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.

Glad I could help everyday. Having exactly the same dreams before! We all want our kids to be happy, healthy and lead fun interesting lives. CP changes none of that!

As an aside! I have a friend whose mother was a single parent and an open lesbian, quite avant garde in the 1980s. You would have thought she would have got bullied because of this, but no! Bullying is random, not because of surface "issues". Xx

Your post comes at such a perfect time for me Beautifulbabyboy - DD is 6 yrs and starting to ask a lot of questions about her CP and 'why' things are more difficult for her than her friends.. I love your advice about dealing with these issues - thank you

beautifulbabyboy I echo what the others have said, you give a really different perspective on things thank you !!!

Does anyone have any experience of clonus in the ankles?? This was one of the first concerns I had with dd. she had a few beats of clonus in both ankles however this stopped when she was 5 or 6 months corrected. However, since we have started standing and encouraging shifting weight from one leg to the other it has returned. Not always but is very noticeable after a session of standing maybe 4 beats or so. What does this mean if anything? Or is it just one of her things?

I know that dd had clonus in her ankles from her paed assessments but never been sure what it means exactly. When it was mentioned, the paed said that put together with other factors, it's just an indicator of the brain injury and may or may not be significant in predicting an outcome for the child. After about 6 months, our paed didn't mention it again so I guess it can settle?

Does anyone every feel like ppl are watching them when they're out? ... I especially feel it when I'm at church with dd

Beautiful so good to hear from someone who has grown up and isn't being held back! I think that has always been one of my biggest fears so really good to read your story.

Albaba my DD took her first independant steps a few weeks before her 3rd birthday this September. She is still unsteady on her feet but has SUCH determination and it is just so precious to watch how thrilled she still looks every single time she lurches across the room! Her confidence is growing all the time and I'm sure your little girl's will too.

We have had a relatively quiet time in terms of CP; DD was doing really well and then a few weeks ago go RSV and we wound up in intensive care where she needed ventilating as her lungs are still a bit substandard thanks to her prematurity. After nearly 3 weeks we are home (hooray!) and now on the long road to recovery. Her chest is now fine but it is obvious how much strength was sapped. She is now back to sitting on her own and can do a lopsided crawl for a few 'steps' until her coordination goes, but it looks like we have a while to go until she regains walking/standing. I have 100% faith in her that she will get back there in her own time-she is FAR too determined to do anything else, but it still tugs on me to see how easy it is for her to go back a few steps and how much she is struggling with her spasticity again in her lower limbs. Onwards and upwards!

Hope everyone else is well!

gonehaywire I know what you mean about being watched but maybe for different reasons for me. When we are all out together, us and 4 dds we are always looked at. We also get lots of comments like, " oh your a glutton for punishment" " are you going to keep trying for a boy" etc etc. I'm not a church person so can't comment on that.

amymouse glad to hear your dd is on the mend. My dd seems to be really determined too. She is pulling her knees up into the crawl, she rocks back and forth trying to move until the strength in her R arm gives way and she falls flat on her face. She keeps trying tho. She also just started a kind of commando crawl, she pulls herself along the floor with her L arm. She is just so determined to get moving.

Does anyone know of a good Xmas present for my dd. She will b 9 mo by Christmas and we are not sure what to get her. Mil has gone and bought her a baby walker! Not sure if I should use it as physio says it could affect her gait. We were thinking of something that will encourage her to sit, not sure what tho.

The dreaded v tech thing with all the different flashing, noisy musical sounds. Think its called a walker as kiddies can use it to lean on and push. It's on a nice slope so the weak neck drop thing they do is not so deadly. (Wooden corners are a real hazard). Encourages reaching, sitting and cognitive stuff. Twill drive u mad though!

Thanks for the tip. Having 4 dds 5 and under we

Posted too soon! We are drove mad all day with noisy, singing, banging, whistling toys. Sil just got 3 whistles for older 3. She must hate us :)

To encourage dd to sit we used a baby gym arch with links we could replace with whatever had current attention and interest! Dd would sit either propped with cushions or for short periods in her bumbo and reach out for toys hanging from the arch. Worked pretty well..

