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.

Waves to everydayaschoolday - hope dd2 enjoys school x

it's in the primary school, but it's just the nursery setting. DD2 is excited as it's going to 'school' like her big sister . She's staying on there for primary school the following year.

muchado I like the trike idea, what trike did you have for DS?? Is it one of those that the child pedals and there is a stick attached so parents can push too?? We have a scuttle bug which we had for DD1 but DD2s legs are not quite long enough yet.
Also thanks for mentioning plates will ask about them when we have our meeting.

things do seem to be going okay albeit very slowly at the moment but one area of worry that pops up every now and then when movement is going okay is speech. Her understanding is excellent, she knows all her body parts, understands all we say, can follow commands brilliantly, but actual words are slow coming. She calls mum all the time and says Yes, shakes her head for no, also says there, hello when on the phone, addy for daddy, in there and points, but these are not particularly clear, she babbles constantly as if she is having a conversation with you. But if I ask her what something is or say 'dog' for example her standard reply seems to be 'adda' - I know every child is different but does anyone have any advice or stories as to how your DC speech developed and how CP can affect speech?? I worry I only hear the same sounds. We are under SALT but not seeing them again until end of March.

Hi summer, our DD2 (2years, 7 months) is exactly the same with speech as you have described. We have been having SaLT reviews for nearly a year now (every 2-3 months), and they have only just agreed to put her on a 6-week programme of one tutor session per week. However, there is a waiting list and it probably won't start until after Easter. I was told it was unusual to get a course allocated as she is still so young, but given her concentration and understanding, they agreed to 'enrol' her.

I'm also interested to hear of other speech development advice and stories too xx

Hi, we started with a normal child's trike with pedals at the front on the front wheel, but then got a second hand tomcat trike which is great. Lots of trikes can be paid for by charities but they are expensive. Tomcat gave us the list if charities after they came round to show us the trikes.

In respect of speech ds is a fairly typical child with diplegia and speech was largely fine. He was late to start talking, but had 50 words by 2 so we have never had SALT. His pronunciation is not perfect but as with your children his understanding is probably better than average. His language really came on at about 2,6 and keeps improving. We are going to see a private SALT however to see about pronunciation as there are some residual concerns but we can't get anything on the NHS. (No change there). We have been told that the problem is probably low muscle tone in ds mouth as he has low muscle tone everywhere.

Oh, the best advice we had about speech development if it is low muscle tone is straws. Ds now uses fancy straws most of the time and that supposedly strengthens his muscles in his mouth. Blowing does the same so bubbles, both blowing children's ones, but also blowing in the swimming pool etc. anything really that engages his mouth. We were also told to speak more slowly so ds can copy us (I keep forgetting that) and to repeat back what he said correctly when he is not quite right. That has worked quite well.

Everyday let me know how dd gets on with speech.
I am going to try not too stress too much.
much thanks for the tips - funnily enough dd has just mastered the art of drinking through a straw and loves it !! So next will be blowing bubbles, and speaking slower - hmmmm that might be tricky

Morning everybody.
I know that usually ppl just post about practical stuff on this thread but I didn't know where else to ask.

dd is 19mo and was diagnosed in September (4 months ago) ever since it feels like I've been walking around with a weight on me. Does that feeling go away?

goneHaywire DS was diagnosed at 11 months and it has got a lot easier over the subsequent months (we are about 3 years later now). It isn't always easy, but it gets easier as you get to see the child you have growing, and adapting. I was a mess for about 9 months post diagnosis, but through myself into doing something. My MIL got very ill and died in the same period though so I was a mess for lots of reasons, and DH was very occupied with fighting for care for his mum, rather than DS. It is a kind of grieving process though, for the child you thought you had and as such it takes time.

So does the feeling of their being a weight go, in my case I would say mostly, but sometimes it comes back usually when you are fighting for something for you child (in our case a statement), or when you child is ill or for that matter you are and you feel down generally.

And as for whether this thread is practical, in my view it didn't start out like that, it started out because inhibernation and some others (me under a previous name, galena) wanted to share experiences and feelings. And the parents with older children helped as they answered the questions similar to those you asked. I think as out children have got older we are perhaps here less often but we will listen and we do know what you are going through. Every question and thought is therefore just as welcome and valid as the others.

Hello gonehaywire - you can talk about anything you want on here. practical stuff and emotions. We are all going through it together.

