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Original poster

dd is 10weeks old having seizures, having tests to see whats causing them, but

154 replies

trace2 · 22/08/2007 17:20

how do i cope? been given diazepan to put up her bum when shes in them longer than 5 mins, waiting to see lots of specialist, what do i ask my minds all over the place at the moment! as any ones little had these since being so young? please i need to know i can talk to some one

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needmorecoffee · 24/08/2007 10:18

If you go via GP refferal its going to be too long. Go to A&E and say my baby is having seizures. Thats what I did. Was transferred to the Children's Hospital and had an EEG the following day. DD's MRI was done at birth so we didn't need another of those, we already knew she had brain damage.
Or call your GP and tell him/her thata tiny baby haveing seizures is an emergency and you need to be seen right now.

Original poster
trace2 · 24/08/2007 10:37

thanks for that but it was as shes been in hospital since a&e (friday) that they refered her, so just hopping its not to long i did ask when we was in they said theres a waiting list, but i may phone then next week if not heard and ask if we can pay

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needmorecoffee · 24/08/2007 10:44

Did they give you a consultants name? If they did call his secretary and see if you can be squeezed in. Call the GP every single time she has a seizure.
Thats what I did. And I also exagerated how many (not very honest I know) and said its infatile spasms. But I had to push. I dread to think how long waiting for aneuro would havetaken. We got our paed consultant afetr we'd gone to Children's from A&E. We were waiting on the assessment unit so I asked the nurse who was the best consultant on that day and then grabbed him as he walked past. Best decsion I made as its turned out he's Mr Infantile Spasms down here and treat hundreds of kids with it. Plus, he other interest is cerebral palsy which my daughter also has.
I now have his mobile number and can call him at any time and he's been treating DD for 3 years. I believe that if we hadn't of seeen him then her IS would have gone un-dx for longer

Original poster
trace2 · 26/08/2007 13:25

HI ALL!i dont know weather am getting paronid as i think dd is getting worse with little fits, ive watched a few videos with children with is, ans now seeing then i think dd is maybe having them, i have videos of her with these and am getting scared.
how soon can it stop them developing and do we still have our injections for mmr and things

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FioFio · 26/08/2007 15:03

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needmorecoffee · 26/08/2007 15:21

can youpost your videos?
Someof the vaccines are contraindicated for kids with epilepsy/brain injury. and some kids have devloped infantile spasms after the vaccines.

Original poster
trace2 · 26/08/2007 19:19

FioFio no she had a little one to rule out a bleed, but we waiting for a proper one at childrens hospital,

needmorecoffee am going to ring childrens hospital on tuseday and ask if we can see him sooner,or send videos

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FioFio · 26/08/2007 19:47

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Original poster
trace2 · 26/08/2007 20:05

no i dont think so , it was a small mir scan but not deep enough, they said it would only pick up if she had a bleed, she had an eeg last time we was in (3 weeks ago) said it was abnormal, but was not taking it any further unless she had an other fit(which she did a bigger one took two hours on and off. but i think the is as only started since this last fit

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eandh · 26/08/2007 20:19

sorry to hijack but trace could you look at this (lost your email address sorry)

www.mumsnet.com/Talk/1375/378021

needmorecoffee · 27/08/2007 10:29

That sounds likea CT scan Trace. They would pick up bleeds but not structural abnormalities or brain damage.
Good luck with calling the hospital.

Original poster
trace2 · 27/08/2007 14:11

hi all just a quick one am home for a shower, chloe was rushed back in this morning at 4 am, shes had an other big one and had to be brought out off, they phoned childrens hospital and they have given her meds for fits, not sure what they called only they start with p i thnk, ill tell more when i find out more

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needmorecoffee · 27/08/2007 16:06

Hope she's ok. Thinking of you.