Like you say, depends on walker - physios always hate the sit in things but a sturdy push along can be good to practice pulling up and eventually taking steps. We had a really strong push along wooden walker with a handle and a storage compartment at the front which we kept loaded with toys for extra stability!

I've been off grid for a couple of weeks but could still do with finding out how I PM those who offered advice for statutory assessment.

Gonehaywire - everyone in our church is lovely. I found that by giving them a bit of information they are very helpful. The old ladies all adore my DD.

Can anyone tell me is struggling with weight is a problem with CP?
My DD has always been a pain for her weight but now she keeps losing weight. My HV is lovely but tends to answer all my concerns by telling me what a brilliant job I'm doing but I'm not concerned about my parenting I'm concerned that DD is losing weight. She was weighed again last week and HV said she had only dropped a bit below her last centile. When I checked she had marked her a month below her age and if it had been done correctly she it would show she has dropped to the next line.
I'm really worried which is very unlike me. We're seeing our SLT on Wednesday but I don't want to create a fuss if this is normal. I'm sure most of her calories are from breast milk which I want to stop but I'm scared to.

I'm swishing about in my invisibility cloak…but I'm a regular here, honest

PumpkinPie11

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underline epic fail . guess it doesn't like spaces between the words

melmo26 we used one of these when DD was learning to sit as it was deep enough for her to sit in

www.galttoys.com/index.cfm/playnest-farm/1002/productid/1004057?gclid=CMXo2-LnkbsCFQgFwwodgV0A9A

These Nessie cushion have just won all kinds of awards
www.specialisedorthoticservices.co.uk/product/nessie/

Thanks for the advice. We have the play gym for dd but when she is rolling around she gets tangled up in it :)
I think the playnest would be great, nessie looks cool, very well supported. I also seen a really good walker on that link. It looks like one that isn't used to sit in.
When dd has more core strength we will defo look into that some more, thanks for the links

We had the playnest too and it was really useful for sitting and balance. Also a good place to imprison Very safe place to leave a baby too while you wash up

Spoke to physio about clonus, she didn't seem concerned and said it is a sign of damage and it will probably come and go?

Wanted to post today because me and DH feel sad. And I feel sadder because DH is sad. He is always the rock, very sure and positive that all will be fine. I am still sure it will be but still feel sad for dd.

Yesterday afternoon we went to friends for Christmas gathering.

Dd was a star, smiling, chatting and was utterly gorgeous. Also there was our beautiful godson, he is 7 months younger than dd and he was toddling around into everything we are so happy to see it. The sad thing was not that dd isn't as such, I am overish comparing her to her peers, but the sad thing was she longed to join in and couldn't . everything he was playing with (the sky box, bin, christmas tree, she was pointing too and saying me me!
We are sad that she wants to move but her body just won't allow her. Other older children were running around chasing each other and when I ran around carrying dd, chasing them she was squealing and laughing so much that she was part of it.

This morning she is Wanting to move constantly. It's making me sad even more writing it down. Just part of the journey I suppose

It's always seeing other children which is so painful When you're at home you are in your own little bubble and able to see small improvements every day and rejoice in them, but it's seeing others that brings the reality home. DGS1 looks in bewilderment at his baby brother who a few weeks ago just sat and played with toys but is now crawling around, pulling to stand and generally creating mayhem. At 5 I'm not sure he understands why he can't do any of these things or whether he is feeling left out as he can't tell us

Have you looked into the wizzybug for DD? If you google it, it's a fab little electric toy car (ish)! It gives young children freedom to get around and is great fun. You have them on loan so there is no cost for the family. Elliot loved his but was a bit lethal in it as his hand control is poor. It's ideal for SD children.

summer we know exactly what you mean. We try not to compare dd4 to her 3 sisters but its hard. Dd4 is sitting for short periods of time and dragging herself along the floor, she is 8 1/2 mo. All older dds were sitting independently without needing placed in the sit position. All were crawling, dd3 was walking at 8 mo. We know this was quick but dd2 walked at 10 mo and dd1 walked at 1 yo.
We are trying to only focus on the things dd4 is doing now rather than the other 3. Dd4 is great at eating, something that took a lot longer with the other 3. Dd4 held a toy ( dd2 fairy wand, so thin stick) in her R hand for the first time yesterday. She hates anything in her R hand.

