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Hi, new here anyone else with a child with cp?

(14 Posts)
verycherry Mon 28-Sep-09 17:26:38

Hi, ds3 2.1yrs is probably going to receive a dx of cp at next paed appt.

He is sat at 11 months, commando crawled at 14.5 months, crawled on hands and knees at 18 months and started pulling up and cruising a little soon after that.He has not really progressed since and is not walking.

When he commando crawled he dragged his left leg a little and when he started pulling up it was only on tiptoes and after a while mainly on left tiptoe - which he is still doing now.

I got him referred to cdc at 17 months where they initially dx hypermobility, after several patronising useless sessions with an awful physio I managed to get the head of physio to reassess him. She has since taken him on her caseload, started proper physio, got him in piedro boots and on a k walker. When we next meet with paed she will say, in her opinion, he has diplegic cp.

This has not been a shock, I have always known something was not right and actually asked paed at last app in july if it could be cp - she thought not..... But I am upset/worried/don't really know how to describe it!! This is normal isn't it? to feel like that? I have no problem with my lovely little boy having a disability just know that life is probably going to be harder for him than his brothers....(oh and I am 25 wks pregnant so massively hormonal and tearful)

Sorry I am rambling on I know, what I really want to know is if anyones dc with cp was a real screamer/crier as a baby. Ds3 screamed for up to 15 hours a day for the first 18 weeks, I knew something was'nt right - that it was too extreme. I have googled crying/cp and have read a few things saying it can be related just wanted to know if anyone else has experienced it?

Right better get the tea on....

Sneezecake Mon 28-Sep-09 17:49:30

my ds is now 1yo, he suffered from a birth injury and was starved of oxygen for an undertrmined amount of time. he had an mri scan when he was 3 weeks old which showed some basal ganglia damage, we were told to keep an eye on his mile stones and hence was monitored by the paed dr and physio. however by the time he was 7 months old it was clear he was physically behind. when the dr discussed cp with us it felt like i had been smacked with a hammer around the head.
we were in denial for about a month. but gradually his condition was screaming at us. at times it felt like i had lost my perfect boy and something had taken his place. dont get me wrong i never stopped loving him, but was dissapointed more for him than me.
so feeling a grieving emotion is perfectly normal.
as for the crying ds had colic 24/7 for the first 4 month and was impossible to put down. but even after this he still whined and winged.
we were unable to put him dowm on the floor, even now he wont stand it for long.
he still cant sit unaided, and he has weak back muscles, his right hand is constantly in a fist and his legs are a little tight but not excessivly.
but having said all this the paed dr has said that socially he is on track, and has even this week said his first!
I have heard of a study of children with cp, and 66% of children with cp, showed no or little sign by the time they were 7. I keep this in mind when I'm feeling down.
stay strong xx

madwomanintheattic Mon 28-Sep-09 17:54:38

lol, all perfectly normal reactions grin and lots of us on here with kids with cp, of varying dx.

dd2 is just 6 and has athetoid cp (originally dx with spastic quad, but now has low and fluctuating tone, cue repeat mri and re-dx)

her problems were v obvious (birth hypoxia etc) so we have always had brilliant therapists - it sounds as though your physio is doing good things right now. dd2 got her first standing frame at 12 months (for her birthday lol) and used a walking frame from about 18 months, on and off until about easter this year (5.5). she is now mostly independent walking, but uses a wc for distance and on v wobbly days. still in piedros with diff soles now.

dd2 is at mainstream and is v bright - she needs help for her physical issues, but has no lds. (she was statemented in the uk, but we have just moved abroad)

and yeeeeeeees, she was an almighty screamer for the entire first year and most of the second. at one point we could only feed her at night because she couldn't co-ordinate a swallow because her muscle tone was too high in the day. it does get easier, i promise. she learned makaton (of sorts lol) and communication was a big part of getting the screaming under control. it's also worth considering muscle spasms and pain - some kids with cp need baclofen or similar to take the edge off muscle issues.

your ds sounds fab - it's very hard when they are little and you going through the dx. take a bit of time to get used to it and let yourself have time to bawl, scream, whatever.

earlier this year we took dd2 adaptive skiing and she had her first crush on her ski instructor grin. life will not stop, it just takes a few twists and turns along the way.

when is your next paed appt? hopefully it will all go well - has anyone mentioned dla to you? if you are doing extra physio etc then he should qualify. ask at the next appt/ hv etc. you might also want to start asking about local nurseries that have good reputations. dd2 has always been at mainstream nursery/ school but has needed extra support. with a new little one on the way you might find it beneficial to think about it now smile

best wishes x

verycherry Mon 28-Sep-09 19:28:29

Thank you so much for your replies, am sitting here a bit teary eyed - am total emotional volcano at the mo.

