my newborn has H I E
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- my newborn has H I E
28/4/08 11:01
26/4/08 09:33
hi everyone
seems ages since ive talked to you all,was on a bit of a downer last week and tired,ellies taken to waking up in the night despite being fed 24/7,she started with a bit of a winge then started to give a loud yelp the same one she gives when she pulls her tube out,i think shes realized that i get up to check her when she does that,then thats it we have to have a cuddle.
glad to hear eleanors feeling better and responding to treatment,nice to hear good news think it makes us all feel a bit more possitive,can i ask you what age did you first see the opthalomologist?
i see millies keeping you on your toes,hows all the appointments going inbetween the scares,my 17 yr old nephew has got shingles and has been told to stay away as he could pass on chick pox but has been contagious for 2 wks,though think ellies to young to catch it my 2yr old isnt,will have to wait and see!!
hi nikki,my ellie is classed as hie grd2,shes 19wks and they is doing quite well for her condi but your right docs wont commit to anything firm,regaurds the birth i must admit it still upsets me i dont remember any of it clearly so am thinkin of asking for a copy of the birth report.(i had a complicated breech and ellie was starved of oxegen) havent had a smile yet how about you?
anyway enough of me,speak to you all soon ,love and hugs xx
25/4/08 11:27
Hiya,
well it's kind of releif she doesn't have the pox, ha ha it was a big bout of eczema as well as madam being allergic to eggs she has an apple allergy!!!
hopefully mil was just being overcautious with Eleanor fingers crossed.
I have an idea you could always ask health visitor for baby recuss course I was supposed to be at one this week, but though Millie had the pox so kept away, boohoo!
i know oh work would be nice and then i think i wouldn't trust anyone to look after millie!!!!!!!!!!!!!!!!!
Hope all is well and hugs to you both.
xx
24/4/08 22:02
oh gosh poor little thing - chicken pox at her age
- i guess it gets it out of the way for her 
Eleanor is doing well - spasm free for 2 weeks - though mil thought she may have had one today, so we are on tenterhooks AGAIN!!!
i'm back at work again - it's nice to have the break tbh - especially as i've got the moodiest little madam in the world at the moment!
21/4/08 15:24
Hi, ha ha oh we were ok for a few days and now she has the chicken pox, it explains the high temeprature anyway, the spots are just coming out today, so fantastic again, oh it doesn't rain it pours!!!
Anyway I hope little Eleanor is doing well?
Oh my god I could'v sworn Millie said hiya today, he he been trying to get her to say it again and of course she's having none of it.
xxx
19/4/08 18:40
Sorry i've just messaged oyu too floyd - how's little Millie doing - i hope she is feeling better
18/4/08 10:17
Hi Nikki,
nice to meet you.
It's good this forum as sometimes when you feel really down I come onto here and I don't feel so bad, be happy and positive as when i'm 80 I want to have laghter lines not frown ones.
That's really good news about Eleanor, I know what you mean though my little sis baby is 6 months and is reaching and grabbing and Millie has just started but so what it just means we're more determined, little fighter children that's what we've got.
Millie gave me a fright on Tuesday, she was twitching and was just zonked and sick all day, couldn't keep anything down, so we took her to hospital in a n ambulance and the little terror was all smiling for the abulance driver the little flirt!!
Anyway, she had picked up this bug from my sis kids as it's doing the rounds so she had a drip in to keep her fluids up and temp down, but we're home now. I don't think I would've worried so mch if it wasn't for the hyperinsulism, as she will fit if she doesn't keep that down.
Anyway i'm blabbing on.
I hope you're all doing well and our little ones keep on smiling
hugs to you all.
xx
16/4/08 21:03
First off - hi Nikki it's lovely to meet you. I just wanted to reiterate what's been said - It sounds like you need to get some advise on your little one. If you feel he is getting left behind it's well worth having a chat to your GP or consultant if you have one - a lot of the work the physio does with eleanor is about getting her to start moving and increasing her awareness of her body and things, it may be that your little one needs similar help.
