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SN children

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

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Original poster

Very down

44 replies

needmorecoffee · 31/01/2008 16:00

Paed just called and dd's EEG has got worse from her last one although not yet as bad as last July when they thought she might be developing Lennox-gastaut syndrome.
Don't know how much more of this I can take. Life is just shitty. He's doubled her keppra.

OP posts:

Blu · 12/02/2008 21:58

nmc - just to say 'sorry'. All sounds very shit. But fingers crossed for the operation tomorrow - hadn't realised that she was having an op.

PipinJo · 12/02/2008 23:47

This reply has been deleted

Message withdrawn at poster's request.

Original poster

needmorecoffee · 13/02/2008 09:34

Thank Pipin. We don't get a break as the in-laws refuse to have anything to do with a 'disabled' child, heck, in 16 years they haven't given us a break from the other 3!
There's no SNHV here (does anyone see one of these mythical creatures?)
DD having severe cerebral palsy I can cope with - she can't move a thing and has no hand function or speech - but the epielpsy does my head in because the 2 syndromes she has had/have take away her intellect. Its not notmal every day epilepsy. She came through infantile spams with her intelect but if she develops LGS its all downhill from there with a high rate of death

Heart - didn't realise that you had got a dx in the end. Aicardi is so very rare. I'm sorry. How's she doing as it can be variable?
Loli - how's your LO doing? I know thats another variable one as well. Did she have infantile spasms? What drugs have you tried? dd just wemt on keppra and every single movement that we weren't sure if they were seizures or not have vansihed! Its fantastic. It does make her have a pre-menstrual type rage however but she's a bit of a spoilt princess anyhow, being as she's waited on hand foot and finger due to her severe CP.

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Loli · 13/02/2008 22:52

Hi NMC, sorry to here that your inlaws aren't giving u any support with your dd, but they're the ones missing out. My dd ok at the moment thanks. Shes also on keppra, but have not found her seisures any better, shes also on vigabatrin which seemed to work at first but not any more. they want to start her on other drugs but they have a sedative effect and all she does is sleep anyway so i've refused so far, dont know what to do, the seisures drive me nuts but at the moment her quality of life is poor as she sleeps so much, she'll be even worse if shes having drugs with a sedative effect. Why cant things be straight forward. She also has infantile spasms, got to the stage now where because she's so unresponsive have started to think that every move she makes is some kind of a seisure.You mentioned if your dd develops LGS, whats that?

heartinthecountry · 21/02/2008 13:36

Hi Loli - sorry, I haven't looked at this for about a week so didn't see your reply. Do you know why Aicardi was ruled out? Not saying for one minute it is Aicardi but ACC and Infantile Spasms together are 2 of the main diagnostic criteria for Aicardi.

Re: IS and medication. I was really reluctant to put dd1 on any drugs initially as I felt they were knocking her out and taking away her quality of life. But our neuro said she felt it was more the seizures than meds making her so sleepy. We added topamax when she was about 9 months old which got her seizures under control and sure enough, she stopped sleeping all the time. topamax is also known as dopamax but it really hasn't had a sedative effect on my dd1.

NMC - we have been lucky with dd1. She is at the higher functioning end of the syndrome. Now 5 and walks independently, signs and has some speech.

Loli · 21/02/2008 20:57

Hi heartinthecountry, cant really remember why Aicardi was ruled out, bin through that many dianosis now. She was on clonazepam for her seisures for about a week, but she was even more sleepy than usual, had problems coping with her secretions aswell and was worried about her getting a chest infection as she has a poor swallow reflex. Shes tube fed only although she does have a taste of things now and again, just wish shed wake up for longer periods, only ever see her with her eyes open for a few seconds at a time, seems to have got worse,but suppose thats the epilepsy.

NMC, hope dd is back home safe and well.

Original poster

needmorecoffee · 22/02/2008 08:33

Loli, have you tried ACTH for the infantile spasms? Its the first line med along with vigabatrin.
Lennox-gastaut syndrome is similar to IS but it causes many many diffferent types of seizure, tonic, tonic-clonic, status, absence, atonic etc etc and is pretty resistant to any medication. It nearly always causes loss of intellectaul function due to the many many seizures. There's a disctinctive pattern on the EEG. dd started to show signs of having these patterns last year so we did a heavy 2 week course of ACTH which was pretty horrendous but it cleared up her EEG and no seizures till January.

