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......

pred worked a bit for dd then we added vigabatrin and switched to ACTH and the spasms stopped the second day. Never saw another one again and the hyps were gone a week later.
dd's blood pressure went nuts though. She was on 9 meds at one point. Pred, ACTH, vigabatrin, 2 BP meds, 2 stomach meds.

so sorry you having a hard time and your ds i hope the meds work

Another quick update - broadband been down all weekend so this is the first chance I've had. Gabe is quite well, feeling very sorry for himself but we still have a good few (short) moments in the day when he is his old rowdy self. Right now, in fact, giggling to himself in his playgym !
He is very sleepy, grumpy as hell and hungry - no feeding problems now. Pren seems to have had a good effect so far, the 'typical' spasms seem to have stopped but he is having the odd twitch, much like the startle reflex, which really upset him. The stomach meds he has are a nightmare to give him as they don't dissolve very well so we've given up with the syringe and he is drinking it straight from a cup - I think most of it is going in. His BP and urine were fine on Friday and his paed is going to check again tomorrow, then Friday we'll see neuro again to decide what to do next - carry on with this dose, increase or decrease.
Thank you all for all your help and good wishes xx

so glad hes feeling better which makes you more happy

glad the treatment's going well, hope you can lower the dose at the next appointment.

Hi, just wanted to say i have been following your threads and your son is so gorgeous. Glad the treatment is helping and wanted to wish you good luck at your next app.x

well, another rough week. Spasms back with a vengeance since Wednesday evening. Poor boy is screaming and crying constantly. Check with paed on tues and BP was slighhtly raised but back down today. Prednisolone now increased to 60mg per day for one more week when we will wean and add vigabatrin. Hopefully that will do the trickand my jolly little lad will return!

Oh b*gger and other unseemly words that should not be uttered by vicar's wives

So now poor scrap has spasms and side effects.

You must be so missing your little fellow as he normally is.

I remember not seeing Nathan's eyes for a week when he was sedated in NICU. I hated it. That smile needs to come back pronto.

I will put my phone number on facebook in case you like to vent. I know you prefer to write though...

Thanks. It is very strange just remembering him only 2 weeks ago smiling and laughing - but its not all bad news. Neuro is VERY happy with him otherwise - showing little, if any, developmental regression so far . He actually sat quite upright for her today despite his tears! Been telling her for ages he could do it, but he never would in front of her - making Mummy out to be a little delusional!

glad there is good news too, helps you hang in there