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Anybody special needs after nicu brain bleeds?

8K views 70 replies 5 participants last post by  Blondie71 
#1 ·
Anybody?? ☺
 
#2 ·
Hi Blonde,
My little boy born at 24 weeks suffered ivh brain bleed. Grade 4 on the right and 2 on the left. He also has hydrocephalus as a result of the bleeds and has a shunt, thankfully so far this has been stable and no need for intervention.
He has CP as a result of his early birth/brain bleeds which effects his legs.
I see you have 2 liitle books born just a couple of weeks after my little one. How are they doing?
 
#3 ·
Aww Peacelilly you've been through so much trauma from reading your siggy  ^hugme^ so sorry your little man also bears the scars from being born before time, it's a world nobody can prepare you for 😢

Thankfully my boys can walk and move around very well but their problems are all related to cognitive function which at the minute requires them to be in a severe learning disability unit, it's a class of just 7 pupils and they do everything to music therapy and they also receive hydrotherapy there too!

My boys can't talk and appear to have limited understanding of their environment which is devastating and makes simple tasks extremely hard work as their input is minimal and days are exhausting tbh.

I have so many questions about how they have both ended up this way and also about the necessity of ventilation and subsequent bleeds 😕

Do you do any therapies or found anything of help for your little man?
 
#4 ·
Hi Blondie
Sorry to see your update here. . Premature birth is fraught with risks and outcomes can never be predicted accurately as the brain is developing in babies after a bleed some can make an apparent good recovery so no physical signs are present. . Later as you have found former premies can have behaviour problems. . Saying that those with trouble free births can develop severe cognitive problems too....the unpredictability of life.

My Titch had small bleed which apparently doesn't usually affect them. . However it's Chuck who potentially has behavioural issues. . Titch is trundling along a bit behind but nothing major as yet.

You have had such bad luck. . Any more back on the metabolic testing?

Peacelilly you have another little warrior there.
TCCx
 
#5 ·
Hi Blonde,
Life sounds challenging for you and parenting a child/children with a disability can be utterly exhausting at times. As you say simple tasks can be hard work and you have double the work.
Were your boys assessed and identified to go to a specialist unit because of their difficulties? My son attends a mainstream nursery currently. We are in the early stages of the EHCP  process and waiting assessment by an educational psychologist. My son doesn't talk either but does understand and cognitively is on a delayed timetable. I am worried we may get another label added into the mix.
With regards to your questions about the brain bleeds, we're they identified in NICU.
I know on day 1 of life in NICU my little mans brain scan was clear. He had a cardiac arrest, resuscitated and day 3 delivered the resulting news, might I add not in the most positive way. I struggled for a very long time not knowing what the outcome would be, essentially didn't know what life had planned for him and our family. I have never been so scared. But once he started engaging with us and toys I felt some relief.
Don't get me wrong it still hurts like he'll some days that life is going to be more complicated for him but we can only try our best now and encourage independence.
He has the usual nhs services physio, minimal OT, SALT. Has 1-2-1 in nursery. We have however just started conductive education at the Rainbow Legacy House. It fills a gap in patcy nhs provision and allows him to mix with other disabled kids. It's early days with this and we will see how it goes.
Music therapy sounds marvellous my boy loves his music. Is it benefiting the boys? Are you in the process of applying for schools for them and how is that going? Are you getting the right advice and support you need?
P x
 
#6 ·
Tincan,
How is Titchfield with his feeding these days?
 
#7 ·
Hi Peacelilly
Titch takes all his calories orally and uses his mickey button only for water because he's still got issues with drinking due to swallowing coordination difficulties with fluids. He's under genetics and endocrine because of his growth: he's small in height and weight proportionally looking like a 12 month old. He's unsteady on his feet easily falling over and I think this is muscle strength and tone being a little low. Otherwise so far he's doing OK. . They are both behind and in next group down at nursery.  For my boys I believe  being in and out of hospital so much in that first year of life has really knocked development back. To try to keep positive I remind myself they could be much worse.
TCCx
 
#8 ·
Hi TCC good to see you still here as hadn't seen any posts of yours for months ☺ you're so right this is all very unpredictable for outcomes, I thought escaping nicu was end of it all eek so naive 😣

My boys had very mild bleeds but apparently it's more where it occurs that decides what damage is done to the brain as some of those grade 4 bleeds can heal remarkably well and child is close to typically developing peers.

All good on metabolics thanks they sent them off to guy's hospital who tested their dna building blocks and they determined nothing sinister at all so that's ticked off now yayyyy!

Glad things picking up for you as you had it rough for long enough and deserve better days ahead x
 
#9 ·
Hi Peacelilly, yes so challenging and mentally draining as the unknown future is the worry  :-\

My boys were referred for physio and picked up as having problems there (approx 14/15 months) and we've gone through entire process now with Ed psych who immediately went for statutory assessment /statementing (they had their statements
within 8 weeks of seeing her!!!) She was very concerned and applied for an immediate placement in a disability unit for few months prior to starting nursery and then she applied for places in a severe learning disability nursery where a bus comes and gets them and brings them home which is great tbh!!!

