cerebral palsy baby his mummy needs help please

[millienmaxmummy]

Hi,i dont know if im posting this in the right place, just joined today. i just want to hear other stories similar to mine as i feel alone dealing with this, i dont know where to turn for advice nor what to expect in the future......

Since my son was born 6 months ago i have been researching all aspects of cerebral palsy, on the internet, books, and the neurologists, which with them they just dont give straight answers, and the internet and books just dont give me the answers i am looking for, i want to talk to someone who has been through this as a mother or been through it actually themselves......i am going out of my mind every minute of everyday, i dont know what to expect from my son, i dont know what kind of life and future he has got and i am terrified for him, but if anyone could tell me a little about your story, when you was a baby with cp or a mother dealing with a baby with cp would help alot.

My son, Max, is 6 months old, he was born full term and nothing was picked up on the scans, 2 hours after he was born before we was getting sent home from the hospital they measured his head and realised it was a little larger than it should be, ct and mri scans confirmed he had a brain bleed grade 4 on the right side of his brain which then caused hyrocephalus and at 5 days old he had to be shunted. The neurologist have told us he wont go unscathed and the outcome more than likely will be cerebral palsy, we just dont know how severe.

So today, he rolls over, sits up for a couple of seconds, eats very well indeed, sleeps very well, uses his right hand to pick up pieces of food and toys and hold his bottle,equally bears his weight on both legs and is attempting to crawl, he has even started to copy words, dada, nana, hidey boo, hello but just not mama yet!

he favours his right arm and hand, does not use his left hand unless you hold his right down, his leg muscles seem to stiffen now and again, when picked up he scissors his legs and arches back, these are all symptoms i keep reading about, but i have yet to read a story where the baby is reaching all the milestones listed above but still has these severe symptoms.

Can you remember what you or yours was like as a baby, i would give anything to know my sons future, but i cant, but comparing stories will help me prepare for what is in store for Max.

Personally i think he is doing really well, reaching all his milestones but i dont know if one day he will loose it all and become severley physically or/and mentally disabled, is this how all babies with cerebral palsy start off doing everything like regular babies? any answers will help, anything will help.

Thanks for listening.

Hi & welcome.
I'm no expert but he certainly sounds like he is doing very well. While nobody can predict the future I cant imagine it could be anything other than mild and still reach all the milestones, although like i say I am no expert. I only have our experience to go on.
DS2 is 10 & was born at 28wks, he has mild CP (Spastic diplegia), autism & learning difficluties. He honestly didnt do much at all for the first year. Didnt roll over until her was over a year old, sat up at about 15months, never really crawled & walked unaided at 2. Now at 10yrs old, he can walk, run (Sort of) climb & jump. He tires easily, falls alot & uses a wheelchair for anything other than short distances. His autism & learning difficulties impact us all much more than the physical stuff. His SCBU brain scans were all clear, so I guess you never can tell.
All you can do is treat him entirely normally, encourag as much physical stuff as possible & if you think showing signs of stiffness then stretch as often as you can.
What follow up & monitoring is he having, obviusly there are other types of CP other than spasticity/tightness so its important that he is properly monitored.

Hello, thank you for your reply. Just hearing somebody else say what im thinking has made me feel much better, i know we are not experts, but you are better than experts you have been through it personally, hearing you say you think my son is doing well reaching his milestones is great as this is what i have been thinking, how can he be doing this well but be diagnosed with cp for his neurologist to suggest it will be severe, i have an appointment with her this friday, she has not seen him since november 2012, and when she saw him it was all doom and gloom she bascially wrote him off saying that he wouldnt reach his milestones, im a little scared to go on friday but also a little exited in a wierd way to show the neurologist that he is actually reaching the milestones. your child is truly an inspiration to come through what has been through and he sounds like my son, a little fighter, and you sound very strong too i hope i can be like that one day, at the moment i crumble over everything.

im trying to get the child intervention team to get involved and assess him so he can be helped sooner but they seem a little incompitent as at first he wasnt on the system then secondly they lost the reports and letters my neurologist sent them, they recently found them and got a little worried at the amount of things going wrong with him (his eyes also have spouts of wondering everywhere, also known as sunsetting and nystagmus and he has a shunt) so they are trying to push his application through as high priority so im just awaiting on news from that at the moment.