I can't comment fully because dd (who is 2, 21mths corrected) has not yet been officially diagnosed, however, I know she has CP, her physio and salt etc talk like she has CP and the nonatal consultant has put it in a letter. So it is only a matter of time.
It does get easier, the first year of her life, I was a mess, depressed and fearful of our future as a family. Looking back I needed that time to adapt/grieve etc. But now I can cope, it is manageable and less of a heavy weight. Don't get me wrong, the worry and upset still gets me some days but on the whole there are now far more happ/normal feeling days than sad ones.
How is your DD affected?

sorry I just reread my post and its confusing. My previous name was not galena, she is still here under that name and was when these threads started. I just change name a lot for different reasons and was here under a different name then.

Thank you both

everysilverlining Thanks for clearing up the name confusion. ..

summersdaydreams officially they are calling it "evolving cerebral palsy". According to her MRI the part of her brain that's affected is the bit that controls movement. so she has trouble with muscle control and coordination and has low tone in her trunk. affects her swallowing --> weight gain, speech, gross motor, control of her limbs, fine motor skills.
She is improving though

How does everyone manage their DCs naps around all their sessions and therapy?

DDs sleep schedule had pretty much gone to pot. everything seems to happen during the time when she would usually have her nap (11am-1pm). I've tried changing her nap time but she hasn't adapted well.

she won't settle down to sleep even though she's extremely tired. It's worst at night every night; for weeks now she either fights till 11pm or midnight or wakes upin the middle of the night but still wakes up around 8am. By the weekend she had massive sleep debt, on Saturday she was floppy and couldn't keep her eyes open.

What can I do? .....

(Her bedtime routine; pjs on, brush teeth, milk and story)

I just insisted on therapy at 9.00 am as it was the best time for DS. I have moved a bit since but as I was back at work by the time DS was diagnosed the therapists actually accoodated me (when they offered therapy at all). We don't get much therapy and never did though. Sorry that's not much help.

Glad DD is improving - same with DD but it is sloooooow !

I request times which suit dd and on the whole these requests are granted. DD also sleeps at 11 for 2-2.5hrs, so physio, SALT, Portage and private stuff are usually 930 or after 2.

DD needs her sleep so if she doesn't get it, the sessions will not be productive.
Only things that can't be changed her outpatient appoints which we have to just go with but these are less frequent.

Has she just recently started to not settle at night because of the change in routine? Could she be over tired?

Hi we are moving home soon and I was looking for some information from those who have moved and had to change all health professions.
Is it quick in getting new physio, consultant etc.
The last time we seen physio she told us if we were not moving she would be getting dds splints sorted now. Dd had started pulling to her knees the last time physio was here but has since been pulling to her feet. Physio told me not to encourage dd to her feet (so I didn't ) but she is pulling to her feet on anything and everything.
I'm now worried about dds foot/ ankle.
I contacted all health pro's when we found out we were moving, each one has told me they will try to find out who our new one will be and give them all of dds medical history. In the hope to have her new physio,hv, consultant etc quicker.

Don't have any experience of moving sorry, but my dd, loves to go from knees to her feet too.
From my understanding, the reason our physio doesn't want it encouraged is the way dd does it. She goes from knees to both feet (somehow) and does not go through half kneeling. (I.e one leg kneeling, the other foot flat before standing. Also her feet are not always flat when standing. Providing she does it the correct way, and feet are well positioned, physio doesn't mind as I think she doesn't want bad habits.

We moved from Spain to UK. Ask for a summary report from all your professionals. Don't rely on them just sending them on, you need a copy to physically hand on to people. I think I contacted Childrens Services via our new councils website. I managed to get a meeting with peadeactrian, SALT, Physio and OT the first week we moved to the UK. And they took it from their referring us to Neuro etc. I think different areas do it differently though but start asking for copies of files now!

Dds consultant said she would try to find out who dds new paed consultant would be and send them a summary report, but also a copy to us incase she can't find the new consultant.
Physio says she is going to come round before we leave ( Mon) with excercise sheets and also a copy of what dd needs physio wise.
Iv already contacted the new doctors surgery and got an app for dd. They asked me to get dds gp to fax a copy of dds medical history so her new gp can also get referrals in now.

Thanks for helping

Does anyone sometimes feel swamped and confused about the best course of action to take for their Dc? And feel they should be doing more??

I feel little summer is on the verge of a break through but has been on the verge for ages (this may be optimistic and hopeful but I feel it.) and I am doubting what we are doing and whether or not to try some new therapies.

I have been researching lots - but there is soooo much. How do I know what to do? I don't want to be chopping and changing but how do we know what really does work?? When should we give new things a go?

we are considering the 2 week intense course at Bobath.