Music therapy is helping massively they are so much more alert once the beat starts and they seem to gain confidence to try things with it 👍

The school they are at is totally special needs until 19 but i'm secretly hanging onto hope for a miracle and they go to mainstream  ^pray^

Their bleeds were picked up about 3 weeks into nicu as a result of routine headscan and I was told they happen in 1st 72 hours of life, still can't bear to think of my babies suffering that and unable to let anybody know 😢😢

 
#10 ·
Ps tcc if you don't have these already get an indoor junior trampoline and a peanut ball for titch that's how my boys really got to grips with their core/mobility issues x
 
#11 ·
Wow Blondie that Ed psych was quick with her intervention but I guess it's a case of the earlier the better. I am sure it was still a blow reading their report and recommendations. I am not looking forward to it, I find it upsetting on occasion reading observations on my child but we have to suck it up if it gets them the help they need. Still ignorance is bliss sometimes.
Your boys are getting the support they need but how about you? It can all feel so disappointing some days.  No matter how much we love them we still wish it was different sometimes.
Tincan my little boy has a bit of an issue with fluids nothing identified as such but coughs after thin fluids. He is awful with his food, food has been my biggest frustration despite everything else going on. He is small, tracks 0.4 centile in 18-24 clothes. He is meant to start school September 2017 not sure he will fit the uniform. I am going to request to delay school entry but not sure it will be approved. Going to take advice from Ed Psych when I meet her.
Why are you worried about Chunks behaviour?

 
#12 ·
Blondie meant to add netmums special needs advice thread can be useful if you are not already familiar with it
 
#13 ·
Hi ladies

Blondie71 we have chatted before of course, sorry to hear you are still facing challenges with your boys.

Peace Lilly, we have a similar background with twins born at 24 weeks and one surviving. Our little girl has done remarkably well but she is developmentally delayed. Like your son she has SALT and one to one at pre school. Physically she has been delayed with her motor skills (walked age two and a half and only very recently aged three adjusted can walk well) and she has very little speech although her understanding is very good - she is coping well in her mainstream pre school and should go to a mainstream school in September 2018. She's like a little ray of sunshine, so happy all the time, i honestly thank my lucky stars that we have her.

I just wondered with school application, when your LOs birthday is? We've had to apply to start a year later than she 'should' as she was born on 30th August. So I know quite a bit about the process for children born between 1st April and 31st August. Also, have you both applied for DLA etc? As this has helped us so much.

Oh and also just to answer your original question Blondie - DD had a grade two brain bleed which resolved, but is having an MRI next year, so we may find out more then about long term impacts of it.
 
#14 ·
RB76,
Lovely to hear your little girl is doing well and getting the support she needs.
With regards to delaying school entry my little man would still have been in the same year group of born on actual due date. However he would have been summer born had he born in his due date and so I am applying on this basis and his disability and development delay.
I think I have a strong case and it is out of the normal and been told so by the LAKE.  However it is in his best interest and if it's not approved hopefully he will have his EHCP plan in place anyhow.
I would just like to give him time to catch up with his peers and access the curriculum as inclusively as possible. He is currently in mainstream nursery and I am applying for mainstream schools unless I am guided in another direction by the professionals. He has coped well but the delay is obvious in comparison to his peers.
I hope your little girl continues to do well and I may be in touch for some advice
 
#15 ·
Hi Everyone
We have all bumped into one another on different threads and it's nice to be able to discuss the way forwards if our premies are delayed. .
Thank you for the suggestion of indoor trampoline Blondie.  I plan to get one in the sales after Christmas. Titch is forever getting knocked over and he struggles to get up again from the floor. . Amazingly tho he's a good climber.
Peacelilly yes it's nothing specific with Titch for fluids other than his coordination is not brilliant so it makes it hard work so he's reluctant to drink.  Titch still tracks well below 0.4th centiles. I'm concerned about Chunk's behaviour because he's having crazy meltdowns at everything and has done since he was around 6 months old. . I know he's in terrible 2s but he's got awful temper and insanely jealous of any attention given his brother. I've introduced the 1-2-3 magic and it seems to be working. . This morning he started up twice I counted 1 and he shut up without getting to 2 on two occasions. . He later had a massive meltdown over his bunny having to go in the wash and would not accept an alternative. My fear is he's showing some ADHD traits. . He never stops moving and moaning at the loudest volume possible. He's showing some signs of learning so perhaps he will learn to take himself off to calm down.
RB can they get an EHC plan in nursery? I didn't know they could. . I've already got 2 year funding for both from January which should help so I'm not sure an EHC plan would add to this. .

Titch had subependymal bleed which isn't supposed to be a problem as some full term babies get this and no one ever knows.  I however do wonder is this could contribute to his swallowing difficulties or is that just an essential development phase he's missed by being 100 % fed at one point last year. He's not got a clue what to do with a straw as he can't get the hang of sucking. 
TCCx
 
#16 ·
Hi ladies

Peace Lilly that is good to hear you are applying to start a year later as I strongly believe it will help. We have excellent support from an early years teaching team in Leicestershire where we live and our daughter's teacher just cannot decide whether or not she needs an EHCP because whilst she has very limited speech, she is very good in other areas of comprehension etc so we are waiting to see. My preference is for an EHCP if possible due to the legal rights it gives you. In your situation if you can get year of entry to reception stated in it, that would be very difficult for the council to argue against or change. I'm from a secondary teaching background myself although not currently working. So that helps when it comes to sorting these things out.

