been upset most of day told our dd posturing is not reflux so had the bl''dy operation for nothing

[trace2]

been to see the gasro pead today ours was not there so saw a diffrent one, and when we told her after fundo op shes had an episode lasting 12 hours she asked what happens then she says it dont sound like reflux to me, and it carnt be as shes had an episoes since op. we told the other pead time and time again it was not reflux and showed him videos of her, why didnt he listen i know feel like we put dd through a masive operation for bloody nothing.

and we still dont know what dd is doing or why, the amberlance men say they never seen any thing like it. i am losing my trust in the peads

[feelingbitbetter]

Oh I am sorry. I was thinking about you today strangely enough, was going to post to NMC to see if she'd heard how you all were. Poor DD, poor you. I am gutted for you. After all you've been through....

[trace2]

i just want to know what the hell is up with her? and thank you for thinking of us

[needmorecoffee]

I was thinking of you too and was going to text. Great minds n all.
I'm so sorry you still don't have answers . I'm assuming the tube is also for getting calories into her? How is it now?

[TotalChaos]

sorry that the fundo doesn't seem to have done anything. can you be referred on to a bigger city hospital where they are more expert like Great Ormond St?

[trace2]

she now weighs 16lb again so yes we needed the feeding tube also been told today they may have to thinken her milk as she carnt take any more milk her tummys realy tiny have you found out yet whats happing? with diet or tube?

[filz]

well its good she is gaining weight, so at least its not for nothing.

have you filmed her having an episode?

[trace2]

we go to sheffield childrens its surpossed to be good, but iv said to dh today i might send a video to Great Ormond St? i just dont know what to do i need to know if they are damaging her andseeing her likew this for so long each time takes a bit of life away from me

[needmorecoffee]

still waiting for tube date. Keep chaging mind when she has a good eating day and then deparing when she gaks on her meds and doesn't eat all day.

[trace2]

nmc tbh the tube is ok now ( saying that i carnt do it dh is~)

[BriocheDoree]

Trace > sorry you are having such a tough time and hope they get to the bottom of DD's problems soon. Will be thinking of you.

[Saggarmakersbottomknocker]

Sorry things are no better trace. I think you should go ahead with getting a second opinion. You are entitled to do that and you really have nothing to lose at the moment do you?

[Blu]

Trace, I'm really really sorry to hear this.

If they don't know for sure what is going on it is more than legitimate to ask for a second opinion, and in fact DS's consultant actually said that she would like to have a second opinion fom GOSH before we all made a final decsion, and she set up the appointment for us. She specialises in Paed orthopaedics, but the impression I got was that it is not uncommon fo consultants from differnt hospitals to work in collaboration with GOSH.

I hope that those calories do the trick - thinking of you.

[trace2]

thank you again the exta weight wont makeany diffrence to her doos thats just cos shes v under weight its the other bit of op they need not have done the big one tieing her tummy uo s shecarnt be sick, even though shes not sick unless she gets d&v bug

[Woooozle100]

trace- sorry to read of the trouble yr having. What exactly does yr dd do when during these episodes?

We saw surgeon re g tube on mon and he near enough talked us out of it with talk of risks Seemed to be pushing ng tube as better option for us. Feel really confused now

[idontbelieveit]

trace2, just wanted to say so sorry you're having such a hard time. She seemed so well back in August at the picnic. thinking of you.

[trace2]

DesperatelySeekingSanity so sorry your dd is having reflux and are they now considering a fundo? and yes you have given me comfort telling me this! seen chloes nurse today she to says its better have both as if you just have fundo done you get gas causeing pain where having both done as its benifts as you can release gas from her micky. when wewas in hospital a child just had fundo done he was screaming in pain due to gas.

ejb1976 the g tube is working i woundnt put any one off having it done i have seen many children have this done it works! its me who carnt deal with cleaning caring for it dh does it

idontbelieveit thank you

as for dd posturing its not nice its like this her head and torso go in to a banana shape to the right side ,the rest of her body is floppy she then goes white, then grey and sweaty and while this is happening shes carnt smile, frown, cry, walk or even move at all and its like shes not with us they even put a canular in while she was like this never flinshed, blinked or any thing which i think means shes unawghere whats going on round her. and she stays stuck like this for hours on end this last one was 14 hours, where the one befor that was 3 days on and off. they dont know how to treat it when we take her to hospital

[needmorecoffee]

Sanity - how common? dd is getting tube but currently doesn't have reflux. I have been told to give feeds through the tube little and often as the sheer amount of liquid can lead to sickiness and reflux.

