my newborn has H I E
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- my newborn has H I E
30/3/08 20:43
30/3/08 10:34
i'd just added another post before, but i thought i'd add it on here too...
my little one started having fits on monday - the look to us and the doctors like infantile spasms but we've got to wait till tomorrow for an EEG and then look at how to treat it . If you are interested in what it looks like there are some good vids on you tube. It's really knocked us for 6 unfortunately and it's heartbreaking this weekend watchng her do it numerous times a day and knowing something needs to be done but we can't do it yet.
Anyway i'll let you know how we get on. Talk to you soon.
30/3/08 10:31
i'm really pleased for you--> it's must be amazing to finally get some good news!
29/3/08 07:25
hey thats great news ,bet you were pleased and left with a smile on your face.she looks sweet in pic.does she have physio much and does it help? ellies still being assesed at the mo ,also doing massage which she seems 2 enjoy,think it relaxes her.
28/3/08 21:32
Sorry - meant to add good luck with the mri results
xx
28/3/08 21:30
Some good news for a change!!! Consultant amazed at progress so doesn't want to see lo again for 4 months and then assess fine motor skills once she can do more. I must say I don't notice her stiffness as much although I know she does have problems using her hands at times so we'll just have to see but is so much better than they told us originally. I really do think they are very negative to start with as they just can't be sure with brain injuries. When I first asked about walking, the consultant sucked his teeth and said she might have great difficulty. Now he's talking about her doing it although it might take her a while to learn.
I hope everyone else ok
xx
28/3/08 09:07
hows things going ? how did it go on thurs ,anything new. you never no what they are going to say do you,
28/3/08 09:02
were you allowed 2 go with her 4 scan,we wernt 4 ellie as she was still in spec care. have u got 2 go back 2 hosp 4 results,fingers crossed 4 u. when we went 4 physio we were told about tummy time,we use a rolled up towel under her chest 2 raise her slightly 2 help with her head movement,she tends 2 prefer her right side so we have 2 encourage her 2 look left, back 2 physio in 2 weeks 2 see how shes doing.
25/3/08 22:29
we had our mri today -gotta wait 7 - 10 working days for the results! still no news is good news and all that....
25/3/08 20:35
How are your lo's getting on??
We have our next appointment with consultant on Thursday so not looking forward to that at all. Can't see much change myself but not expecting good news knowing what these bods are like!
xx
21/3/08 09:40
just going back to what you said about professionals tending to be 'negative' about the outcome - having read various forums and everything it seems that that is really true. Good luck with the ear and throat doctors - thinking about you.
21/3/08 09:37
we have the mri scan on tuesday - thank goodness - I think the consultant got a bit annoyed we hadn't had it already!
We had physio on Wednesday. It feels brilliant to actually have something to do. She did a good assessment. Her right side is fine but her left side is functioning at the level of somewhere below three months ( she's seven months now). She hs said to play with her with her legs lifted up to take pressure off her arm and to encourage her awareness of the left side. It's really funny but it really does seem to help her to open her hands a little. Also she suggested ways to help her on 'tummy time' - something we dread! We are going back next week for some help with sitting and holding her to encourage her left side. It also helped me feel less like a 'bad mum' as the things that she has suggested aren't entirely obvious, so i don't feel like i should have been doing 'em already.
Me and my hubby are starting to feel as though we are coming to 'terms' with the fact that it's harder for eleanor to do the things most babies do normally, but we are determined to help her to do the best that she can - the only piece in the puzzle that's missing know is why - fingers crossed that the MRI will help us with that....
20/3/08 19:32
hi ellies 3 months now,had a checkup this week which went quite well,shes going to be refered to another couple of specilists for her eyes and throat. did you have the scan this week,how did it go and yes a magic wand would be great but as we cant have one then im just going to enjoy ellie and just take every thing else as it comes
12/3/08 21:11
Hiya
My lo was also late to smile - I was really concerned and then the HV said she could see a smile even though it wasn't really full on. She started to laugh really early though and hasn't stopped since which is lovely! She's got a great sense of humour which I hope will get her through anything!!
We're still in limbo as they don't usually diagnose the type of cp that is likely until a year old so we still have some time to worry. It's horrid not to be really enjoying her babyhood but what can you do? She's starting to get a bit of a temper though which I love - all these things are great as far as I'm concerned!
Hope all's well with you all on this forum - stay strong
xx
11/3/08 15:38
how old is your little girl angie?
I just wanted to say hello really,
My little girl is six months. She was fine when she was born but is now having problems with her development - we are due to have an MRI some time in the next week allegedly. It would be so nice if we had some magic wand and could see where they will all be in five/ten years time - at least then we could 'deal'.
Eleanor was late smiling and looking at me, but gradually these things came and now i know whatever else she loves her mummy and her mummy loves her more than all the world.
11/3/08 11:07
hi hows things,ellie seems to be doing quite well she has a checkup next week so i ll see what they say.she still hasnt smiled she kooks as though shes going to then yawns instead,she sort of smiles with her eyes if that makes sense and her eyes seem to focus a lot better now so hopefully these are good signs.
22/2/08 16:01
Hiya
She's doing really well thanks - her basal ganglia was damaged - moderately so we were told cp was a risk. She is progressing well though and is having physio to support her development. It seems so long ago since the awful trauma of her birth and I think we're starting to get on with life again now. I think they are very cagey about what they will tell you about the likely outcome with brain injuries as I've been told so many children exceed expectations. I've also been told they err on the negative so their progress is usually a bonus. I really hope you've heard something more useful by now.
How is your lo doing?
xx
21/2/08 13:41
she had the m r i scan and others while in s c b u they said the damage was global and quite extensive but they seem so vague on her progress,they just keep telling us not to hope for to much,its so frustrating.hows your little one doing,how is she progressing?
18/2/08 21:56
Hiya
Sorry you've had such a rough time with the birth - its very scary I know. My daughter (now 8 months) had HIE at birth with seizures. She was in intensive care and special care for 2 weeks and they did an MRI scan to find that she'd had a brain injury due to the lack of oxygen. A brain injury can mean a risk of cerebral palsy or other complications. Have doctors suggested doing an MRI? Have they given you any more information about what they expect? If I can help in any way with info - I will.
Hope you hear more positive news soon x
17/2/08 15:25
after a difficult birth my daughter has H I E (birth asphixia) ,any advice on what the future holds,doctors are rather negitive.
So sorry to hear about the spasms - how scary for you. My lo had fits after she was born but it happened in ICU so I didn't see her having them. She was very jittery before this though and it took her a while before this calmed down. They gave her something called phenabarbatone (Sp?) which stopped the seizures. Not sure if this is what they will do with your lo. I hope you get things sorted out soon though as I know it's horrible being in limbo.
Angie - we do have physio - about once a month and I think it is helpful although we only really have a few main exercises to do. I think its really helped with her muscle tone in her back as I do a lot of kneeling with my lo and her back is much stronger. She went from not being able to support herself sitting up at all at 6 months to sitting unsupported by nearly 9 months. I think we'll be going back for a while as I don't think walking will come easily to her. It's a long haul isn't it!
xx