Oh Tweety I am sat here in tears for you here, big hugs. I think its shocking that they are leaving all the tests until Monday. I know how terrified you must be feeling, I went through something similar with Logan and it was the most horrible time of my life. It's horrible not knowing whats going on. I really hope you get the answers you need tomorrow hun. You are such a strong lady and you will troop through. Thinking of you all xxxx
Another hospital trip
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Angela2612
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fingers crossed they get to the bottom of it and I hope Aaron will be on the mend soon
CARNAT22
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Glad A slept even if you didn't hun!
Make sure you have a nice breakkie and yep fill up on tea.
Not long now until they can do the tests hun, but you are in the right place if he's had a few more episodes.
Hoping that this tomorrow you are being sent home
xxxxxxx
Make sure you have a nice breakkie and yep fill up on tea.
Not long now until they can do the tests hun, but you are in the right place if he's had a few more episodes.
Hoping that this tomorrow you are being sent home
xxxxxxx
michelle35uk
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tweety my friends baby is going through exactly the same thin but her baby was having the spasms one after the other all day...shes had every test going and hers is baby epilepsy but its under control now with medication.its not all bad hun and i know its sooo hard seeing your baby poorly but hes in the right place.my friends babys mri was normal so theyve put it down to one of those things, her eeg showed the spasms and now shes on meds shes seizure free.try not to worry,aaron is a gorgeous boy and vrry lucky to have you as a mummy xxxx
tweetyfoo
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Thanks ladies .. Hubby has arrived so I'm having a breakfast an tea.
I can't leave Aaron's side as the staff are just too busy and I wan to know when he has an episode.
They said they would watch him when I went for a shower and I came back and there were no staff to be seen. So hubby is watching him while I take a break.
Please excuse any typos from my fat fingers!
Tapatalk madness!
I can't leave Aaron's side as the staff are just too busy and I wan to know when he has an episode.
They said they would watch him when I went for a shower and I came back and there were no staff to be seen. So hubby is watching him while I take a break.
Please excuse any typos from my fat fingers!
Tapatalk madness!
tweetyfoo
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I think I know what it is!
God bless Noah's dad!!! And my BIl who is a doctor
It could be West Syndrome .... A form of infantile spasms. It affects 8-10% of babies with DS.
Doctors have used the prase infantile spasms already but haven't really explained anything to us.
There is treatment and they tend to grow out of it. This is such a relief (if that's what it is)
Roll on EEG! As that should confirm it.
I should probably explain that a guy in work lost his baby girl when she was 8 weeks old, when she started getting sick she was having seizures, this is what has been scaring the pants off me!
Really need to get hold of a doctor and ask the question
Please excuse any typos from my fat fingers!
Tapatalk madness!
God bless Noah's dad!!! And my BIl who is a doctor
It could be West Syndrome .... A form of infantile spasms. It affects 8-10% of babies with DS.
Doctors have used the prase infantile spasms already but haven't really explained anything to us.
There is treatment and they tend to grow out of it. This is such a relief (if that's what it is)
Roll on EEG! As that should confirm it.
I should probably explain that a guy in work lost his baby girl when she was 8 weeks old, when she started getting sick she was having seizures, this is what has been scaring the pants off me!
Really need to get hold of a doctor and ask the question
Please excuse any typos from my fat fingers!
Tapatalk madness!
michelle35uk
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thats what my friends baby has tweety...they also called it spasms and it was the eeg that confirmed it...meds control it and she should outgrow it 
Squeakz
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Hey lovely so sorry youre dealing woth this.....youre such a brave mummy. Know what u mean about the hot drinks thing sucks....same when we were in hosp with g....and going to the toilet.....they were so busy I couldnt leave him and therefore couldnt pee..... the toilet was miles away..... big hugs hun....
Ps he is SUCH a cutie!! Xx
Ps he is SUCH a cutie!! Xx
Mrs Wibbily
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Hope you've got it right tweety and they sort ASAP.
The hospitals down here feed BF mummies but maybe it's because he's over 6 months?!x
The hospitals down here feed BF mummies but maybe it's because he's over 6 months?!x
linxminx21
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iv only just seen this, im so sorry you and aaron are going through this but hes a little fighter!! i hope you have some answers soon, and if it is what you think that the drs confirm it quickly so you can get home and settled with aaron... and maybe a little sleep too!!
tweetyfoo
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Just spoke to neurologist. She thinks its west syndrome too. Says there is no point in us stayin in hospital to wait for a test so we are going home and coming back tomorrow for an EEG.
I'm so glad as I'm exhausted and I dont want Aaron catching anything (one little girl has chicken pox)
Please excuse any typos from my fat fingers!
Tapatalk madness!
I'm so glad as I'm exhausted and I dont want Aaron catching anything (one little girl has chicken pox)
Please excuse any typos from my fat fingers!
Tapatalk madness!
babyem
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Great news to be going home!!
Ive had an EEG, and its ok. Just abit of a faff putting all the wires on and off, but Im sure Aaron will be fine you will be amazed when they show you the brainwaves!!
Get some rest and lots of cuddles xx
tapatalking x
Ive had an EEG, and its ok. Just abit of a faff putting all the wires on and off, but Im sure Aaron will be fine
you will be amazed when they show you the brainwaves!!Get some rest and lots of cuddles
xxtapatalking x
linxminx21
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good news that your going home and they have some kind of idea now! the tests will soon be over with and you will have some definate answers x
tweetyfoo
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Had a 2 hour nap when I got home.
Feeling overwhelmed at the moment. Everything was becoming normal. Hospital appointments were few and far between and things were good. Now we have another mountain to climb.
I've reached out to mums in my DS FB group and some have shared their experiences, from what I gather, the transition to medication is hard and side effects are pretty horrible. So I'm scared about that.
Also developmental regression is pretty common with this condition, and I know it will break my heart to see this after all the hardwork that that we've both put in to get to where we are.
I am however glad to be back in my own house, and to be able to have tea as and when I want. I'm terrified of putting Aaron in his own room tonight - but the Neurologist assures me that he is not coming to any harm when he has his episodes.
It just baffles me that on Thursday he had no episodes and today he's having them every 2-3 hours. Its horrific to watch because he gets upset, and the best thing I can do for him is lay him down and let him ride it out
Thank you lovely ladies for all your kind words and support, don't know where I'd be without my PF mummies xx
Feeling overwhelmed at the moment. Everything was becoming normal. Hospital appointments were few and far between and things were good. Now we have another mountain to climb.
I've reached out to mums in my DS FB group and some have shared their experiences, from what I gather, the transition to medication is hard and side effects are pretty horrible. So I'm scared about that.
Also developmental regression is pretty common with this condition, and I know it will break my heart to see this after all the hardwork that that we've both put in to get to where we are.
I am however glad to be back in my own house, and to be able to have tea as and when I want. I'm terrified of putting Aaron in his own room tonight - but the Neurologist assures me that he is not coming to any harm when he has his episodes.
It just baffles me that on Thursday he had no episodes and today he's having them every 2-3 hours. Its horrific to watch because he gets upset, and the best thing I can do for him is lay him down and let him ride it out
Thank you lovely ladies for all your kind words and support, don't know where I'd be without my PF mummies xx
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