I also have ds1 who has just turned 16 and ds2 who is nearly 14 to contend with at home - they are both quite good at being stroppy teens (though they adore and are great with ds3)which is very wearing. Dp is forces and currently posted away coming home just for weekends when I go to work so life is challenging!

It is such a massive relief/help to hear from other people in a similar position as I am feeling quite isolated at the moment.

sneezecake - you must be so pleased and proud that your ds said his first word! My ds was not uttering a thing til very recently - has been referred for SALT, but now has about 30+ words all of a sudden. My ds was a total nightmare to put down also, he only really started to improve when he started to crawl a little and has only been much better in the last 3-4 months.

Madwoman - Its interesting that your dd could only feed at night, ds never had a prob feeding but was so much more settled at night, thank god or I would have been officially insane! Skiing sounds great, bless her little crush you must have been thrilled that she had such a great time. I have cried a bit then feel bad for crying about having such a gorgeous child!

Next appt is 19th Oct, am hoping dx will be confirmed then will apply for DLA. I have a good friend whose 13 yro ds has cp, she has said she will help with all the forms etc when have dx. Am going to visit local pre-school to register him, they take all children no matter what difficulties/dx they have.

I had several small placental abruptions when pregnant and bled from 8-30 weeks am thinking this may be the cause, however paed did'nt think it that significant at initial assessment - or the excessive screaming hmm.

Thanks again for replying it really has helped, my brother has just put ds3 in the bath but he had to remove a rather offensive nappy to do so better go and check he has'nt keeled over!

madwomanintheattic Mon 28-Sep-09 19:45:53

verycherry, dh is forces too. smile

later on, make sure you register with ceas at upavon (can be done from 2 with a dx i think) and make sure dh officially registers as having a dependent with sn. (can chat on another thread if you like about this - some chaps are concerned about career management etc) <google children's educational advisory service upavon>
every 2 years ssafa runs an additional needs conference which is really useful - gives you lots of info about having a child with sn in the forces, esp later on with schooling/ postings/ transfers of health etc etc. they also have a newsletter with some good info, so register for that with the additional needs rep - there is a new one i think, it used to be heidi dudley, but her name is on the website). the ssafa additional needs forum is also something else you might be interested in.
we have moved 3 times since dd2 was born - this time o'seas (just 7 weeks ago). smile
it's interesting moving with a child with extras... but most things are possible. we are seeing the first of dd2's new therapy team for the first time tomorrow. smile

good luck with your paed appt in oct. you know you don't need a dx to apply for dla? the extra physio/ support should qualify as it is all done on the 'extra' stuff he needs in comparison, rather than a dx specifically? in your shoes i might call and request a pack now anyway (it will be backdated) - by the time it is completed and sent back you mau have a dx anyway?

madwomanintheattic Mon 28-Sep-09 19:47:36

in fact, i think the mod page has a whole downloadable pdf about additional needs... it used to be on the bottom right hand side. some interesting stuff...

verycherry Mon 28-Sep-09 20:37:23

Wow, thanks so much loads and loads of info there, will follow it all up.

Did'nt know could apply now for dla, will check it out tomorrow.

I am full of admiration that you have moved three times with all the hassle that brings, we made the decision for me to stay here with kids etc before knowing there was a real prob with ds3 but knowing this makes staying here even more the better option! However, dp has just been told he will be deployed on op tour at end of this posting (feb 2011) then he was going to request (ha ha ha) posting in cyprus but could now be very problematic..?

Will be back with questions for you when have checked out all info if you don't mind....!

Thanks x

anonandlikeit Mon 28-Sep-09 20:55:51

Hi Verrycherry, ds2 is 6 & has CP &ASD, he was born at 28wks so we were watching & waiting from day1 really.

He was the complete opposite to your ds, in that he slept constantly & ws very difficult to stimulate, he's still a lazy little thing nowsmile

It makes all the difference having a good Physio, I would also recommend OT, a good OT really can be so helpful.
My ds2 only has mild CP, he walks very wells with splints & only uses a w/chair for distance. In fact his autism is definatly more of a PITA than his CP.

I hope you get some answers from your next appnt & some good support.

