Message about Sleepy Jess

[SleepyJess]

Hi all

This is sleepy Jess' sister she has asked me to post because she has received sponser money from a few people. She is off line at the moment because her youngest son is in hospitaL because he had massive fit on Monday morning which went on for over 2 hrs and is currently having lots of tests to find out why. We have taken her post to her at the hospital and she wanted me to post so you would know why she had not thanked people for the sponser money. My nephew is doing better now and she'll post with updates when she gets home. She also wants to tell Jays Mummy thank you for the beautiful cards.

[darlingbud]

thank you sleepyjess sister for letting us know. I'm sure I won't be the only one to wish the family well and hope her sone recovers quickly. send her our love.

[Hulababy]

Sorry to hear that her DS is poorly. I hope the tests find out what caused the fit, and that he is better soon.

[Katemum]

Glad he is doing better.

[MarsLady]

send her our love! Glad he's doing better.

[SaintGeorge]

Thanks for posting. Please let SleepyJess know we have all been thinking of her as Ellbell posted the news here . Good to hear he is doing a bit better now.
Please let Jess know that I have posted a request for healing on the Mystic Familiar board that I know she also uses.

[Newbarnsleygirl]

Hope he's better now.

[RTKangaMummy]

Thanks for posting an update

Sending more +++++++++++++++ positive vibes

and cyberhugs {{{{{{{{{{{{{{}}}}}}}}}}}}}

And power of mumsnet

[coppertop]

Sorry to hear SJ's little ds has been in hospital. Best wishes to the SJ family. xx

[morocco]

best wishes for a full recovery

[Fio2]

oh poor ds2 I hope they find out what has caused it, it must be a really worrying time for everyone

[LGJ]

[SleepyJess]

Hi all

Thank you for all your messages of support I have let SJ know. We're hoping that they'll be aloud home today just waiting for the result of eeg he had act scan yesterday to look for tumors or masses on his brain but it was all clear thank god.

Thanks again

SJ's sis x

[coppertop]

Thanks for the update. I'm so relieved the scans were clear. Fingers crossed that little ds will be home today. xx

[Twiglett]

Tell her we're thinking of her and DS .. thanks for posting

[SleepyJess]

Hi folks. Just wanted to say, we're home .. and thank you so much for all the messages on this and Ellbell's thread.

Little DS (Alex) is fine but I have no idea how I am ever going to relax again! We are getting a baby monitor with a camera/screen asap.. then maybe I will go back to sleeping in my own bed! Slept on floor next to him last night even though we bought a normal baby monitor on way home from hospital yesterday. Not enough to make me relax it seems.

I don't know how any parents whose children have or have had siezures cope. If there are any reading this, please give me some advice if you don't mind!!

The scariest thing, which I keep replaying over and over in my mind, is that poor DS has probably been fitting away alone in his room for some time when I found him!!! Nothing like it had ever happened before despite his CP and other problems. The rectal diazapam that the paramedics gave at the house had no effect!! They gave him other stuff in the ambulance with little effect and were trying to radio ahead for more advice but the radio wouldn't work! Luckily, with oxygen, he was maintaining his SATS ok.. thank God.. because in total the fit lasted at least 2 hours!!!!!!! I kept thinking in the ambulance that we were going to lose him. Turns out that DH, following in the car with DD, was thinking the same and he never thinks that way.. even when DS was newborn and really in SCBU! Ialso thought that if he made it through, there was no way he could come round from a fit like that and still 'be Alex'. But he is. Thank God.

DD (age 6) was a star.. she was crying and terrified because she had seen DS fitting.. but she did exactly as I told her.. got herself dressed and sorted and went up the road to the end of the walkway (our road is a funny shape and nobody can ever find us) and jumped up and down and waved her arms over her head so that the paramedics saw where we were straight away!! I am soooo proud of her.

