Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

Choggers DD2 is not on medication either. Paed said they'll keep reviewing her to see if/when it's applicable. I think regular paed appointments (we're every 6 months) will allow him/her to advise if/when medication is advisable. If you're concerned, speak to your paed, they are always interested in our views and opinion over DD2.

Hi hanbee we were told at the outset that we might not get a firm diagnosis if they're not sure. However, after the MRI they were convinced it was CP and wrote it in her notes and in the summary review letter for us/ handover to community paed. We're just going down the Assessment route through the LEA, so I imagine we're going to get even clearer understanding of limitations and strengths from this process (fingers crossed). I found just asking the paed (both hospital and community) for it was enough during one of our routine appointments (6 monthly for us).

Hi. We have had a slightly different route to diagnosis, and all from observation we had prematurity for the first few months then gross motor delay, probable CP at 11 months: then Evolving CP, now CP spastic diplegia distribution. They made the diagnosis based on his history and prematuriy, muscles pattern and gross motor delay.

I have posted before about the diagnosis as we are a text book case of how not to do it. We were just told DS has CP in a general clinic at the end of the day. the physio then left, we were then told don't google it. Then he will walk though. then No he won't catch up. then bye bye. He has had no mri yet. we saw no point as it wouldn't change anything.

Now DS can talk clearly he does not complain of pain even though he is affected fairly significantly. he sometimes says he is tired, and the heat really doesn't help but not pain.

on a separate point has anyone had serial casting at any stage? if so how did you find it? any tips,

Hi, me again. Tried potty training this weekend (after posting before), nursery tried today. We got a poo fine, ds said he needed one then sat on potty and hey presto. Wee a disaster. Nursery say ds missed out too much after trying to cajole/bribe etc so out him back in a nappy. Ds is 3.5 at the moment 3.2 if I still correct so still time but given poo a success I am feeling slightly mixed about it.

Also in hibernation did you try Halliwick swimming. Just found someone who recommended it. Finally anyone know anything about spml, selective percutaneous myofascial lengthening). Same therapist suggested it, and seems interesting.

Sorry I feel like this post is lots of questions but having a bit of a phase of trying to work out what to do next.

Sorry, I don't know about the stuff that you're asking - hopefully someone more knowledgable will be along shortly.

But congrats on making positive steps on the potty training front! DD2 has just turned 2, so we're nowhere near potty training yet

Hope this is the right place to come, apologies if it is not. Originally started my own thread but as it is specific to cp thought I would add message here.
My baby boy contracted group B strep meningitis at birth 10 weeks ago, he was ravaged with it and we came close to losing him. He fought hard and did however pull through. We then had the MRI and were not prepared for the news we received. From what I managed to take in, there is damage to the basal ganglia and elsewhere which was described as 'startling', they predict spastic quadriplegia, severe CP and learning difficulties, in fact they seemed to think we should be prepared for anything and were unsure if he would be able to even swallow etc.

I have never been so frightened and lost in all my life and ten weeks on can only hope I have misunderstood or it is all just the worst of bad dreams.

After five weeks in hospital (and another meningitis scare), he is making (I think) good progress. We were determined to lose the tube and he now breastfeeds (which they didn't think he would manage) and has just started smiling at me occasionally, is tracking better with eyes - although he prefers looking to his right and does this most of the time. Passed the hearing test. He still has no head control.

I'm not sure what I want to hear, I guess some words of positivity from people who might actually understand. I was told I would go through a grieving process and should allow myself to 'fall apart'. I don't want to do this though as I have a two and four year old who need me to be strong, my baby needs me to be strong and positive surely too and why grieve when my beautiful boy is here with me and smiling? I do get very sad though of course and can't bare to think what the future might hold for him, I just feel so sad for him and angry too that I wasn't tested for this infection.