Good news on Millie- it's funny how your outlook changes - at one point you want people to tell you everything is fine - now we are all happy with things might not be too bad!
Good new on my Eleanor too - she has been much better since the weekend and her repeat EEG shows that the abnormal 'hypsarrhythmia' that was causing the spasms has responded to treatment! She is so much brighter again - we just have to keep our fingers crossed now. Similarly we were at the opthalmologists on friday - the consultant reckons there is still a chance she may develop a squint, lazy eye or other visual problems - just something else to 'wait and see about' .
Btw - i feel a fraud as my little one had a bleed rather than HIE at birth... i hope you don't mind me butting in .. i'm finding it really helpful to post on here.
16/4/08 20:04
Hiya
Welcome - glad you found us as I've got a lot of support from this website! My lo was also late to play with her feet, roll over etc but she is doing these things now although later than other babies. The important thing is not to compare if you possibly can - I know its easier said than done. I got upset the other day as my friends 7 month old baby was doing things my lo can't at 10 months. However, I get so excited when she does do something new I have to phone everyone and tell them!!
Are you seeing a consultant or physio? They are very cautious and as a lot of us have said on here, they really don't want to talk about the long term with you. I can understand this to some extent as they can't predict the future but it is very frustrating when you want to know what to prepare for.
Let us know how your lo is getting on
xx
16/4/08 12:44
Hi,
Would you girls mind if I join you, never thought to come on this fourm before. My little boy was also born with HIE (grade 2). Not entirely sure what grade two means as like you all seem to experience doctors don't seem to want to commit to anything they say just in case.
My little boy in now 23 weeks old and appears to be getting left behind by other babies his age. They all seem to be rolling over and grabbing their feet. Liam kicks his legs and waves his arms but thats about it. However at the same time I don't want to start looking for problems if they're not there. I'm a first time mum so not sure what to expect.
I could also do with a bit of advice on how to deal with the birth as still find it hard to think about.
Sorry to intrude, wasn't sure whether to post on this thread or make a new one.
Hope you and your little ones are doing well.
15/4/08 21:04
Hiya Floyd51!
Glad to hear that Millies condition improving - my sister has epilepsy (recently diagnosed at 30!) and leads a perfectly normal life - especially now they have sorted out her medication. I've also heard about babies brain cells regenerating and also that they can make nerve pathways even where there are areas of damage. It's just about stimulation and sheer determination - something all us Mummy's on here have!! It's so annoying that they won't give you a prognosis. We haven't really been told what to expect either - the only person that has made any sense to me was one of the nurses in intensive care who told me that Anya would 'just be a bit clumsy' - that gave me so much hope!!
Hope Millie is doing ok
xx
14/4/08 11:12
Hi everyone,
we got the results of Millies EEG and they said while both sides of her brain are aysemmitrical there has been a slight inmprovement on the right side and there have been no signs of seizure.
So it tells us that she has improved slightly but can't give a prognosis, ha ha well they wouldn't as we're suing the original hospital where I gave birth{ooh tiptoe tiptoe around us}!!!
A man I used to know had the severe form of epilepsy and he managed to get a job and has 2 lovely kids, I know its a blimmimg long hard slog for all of us, it just means we love our little ones that little bit more as they need us. I am having a bit of a problem at the moment as Millies meds for the HYPERINSULISM is making her extremely hairy and people seem to be staring so now I say I know hasn't she got loads of hair and they stop looking{would like to strangle small minded idiots}. but hey ho, just have to get over it.
I don't know if any of you have heard about this but hope is a wonderful thing, apparently children that suffer trauma at birth sometimes their brain cells can regenerate, there's always a glimmer of light at the end of every tunnel.
Keep your chins up yummy mummies and stand tall and be proud.