Summer - does your LO have upper body strength?
My DD has just had her wheelchair and it's great. I get the impression that Cerebra would be keen to make them for other children too.
Are you on either the SDR or spastic diplegia Facebook pages? Let me know and I'll post a video of her whiz zing around.
Initially she just went round in a circle because her bad (left) arm couldn't turn the wheels but after a matter if hours she learned how to compensate.

SUMMER, I feel exactly the same as you do. I have 26 month old twins and one is ok and one has mild cerebral palsy. She has been late in meeting all her milestones and they said that she had developmental delay. Fair enough I thought that's ok she will catch up. I just passed it off at the start she's just a bit behind as she was born 7 weeks early but 18 months passed no walking and at 21 months old she had an MRI scan which showed she had a loss of white matter and they said she had cp but was only mildy affected. We have been going to physio now for months and she has got piedro boots but still no walking and she is 26 months old.
We go to a crèche at Church every Sunday and I have started to send my dh in instead of me going as if I go I end up feeling crap because babies literally about a year younger are effortlessly getting up and toddling about and my dd just sits there. Other ones her age including her twin are running about and I just feel really sorry for her that she can't join in. I then come home and beat myself up about it. I am the same in that I complain to my dh but he just says it's no use comparing her to children off her own age as she has a brain injury and they don't but it's so hard. There are now children whose Mothers I remember being pregnant not so long ago are now running around.
When I am at home I think well she 4 point crawl, pull to stand and can walk albeit awkwardly if being held by the hands so she's doing well, its only when I go out and mix with other children that I realise how behind she is.
I completely understand your pain and the unfairness of it all.

for all sneezecake, pumpkin, melmo and albaba for all your shared experiences and words of wisdom and tips, it has really helped! Makes me feel i am not alone even in RL it feels like that at times.

Like many of you say, now we are back in our own little bubble the sadness isn't so strong as i really see the little bits of progress. I think I am having a bit of a low moment with things just feeling very tough as progress stalls somewhat ! Do you find that you are plodding along all okay and then suddenly things seem tough when nothing has actually changed??

I think I am finding it harder as she gets older because up until now I have been able to pass her off as a baby but as she grows older and gets bigger and isn't able to do the running around etcit is becoming more obvious that she has difficulties.

sneezecake thanks for the whizzy bug idea it looks fab way of getting some independence.
pumpkin I think DD has upper body strength, how do you mean?
How old is your DD? I am not on Facebook but maybe I should join. It must be fab pb seeing her gain her independence with her wheelchair. To be honest I don't have a clue about when or how to even start looking into things like this?

SUMMER, I again can completely relate to what you are saying. I too am finding it harder as my dd gets older. I too was passing my dd off as still being a baby when she's not and making excuses that she is a twin and was born 7 weeks early but her twin has been walking now for many months and she is the only one in her nursery group that is not walking.
I feel really sorry for her too that she is being left behind. She wants to do things but physically can't.
I think it is obvious to everyone now that she is not just a late starter but has difficulties well apart from my idiot of a fil who keeps making comments that the reason she doesn't walk is because she is too heavy!! Yes she is bigger than her sister but compared to others of her age she is average or a bit smaller. I think the fact that we have been going to physio for almost a year now would be a clue that everything is not right. I bite my tongue on a regular basis!
All we can do is keep plugging away with the standing frame and physio. Seeing her paediatrician next week and are going to ask about botox injections and sdr. We were always told that she is only mildy affected though so hopefully she will do things but just in her own time.

God, I bet you want to thump your Fil. I too have to deal with similar silly comments, we get regularly from well meaning family members. We get told she is "lazy" !!!!!!! I am a very placid, chilled out person but o my I just want to thump them when they say it.

I am bracing myself for this weekend, we are exchanging Christmas presents and our 8 month old niece will be there - she is already crawling and pulling to stand!

Hope you get on well with the pead next week? How is your dd most affected? Is it her legs? Like you say we keep plugging away!