At the hospital they gave DS so many drugs that he slept for the rest of the day. They were doing constant obs on him and I was terrified he wouldn't wake up or that if he did he would be damaged. It was a nightmare. By the next day he was awake but very unhappy and the whole time he was in he had IVs three times a day/night which took 2-3 hours at a time and which he fought the whole time which made him even more wiped out. I had to hold him in a death grip!! DH and I both stayed the whole week.. we managed to arrange care (best friend/mum/sis) for the other two because it was obvious they needed both of us at the hospital and not just for the IVs. DS has many needs when well.. he was a million times harder to handle ill.

They have done so many blood tests and put so many lines in that he looks like a pin cushion. He is covered in bruises and scabs! He has had a CT scan which was to check for tumours/masses/bleeds which may have caused the fit.. but all clear thank God. The EEG was clear as well although I know this does not mean he does not have epilepsy. Now he is home is on so many drugs. We have to soon start weaning him off the anti-seizure drug they put him on initially (Phenotoin) and gradually work up to a max dose of the one he is going to stay on long term. (Epilim.) He is going on all the drugs straight away because of the CP which so often goes hand in hand with epilepsy. And I must admit it makes me feel a little better that he is.

Thanks all for caring. It was lovely to read all the messages, thanks to my sister and Ellbell.

SJ x

[hunkermunker]

SJ, I'm so glad to hear that you're home and DS is recovering - your DD sounds like a little star!

What a traumatic week for you all - make some time for yourself or it'll hit you hard. Even if it's just a long bath.

Love and hugs, HM xxxxxxxxxxxxxxxxxxxxxxxxx

[jessicasmummy]

SJ

Really pleased everything is ok now. As HM said, you need to take some time out for yourself now yuo are home and get a nice long bath.

All my love and prayers

JM xxxx

[Pages]

SJ, I feel so much for you. My DS suffered a seizure at 9 months and was also put on epilim. The journey to the hospital was the worst 10m of my life, apart perhaps from the two days that followed waiting for the CAT and EEG results (his EEG was abnormal and I nearly passed out in the neurologist's arms when he said the CAT was normal). I still find it hard to think about it all sometimes now. I had never experienced a fit before and definitely thought I was losing DS.

If you want to CAT me any time feel free, but I will only say that the fear of leaving their side gets a bit easier over time as they remain fit free. I will be praying that your little Alex does.

(I should also add that epilim can slow down their development-it definitely had a dulling impact on my DS- so if you find he is spaced out, sleeps a lot and isn't developing at his normal rate you may want to speak to your neurologist and switch to another drug).

[SleepyJess]

Pages! Has your DS remained fit free since???!!!!

Yes they warned us Epilim may make him a bit drowsy, esp while he is still having it with the Phenotoin but I also read in a leaflet that the body can adjust eventually? Ds has developmental delay anyway - although has always made good progess in his own way - as well assevere disability so I don't know if/how the Epilim would affect him as you describe. But thanks for the info.. I will be watching him carefully anyway. (This is what is bothering me though.. I always watch him carefully.. I even count his resps when he sleeps.. have done ever since he was v.ill in SCBU as a newborn.. and there was absolutely nothing wrong with him when I put him to bed last Sunday night!! I just can't understand where the fit came from!)

Was your DS diagnosed with Epilepsy then in view of the abnormal EEG? Is he still on Epilim or other epilepsy drug?

Sorry for all questions!

SJ x

[LGJ]

Delighted to hear that things are improving.

[champs]

so glad ds is back home safely SJ!!
I wanted to send a card but didn't know if you'd mind. kisses to you all.

[Davros]

SJ, will post here as I happen to be in this section. So pleased you are all home but sorry to hear about such a horrible experience. Hope all is well now and I know that you will get lots of good advice from the "seizure mums" on SN (sounds like a weird band!) and lots of support everywhere on MN.

[Puff]

SJ, so glad to hear he is home.

Puff xx

[almostanangel]

//[[[[[[[[hugs]]]]]] welcome back and thanks for the email..quack quack!