Saw neuro today

[feelingbitbetter]

and showed her some video of DS and his new jerks. She thinks they are almost certainly infantile spasms. but OK. She said they are still very subtle so I probably spotted them as soon as they started. Having another EEG next week hopefully that'll be long enough for them to be picked up. Going back to neuro on 3rd dec with view to start medicating with vigabatrim (sp?).
Not great news but I do feel strangely happier now that they are happening. Watching and waiting and worrying I'd miss them was hard, and every day that nothing happened, a little bit of me hoped that he'd escape them.
So, here we go......

sorry that your concerns about the infantile spasms have been bourne out. I hope the medication is helpful.

sorry that your concerns about the infantile spasms have been bourne out. I hope the medication is helpful.

feelingbitbetter, well done for getting them on video. I hope that the meds work quickly when you get them

good luck with the vigabatrin. They reduced dd's spasms from 5 clusters of 40 or so down to 5 tiny spasms. We then added ACTH for 5 weeks (injection of 0.5 every other day) and it cleared everything up and she remained seizure free for 3 years.
IS is a total bastard and needs to be hit aggressively.
There's an infantile spasms suport group on yahoogroups. Its very very good.

NMC how is the vigabitrin given? Is that by injection (bit nervous if it is) or orally? Didn't ask yesterday - didn't think to. Neuro is hopefull he will respond well to it.
She also mentioned the possibility of steroid treatment - do you know anything about that? I expect you do. Am off to join the yahoo group now. Thanks for your messages

aw fbb, feeling for you. you are dealing with things so well though, I admire your attitude.

it is a bit close to home for me I must say, as we are waiting to see what Nathan wil do in terms of epilepsy (nothing so far)

hope the meds work well

vigabatrin is a powder you dissolve in water and syringe it in.
ACTH is the best steroid to use. It is injected which used to freak me out but dd rarely noticed. The side effects can be pretty awful - irritability (dd screamed 24 hours a day for 5 weeks except when sedated) moon face (goes down very quickly) hunger, high BP etc but its the best med fori infantile spasms. you can't fart around with these as potentially they can wipe out all intellectual progress.
Do you want my number?
We've done the ACTH steroid treatment twice, once for infantile spasms then 3 years later she started to show signs of lennox-gastaut syndrome (the two syndromes are linked. One often turns into the other although dd had a 3 years seizure free period)

sometimes they use prednisilone and it works for some kids (its also a steroid but its oral) but of the 3 first line meds, its the least successful.

Now everything makes sense. She mentioned vigabatrin and went on a bit about effects and side effects, then I said 'what about ACTH?' and she nodded and went on about steroids and their effects. Didn't realise ACTH was a steroid . Perhaps I wasn't listening properly.
I obviously wasn't coz she was really pleased that we'd had some good head growth tho can't for the life of me remember what it was.

Thank you for offering your number NMC I really do appreciate it, but I am not a great talker at the best of times, and, even on a good day, talking about DS can reduce me to tears within a few minutes. I also appreciate you have a lot going on with DD and her op so I appreciate you even answering my every call. Perhaps when things are a bit more settled for us both, I'll take that trip over the bridge to visit you both! xx

anytime. I know how scary IS is and I've been there. The good news is despite the IS and despite dd's brain damage and very severe cerebral palsy she is learning just fine. The statistics are bad but they don't tell an individuals story.
The ACTH is a nasty treatment but it works for most children and stops the IS and hyps in their tracks.

HEADGROWTH YES! (punches air )

how far into Wales are you? would love to meet you too, and for boys to meet each other.

Thanks Madmouse that's exactly how I'd have been on a normal day.

We are in Cardiff. Where are you? (my geography is shocking )
The boy tells me he needs feeding now so I'll check back later x

oh so sorry its IS its good you caught them on video i hope the meds help

Thank you Trace. How are things with you? I've been reading your threads and it sounds tough at the moment. I do hope things are improving for you.
Any luck at all with your idiot neuro?

no luck yet aking for second opinion waiting for child in need meeting on 8 th dec but guess what neuro carnt make it but maybe from there we will have an idea what to do.

how are you coping? how old is ds sorry i forgot are you on fb?

lol forget his age just read hes 5 months

We are coping OK at the mo. It was expected, not that that makes it any easier to accept but it wasn't a shock either. He is being an absolute gem today - so playful and giggly, bless him.

Your meeting in Dec sounds like a step in the right direction, hopefully they'll appreciate the circles you've been going round in and actually take some decisive action. Perhaps its better if neuro isn't there???

I am on fb, have to go somewhere to feed my poker addiction . Its getting out of hand now . I am very well hidden but you can find me from my email address vickyhowells1976atyahoodotcodotuk.

hes so gorgeous is he sitting up or trying to?

just a quick update. Poor boy had a tough time over the weekend - really starting to get distressed by the IS (which were happening ALL the time and very much more severe). Could stand it no more so I took him to his endocrinology OP appt on Weds (he no longer requires hydrocortisone orally. yay) and then delivered ourselves to the assessment unit for ward admission. IS witnessed by numerous medics and an urgent EEG was done. Stayed in overnight (read my first book in about a year!) Hypps recorded and steroid treatment started today. Will make him very grumpy - but at least I'll know why. It was very difficult watching him so distressed and not knowing if he was in pain, or frightened . Hopefully we shall see some improvement soon.

sorry you and your boy had such a rotten time over the weekend, I hope that the steroid treatment works promptly and with minimum distress to your DS.

oh fbb that's where you were

sorry for such a tough time, but well done for the actions you took. praying for improvement. Hug Gabe for me x

good luck with the steroids. ACTH or prenisilone?
dd screamed 24 hours a day with ACTH and had to be sedated periodically but it cleared up the hyps. Some children regress to blobs and recover afterwards. good luck.

Thanks NMC, prenisilone at the mo. Seems to be having an effect already - only 3 episodes so far today, 2-3 jerks each. Had to go back for review today, BP check and urine. All good. He is very sleepy, bit grizzly (much less than I expected) and wanting to be cuddled all the time. He is having some good alert moments - still smiling and laughing and 'standing' up, but for only about 10 mins at a time. He is a bit more floppy, don't know if thats him feeling very sorry for himself and can't be arsed with anything, or a bit of regression. He is moving about quite normally (for him) on the floor, but doesn't seem to be able to sit up as well as he could. Neuro is very pleased so far - he is tolerating it well and has some adult strength meds to protect his tummy. Time will tell and its early days - I'm just glad he's being treated.
P.S. Do come back NMC, we need you! If you want a break, please will you come back and let us know how you go next week - I will be thinking of you and DD. Good luck xx