above is reply for mymatemax, thank you

and below is reply for zzzzz
thanks for your reply, i will be seeing my neurologist this friday so i will talk to them, but they seem to give me answers in riddles which is why i wanted to hear of stories where people have personally been through it, they are the expersts in my eyes, people like you. I also think it can only be positive he is reaching his milestones but the way experts talk its like what he is doing now he will stop and basically go stiff, a bit like locked in syndrome, thats how i feel that they think, i know it sounds daft, but i dont know if that can happen i have never heard of a story where a child with cp did all the milestones and then stopped and forgot. your story pulls on my heart strings as she forgot because of the seizures who you were and how to use left side, but im glad to hear she doing better you mummys are all inspirational to me. thanks for telling me your stories

DS2 has been under the eye clinic since birth while his sight is normal he has trouble with tracking visual perception so he has very poor depth percetions, cannot judge if a car is moving or still & struggles to accurately work out how far away something is.
We were also told he is at much greater risk of developing seizures although touch wood, aside from a few strange episodes when younger he so far seems to be OK.
DS2 has stiffened as he has got older & muscle pain & spasms have increased with growth spurts, he has continued to make progress albeit in his own disordered way.

max did have seizures after his brain surgery for his shunt when he was born but touch wood he has not had any since 3 months old, he was having up to 20 seizures a day, i know they could come back but at the moment beacuse he has not had one in months and they have weaned him off his epilepsy medication they are putting it down to the surgery and not the brain bleed. also i should of said he had the shunt due to the brain bleed caused hydrocephalus which can be another factor in development delays, so he has got alot of cons going against him but at the moment he also has alot of pros too, with reaching his milestones.
i guess i just have to see what the future holds for my lil soldier but i will do everything i can to help him along the way like all you are doing, its just really raw at the moment as it was only 4 months ago we got out of hospital with him it was all a big shock, and also it was the midwives fault why he had a brain bleed.

Millie, it is a tough time but it does get better, honestly! Even if your ds does have some long term difficulties.
It is a real rollercoaster of emotions & at times I think I have become so emmersed in ds2's disabilities I lost sight of the wonderful, funny lovely little character he is.
In a really awkward way I suppose I'm saying dont forget to enjoy him too, its hard with all the worry I know & dont forget you ahve to take care of yourself too.

Hi,

I have a hemi CP toddler who was starved of oxygen at birth due to negligence.

She favoured her left side but we have done SO much work on her right that you have to really really look now (or know her well) to see the hints. The paediatricians have said this is partly dueto nneuroplasticity and partly to do with her tone (she was high tone) becoming more normal. Initially after her MRI the neurological team said quad CP but we have seen improvements.

DD met all her gross motor milestones but struggled with fine motor on both sides and has a speech delay. We have visited Brainwave but found portage the ultimate best thing we have done. Dd attends mainstream nursery and has some additional funding for 1-2-1 to support her.

Overall we've had poor NHS support, physio missed several key issues and we've spent money privately instead. Dd has also had to battle seizures which has always resulted in paralysis and loss of skills. As yet however we've avoided medication for the seizures as they are a type of febrile and the neurologists feel that she may yet grow out of them.

Your son sounds like he is doing very very well. Have you gone along to your local scope group? In many areas you can also self refer to portage who I found were superb for both dd and for dh and I who did struggle to deal with dd's future.

thank you so much for your kind words, my hubby tells me this all the time, to stop fretting and just enjoy him he's here against all the odds. iv been looking through other stories and i found this poem it is actually really nice and the last verse is exactly what you just said.
www.our-kids.org/Archives/Holland.html

hi redwellybluewelly,
thanks for your reply, i have not heard of scope group i will have a look on the internet now, i am not coping very well with it but my husband gets me through it, he is the strong one.
the negligence max suffered caused his brain bleed, and the peadatricians and the early development team have both lost letters and reports sent from max's neurologist to get appointments and his regular health visitor who is supposed to visit regular to do regular shunt checks left her job and did not refer another health visitor for max i had to chase it up and guess what he werent on there system, some nhs proffesions are just loosing my confidence like yourself did but my neuroligst is the best i could ask for, she pushes for max and any concerns i have she is excellent dealing with us, but her collegues in the neurologist department talk to me in riddles and i dont quite understand what they talk about, my hope is still there for the proffesionals because of my neurologist but i would love to go private but i couldnt afford it, you are very lucky and it sounds in your case it worked out the best for your daughter as you have seen improvements its lovely to hear thanks for your story.