BigBearistheBigBear · 27/08/2007 16:42

really sorry to hear this. have they given her phenobarbitone?

saggarmakersbottomknocker · 27/08/2007 16:45

trace - sorry to hear this, are they going to transfer her over to the children's so that you can get that scan? Can you be 'stubborn, stroppy mum' so that they do. Keep in touch. x

Phoenix · 27/08/2007 19:49

Just noticed you've posted on this board Trace, really hope you get somewhere soon and Chloe gets well. Also that other peoples stories on here help you all. You know where we are if you need anything x

Let me know when she's home, if you get time, and me and Lew will bob to yours one day this week before J goes back to school x

Original poster
trace2 · 27/08/2007 20:34

hi all thanks for thinking of us we are realy drained now, shes went to an othee this afternoon while we was on ward they gave her diaspan the one we were surposed to give her, but my god its made her scream for hours on end, i just want to help her.i feel so useless. BigBearistheBigBear yes i think thats it. i have kicked of about going to childrens hospital, but instead they phoned the pead they have referd her to, he as told them to give her the meds until we get app.

i feel so helpless, dont know weather i can cope,i have had to come home as theres noone for jack ( poor soul its not his fault) and dh can not cope with jack. at times like this i realy miss my mum.

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BigBearistheBigBear · 27/08/2007 22:14

You poor things. Just sending you lots of hugs.

My DD2 had seizures as a tiny baby and had to be given a "loading dose" of phenobarbitone to knock them out. They were caused by a bleed. Now she is 8 months she is not using one of her arms very well, but aside from that she is a happy smiley little thing.

Thinking of you, and hope the fitting is controlled quickly and Chloe is back home with you very soon.

Original poster
trace2 · 28/08/2007 07:15

BigBearistheBigBear so sorry to here about your dd, but glad shes ok now.

i just keep looking at the pic of chloe in my profile, and keep thinking will we get that baby back as she was since she started having them she seans to lose a littl,e of her self every time

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daisyandbabybootoo · 28/08/2007 08:17

Trace, so sorry about Chloe and about how you're feeling. I wish there was something I could do to help or something I could say. Sending you big hugs and I hope you get to see the neurologist soon.
More hugs to Chloe...she is a very brave little girl, and you are very brave too, doing a fab job coping with all of this.

Let me know if there's anything I can do, OK!Daisy xx

BigBearistheBigBear · 28/08/2007 08:25

Chloe is absolutely beautiful.

My DD seemed so so ill we couldn't imagine her ever coming home, so it is amazing what can be done. Was your DD well at birth?

You must be in shock at moment, and feel like you're in some kind of parallel, awful universe. I found counselling useful.

Thinking of you and your DD.

bumperlicious · 28/08/2007 08:43

Trace, I'm so sorry to hear that things are still so bad for your beautiful daughter. I really feel for you and your family.

You are doing everything you can for your little baby, but I understand that you feel helpless. If there is anything we can do for you let us know.

Glad you are on this thread as it sounds like you are getting some support and good advice. Big hugs to you and Chloe xxx

BadZelda · 28/08/2007 10:09

Trace, haven't got anything constructive to add as I'm no expert - but really feel for you and hope that you get a proper diagnosis soon. It must be really hard ;( zx

wannaBe · 28/08/2007 16:03

trace, have just seen this, so sorry Chloe's been back in again.

Please let me know if there's anything I can do, even if you just need to talk. Do you still have my mobile number? if not shout and I can let you have it again. but I'm always on the end of an email as well.

thinking of you all xxx

Original poster
trace2 · 28/08/2007 21:21

again thank you for your good wishers they realy help, today chloe had a lumbur punture, and tomorrow going by abarlance to a n other hospital for an other eeg, so may get some answers soon i hope still waiting for mir app but they hoping to push it forward. the pead we waiting to see is on leave at the monment but only for a few days so again hoping its soon.

chloe not had a bad day just a few stares and twichers but nothing big thank god, ill update more when i can, but she is still in hospital

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