* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6614 times)

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Offline Peacelilly

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Anybody special needs after nicu brain bleeds?
« Reply #40 on: 12/01/17, 17:35 »
Surfer, Leon has nystagmus and seems to cope quite well with it. Apparently children do if it there from a young age. Leons is most likely due to the hydrocephalus.

I can't believe the EHCP has not been agreed. How will she get the required support she needs in school otherwise. Hopefully they will do a U turn and you can be confident once she goes to school.

Blondie we have just started the brown inhaler and seems to be doing in the trick and keeping nasty cough at bay

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    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #41 on: 15/01/17, 14:15 »
    Fantastic, new lease of life since my 2 on it ☺

    Offline Surfergirl

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    Anybody special needs after nicu brain bleeds?
    « Reply #42 on: 15/01/17, 16:57 »
    Lucia had her tonsils and adenoids out last March as she had sleep apnea. The ENT consultant said that we may also find she suffers less with colds. She's not had such a rough winter this year so fingers crossed. The brown inhaler definitely helps too!

    Peacelilly - yes, the orthoptist said that if they have nystagmus from an early age the brain adapts well to it, although they can get visually tired quickly. Lucia's MRI showed pvl, abnormal white matter etc.. apparently found commonly in prem babies with CVI. For us the priority is to ensure the good development of the right eye and to also ensure she gets the correct support early on in her education, so any barriers to her learning are dealt with. Unfortunately the Local Authorities seem to want children to fail before they will help them.

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #43 on: 15/01/17, 22:37 »
    Surfer,
    Leons history is very similar to Lucia. IVH caused PVL and a cyst.
    You are so right about getting the correct support it's imperative. The whole EHCP process has my head in a whirl.
    I need to do some serious research after the Ed Psych assessment on Tuesday, I have been looking tentatively.
    Special needs jungle site is informative, do you use it?



    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #44 on: 15/01/17, 22:39 »
    Do you mind me asking what caused your early labour? Lucia was very small wasn't she, just read your signature. What a fighter she is.

    Offline Surfergirl

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    Anybody special needs after nicu brain bleeds?
    « Reply #45 on: 16/01/17, 16:21 »
    Hi Peacelilly,

    Yes, I have looked at Special Needs Jungle, although admittedly not for a while. Lucia was very small because my BP went up quite early on and the placenta was really poor. Luckily I was consultant led and that ultimately saved her. My consultant was amazing! They realised at the 20 week scan that she was small and I had weekly dopplers to check the blood flow to her. As soon as it started to go into reverse flow I was sent to Derriford Hospital in Plymouth for a c-section. My wonderful Consultant, Raji, won the Tommy's Healthcare Hero award in 2015 for her care of us! 😊

    Offline Peacelilly

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    « Reply #46 on: 16/01/17, 22:16 »
    Wow what a women and a well deserved award you must feel very thankful.
    Special Needs Jungle can be bleak reading TBH so mainly failed parents. Have you had any support from the parent carer partnerships regarding your appeal. Our local one is called parent partnership. Your SEND contact at LA should give you your local named. Or a recent post on SN Jungle regarding funding references organisation funded to do it. Might be worth a look.
    Ed Psyche visit tomorrow, slightly anxious.

    Offline Surfergirl

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    Anybody special needs after nicu brain bleeds?
    « Reply #47 on: 17/01/17, 06:19 »
    Good luck with the Ed Psych visit. Hope it goes well. In my other life I am a careers adviser working with 16-20 year olds. I regularly deal with EHCP's at work as we are contracted by the Local Authority to work with young people in target vulnerable groups. SEND is one of these groups. One of my ex colleagues is on the Parent Carer Council and attends Lucia's TAC meetings with me. Our plan moving forward is assess, plan, do, review. We need hard evidence directly relating to education. Sadly, the LA's almost want children to fail before they will help. This is something I have a real issue with! 😡😡

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #48 on: 17/01/17, 08:37 »
    Your work is obviously useful for your current personal situation. It can only be an advantage that you have a good understanding of the process. As I have said already it has me in a whirl.

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #49 on: 18/01/17, 10:04 »
    Peacelilly how did it all go?  ^hugme^

    How many weeks were you surfergirl when BP went up? I was 14 weeks and started getting protein and BP of 155/90 (always remember that nbr cause the panic in the room 😡) they put me on methyldopa that day until 12 weeks after birth, placenta was totally calcified unfortunately 😢