Very proud mummy moment - dd1 is walking!

[heartinthecountry]

I always said that when dd1 walked independently it would be one of the happiest days of my life. It is something I have dreamed about often. And she did it today!

She is 5 years old with severe learning disabilities and low muscle tone in her legs. She has been cruising a bit and walking holding a hand for about 8 months or so. But today I was changing my dd2's nappy and looked up to see her walking right across the room. Not just a couple of steps but about 10 or 12 of them!

She did it several more times this evening and looked just so pleased with herself. I don't think she understood at all why mummy was crying!

oops...sorry slow to post there heartinthecountry.
Sorry to hear about the seizures this morning.How is she now?

HI HITC...

Nothing really is straight forward is it huh...!!! I hope your dd is okay after the seizures.

I dont want to take anything away from your dd'd huge achievement but just had a couple of questions.....! Feel feel to not answer if you would prefer.

SO if your DD still has IS does she still have the hyps present?? has she ever been seizure free. I was alwasy told that IS is somthing you grow out of someimtes to have no seizures but somethimes to developing another syndrome such as lennox gaustaut syndrome....is it not as clear cut as that then???

My son has Williams syndrome and was dx with IS at 5 months. It took about 4 months to get complete seizure control and hes been sf since feb. I count every day that passes as a blessing and certaily dont take it for granted that they are gone forever. His neuro wants to wean all meds in feb 08 after being a year sf....very excited about that but also damn petrified.

It is SO encouraging to hear that your dd has learnt to walk...thansk for sharing that.

SOrry to hijack thread maybe I should have started another thread????

Hi lourobert - don't mind answering questions at all.

dd1 hasn't had an eeg for years so not sure if the hyperrythmia (sp?) still there. I think that usually children do grow out of IS and as you say, can be seizure free or can go on to develop different seizure types. As far as I know Aicardi syndrome is the only one I've heard of where the girls can still have IS all their lives. Though not the case for all of them. You are right - never straightforward!

dd1 did have a few seizure free periods in her first 18 months I think the longest was 5 months. She has also had years of usually very mild seizures. It is only in the last month or so they have started getting strong.

weaning meds is terrifying. But I do know of several children who had IS, became seizure free on meds and then were weaned successfully.

Is he on vigabatrin? The only advice I have been given is if you do wean do it really really slowly. Tiny bit by tiny bit. Do you have a good neuro you trust? If you can get him off the meds obviously that is wonderful.

How is your ds doing? I don't know much about Williams but have heard of it.

Well done to your DD1, you must feel so proud, as must she.

What an achievement. It always means that little bit more when they have struggled to reach that stage (whatever stage that may be).

My ds is 2. He can sit unaided and is actually starting to bum shuffle slightly. He weight bears for a few seconds but loves his standing frame and will go in it for ages. Hand function is improving all the time as is vocalisation and eye contact.

WIlliams syndrome and IS do not usually go together but my darling little one thought he would throw us a bonus ;) If he didnt have the IS he would typically be much more advanced. on the up side he doesnt have the assocaited heart problems with williams thankgod.

He is on vig and eplilim and I completely trust our neuro but wouldnt hesitate to tell him if I thought we were weaning too quickly....I will ensure we take it vvery very slow....its going to be such a stressful time...will the seizures come back?? or wont they???..no one knows but I know we at least have to try. TO be honest Im not sure how much he actually gets anyway as he is so crafty as spitting the bloody meds out ( cant blame him though!!)

AsI said your lo learning to walk with Is gives me SO much hope, I know my ds may not but its lovely to hear when kids go on and fo everything we were told they may never do

Well done your dd. It must be an absolutely amazing moment! My dd2 is 6 and nearly standing unsupported and trying to walk along back of sofa. Sorry to hear about the seizures though, if it's not one thing it's another...

Thanks Fio

Lourobert - I've been trying to remember where dd1 was developmentally at 2. I think she was about the same as your ds in terms of gross motor development. So you never never know...

OMG HITC I had no idea this was your thread (it's Jimjams/gess) what GREAT news & what a little star. Well done little HITC.

Thanks yurt1 . It is pretty amazing after all this time. It was like something just clicked.

they keep surprising us don't they