* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6612 times)

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Offline Peacelilly

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Anybody special needs after nicu brain bleeds?
« Reply #30 on: 31/12/16, 09:49 »
Tincan,  that's right I have PM you.
Maybe Chunks was having a tantrum in his sleep, woke up and it continued awake. I have seen my little one do something similar. My boy had a phase of biting which we stopped by me saying "no biting just kissing" and smothering him with kisses. He is now hitting instead, I do think it's extreme frustration and also impatience. He knows not to do it and is starting to control it as he raised his arm to his niece who is a similar age and then stopped himself.

Hi Surfer girl, nice to see you on this thread. I can't believe the LA have refused the EHCP plan even with the recommendation from the Ed Psych. It's great that they have identified she is making progress and a real positive but surely she would make more with it in place and it is in her best interest. I have heard that often appeal is required before they say yes. It's a shame we have to fight to get it.
We have Ed Psych assessment in February. It's quite possible I may be in a similar situation. My boy does have physical difficulties so hoping this may strengthen his case.
Surfer what support do you get with her vision? We have no intervention from VI team and have been told this would happen in school.

Our ROP consultant for my sons eyes has retired and his care has moved to the local children's hospital who have suggested a GA to check his eyes. I think this extreme do you? It was really difficult for them to do the assessment because he was upset having waited for 2 hours in a very hot hospital. I felt like they took the easy option. And even mentioned in the follow up letter it's because of his neuro disability which is utter nonsense. I have asked for a second opinion. I am not comfortable with GA if entirely necessary.


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    Offline RB76

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    Anybody special needs after nicu brain bleeds?
    « Reply #31 on: 31/12/16, 15:08 »
    This is a great thread, I'm glad to be part of it and hope we can all continue to support each other as we approach school age and beyond.

    SurferGirl, yes we have been on the same threads before and I know we have had a similar journey to get to this point. I'm really encouraged that your daughter has come on so well with her speech recently since that's really our daughter's biggest issue. She has a few words and can make a lot of the phonic sounds (she's knows all her numbers and letters, can put them in order etc, but can't say many of them at all!). It's encouraging to know she may catch up in her own time. It disgusts me that you have had a problem getting a EHCP and I suspect we will have a similar issue with that as I know they are very difficult to get especially where the need is more arguable. I do keep trying with Makaton but she just isn't interested in it. She will copy the signs and think it's funny but in terms of using them to communicate, not really getting anywhere! That's not to say she doesn't tell us what she wants in her own way, she finds one way or another (personal favourite being TV remote shoved in my face lol)

    Vision wise we have been fortunate, we just had a check up yesterday and no glasses currently needed, she had ROP Stage 2 in both eyes and does have a squint but it appears to be cosmetic and will eventually be corrected with a minor operation.

    Tantrum wise that is a difficult one TTC, does Chunk speak well? Is it him trying to communicate his frustration? We have occasional melt downs and I am sure there would be more if it wasn't for the fact I am with her pretty much 24/7 and therefore know what she wants and needs all the time.

    Happy New Year to everyone x

    Offline Surfergirl

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    Anybody special needs after nicu brain bleeds?
    « Reply #32 on: 31/12/16, 15:55 »
    Hi ladies,

    Peacelilly - she has support through the VI Team and a teacher for the visually impaired visits us at home and now at nursery. She sees the hospital optician, orthoptist and ophthalmologist. She had grade 3 plus disease which required extensive lasering. She was very lucky, we have since been told that she would have lost her sight. They had to sacrifice her visual field to save her central sight. She struggles with stairs, changes in surfaces etc.... The central vision in her right eye is pretty good. She does struggle with visual processing. We have been told this is common in premature babies. We saw the Opthalmologist recently and he had a good look in her eyes and said there is a structural defect to the retina in the left eye, which is causing the problem. He's never mentioned looking under GA. I'm not surprised you wouldn't be happy with that.

    RB76 - Lucia's speech really started just before the summer. Last March she had about 3 words and now she has virtually caught up with her peers. Going to nursery has made a difference. She will still sign if she can't make her understood though but that is very rare! It has come along so quickly! We were told that the main thing is the understanding and they worry more if that is lacking.

    As for the EHCP process, it's frustrating to say the least but I keep plugging away and I hope they will back down eventually!! The comment they made about determination annoyed me. I was told that at a meeting I went to with the LA when I told them I wished to appeal their decision. The Assessment and Provision Team Officer told me and my response was that of course she's a determined child, without that she probably wouldn't be alive!!

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #33 on: 31/12/16, 18:32 »
    Gosh surfergirl that is really shocking that no EHCP has been put in place, wonder how many kids fall through the cracks?? Thank goodness she's lucky to have you behind her as that will definitely have an impact.

    So far ROP is looking ok, one has astigmatism but not enough to need correction with glasses thank goodness and so far they have had about 9 appointments with both the optometrist and ophthalmologist and will be seen every 4 months until they are fully satisfied so happy they dodged that bullet as the cognitive issues and chronic asthma are more than enough 😝 have to say the preventer inhaler is marvellous despite my fears and protests over the long term effects of it.