Hello! I have a 9yo dd with cp (she was also born full term and suffered hypoxia birth injury - we are several years into a med neg case, and not expecting any outcome any time soon).

She spent 5 weeks in scbu, came home for a week and was then re admitted (made no effort breathe, fhr down to 28bpm at birth - vent, oxygen for two weeks, seizures, loaded with phenobarb etc etc, no suck or swallow, tube fed). We were told she was unlikely to walk or talk.

They called it developmental delay for ages, although to be fair we had self dx courtesy of dr google (the fact that she was discharged from hospital with full team of consultant, physio, slt, and a sn hv was a big clue) and they finally confirmed she had cp just before her second birthday. She'd been having up to four appointments a week with physio, portage, slt for two years - they all knew it was cp but no one was allowed to tell me.

She was originally dx with spastic quad cp, (she was initially very tight - thumbs in palm, fists tucked under chin in boxer pose, and was pretty unbendable) but her tone changed enormously and at four we asked for a re-dx as it was becoming ridiculous to label her spastic. So she went for her second MRI and the neuro re-dx her athetoid cp. she has always been stronger on one side, and is a leftie as a result (even though she has a full body dx).

She first smiled around six mos, sat around 12 mos, crawled around 15 mos, started to talk around 3-4 yo (although had severe dysarthria) did not walk unaided until yr r (she finally ditched her walking frame in the summer between yr r and yr 1), and was statemented for school.

She is now 9, is a girl guide, goes to ballet and jazz dance classes, is involved with an adaptive ski program (she received her black runs certificate yesterday so is chuffed to ribbons that she is now a black runner), and will learn to swim if it kills me (it may well - she swims like a brick). She has the highest iq of all three of my kids, and is currently writing a book about what it's like to be a kid with cp - she also intends to start a blog once it's gone to the publisher... she uses an iPad with a keyboard for most of her written work at school - her fine motor is pants.

The cp is part of her, but it's just a part. It isn't everything. She just happens to have a disability, along with blonde hair, blue eyes, a ridiculous sense of humour and a sense of justice the size of a house.

I won't lie - the first two years (and then some) were bloody hard work. I cried. A lot. I was permanently exhausted, I spent every waking minute focused on physio, or care, and very little on being a mum and having fun with my baby. That said, brain plasticity when they are tiny means that so many new pathways can be formed, I kind of felt that I had to make the most of every opportunity. Early intervention is absolutely the best chance.

These days I'm much more relaxed about it, but I have my moments...

I used scope a fair bit when dd2 was little - and I used special kids in the UK as well (another forum - lots of kids with disabilities, mnsn is good- and we do have our own cp support thread, but it can feel asd heavy). I also went to an rl sn group every week, which made a huge difference.

Dd2 developed a squint at around 3 mos, and has been wearing glasses since very small. She had squint surgery at 7.

Come and join us on the cp support thread! Max sounds lovely x

We haven't had a huge amount of cash - Brainwave was the holiday fund, but they do offer a subsidised rate and I think that they can fill a useful hole in the gap which the NHS leaves.

alwayslateforwork can agree with you on the first 2 years being the hardest (the first year of babay milestones of my NCT and antenatal groups being the worst) - I remember when we were given the hemi dx at 14months I felt my world had collapsed all over again, I genuinely felt like I had failed because other HIE (hypoxic) babies were doing better. In fact the gut determination of my DD has picked me up on many occasions. I also work FT in a new post I started when DD was a baby so feel pressure constantly like I mustn't let that slide.

