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.

Silly question melmo, but have you tried your GP for the reflux/vomiting? I'm sure there is a medication that can suppres reflux but I'm not sure what age it's suitable for. ((hugs)) for little melmo.

I meant 'sorry if this is a silly question....'

Hello, I've posted here and there and then disappeared off over the summer but popped back to catch up! Sounds like there is some amazing progress and big hugs for anyone going through a rough patch.

melmo-we were told children with CP can be more likely to relux as the weak core can sometimes affect digestive muscles. Consistant vomiting it bad for the throat as coming from the stomach, the vomit is acidic which if unlucky can burn/inflame the throat lining which can put children off eating/drinking and also if repeated and left untreated be bad for health. When my DD was a bit younger she often burst blood vessels in her throat through excessive vomitting which looked terrifying! Do go back to your GP; we went through several combinations of reflux medications and different diet tweaks and are now on max dosage of a PPI which limits stomach acid production so pain isn't there. She has also been much less sick on it. We're nearly entirely tube fed so slightly different, but when we orally fed we used a thickener to help feeds stay down and now use a fairly thick puree diet down the tube to help eliminate vomiting.

DD has just turned 3 and about a week before her 3rd birthday took her first independant steps and also strung a sentence together! Her team were slightly shocked almost, got the feeling they were writing her off a bit... The only negative is that since she has made super progress SALT have gone from being useless to disappearing off the face of the planet entirely, claiming her speech is now age appropriate (though in the same breath said it was often unclear and she had only just started putting multiple words together. Hmmmm) and we have a new physio who now thinks she doesn't need to see us now DD can walk a little way on her own. I am SO PROUD of DD but also a bit nervous that her wonky gait is going to go unchecked. I would hate to see her do so brilliantly and then come down to earth with a bump in the future if things aren't kept an eye on...did others find services change and how much support do you realistically need? We had a routine hip xray this week and the room terrified DD. The last time she was there, she was sedated for her MRI but the sedative didn't work and she woke up in the scanner and panicked (understandly!). This time she simply would not lie on the bed and kept screaming "stay awwaaaaaaaaake!" so wondering if she has a memory of it :( she seems fine now, but the whole thing really shook me up again and the unfairness of what our little people have to go through.

Hi thank you for the advice everyday and amymouse
No its not a silly question, we speak to HV about dds vomiting and never thought to go to gp as no one mentioned there was any other medication. I have a gp app tomorrow so might slyly ask about dd while there :)
We thought it would be uncomfortable for dd but never thought it was painful. It's so hard when they are this little as there is no way of knowing what's wrong.

amymouse so sorry to hear your dd was terrified of the mri machine. I can see why as its huge and so so noisy. I'm sorry I can't give you any advice re salt and physio, dd is 7 mo now so we are only just starting salt.
Another more knowledgable mum will be along with some advice :)

Melmo, this page might be of some use? Gaviscon didn't work for us either, we then tried domperidone & ranitidine together which helped a little but not much and then moved onto lansoprazole and gradually upped the dosage until found one that suited.

Amymouse I'm gobsmacked that your physio feels your LO no longer required any input.
Just because she can walk a little but doesn't mean her CP has gone.
You're further down the line than us but I've been led to believe physio will continue until my DD is 18 on a regular basis.
Are you in a position to challenge the decision? I would imagine for most of us the physio is the most important professional involved with our children.
Your daughter needs physio to stretch her muscles, improve her gait & prevent complications surely?

Hi Amymouse I remember you from earlier in the year - welcome back!

I agree with Pumpkinpie11. Our physio is doing very little at the moment as DD2 is making such good progress. But, she's regularly reviewing and still holds regular visits with us as she's concerned that when DD2 gets growth spurts, the muscle lengthening might struggle to keep up with the bone growth. Apparently this can be quite common and we might see DD2 start to walk on tip toe - so she's watching out for this.DD2 is 2 years 4 months.

Amymouse I've not been impressed with our SaLT provision either. Told the Paediatric consultant, as we've been so impressed with all the other therapists and staff, and consultant said sympathetically that we were getting more than some who are in a worse position, but it still wasn't very good

Melmo aww 7months . I remember those days. Yes, very tiny still and so difficult to know how they're feeling. Hope you get some helpful advice from the GP today x

Amymouse - brilliant that your DD doing so well Am bit that physio would discharge at such a young age though. DD is 6 yrs and still has 6 weekly physio - we don't get much to work with but I'm relieved that she keeps an eye on gait and muscles. Just as everyday has said, there is the potential for tiptoe walking or intoeing due to bones and muscles developing out of sync with growth.

With SALT - DD was always getting discharged so I would just ask for another referral to re-assess…

Thanks amymouse for the link. We've been keeping dd upright for longer after feeds and its helped loads. Thanks

Amy mouse - Its fantastic news your dd is walking and talking! I agree with others, I thought physio input would continue.