I have been reading about your dc's and already feel inspired and more ready to deal with this as I hear about their achievements. I have also got very upset hearing about the severity of some of the conditions, I have deliberately not been asking questions about what the future might hold as I'm not sure I'm ready to hear the answers, have avoided research etc so far as I'm just trying to enjoy my baby. I would love to hear from people who understand that life can still be good and our dc's can still have fulfilling lives with achievements along the way no matter how small. I'm scared that i'm telling myself they have got it wrong as he seems so normal at the moment and am therefore in for a terrible shock.

Thanks for the diagnosis stories, seems it is just on clinical presentation whether you get more information then. I was brave and pushed and was told DS1 has very unusual presentation. no high tone, normal to low tone. hyper mobile joints and lack of motor planning. learning difficulties and non verbal. He's just a very unusual presentation of cerebral palsy according to his team.

I now feel a bit lost as even though we finally know the cause of his difficulties he still doesn't really "fit" anywhere.
bigllil hugs. You've had a right rough time of it, but don't feel pressured to react in a certain way. Everyone's slow journey to acceptance is different and very personal. You must deal with this is your own way. I found it very hard to accept DHs way of dealing with our son's difficulties, it involved a lot of denial which I just found frustrating and unsupportive. I've finally learnt to accept his way of coping but it took me nearly 5 years! Don't over cope though, just accept the feelings that arise and call in support when you need it.

I know of another mum whose DS has CP following menegitis, she writes a blog called Premmeditations, her son is 1. She may be a good contact for you as she'll "get" it.

Hi BIGLIL I know how you are feeling. We are only 10 weeks ahead of you. Our dd was ill at birth but was suffering a stroke at birth with seizures that no one noticed for 12 hrs. She was then rushed to Edinburgh Simpson's baby hospital by special baby ambulance which I was not allowed to go in so had to go in a different ambulance as I'd had an emergency c.
The stroke caused brain damage and we were told by Edinburgh to expect cp, learning difficulties, motor skill problems. Apart from a general use of cp we have not been told what kind. From what we have read and found out on MN we know it is hemiplegea ( right sided ).
We have been told that we will never know the extent of the damage until she grows and meets or not meets her milestones. So far her head still isn't completely steady but getting there. She recently started rolling but cannot pull her right hand out from under her belly so gets stuck
But everything she is doing is a great accomplishment. We know she is doing things slower but she is doing them.
I personally don't know much about quadriplegic children but there are many mums on here that do and have been great support and help to me.

We have our consultant appointment tommorow and am getting to see her mri images. I'm a little nervous about seeing the damaged part incase it shocks me and I cry. We are hoping though that tomm we get a lot more info on dd. Wish me luck :)

melmo If you are on Facebook you may find this group useful www.facebook.com/groups/cpsupportscotland/?ref=ts&fref=ts

Good luck for tomorrow. Who are you seeing?

Hi sorry don't use facebook, do they maybe have a website?

We see her paed consultant tomm. Having to take all 4 dds as granny is busy, should b fun:)

Thanks hanbee for mentioning the blog, I will definitely have a look.
Melmo, good luck with the appointment. I totally understand why you would be nervous about seeing the scan, it did upset me but I'm glad I saw as it is all part of the process of acceptance and understanding I guess.

Just back from the appointment, we got to see both her scans. The first one shows the healthy brain matter on the right and the damaged on the left. To me it looked like it was 'smudged' she said yes it looks like someonehas taken an eraser to it. The second showed the fluid in the brain. She said dd has fluid in the middle of her brain (where the healthy tissue should be) but not to worry about it as it is still 'sealed'. The damage is far more than we were expecting. It's basically from one end to the other. Her head circumference is dropping a lot off the chart . paed told us that the left side of the brain won't grow so her head will always be smaller. Dd definetly will have probs with right arm and hand as they are tighter but paed thinks that her leg might be fine. We mentioned that DD has 'moments' of mad kicking and punching that last about 5 mins. She said to record dd next time so she can see if its seizures or not.
Pediatrician said she will 'most likely' have cerebral palsy but does not like to diagnose it until 1 yo.