I find the seizures hardest to handle and I do worry about her ability to keep up with her peers - but now she is heading full pace towards her 3rd birthday and her baby brother or sister is due in June I have started to become much more accepting of CP simply being another part of her like her curls, wee head, attitude and determination. I have cut out a lot of toxic people from my life who refused to support me or wanted to be part of the 'sensational' aspects of her early days, my husband loves our DD unconditionally although he has come along to many of the therapy sessions he doesn't worry as I do day to day. I think overall its great DD has one parent who sees her for being DD and one parent who has more of an eye on her therapy & getting support.

Here is the link to portage

DD is 3.10, born at 27 weeks and was diagnosed with CP (Spastic diplegia) at 2.2 yrs. Her SCBU head scans were all clear. She sat unaided at 9 months, commando crawled at 14 months, proper crawled at 15 months and started cruising then too. She took her first unaided steps at 2.2 years.

I found it very hard when friends' children were reaching milestones that she wasn't reaching - not helped by the fact they walked ridiculously early (10 months!)

She now has a statement at preschool and will have a full-time statement at school when she starts in Sept. We do stretches with her 1-2 times a day, physio at various times, she has had Botox once and is due it again next month and uses a wheelchair for distance. That said, she is just DD, and the CP is a part of her. We just get on with enjoying life. Today, for example, she went to preschool all morning, then cycled home on her trike 1.5 miles, stopping for lunch on the way. She won't let things get in her way - taught herself to read at 2.10 yrs, loves typing stories, drawing, doing puzzles, doing different crafts, going on her slide, trampoline, and trike. She has also just got a scooter and is trying to master that...

Dd2 had a triangle based scooter first, galena. Two years ago she demanded a skateboard (so we welded a handle to one!)

DD has a 4-wheeled scooter... We don't really have any scooter-friendly paths nearby though...

Hi, I'm posting this in the hope that people can give me some support. My son is 15mths old and 2 weeks ago was officially diagnosed with cerebral palsy. We knew it was a possibility but never the less we are devastated. He was born via emergency c section due to being in distress, once born he was whisked to special care and we discovered he'd had 2 bleeds on the brain, one on the right being the worse.
He isn't sitting up on his own but will if supported, he's not crawling but he is rolling around the floor making silly noises. His grabbing is coming on with his left arm which has surprised us all seeing as his left side is the most damaged.
I'm struggling with the fact that no one can tell us his long term outcomes. We don't know if hell ever sit up by himself, if he'll walk or even talk. He's such a cheeky chap, flirting with people, all smiley and giggly and it breaks my heart not knowing what his future holds. I'm trying to be positive but it's so hard, especially as my best friend and my cousin both have 10mth olds who are starting to walk, it really upsets me thinking jack may never do this.

with mild/moderate CP no-one can tell you the outcomes. My dd has severe CP so never progressed beyond a newborn (she is now 9) and remains that way so it was pretty simple..
Do you have an OT and a physio yet? If not then your paediatrician should refer you to those services. There may also be conductive education in your area and speech and language therapy. SN groups may exist. The vital things, in order, are communication, hand function and then walking/getting around. A lot of stuff you can do at home to help you son. How does he communicate? Can he point? Does he look with his eyes at what he wants? Can he make any speech sounds? Encourage all of this so that he can communicate. Make an A4 board with a happy face for yes and a sad face for no (colour code them) and encourage him to use them. If he can nod or shake his head then encourage that. Get him communicating.
Use that hand function even if it is hard for him. Get him playing and reaching.Picking up big things/small things. Massage both hands and bring them together hundreds of times. Stretch out his arms and fingers to keep his muscles flexible. Use different textures as many children with CP have sensory issues too.
Sitting. Sit him on your lap facing out and rock him from side to side so he feels the balance and movement, bounce him up and down (obviously, support him at the hips or side, wherever you need too). Encourage him to raise his head from lying on his tummy and get him rolling so he experiences the stages from babyhood.
You can do all this while waiting for OT/physio referrals and specialist seating.
Good luck.

sorry that was a bit clinical but the aforementioned 9 yo is howling her head off. Roll on school!