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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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Original poster
trace2 · 28/08/2007 21:22

oh found out the meds its pyridoxide vit b i think do ant one know if it works?

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Phoenix · 28/08/2007 21:40

Is she off to Sheffield childrens hospital Trace? It sounds like you're getting somewhere. Glad she had a good day

daisyandbabybootoo · 28/08/2007 21:57

i'm glad Chloe had a better day today Trace. It sounds as though you are in good hands. fingers crossed the meds start getting things under control quickly and that you find out the root cause of the seizures soon.

Take care of yourself. xx

Original poster
trace2 · 29/08/2007 06:57

Phoenix no its hallamshire for eeg, but resluts go to childrens, thanks daisy

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Original poster
trace2 · 29/08/2007 21:03

hi dd had eeg fitted 4, 24 hours today, she was so worked up she had just as they finished puting probes on! then came back to barnsley to be videoed if she as a fit well she as had a few staires up to now but we hope they pick it up as one of probes came off and nurse at barnsley just put it back on ( hope its in write place) she goes back tomorrow for them taking off.

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Phoenix · 29/08/2007 21:13

How are you, dh and jack doing? I really want to come see you and chloe but i haven't got anyone to have lewis on a morning

Original poster
trace2 · 29/08/2007 21:22

i understand but dont bring lewis, theres ill childen with things he can catch

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Original poster
trace2 · 29/08/2007 21:24

but i wish we did get some visits from some one to take over chloe while we have a coffee

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saggarmakersbottomknocker · 29/08/2007 21:28

Hiya trace (hug) - wish I was closer. It's so hard being at the bedside all the time especially when you have other children. Do you have family nearby?

I'm glad the hospital seem keen to get to the bottom of all this now.

Try to enjoy Chloe between all the worry. x

Original poster
trace2 · 29/08/2007 21:34

hi yes my mil lives 5 mins from hospital but she works until 4 ish, but dont come till 7 45, then its kick out time at 8, they do it on purpose, and my family is bad too

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Original poster
trace2 · 29/08/2007 21:36

the weird thing is they are getting more often since her 8 weeks injection

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saggarmakersbottomknocker · 29/08/2007 21:38

Oh it's a shame they're not being more supportive. Are you sleeping at the hospital? It's not very peaceful I expect.

Original poster
trace2 · 29/08/2007 21:46

no jon is he dare not leave her and he can not cope with jack, but we go about 8 in mornings come home about 8 30 in eveing

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needmorecoffee · 30/08/2007 13:15

TRace. We spent 36 weeks in hospital in DD's first year. DH would spend the night then me and the other 3 kids would arrive about 9. DH would then go to work and come back about 6. Other kids went nuts (one has aspergers) but in-laws would never help out watching them.
Hang in there.

FioFio · 30/08/2007 13:18

This reply has been deleted

Message withdrawn

Original poster
trace2 · 30/08/2007 19:23

they didnt take chloes probes of so she got them on 4 an other 24 hours, it only showed two spikes but not conclusive again, but an epilepsy nurse came to see us today, they think she as multi some thing, cos she having diffrent types of sezures. so waiting for tommorrow again now, ive had to bring ds home hes got a temp and not very well, i asked dh if he would bring him home and i stop tonight but he wont leave her

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BabyMadandBIGbump · 31/08/2007 17:39

Oh trace I cant even begin to imagine what you and your family is going though chick, I do hope they get to the bottom of it ASAP! You, your DD and your family are all in my thoughts always, Babymadxx

Original poster
trace2 · 31/08/2007 20:11

oh god what a day dd was surposed to go to other hospital to take probes off, ambalance never came so nurseing staff phoned the time was wrong so was to late to take dd, so they was coming to us in afternoon, but chloe started to have a sezure( not usual ones) i didnt like her eyes could not rouse her, feched nursing staff, they didnt have a clue she was clustering in and out, they told me she was now out of it, but i know she was not.
how do you tell them its not normal what she was doing it my child i know her? them she sort of come round and went to sleep, them 10 mins later a lady came in to the room and droped keys on metel chloe didnt even flince, i know them tried to wake a few times, she did finaly come round, but i went to phone dh told him how i felt like they have no idea two of nurses said they thought she would shake all over with them. i have explained to pead who came round, and he said its very difficult for them as we dont know whats happening with chloe( i am losing faith in them now.

there as been a few misstakes they found chloes referal letter to day for mir ( not been sent from the 21/08/07, also they got on her notes shes allergic to daiazpam( we not told them that) so tol,d them after how she reacted to it, but notes say she did befor shes ever even had it. them lady who came to take her probes off, said how many times shes been jerking all over, again she as not. i am really thinking of asking if she can go to an other hospital, please some one tell me am not being paronoid?

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twocutedarlings · 31/08/2007 20:24

No way are you being paranoid she is your baby and like you say you know her best, have you brought is up with them about all the cock ups they have made?

Have you asked if she can be tansfered to the SCH, (i live in S so i totally understand why you would want her there).

I am so sorry that you are going through this,its so unfair, your DD is beatifull Btw.

chonky · 31/08/2007 20:26

oh trace, I'm so sorry that you're having such a tough time of it. Is Chloe at a Childrens' Hospital?

saggarmakersbottomknocker · 31/08/2007 20:32

trace - sorry this is so tough for you. The paed has admitted that they don't know what's happening with Chloe. I think that you need to be firm and say that you want her seen at the children's hospital as a matter of urgency. They need a more specialist opinion and she needs that other scan. They can do that referral over the phone - they don't need to send a letter.

Otherwise - do you know the name of the neuro at the childrens? Does he do and can you afford a private consultation with him? If so call his NHS secretary, get his private sec's number, call and explain the situation. You shouldn't have to fight this hard but IME if you shout the loudest you get seen the quickest.

BigBearistheBigBear · 31/08/2007 20:33

I'm so sorry Trace2.

You are not being paranoid. I'm sure the hospital staff want to do the best for her, but they have many other babies and children also demanding their attention. You know Chloe best, and I really think you need to make a fuss if you feel she is not get the best treatment.

It sounds as though her case is unusual, but could she be transferred to a bigger hospital relatively nearby? DEMAND to see a senior doctor and be fully briefed on what is going on, and don't let the nurses fob you off - they often don't have the full picture.

Original poster
trace2 · 31/08/2007 20:41

sorry just need to have a cry, god i now the staff have been good with us! but they have no idea whats happening with chloe ive left dh there told him to watch them, i feel like they traeting us like we are nurotic, even some of docs have seen her sezures and know there not right. am so scared they will leves her to long and cause her damage

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Original poster
trace2 · 31/08/2007 20:44

but its the weekend i can not phone dr ritty secertory till monday now

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gess · 31/08/2007 20:49

You need to see someone more specialist by the sounds of it, it all sounds very complex. Hospitals always appear to me to be teribly unorganised places, so don't hesitate to keep on asking.