Still trying to process all the info. What does all this mean? Will her head grow or will it stay this size. Is she having seizures or just hyper moments.

I managed to hold tears back though :)

Melmo, well done for staying strong. I hated seeing the scan pictures as it made everything so real having that 'hard evidence', still all part of the process of acceptance I suppose and now you have a clearer picture of where you might be heading. From what so many people are saying it seems there should be great emphasis on the 'might' and we have every reason to stay positive as they are still giving worst case scenario and none of what they say is definite. I was interested in the mad kicking and thrashing that you mention your LO does, my little guy does this too and I was so hoping it was just him having a good old play, now you have mentioned the possibility of it being seizure activity this has got me wondering, maybe I too should record it and show paed, tbh though I've kind of given up on the whole 'is this a seizure' thing as I got different answers depending on who I spoke to!

I definetly think you should record ds biglill.
Dd doesn't do it often, every few weeks. It is defo different to the normal 'playing'. It is like her arms and legs are moving uncontrollably and she kind of sucks on her tongue. After a few mins she stops and will lay there still.
Paed says that she has every chance of having seizures.

I think it would defo be worth your while recording him and showing them, even if it is to rule it out.

I find myself looking at every little thing she does and think ' is she meant to do that' ' is she ok' and she is our 4th.

We also got told lots of different things. Our dd was transferred to another hospital 12 hrs after birth so theytold us she had the stroke and what to expect from the damage. Once transfered back home the docs here have a ' wait and see' attitude. It's no consolation when you just want answers but they cannot predict what our dcs will/not be able to do. It has taken me weeks to accept this as an answer.

so DS2 had his wheel chair assessment on Tuesday, she got him out his car seat sat with him for a moment and then went through his history briefly with me to then tell me that he was too small in order for them to give him anything when I question the fact there is wheel chairs for children from 10months old she said well we cant accommodate everyone otherwise we wouldn't be here! I just wanted to know if anyone else has had a similar experience and to know If this is worth fighting against as I feel a bit like he isn't good enough to have one when I know it would benefit it him from being sat correctly. if anyone had forth this sort of decision how did you go about it?

plans are all still going ahead for DS2 to go to play school in September there are in the process of getting a one to one worker and getting them trained! feeling excited and scared about this!

Hi Biglill welcome to the thread! We only realised that there was a problem when DD2 wasn't meeting her milestones (initial warning sign was not sitting unsupported at 10months couple with birth complications).

I went through a rollercoaster of emotions. But I didn't grieve, I did brake down in private to DH, parents and my boss (frequently, and he was lovely). Grieving is about loss to me, I didn't feel 'a loss' as I have the happiest, smiling, gorgeous little baby to snuggle. I was sad because I felt she was going to have to work harder for everything, and life was going to be that little bit harder for her at the outset than her siblings and friends.

But I agree with hanbee that this process is very personal and you mustn't feel pressure to act in any way other that what feels natural for you at the time.

But I can tell you that our life is good, for all of us. DD2 is an immensely happy child and we celebrate the progress she is making even though she's not in line with her peers/milestones. (I presented 60 cupcakes at work last week in celebration of her walking now!). She will have a happy, fulfilled life and we know this because we can now see her personality.

We don't think about the future too much at the moment because kids change so much and so quickly at this young age. DD2 is now walking unassisted without her kaye walker (physio is taking it back!!) - she couldn't sit unsupported 6 months ago .

Enjoy your gorgeous baby boy , they are all treasures.

melmo for you after today. I haven't seen DD2 MRI scans. It didn't occur to me, I think I will ask at our next appointment. I cry at (almost) every pead appointment (when we are reminded that our daughter has a disability), so credit to you for holding it together.

DD2 suffered seizures at birth then again at about a year old. They have stopped now. After all of them, she was very upset but I don't know if this is what always happens/normal. I think there are different types of seizure that present differently.