Jo5677 Mon 28-Sep-09 21:05:56

Hi Verycherry,i have 5 children,my eldest (daughter)has severe CP and can't walk,stand or sit unsupported.
She screamed for what seemed like almost the first 3 years of her life bless her,excessively so. She slept so little too that i had melatonin prescribed for her.
She is almost 12 now and is such a happy girl that it's hard to believe that she spent the first 3 years of her life mostly screaming.
She adores having her brothers and sisters too and they love her to bits.
Anyway i just wanted to say hi and that i wish you all the best,take care, Jo x

madwomanintheattic Mon 28-Sep-09 21:56:41

cyp not necessarily a problem, but you would have to jump through the necessary hoops grin
it took us 9 months to get auth for this posting lol grin

what service is dh? the aff have some great stuff on their website (they have an sn rep, phyllis), but the new rafff claims to be doing good things too. grin they are even monitoring mn lol. <waves>

happy to help if i can, anyway. smile

right, school run. x

sarah293 Tue 29-Sep-09 09:55:05

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sarah293 Tue 29-Sep-09 09:57:17

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verycherry Wed 30-Sep-09 09:07:59

Hi all, thanks for your replies.

Anon - will look into OT, ask at next appt. Life plays some crap hands does'nt it? Your ds has a lot to contend with. All the usual tests have been instigated for ds3, his bloods have been done and everything is normal so far but we are waiting for chromosomes still. He has several cafe au lait spots which can be indicative of neurofibromatosis so chromosomes should be abnormal if he has this, seems so unfair to possibly have two conditions incidentally.

Jo and Riven - Jesus I thought I had the screaming bad, how are you both still actually sane? My ex bil's daughter has severe quad cp, she also screamed forever but is utterly gorgeous and smiley now - I used to think about how similar ds3 was to her at the time in behaviour, however he was quite stiff/high tone. I always knew something was wrong, even when sympathetic health profs tried to reassure me it was colic/reflux!

Riven - your dd is gorgeous, she looks likes she loves going on the bike? I have requested blue badge pack from council and started filling out the DLA claim online, thanks for all your advice.

Madwoman - All your info is invaluable, Dp is army, at the mo we have nothing to do with any 'welfare' services as he has been posted close enough to home to enable us having our own home and staying in it! But things will all change after this current posting, he has 12 years left in and I don't want to spend all that time living as we do now (although having the bed to myself all week is v v nice grin. Where are you at the mo? If you don't mind me asking or saying?

Ds3 had physio yesterday, she was v pleased with progress he has made on k walker and has improved tone in his trunk and can stretch his legs a little more already. Next step is paed appt for diagnosis, referral to orthopod for botox and splints. Also possibly MRI but I am not sure I want him to have one if they will happily diagnose on clinical presentation. Can't see point if does not change management. Does anyone have any opinions/experience with this?

madwomanintheattic Wed 30-Sep-09 17:25:04

dh is army (i'm ex-raf though lol - makes for interesting times) - we're in canada at the mo.
so, you need to get a copy of agai 108 grin a little light bedtime reading. grin it's online somewhere, maybe linked from the aff additional needs page, too i think.
we don't tend to bother the welfare folk either, but all the agencies are useful to get info from tbh, and i work on the philosophy that if i know what's out there, when i do need something, i know where to find it grin. the ssafa an conference is especially interesting and so many parents don't make use of it - all the agencies are under one roof and ready and willing to ansewr q's, it's daft not to go and absorb the info. even if you don't need any advice at the time, you pick up so much about moving around with a disabled child, waiting lists, sce education (and how statementing works/ doesn't in germany/ cyprus/ canada etc etc)
anyway, ds3 sounds like he's doing v well. smile dd2 has received fantastic support wherever we've been (i start making phone calls as soon as we get a posting order, and get existing profs to write referrals well in advance of moves. so far (touch wood) we haven't had more than a couple of month's wait for anything). she's had a whole range of lovely lovely slts, physios, ots etc etc. it's such a wrench when we move and have to leave a fantastic team behind, (esp this time actually, as it was the team that did her transition into school and statementing etc) but in some ways it does work out well - at least she gets a full re-assessment every two years lol, as each blooming pct/ country don't believe a word that the previous one says and re-do everything to get their own baseline. grin
right, our shipment arrived yesterday and i've got to get her wc out of the box lol (been using a pushchair for the past 3 months. not a happy bear grin)
good luck with everything - i tend to have a snoop round here every few days, and do check for new posts on the forces sweethearts threads. there are a few on there who know a bit about forces additional needs policy too.

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