support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

Yy, thought so.

So far so good with the insurance thing here. And most of the daily aids are max $500 personal contribution and then the rest is covered by the province under the aids for daily living programme. And $400 of the $500 personal contribution is covered by employer benefits, so we are ok. (well, skint, but ok, and dh is working). Still in the referral process for family support, (ss equiv) but that's because I need to photocopy the world and send it off... As soon as I've done that it's reasonably straightforward. I love living in such a small community and referrals have been v fast in comparison to uk. The adaptive community is v close knit here, and within a couple of months of moving dd2 has been embraced completely. Lucky enough that the learning support teacher has a dd with cp as well. most of the delays have been me not keeping up!

We are lucky that dd2 is not on any medication though. Ds1's is covered by employer health insurance until it tops out, and then there are tax breaks for the rest. I think we pay about 5% of cost. US is probably more expensive.

That said, we had great support in the uk as well. And may end up going back at some point, but for now, we are fine.

Thereitis... you have done amazingly well to get all the things organised the way you have, I can't really agree with the eugenics thing, as we have had a very positive experience, with everything except SLT. 3 years of weekly hydrotherapy has now come to an end and only 6 weeks block offered with a tailored program so we are disappointed with that as DGS loves to join in with the other children and the mums can see they are not alone. Sometimes the parent knows what is best for their child. Madwoman was anti a PEG for her DD when she had some swallowing difficulties and devised a way of feeding her that worked until she matured enough to swallow safely. I hate to hear parents being given dire outcomes for their LOs. Why do they do that?? OK realism is needed, but without hope of a good outcome no one would even try. And the outcomes by and large completely exceed these awful predictions! Time and again parents make the impossible possible for their children

re sleep systems. They are trying to edge the boy into one of these and did a 'symmetry study' on him recently to check his spine, chest etc...horrified that he sleeps on his tummy most of the time in a foetal position as its bad for developing contractures, but I cant see the point of a sleep system in a child without spasticity. I'm convinced a child who can have growth spurts (3-4 cm in a couple of months) and doesnt suffer any corresponding tightness can't have real spasticity, despite the SQ diagnosis! He's quite symmetrical btw!

We've also done a few alternative (or add ons as I prefer to call them) therapies, and the physio and OT has always been kept in the loop and happy with things. DGS does not have a squint but can stare right past you if the TV is on!

I do confess to carrying her through immigration when we landed, as I didn't want the wheelchair anywhere in sight. no point making problems for yourself!

I am glad the voca side is up and running, though.

Did you notice that another thread has nicked the first part of our title

Great minds lol

Great minds lol

So good you said it twice

No just iPad incompetence

Oops, lost this thread temporarily. :) Back now though. :)

wow hairy what a fab update on your blog, just want you to know that i am thinking of you and your ds and please tell him what a wonderful little boy he is and to keep up the good work.Mr Roberts is such a wonderful man and I know that he has put me at ease many times.Thanks for the link to a good b n b as we may be needing something later in the summer.
Take care

• it must be a really difficult time for the whole family, how is your other ds coping 1. without you last week? 2. without his brother? , this really worries me as like you we will be many miles away from home and my other child is really a softie and quite emotional whenever I am away....you don't have to answer if you don't want to (i will understand) or pm

We saw our paed yesterday and she has agreed to refer us to Bristol for the SDR assessment. Feeling a bit nervous now!

Chatee - it's amazing isn't it! I'm so proud of him, he's working very hard but is excited by what his body can now achieve. I'll let him know others think he's doing well too!

It has been hard arranging things with DS2, luckily we have 2 sets of very supportive and relatively local parents who are filling in the gaps. He has not struggled as much as I thought. I've been away for two weeks but spent this last week at home with DS2 while DH was in hospital with DS1. This has been really necessary, both for me to recover a bit before the next three weeks (although we will be coming home for the weekends from next w/e) and for DS2. The most important thing for DS2 though was to go up to the hospital and see it and DS1 for himself - hence the B & B last weekend. Once he had done that he was fine. He is also a big softie and very attached to me so I've been pleasantly surprised!

We are only half way through and do have three more weeks which will be without the 'excitement' of the operation and will just be hard work for us all so it could all go wrong yet! DH and I are struggling a bit, it's hard to have a proper conversation with the one in the hospital as it's so busy there so we are trying to arrange handovers where we can talk in person. I think we both deal with the stress slightly differently though and it's heads down and keep going till were all back home.

Sorry that was long!

Good luck Galena - I've heard the assessment waiting time in getting longer as it's getting more popular. At least you've got the referral, that's a start!

Oh survivingspring i was just about to click on that link! Are you able to give some other link or anything?

Thanks Hairy - know the feeling of heads down and we will discuss at home....I don't like to be rushed into making a decision and like to view other sources of info too (in a way - a little knowledge goes a long way- thanks to mumsnet).
Glad to hear that ds2 has coped so far, fingers crossed for you that both he and ds1 remain on track.
Sadly for us we have two sets of grandparents who live an hour away from RJAH but one set still work and the others one is also disabled and the other is their carer so really can't do much to help....but we will manage as we will have too.
Glad to hear that ds1 can actually see and feel the differences with his body already that must be a wonderful thing to see as a parent...
as always thinking of you all and take care x

Sorry if this has been mentioned before ...

I haven't followed this thread - but just wanted to ask -

We went to Great Ormond Street today for DS to be assessed for Botox

Has anyone has this done with their child? And if so, was it helpful? I hope no one has had any problems with it. But if you have/had could you share this too?

Thank you.

Skewiff, we had Botox - DD had it in October in her medial hamstrings, hip flexors and gastrocs on both sides, so 6 sites. It has helped a lot and she is noticeably looser since. However, the amount of stretching/physio you do afterwards is really important to the success (like with SDR). She had it under GA, and was in theatre for about 10 minutes and home a couple of hours later.

Also worth noting that, whilst it can be repeated, it becomes less effective the more often it's used.

:)

Hi sorry about that Hairy - realised that I had copied link from my email account so had to get it deleted!!

As I mentioned on here before, some interesting research has been done using a robotic joystick to increase and develop fine motor function in children with CP. Hopefully something like this might be available for more general use in the future!

Here is the link to the article www.medicaljournals.se/jrm/content/?doi=10.2340/16501977-0679

That sounds interesting jjkm - might be worth contacting one of the authors of the report to see what is out there and possibilities for your ideas? We really wanted to borrow one of these devices to try with DD but very difficult due to technology needed at home and also the present cost of them!!