TCC that's interesting about Titch as DD has always been a great climber. She was climbing well for ages and ages before she walked. I feel like I have lived in soft play places for the last couple of years. I am not sure what funding you refer to? Perhaps it varies between areas. We have got the usual fifteen hours free Pre School funding and got it from age 2 1/2 plus she has one to one support in pre school? We get DLA and carers allowance separately to this?

 
#17 ·
Yes I meant the 2 year old 15 hours,  eligible because of Titch getting DLA,  which will help me financially and allow me to put them in longer so they can benefit more. I don't get carers as I work 3 days a week.
TCCx
 
#18 ·
Tincan we have started EHCP process in pre school nursery. We had 2 year funding due to disability and inclusion support teacher during this time which also continues now. I have some behavioural worries too, but preemie's are known to have attention difficulties which is my main one and I will be interested in Ed Psych report.
RB EHCP is important for my little man due to his physical disability and safety issues.
Sounds like we all have climbers on our hands my little one uses a frame to walk but will happily climb.

Hope you all have a lovely xmas
 
#19 ·
Hi All ☺ hope you all had a brilliant Christmas? We certainly did, the boys were in such a chilled and great mood which made things so much easier plus I had a lot of help from all their cousins and our extended family and was able to get a few nights out to myself so I hardly saw them 😂 they got thoroughly spoilt rotten!!

TCC have you given sensory issues a thought with chunk?? Have a look at proprioceptive input things to try with him as that can lessen the behaviour stuff as their system regulates itself well through that.

Hi RB good to see you here too (obviously wish a different outcome couwould have happened but hey we've got our kids luckily ☺) my boys both get dla too and it helps with private therapy stuff hydrotherapy etc 👍

Peacelilly I do get physical support from my family but i've joined a few disability support groups locally, one I go to more as we meet in a hall they hire which has tonnes of activities for the kids plus sensory room, bouncy castle, gym, craft tables, jo jingles etc and I pay £10 a year and the parents all make tea and chat about issues so they have become my best resource so far! If you can find a local group like that take full advantage as we do day trips and all sorts plus they can be heavily subsidised into some really expensive places, we're all going as a big group to euro Disney in the spring so it's worth joining ☺
 
#20 ·
Blondie, nice to hear you have had a bit of time to yourself and been able to enjoy xmas. It sounds like the boys have had a lovely time. I am drowning in plastic toys!
I don't go to any regular disability  groups now that my little man is in nursery. However, I mentioned we have just started conductive education at a charity called Rainbow House and it is already a source of support and I am sure as a family we will be getting much more involved with the charity including parents. It's so nice to speak to others who know what you are on about. A parent of a typical child including close friends find it hard to comprehend how many professionals we have to deal with week to week.
 
#21 ·
Tbh Peacelilly I'm finding it harder to relate to parents with typical children and I find myself almost resentful and frustrated (secretly disappointed in my kids maybe?? :-[) that my kids aren't living up to expectations, whatever it is I know I need to come to terms with it so yes the groups are where myself and the boys more importantly can be themselves.

You're not alone in struggling to accept this at all.
 
#22 ·
Ps what does conductive education involve?? I'm on a waiting list for home education lessons on top of their nursery hours is this similar?
 
#23 ·
I think perhaps all we long to have is the normal life most people have with full term healthy babies.  My two aren't so severely affected as some ex-prems and still have lots of appointments to attend. .
Peacelilly and Blondie  you are quite right those with regular children don't understand.
RB funny how they can be unsteady on feet but climb so well. . Titch will quite happily climb open steps to a slide which Chunk won't go near.
Blondie I don't think he's got sensory issues but saying that he's taking great delight in stomping around on the laminate flooring listening to echo in the room.
TCCx
 
#24 ·
🙉 I can just imagine him TCC they sound just adorable the pair of them 😂 funny how we're all parents of twins on this thread too, maybe that leaves it's own issues on a child too, we can't know what effect twinning has I guess 😕
 
#25 ·
Blondie, I think your feelings are normal given your situation. I don't think you are disappointed in your children, just maybe that life was a little more straight forward.
I had a really hard time accepting my son was going to have a disability. It felt just so unfair after loosing my babies that life would throw another challenge at me. However I am mostly at peace and accepting of the situation. Don't get me wrong when I see other babies young children walking and running I feel sad for my little man. I feel ashamed of myself looking back that I was so scared of what might be and is.

Conductive education is a type of education for motor difficulties.
http://www.conductive-ed.org.uk/coned.htm

We are still in trial phase but sessions have been positive so far and my little one seems to be settling with the group and his conductor (therapist).

Happy 2017. Face whatever it throws at us head on!

/links
 
#26 ·
Blondie just checked out your boys on the photo, super cute. They are only about 2 weeks younger than my little man but I think if corrected would have been born before him. He was due 8th July

 
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