    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #34 on: 6/01/17, 23:02 »
    Surfer, my boy had plus 3 disease and lasering.  ROP was the one thing we thought we had avoided but sadly not wracked up 4 surgical procedures before his due date. He is very short sighted, squints and nystagmus probably due to hydrocephalus.  He goes very close to read things. He seems to manage but I am concerned for the future. I am guessing they want GA to get a good look. However we have an appointment tomorrow to get a second opinion to see if it can be avoided. We don't have VI team involved yet?
    I will keep you all posted.

    Educational Psychologist visit looming too in a couple of weeks another worry.

    The boy is back in nursery next week, just as we have got him well from a 3 week period of illness and nasty cough it will start all over. I find his recovery period is much longer than other kids, naff preemie immune system.

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #35 on: 9/01/17, 15:22 »
    Aww Peacelilly that's so rough he's dealing with sight issues too 😢 I honestly was very naive prior to dealing with all this  ^idiot^ but would rather have them than not in spite of all that has to be overcome, sure we all feel this way on here at times? The guilt does eat me up though esp when they are put through test after test must admit.

    I'm cautiously optimistic with both mine as they seem to have really taken off in the last couple of weeks and definitely speech and communication is starting to happen  ^pray^ I believe when it happens I'll have 2 very different little boys as that is their main stumbling block as everything else although delayed is resolving.

    The dreaded sickness episodes are relentless I agree, mine spent couple months passing all sorts back and forth I almost pulled the plug on nursery but with their issues not realistic!!

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #36 on: 9/01/17, 15:28 »
    Ps very glad you're getting ed psych sorted out very soon ☺ it's another piece of the puzzle in place (in fact probably most important piece) as carries the most weight in terms of their future so fingers x'd they will pass great resources your way x

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #37 on: 10/01/17, 23:24 »
    Blondie, my little man hasn't uttered a word yet. He makes lots of noise and is understanding seems quite good but it is a major concern. And probably the most likely to effect his schooling.
     I would also just love to hear his little voice

    It's nice to hear you're optimistic about the boys but whatever the outcomes for our little chaps we will love them all the same. I know I am always going to wish life were less challenging for him (and me at times) but that isn't going to go away and comes in waves

    We saw the eye Consultant on Saturday. The whole experience was much better but they would still like to go ahead with GA. I feel they did explain the reason for this - this time and I feel a bit more accepting. They need to get a good look at the back of the eye as scaring from ROP surgery can cause complications on the retina. They can't get a good look as my son gets agitated, he was better this time but still  not compliant enough for them to check in detail. He is 3 though and never still.

    Not entirely comfortable with it but I would also hate something more sinister happening with his eyes and not having being checked. Double edged sword really.
    They think his sight is only good for about a third of a metre and that's with his specs on.

    Worry never stops!

    Offline Surfergirl

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    Anybody special needs after nicu brain bleeds?
    « Reply #38 on: 11/01/17, 18:53 »
    Hi all,

    Peacelilly - hope the eye exam under GA goes ok. I would definitely recommend the VI team. Lucia's lead professional is a Teacher of the Visually Impaired. She has been invaluable in advising nursery and ensuring the correct people are involved. So, we saw the Orthoptist yesterday. She has nystagmus, because the vision in her left eye is so poor but the right eye is pretty good. The plan is to ensure good development of the right eye as the left is unlikely to get any better. Lots of info about the cerebral visual impairment. Lucia can become overwhelmed with too much visual information and almost 'shuts down'. Plenty of advice/strategies to help her cope and we are waiting for OT for SPD.

    The nursery bugs are awful. Lucia is on permanent inhalers and is still quite wheezy. Constant snot etc..

    EHCP saga rumbles on. Nursery are concentrating on assess, plan, do, review. Despite a very strong recommendation by the Ed Pysch for a plan, the LA keep saying no. 😡😡

    Xxx

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #39 on: 12/01/17, 09:39 »
    Awww Peacelilly definitely whatever happens they are my much wanted miracles and i'm in complete awe just how far they have come since their abrupt entrance to the world ❤ I'm just impatient tbh and have no idea what's ahead but the only way is up now 👍

    Try not to panic about the GA, mine both tolerated it well for their mri's about 9 months ago, bless they were in beds next to each other and were so alert after, was scared as drop to floor was steep and they stay for half hour on the bed as precaution 😨 they'll see much more with GA and less trauma for everybody as it's horrible to watch your child enduring invasive procedures while awake, takes so much out of you  ^hugme^

    Surfergirl presume you have the preventer inhaler for Lucia, mine are on the brown 100 as the cream 50 didn't do anything and life is good since on that one thank goodness, a full month in nursery without a wheeze or sniffle from either so far! Have an appt end of the month for hospital asthma team and paediatric team to check lung function but I think they'll probably just continue with preventer as it's working! 1 day of forgetting preventer and they are bent double with coughing esp during running etc.

    x