk1 · 17/10/2005 11:13

actually the hospital has just phoned me to see how dd is and to ask if im coping ok, they said ring us with ANY concerns.

The nurse said i should be getting an appointment soon for physio and back to the dietician, its nice and reassuring to know that they are taking our concerns seriousley

OP posts:

maddiemosthorrid · 17/10/2005 13:29

I am glad the hospital have done that, remember to conatct them rather than just worry though!

Sorry it is all so hard at the moment.

Pages · 17/10/2005 13:33

Yes, Jenk, DS was referred to physio because of the delay. I have to say it really helped but as with all these therapies you have to do the work yourself. DS is a normal weight now, aged 3, although he is short and has always been on the lower centiles. He has always eaten normally when he has been well, but I have a friend whose child was like yours (NT by the way) and he wouldn't spoon feed anything. She had to find nutritious finger foods that he would eat, things like fish fingers and so on. I can ask her for tips if you like.

Original poster

jenk1 · 17/10/2005 18:49

thanks pages that would be really helpful

OP posts:

JakBat · 17/10/2005 19:44

Oh Jenk, what a nightmare. What a tough time you are having at the moment. Wanted to send my love. You're under so much pressure. Deffo appeal AGAIN on the DLA front. Is there somebody who could help with DS? Just to take some of the responsibility off your shoulders a bit?

Original poster

jenk1 · 17/10/2005 20:44

im having the afternoon off tomorrow,DH is taking dd out to see some friends of his and ds is going to my brothers, cant wait!

OP posts:

Julie555 · 17/10/2005 23:43

Have you tried to get help from anyone like Homestart. They were great when my sister needed some support, just an hour a day gave her hope.

Original poster

jenk1 · 18/10/2005 09:38

yes i have been referred to homestart so hopefully will hear something soon, my social worker is coming on friday and she is really nice,she,s taking me and dd out to a toddler playgroup.

OP posts:

JakBat · 18/10/2005 15:54

How are you today jenk?

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