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wannaBe · 22/02/2008 09:51

nmc, had just clicked on sn to see if any news on your dd since she was in hospital last week and seen this.

Have no personal experience of what you're going through, but I live in Swindon so only a 30 minute train ride from Bristol, would be happy to pop over and make you a coffee/bring you some cake (I got a book for my birthday called "the ultimate encyclopedia of chocolate so will be needing lots of tasters for my attempts )]).

Once ds is back at school next week I will have loads of time on my hands again so would be happy to pop over .

Original poster

needmorecoffee · 22/02/2008 16:37

CAKE!!!!!!!

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Loli · 22/02/2008 20:59

Hi NMC, ACTH was the first thing they tried but unfortunately it sent her blood pressure sky high and she was really unwell and in hosp for 2 weeks. Saw neuro at beginning of week and he said that it could be possible that shes constantly in and out of seisures and not hopefull that its treatable, although on waiting list to try ketogenic diet. Pretty sure dd has no intellectual function, although she will kick one leg if she doesnt like something, does this count, wish i could be more positive about dd but she sleeps all the time, and when she does open her eyes its only for a few seconds. Really need something to feel positive about. Shes so beautiful, and this is all really unfair.

alfiesbabe · 22/02/2008 21:07

NMC - thinking of you. I'm not in a good place either at the moment (you answered my post earlier this evening). Not a lot to say apart from hugs.

Original poster

needmorecoffee · 22/02/2008 21:41

Where are you Loli? ACTH sent dd's blood pressure through the roof and she was on BP meds but it did clear up her EEG. In hozzie for 3 weeks.
How old is your dd?

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Loli · 23/02/2008 20:22

Hi NMC, my dd is 17 months. Dont think the hosp thought it was a good idea to carry on with the ACTH as she was having to have so much medication to bring her blood pressure down and was really aggitated. Went onto vigabatrin then and still on it now although hasnt stopped seisures. Docs said right at the beginning that they didnt think they would be able to treat her epilepsy successfully, going to try ketogenic diet but not too hopeful.
Hope your dd is better. How old is she and how able is she?

Peachy · 23/02/2008 20:30

Friday you're at clinic I know, Saturday OPK for a visit? DH owes me one (going out with his mates on Mothers day ) ....

Peachy · 23/02/2008 20:33

(wannabe, if you go over can heartily recommend NMC's vegan cheesecake LOL)

NMC Am really sorry you're all going throough this. Feel awful I haven't been able to get over but it wall went a bit tits up and - well you know.

let me know if saturday is OK, and also if there's anything celyn could do with (sorry, a new wheelchair / tand / car out of the question LOL) for her birthday.

Original poster

needmorecoffee · 24/02/2008 08:37

Loli - dd ended up on 2 types of BP meds to keep it down and we were skating pretty close to the line. We did a 2 week 0.5 ml's every other day (the second time) and it was awful but it did clear up her EEG (at 3 months of age we did the same regime for 5 terrible weeks and her BP was serious but it stopped the IS)
dd is cognitvely very good but physically her CP is severe and she can't sit, roll, feed herself, use her arms or talk. She's 4. Her delays are soley down to how restricted she is physically and she's as bright as a button. But when seizures are happening - like last year with the LGS type thing, her learning does slow right down. They really have to be stopped. Have you tried keppra? dd started this 4 weeks ago and every mysoclonic jerk has stopped. Marvellous stuff. She's still on vigabatrin though and has been for over 3 years.
Peachy, this Saturady is great. That'll be one vegan cheesecake to go? Send me an email with times etc Dunno about birthday stuff. We have the same dilemma. What do you buy a 4 yo who wants 4 yo stuff but can't move?
Wannabe - most of next week is fine but dd is better on wednesday as she doesn't have school in the morning. School makes her tired and tetchy.

OP posts:

Original poster

needmorecoffee · 24/02/2008 08:39

saw you tried keppra. D'oh. Lamotrigine is worth a shot. It doesn't cause more drowsiness.

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Peachy · 24/02/2008 09:37

NMC- does she like DVD's / CD's?

trace2 · 24/02/2008 10:47

awww nmc i only just seen this hope you feeling a little better?, i wish i was nearer to you as you have been so much help to me this past year! so sorry about your dd and as for your inlaws there are missing out on a wonderfull amazing little girl.
((hugs)) if you want to chat ill give you my msn? its
tracypearson 6 at hotmail dot com

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