Then there is ABR - which says "if you want to improve the child's functional ability, you must first address the child's structure" . Which makes sense? Does it?

We are currently doing weekly ABM, which I think has contributed to her surge in development which only started once we did ABM. And we do fortnightly Bowen. (Only had 2 sessions and DD is so relaxed when having it done)
Should I Continue with the ABM, or Consider something new? How do I know?? If you have done a mixture of therapies how did you know???

I know no-one can give me an answer but I feel I need to get it out to people who hopefully get it and are in a similar boat and don't think of me as a mad mother. The alternative thrapies are a lot of money and I don't want to throw money away, when we are not loaded, but I need to know I have done everything for her to help her reach her potential.

Summery... What can anyone say apart from hand over that crystal ball it's my turn!! .

I don't want to comment on the different therapies because some people have said they work but not for others. It is just so difficult.

What I would do is look at your child and consider the quality of her movements and the strength behind them. If she is (for instance) pulling herself up on a horizontal bar from high kneeling, going to one leg kneeling and using her leg muscles to push up to standing with nice flat feet and straight ankles and flexed elbows. If at the same time she is making compensatory balancing movements at the shoulder and pelvis and looks stable, I would say you are doing the right things. Basically if the movement looks normal then further normal movements will build upon them and you are just waiting for confidence to kick in.

If the movement is of poor quality, then it will be the foundation for further poor movements which eventually lead to deformities. That's when you need someone to look with a fresh eye and consider a different approach.

It doesn't matter how slow the physical development is provided its on an upward trajectory. CP children tend to plateau then leap up, then (frustratingly) plateau again!

Thanks sneezecake - if only my crystal ball was more in tune I'd most certainly lend it.

DD does not always follow the exact movement pattern you describe but sometimes she does and she is improving. it doesn't come natural to her, she has to figure it through step by step, so if she is excited by something, it all goes out the window because she wants to get up as quick as she can and anyway she can. So like you say I am concerned that bad patterns will lead to further bad movements.
So as I have some savings i want to use but just do not have a clue which therapy to go with......

we went to Bobath. It was good but not a magic wand. It helps but if you have a good physio/ot who is bobath trained it won't be rocket science, also I am not sure how old your dd is because some little children struggle with daily physio.

we have just got our statement through and it appears that ds has full 1-1

Congratulations on getting the Statement :) It can be a horrible process. We've got 1:1 as well, but teacher has told us the TA supplying the 1:1 will be used for all the class. So not really sure how that works. I'll remain open minded as we've not had a meeting about this to explain yet. It's for a nursery place in mainstream school starting sep 14.

Hi Summer. Sometimes having so many options can make the whole process seem so much harder, can't it? You mentioned savings paying for whichever therapy you might choose; have you applied for DLA?

DLA won't help by cutting down your options , but might give you the finance to try more of the options available iyswim. Or try the more expensive ones which you might regard as being out of your current financial reach.

I have to admit there are a lot of therapies I haven't looked into closely but I know exist (hippo therapy etc), because we're trying one thing at a time (Bowen) and we have to accept that there is only so much we can throw at DD2 at a time . I adventured into Bowen purely based on a recommendation on this thread (pg3 iirc). I believe it is working for DD2. I think there is a 'danger' that if you're doing an lot of different therapies, it might be difficult to distinguish which is the positive one 'maximising the potential' as my paed put it.

But I get you in feeling the need to do more.

I threw myself into applying for Statutory Assessment, applying for DLA and sorting the school placement. Now that they're in place, I'm a little at a loss. So I'm playing email ping pong (in a constructive way - council are being v helpful) with the council re getting DD on County Council's Disability Register (who knew??) which will then get her a Disability ID card for discounts/free access to parks and attractions etc amongst other support; and getting a RADAR key etc. I need to do practical stuff to feel like i'm making a difference, although I think this can come across as quite cold to some. I think i'm fulfilling my practical-needs with admin type stuff, because there is only so much therapy I can arrange and make DD2 attend .

I'm not sure if all that made sense, I'm really tired and going off to bed. But wanted to assure you that, I always feel like I should be doing more, and I'm never entirely sure what I'm actually doing is the right thing…. (except for applying for the Statement, cos Chatee told me to ).

If you think the ABM is working, why not stick with it a little longer? I frequently ask our Bowen therapist for a review of his opinion of frequency of visits and how he thinks DD2 is doing. Perhaps ask your ABM therapist for their opinion if they think its worth you continuing for a bit more? You are DEFINATELY NOT a mad mother! Just trying to do your very best like the rest of us .