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

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

SN children

had a really bad day, feel like crying..

27 replies

dizzy34 · 22/01/2006 00:24

Sorry everyone if this sounds at all like whinging but ds has had a really sht day. His seizures started at about 3am this morn and he was having roughly three per hour. He is fed four times a day via a pump and he has been vommiting after most feeds for about 2 wks. As he is getting older he struggles when he vommits and he chokes and stops breathing. Its getting harder to hold him and suction him at the same time. His seizures continued all day and got worse at about 8pm. They were then every 4-5 mins, lasting between 2-3 mins so he was pretty much having 1 min break. Hes had about 80 ish fits today. He has his bed time clhoral hydrate (which is also a rescue med), they seizures continued and i eventually gave him buccle medazalam. he is asleep now and only having eye flickers and the odd brief smile/giggle(he never giggles or smiles unless in a fit). we did get out for a walk but everytime he had a fit and screamed someone looked at me. He vommited in one shop and as i was struggling to undo his chair straps whilst getting his suction a very helpful woman said 'i think hes choking'.....YOU DONT SAY!!! What the fk did she think i was doing. That is about the 50th time that has happened. I was boiling hot and felt like everyone was watching, my twins were helping but as i looked around i just thought why cant someone say 'do you need a hand'. sorry to go on, i know you all understand how i feel.just think im having sht week. we are now aware of his life expectancy and have to think about 'do we resusitate in an emergency. (i also have pms, due today, and hubby chose today to stay at the club after rugby until 11pm)

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sparklymieow · 22/01/2006 00:25

hope he ok, why didn't anyone help??

dizzy34 · 22/01/2006 00:27

dont know, think maybe he frightens people as he has an ear piarcing scream (my nephew hides and covers his ears on bad days), plus i think the sight of him being sick out of his nose and mouth and going blue puts people off a bit, but he is only a baby at the end of the day.

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ScummyMummy · 22/01/2006 00:28

Oh dizzy. What an awful day. I will hope against hope that tomorrow is brighter for you and ds and the family. Do you get any help? Respite? I'm sorry that bystanders were so unhelpful. Must have been so upsetting and frustrating.

Aloha · 22/01/2006 00:29

you poor thing. What a dreadful day. I am so sorry.

SorenLorensen · 22/01/2006 00:30

I don't know what to say, dizzy. I hope you have a better day tomorrow.

sparklymieow · 22/01/2006 00:30

My Ds was sick once, all over his pram, I could see he was going to be sick, and I grabbed him out and he just threw up all over his pram, only one person stopped and helped me, and that was the lad that lived in the flat below me when I was in my flat, we were in Asda and not one of the shop staff helped.
How old is your son?

TambaTheDragonSlayer · 22/01/2006 00:36

(((( hugs ))))

I dont know what to say xxxxxxxxxxxx

dizzy34 · 22/01/2006 00:41

He 2.5yrs old and a little love. if you want to read his story its on www.kidsepilepsy.com . go to search by name and click on H for Harry. its not been updated for a while.

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sparklymieow · 22/01/2006 00:49

just read it, he is a cutie!! sorry you are going through this and I hope you get some rest

dizzy34 · 22/01/2006 00:56

scrummymummy,
i dont have offical respite, i just dont want it at the moment. my mum is fantastic and i couldnt cope without her, she is a young nanna (57) and gave up work to have him. There is only me and dh, mymum and cousin who know how to resus him and suction him. he is high risk of SUDEP and i would never forgive myself if i wasnt there. he has a fairly short life expectancy amd i think that has made me over protective.

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ScummyMummy · 22/01/2006 01:02

I wouldn't have thought you could be over protective in your situation, dizzy. But am so glad your lovely mum is around to support you. It must be very tiring sometimes and on days like today you need a shoulder to cry on. It was good to read Harry's story on the epilepsy website. Really hope tomorrow is a good day for you all.

chonky · 22/01/2006 08:39

dizzy - I had a look at the site, what a sweetie!

I'm so sorry you had such a crp day, and are having such a tough time in general. One of the two times ever I've cried in public about dd was when we were in the docs waiting room and she did a huge reflux vomit (yep, through the nose) and no-one offered me any help at all, not even to go and tell the recpetionist or nurse. They just bl*dy stared whilst dd and I were coated from head to toe in vomit. I think I cried largely out of anger at their ignorance and their ability to turn a blind eye. Sorry to go on about my dd, but just wanted you to know that I understand.

Hope today is better for you and ds x

beep · 22/01/2006 08:50

hope you have a better day today dizzy

getbakainyourjimjams · 22/01/2006 10:32

god dizzy what a day. hope todayis better

coppertop · 22/01/2006 10:38

Dizzy I'm so sorry that no-one offered you help when you needed it. I hope that both you and little ds have a better day today. xx

dizzy34 · 22/01/2006 11:13

Thanks everyone, it really helps. I know what you mean chonky. it is just so hard at times

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buzylizy · 22/01/2006 11:25

sorry to hear thing have been so bad for you. I think it is terrible no one helped. Hope things are better today.

kreamkrackers · 22/01/2006 13:11

that's awful! poor you. i've had dd being sick loads of times when i've been out and get looked at by people like i caused her to be sick! it's really hard when you have a bad day, i feel so guilty when i have a bad day. my dd goes to zoe's place near alder hey for respite care as we don't have anyone to help. she goes for two nights but only about once a month, although she hasn't been since november because of christmas. we usually go the cinema when she's in there and it's helped me and dp.

WideWebWitch · 22/01/2006 13:21

Poor you. It sounds very, very tough.

Bethron · 22/01/2006 14:14

This reply has been deleted

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JakB · 22/01/2006 19:06

So sorry it's been so hard for you dizzy. I can't imagine how hard life can be for you at times. I hope things are looking up and we are all here for you

dizzy34 · 22/01/2006 19:23

Hi, just to let you all know today is a bit better, Harrys ketones are low which prob explain why his seizures high. we did get some sleep and i do feel better. Thanks everyone

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Davros · 22/01/2006 19:23

How awful dizzy. I can't understand why no-one helps. Hope things are better tomorrow. xxx

Blossomhill · 22/01/2006 19:39

Dizzy - so glad you have managed to get some sleep and having a better day.
Hugs Bloss xxxxxx
I just looked on the website and your ds is a real cutie

Pixel · 22/01/2006 19:49

If people don't want to help they could at least NOT make it worse by standing around staring at you!
My sister used to have fits and the only person who EVER helped was the manager of the Odeon cinema. He carried my sister to his office, phoned our mum and gave us free cinema tickets. he was lovely. Shame there are not more people like him.

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