I just wanted to shout from the roof tops to people who understand. My dd was lying on the bed just after her bath and I was chatting to DH, we turned to look at dd and there she was, sitting with a great big smile on her face. [Grin] We cannot believe she got herself from lying into sitting. I welled up with joy, she will be 2 at the end of the year.

To lots of people this isn't a big deal but I know you will understand the hugeness of this little step!! I just want to tell the world!

That's wonderful Summerday

That's a massive deal summerdaydreams! Well done to your dd. I hope you didn't have a mad panic running round the house looking for the camera as we did when it happened at about the same age! A lovely memory to treasure and, no doubt, just one of many more to come. Celebratory for LittleSummerDayDreams

Congratulations little summery We all understand the miracle that's occurred!

One thing we did was to make a scrapbook with pictures and notes when the inchstones occurred to celebrate them. Things that occur around 7 months that happen at 18 months or later and that you wouldn't notice in a NT baby/toddler like crossing the midline, passing things from hand to hand! We are now looking at dgs2 7 months and getting all flappy about things I never even knew were important!

Thank you everyone! Although, She has only done it 3 times since.

sneezecake I completely understand what you mean about DGS2. With my eldest I really didn't appreciate the miracle and importance of all the little things that just happened and now I find myself looking in amazement at typically developing babies as they do transition and such like with great ease!

Can I ask everyone at what age did your dc start sitting at. Dd is sitting unaided for about 2 mins, physio was out and said she thinks dd will be able to sit properly by the end of the month. Dd is 7 1/2 mo, we have 3 older dds who were all sitting by 4 mo. Dd will be 8 mo at theend of the month and was wondering if this is about an average age?
Also I don't really know how to ask about this as I think dd may be too young but dmil keeps talking about DLA. I'm just not sure if dd would get it at 7 mo!

Hi Melmo I don't think there is an age limit on DLA we get it for my DS2 and have had it since he was about 4 months old, as for the sitting I don't think there is an average my DS2 is 14m and he still cant sit unaided getting better with practice bt still not there yet. :)

Melmo - DD was sort of sitting by 9 months but with a weak core so often fell backwards. We still had cushions behind her at 1 yr old just in case. She wasn't really steady sitting until she started crawling at 15 months which really helped with the core muscles. Wow - 4 months is pretty early even for an NT child!

I didn't apply for DLA until DD was 3 yrs old but you can get it much earlier than that. If you are going to apply definitely use the cerebra guide to help with the form www.cerebra.org.uk/English/getinformation/publications/Pages/DLAGuide.aspx

Hi melmo. DD2 sat unsupported at 19 months. She's now 2y 5m.

I applied for DLA for DD2 just after she turned 2 (really should have done it earlier). Minimum age for the care component of DLA is 3 months, and is older for the DLA mobility component - 4 years I think. It's all on the DLA form, and it and the Cerebra guide explain it all very clearly and simply.

DD2 has been awarded mid level of the care component, but is yet too young for the mobility component. If you request the form over the phone, they'll date it with the date of the phone call. If you then get the form back to them within 6 weeks, then your dd will get any award for dated back to the phone call date.

Hi everyone and thank you for sharing.
We can't see dd sitting independently in a few weeks so were just looking to see when others did sit.
Thanks for the advice re DLA, I guess we should maybe try.

Dd first sat at about 15 months corrected but not always reliably so. She is 19months corrected now and is far more steady and only topples after a long while. My eldest, with no health problems sat at 5.5 months yet My best friends sat at 8 months. It really does seem to vary.

Yes, Apply for DLA. It is well worth it. We have been on it since discharge as dd was and still is on oxygen. But we were informed that even when she comes off of it, we will continue getting it because of her CP though more likely middle level rather than higher rate that we are on now.
The forms are quite time consuming and daunting at first but our HV under CDT has been brilliant at assisting when we needed a renewal.

Hey melmo. The horrible thing about the form is you have to write about all the things your dc can't do. Normally we are so positive about our dc and celebrate each small success. I found the negative reporting quite difficult. I have since realised that I don't see dd2's disability, I don't really consider her 'disabled', she's just dd and is perfect as she is .

We are the same, we don't see dd as disabled. She is just our beautiful little girl. I completely agree with seeing all the positives. I don't think I would even know how to point out only the things she can't do.
So does dd4 having cerebral palsy mean she gets the DLA as that is what MIL keeps saying. We really are clueless about all of this. I really appreciate everyone on here, you have all been so informative :)

You definitely need to use the guide Melmo as even with a dx it's important to say through the form how your dd differs from NT children of the same age. It's a horrible process - I felt really grim after filling out the forms but worth it if you are awarded.

You're so right everyday - I struggle to think of my DD being anything other than amazing!!