Help ! Pixiedust Needed !!!

[Miss Poodles]

HI just came on here to ramble as i feel so down
It was ds 11 sportsday this morning (hes autistic )
as soon as we arrived he had a massive seizure and fell grazing his chin ,legs and arms.he has these fits about once a month but if we increse his meds he becomes like a zombie Hes had epilepsy all his life and i just dont know how youre supposed to "get used " to dealing with this. Im so worried with the heat and excitement his epilepsy will spoil his holiday its so unfair that he has to go through this ,id give anything to have it myself instead. Sorry to ramble on but just need to offload xxxx

[edie_w]

Oh Laura :( so sory to hear about your bad morning. I can't offer you any advice, other than to say I know lots and lots of DIBBers have children with special needs, and they find that Orlando offers the very best facilities.

Hope your DS's grazes heal quickly.

[goodevans]

So sorry his Sports Day got off to such a bad start.:(

Sorry that I know nothing that can help but I'm sure other Dibbers who have experience in these matters will be along shortly to reasure you as Sharon has said.

Just wanted to send you a huge dose of the **********PD**********
requested!

Chin up ! Your lad needs his Mum strong to ensure you all have a wonderful (and well prepared for trip)

Jan
x

[doreen]

((((((((hugs)))))))))) Laura. it's hard being a mum isnt it sometimes and we would all rather suffer ourselves than let our kids go through terrible times. I cant give any advise re your holiday worries but someone will be along to re assure you, just wanted to give you a ((hug))

[loadsapixiedust]

So sorry for your DS and that his seizure spoilt the sports day. Loadsa ***PD*** on its way to you both.

Our DS also has had epilepsy all his life (had his first seizure at a few minutes old) and I don't think you can ever get used to it, the best you can do is find coping strategies and always have a plan if a seizure occurs in any situation you are in with him.
First make sure you declare his epilepsy to your insurer so that it is covered just in case you feel he needs medical attention.
We carry emergency medication at all times, it is second nature now to make sure it is always with him. In the parks the first aid stations are the place I would head to first if a seizure occurred, they have ideal facilities for giving meds or just for him to have a lie down to recover. CMs carry radios and can summon medical help quickly should you need it.
Think about how you will change the timing of DS's meds with the change to US time, maybe start the week before you go altering it a little each day.
I was also really worried how we would cope if the heat or tiredness affected DS and caused more seizures, but actually he has never had one on any of our Florida trips. We are lucky that his present medication regime seems to be controlling them well. We have to make sure he drinks plenty as dehydration can also be a factor and be careful that he doesn't become over tired as again that can trigger a fit.
Be aware that quite a few attractions have strobe or flashing light effects if these could be a trigger for your DS.
Feel free to post again or PM me if I can be of any further help.

[Sean_and_Sue]

No advice to offer, but Loads of ****************PD************** Laura, and {{{{{{{{{{{{{Hugs}}}}}}}}}}}}}} - its rotten for us Mums who have to watch our kids deal with stuff like that.

Love Suexx

[Miss Poodles]

thanks all so much for your advice
sorry about coming on here to moan but you have to keep your chin up as they say and not get upset but now and again its good to have lovely people like those on the dibb to offload a bit


xxxxxxx

[BarryandCaron]

Sorry to hear about your DS seizure and fall at school, ******PD****** on it's way to you.

DS2 (14) has had uncontrollable epilepsy since he was 2 yrs old, for many years he had to wear a specialised helmet at all times (we managed to get him colourful ones, not the horrid black ones) and even then managed to crack his skull open and has lots of scars on his head. It has really helped DS2 to have a Vagus Nerve Implant but is still on 4 different types of anti-epileptic meds.

The main way we cope is to have DS2 in a wheelchair when we are out so that 1) he doesn't injure himself if he has a seizure and 2) he doesn't get too tired. Also as Lynn has said not to let him get dehydrated or too tired. We always hit the parks early for a few hours, head back to our hotel for DS2 to have a swim and nap then out for dinner and to a park in the evening.

We have to use meds to bring DS2 out of his seizures as he has clusters of them and DS2 was really lucky that he was the first child in our area to be prescibed an oral emergency med rather than the normal type.

HTH a little, please PM me or ask away on this thread if I can be of further help.

Caron xx

[Miss Poodles]

Hi Barry just wandering if this is madazolam ?
(think thats how you spell it !!)
weve been given it to give to Jordy if his seizures are too prolonged but havent had to give it myself yet as his bigger seizures have been in school ?
Also , sorry to hear Joshy has been through so much and indeed all of you have.we asked about the possibility of surgery for Jordy as his epilepsy is quite severe but they said its not an option as the seizure activity is all over his brain and not generalised .Anyway much love and best wishes to you all xxxx

[BarryandCaron]

Hi Barry just wandering if this is madazolam ?
(think thats how you spell it !!)
weve been given it to give to Jordy if his seizures are too prolonged but havent had to give it myself yet as his bigger seizures have been in school ?
Also , sorry to hear Joshy has been through so much and indeed all of you have.we asked about the possibility of surgery for Jordy as his epilepsy is quite severe but they said its not an option as the seizure activity is all over his brain and not generalised .Anyway much love and best wishes to you all xxxx


Yes the med is Buccal Midazolam, a lot easier to give in public surroundings although we do tend to use the traditional medication at home. Joshy's seizures are generally during the night now, better for Joshy but not for us :(

Joshy's seizures activity is not in one specific area but it didn't stop his Consultant in fitting a VNS which has helped tremendously.

Much love and Best Wishes, hope you have a great holiday as I'm sure you will,
Caron xx

[carys]

I have no advice but am so sorry that you have all been through this today ,sending you lots of good wishes xxx

[Miss Poodles]

thanks for all your lovely replies
Jordy is much better today - a little battered and bruised but eating chocolate like there s no tommorow xxx

[loadsapixiedust]

I'm sure the chocolate will help ;)

Ben also has Midazolam, given intra-nasally (he drools and foams at the mouth during seizures so oral meds would be ineffective). This is so much easier to cope with in public than the rectal injection Diazepam he used to need.

I am pleased to report that I actually had to dispose of the last batch as it had expired without us needing to use it. :)

[BarryandCaron]

I'm sure the chocolate will help ;)

Ben also has Midazolam, given intra-nasally (he drools and foams at the mouth during seizures so oral meds would be ineffective). This is so much easier to cope with in public than the rectal injection Diazepam he used to need.

I am pleased to report that I actually had to dispose of the last batch as it had expired without us needing to use it. :)

That's brilliant news Lynn :spin: We have times where we have to use the Midazolam more than others, never yet had to throw any away though :(

I know what you mean about the Diazepam, I can't believe in our area Consultants aren't prescribing it - Joshy gets his from his Consultant in Sheffield (it's posted from Sheffield Children's Hospital) The Diazepam is more effective on Joshy's nighttime seizures so he still has it occasionally.

Caron

[stevered1]

Laura, I know its hard at times and you just need a good moan to let it all out and to know others are sending you there best wishes.

I would agree with comments already about keeping dehydration at bay as it does get v hot at times. Also by taking time out during the day to rest even if its in a quiet part of a park might allow him to calm down and keep going.

Our son is only 4 and luckily for us his fits are fairly well controlled and usually when he wakes up ( although they are changing as he had one when eating and had to stop him choking on his food )

Let him have a little more chocolate as we know how medicinal that is for all of us and im sure you will love your holiday and come back beaming about it