DD2's head is smaller (on a lower centile line) compared to her height and weight, but it is still growing along that centile line. She doesn't look as though her head is abnormally small (wears age 2-3 hats the same as her clothes) although the charts are showing a difference - I think head circumference is on the 9th centile and her height/weight is 50th centile.

Chatee

LEA confirmed this week that they're going to undertake the statutory assessment for DD2. Cannot thank you enough for that sound advice and steer of what to include in the letter and who to send it to. We have assessments scheduled - everyone phoning in to make appointments: SALT, physio, OT, portage, psychological assessment (?) and paed.

thank you again. I luffs this thread.

Thanks everyday dds head has not grew in the last 6 weeks. Only slightly since birth. Her head size isn't even on the chart. It's well under the 0.4th percentile on the chart. I asked if dds head would grow or not and paed digressed saying that if we all shaved our hair off all our heads would look odd and when dds hair gets long it should not be that noticeable. At the moment it does not look out of proportion, her weight is on 50th percentile and length is on 25th.
Thanks for the advice about seizures :)

Hi melmo.

About the seizures: We were discharged from SCBU (12 days old), once DD2 seizures were controlled (medication), and we were told to call an ambulance if she had another seizure. It was at 9 months and 11 months when she suffered 2 more seizures and we called NHS direct for advice and an ambulance and she was taken into A&E then onto paed ward for a day's monitoring. After the second seizure we got referred for the EEG (I think this checks for epilepsy - all clear) and MRI (showing brain damage).

I say all this because if you suspect it is seizures, then absolutely do video record it but also don't be afraid to call NHS Direct for advice. Not trying to frighten you, just saying don't be afraid to call for help - nurse at NHS Direct and ambulance paramedics were all very supportive and kind.

We've also had different approaches by 2 different paediatricians (hospital and community). Hospital one was the 'wait and see' and 'maximise her potential' type, and now our community paed is the 'she's got Asymetric Bilateral Spastic Cerebral Palsy' and 'she will walk but not for some time, and she'll likely need a wheelchair as she may tire easily'. So our hosp paed was a bit vague and our community paed is quite precise. In my mind, none of them really-really know because all kids develop differently.

Hello all. We have just submitted the application for statutory assessment as we are going to need something in place for when DS starts school. so fingers crossed. even DH read my letter this time. Usually he leaves the doom and gloom documents to me but I wanted his reassurance somehow this time. He has still never read the DLA paperwork.

Oh and one other thing possibly, just possibly DS took an independent step at the weekend (about a month after he cracked standing) it was a bit more like a step then fall into my arms but I figure he at least wanted to try and move his leg. Now if only they would get his AFOs sorted we might make more progress.....

Hi thereonthestair. Well done you for getting the SA Application in. What age is your DS? I haven't picked up the DLA paperwork yet. I feel a bit funny about applying as I don't feel like we need it. Other people more in need than we are. But then I think I should as its not for me but for DD.

Yay! For a first independent step :)

Oops, sorry, I see he's 3.5. So reception next year. Is he starting nursery this sep? I think a statement would also be applicable for a nursery setting.

Hi. he's in nursery already (has been since he was 8 months old) and the nursery goes into a pre-school. they have funding for him (25 hours) but that is under the early years budget so won't acrry through to School. We would previously have been ok as it would have been medical hours, but with the rule change no-one knows whether it still will be..

In respect of the DLA, do it. As you say it is not for you. We are lucky DH and are are both in well paid jobs and by any standard we are wealthy. We still applied for and got DLA for DS and spend every penny and then some on him. Each private physio session we have costs £70, specialist trike cost nealry £500, then we have bought blocks of therapy at the Bobath centre, had private SALT, bought a walker for our house when the NHS wouldn't fund it, piedros, train fares to GOSH, spent money on parking, petrol etc etc etc. We spend far more than we receive although we didn't to start with. It was only after I added it all up at the end of the year I realised we spent about £6,000 more than we received last year. Now We can afford that but I would hate to think what would happen if we couldn't. If you don't spend it yet just save it until you know what you want with it.