12/4/08 08:41
wow you have had a week havent you and by the sounds of it youll be the one zonked out next week,good luck wiyh everything,will be thinking of you ,its a lot to take in in one go and come to terms with.xx
how did the results of millies eeg go? could they tell you much more.
ellie had a physio assses this week which went quite well,got some more ideas for play and positioning,she looked like she reached out for a toy yesterday*** alt="" src="http://my.bounty.com/smiley/msn/regular_smile.gif" />in between pulling out her n g tube (twice this week) but cant keep mitts on her all the time ,she needs to be able to touch and feel things to keep stimulating the brain.
speak to you all soon
7/4/08 20:34
ps she's still getting the odd spasm - but much much better. Problem is she's zonked all the time - it's dificult to do 'physio' when she's asleep all the flipping time!
7/4/08 20:33
Good luck with the EEG tomorrow.
Basically the diagnosis is the intracerebral bleed and Wests syndrome/infantile spasms. They have told us to expect learning difficulties and there is a hgh chance of her developing other forms of epilepsy when she's older - upto 50% chance of lennox -gastaux
a particularly nasty form of epilepsy) when she's older. So the future is a bit scary. We are trying to look on the bright side - there are cases of kids who have horrible diagnoses and then are utterly fine in the future and are mainstreamed schooled and stuff. The best we can do at the moment is keep our fingers crossed and do anyting that we can help her get there. I have an assessment appointment at a conductive education place on monday to see if going there would be useful.- that's in between the 4 hospital appointment days, the physio and an epilepsy nurse coming out to see us - all in the next week!
7/4/08 15:48
Hi, So sorry to hear about Eleanor, have you ben given any other diagnosis as of yet??
Remember that we're mums and we're strong and tough even though sometimes our hearts are breaking and we want to be like John Coffee from the green mile, by that I mean we want to take their pain away.
We get the results tomorrow for Millies EEG.
I find this forum has really helped me along and it helps a lot to let off steam and have a rant, i've every thing crossed for you.
xx
6/4/08 19:54
Hiya
Sorry to hear your news - I suppose at least you know what has happened now. Have they given you any prognosis yet? I hope they have managed to control her spasms by now.
Hope you are both doing ok
x
5/4/08 00:59
hi there
Been a bit of a tough week. We've got all the resultsin now .
Eleanor had a large bleed in the right side of her brain 'around the time of birth' - so that answers that question.
The fits are unfortunately infantile spasms for which she is now completely dosed up with steroids and vigabactin. It's the start of a very long journey methinks. Gotta go - cos i'm writing this really late.....
How are your little ones gettting on>? How did millie get on with her EEG ?
Eleanor was a star - hated the gluey things but kindly did a fit for all to see- just what the doctor ordered!
Talk to you all soon - and hugs.
Nat.
1/4/08 10:20
Hi, sorry to but in on your conversation, I have a little girl Millie who has CP and hyperinsulism{genetics}.
Millie was born fitting at birth due to lack of oxygen and low blood sugars I have spoken to Abunge before{how is Anya?}. The physio thing seems to take a while to get going but once it does it really does, we have now been given a corner chair for Millie to aid in he strengthening her back as she is just getting strong neck muscles now and is lifting her head off the fllor she's 101/2 months.
We were told after she had MRI at 5 days old there was no function on the left side of her brain, but I find her to be very happy and giggley oh and a bit of a diva!! We go for an EEg tomorrow then get the results after that.
I guess the hardest thing for all of us is if we have close friends with babies at the same age and they seem to be developing a lot faster than our lds.
I wouldn't change Millie for the world as she's such a happy little baby.
Good luck and I hope we all get what we're wishing for.
T
1/4/08 10:04
hi hows little one doing, how did the EEG go?ellie was put on phenobarbital when she started fits after birth,they have kept her on it as they want her to outgrow it and hopfully wont fit again. it must be scary for you ,fingers crossed, thinkin of you.
thanks for tips on physio, her next assesment is next week,so will see what they say then.
Hi Angie, good to hear from you, ah yes they're sent to try our love and patience sometimes!!
Millie has discovered if she stiffens up then i pick her up as i'm not sure if it's doing her harm or not.
Well i must dash going for chinese torture now, dentist to get a tooth pulled out!!
hugs to you all from millie and myself, p.s millie didn't smile until she was 3 months, hope that helps.
xxxxxxxxx