The posturing sounds to me like dystonia or seizure - especially if she is unaware of what is round her. I wish I could come up and give your doctors a slapping! How can they leave a child like this suffering for months
If its seizure especially.
Does midozolan or diatstat make it stop?

[DesperateHousewifeToo]

Trace, I agree with needmorecoffee, it does sound like something neurological.

Have these episodes been investigated from this angle?

I have no expert knowledge but used to specialise in feeding as an slt so read your thread.

Good luck

[idontbelieveit]

oh trace that sounds so awful. Do you think it might be worth getting a second opinion at LGI?

[trace2]

when she first started doing the posturing at 3 weeks old some times her eyes would roll up but not always, they gave her peralahide and lastapan and both worked to bring her out of them, she would then sleep it off our pead at our local hosptial thinks they are seziures but the neuro at children dont think so and our pead can not over ride the neuro from childrens myself i belive they are seziures and told them what i think, but cos the neuro never heard of any seziure like it he wont commit tbh i dont want to just say they are but those meds worked

[glitteryb6]

Trace, sorry to hear your dd is still having problems, my ds has dystonic cp and when he was little he would "banana" to the right but he would stay stiff for anything from a few seconds to 10 mins or so.
He takes, among other things, Nitrazepam and is on co-careldopa and rarely does it now.

Ds is having his button and fundo done on wednesday, getting a bit apprehensive now but know its for the best!

Can i ask how long did you stay in hospital and what is involved in the care/cleaning of the site as this is also one of my worries.

[Woooozle100]

Thankyou for sharing info. Poor love. It sounds awful.

has she had an eeg? Do these episodes occur mostly when she is unwell?

I wondered about her episodes cos my dd has had countless odd turns - never really got to the bottom of it. She shakes, eyes roll and her arms look purple-ish from elbows down. Often she moans but isn't really looking at us. 3 eegs have been inconclusive (1) /no epileptic activity (2. Is not on medication.

She does have a problem with low blood sugars so some of the time these episodes are linked to that (she does go sweaty but cold as well) Polycal supplements have helped a bit. She is being investigated from metabolic side.

Can empathise with worry and frustration of not really knowing whats going on. We keep ending up in hospital with docs panicking about meningitis

[trace2]

i am glad i started the thread now as we seem tobe helping each other

glitteryb6 yes you can the pead wanted us out two days later,but chloewas still on morohine and nurses said no so was in a week in end to end back in foe an other week day after due to infection.plus we needed to do bowles feeds, the nurses cleaned the first day and did feeds the then second day we did while they watched, i was fine to start with untill it got infected now dh does it as i carmt look at it.we still not learned how to chage micky but we can change water in button
DesperatelySeekingSanity qwe have seen everyone to movment disorders noone wants or seen any thing likeit for so long anyway.

ejb1976 so sorry you going through some thing we dont know about! yes chloes had 3 eegs first one was day after a posture that one was abnormal, the other 2 was ramdon and clear,but been told it can be clear and have seziures. shes also had an mir as she was losing her heart beat when i was in labour and was going down for a emurgency c s but she came on the way and cord round her neck 3 times but bwas clear. but since we have had 3 people ask us if she as cp? one was a ss worker the other a nurse and only last week went to a&e and an other nurse said have they told you she as cp i said no but she can now sit unaded was late 10 months, and can now walk at 16 months and her mir was clear so its carnt be, she said i think shes cp dont be surprized if they dx her with it. so i told our nurse she went quiet like she knew some thing and then said we need to make a child in need meeting, where all the peads we under and physio and salt get togerther and us and talk about chloe! our salt say sheas a tung definstion of a cp child, no idea what that means?.

sorry its long i just need to tell ive had enough i want some answers then maybe we could get on with our lives and deal with it if possible