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.

Oh and another question. Can anyone recommend a forward facing car seat?? Dd is very almost 9kgs, has a weakish core but has started sitting independently with good head control? I do feel she needs something with a little more support than the one my eldest has? At the minute she is in a maxi cost pebble one.

Memo,
It's a long time since my dd was a baby - she will very soon be turning into an official teenager( has been acting the part for a good 12 months!)
But what really helped my dd was lots of massage style moves- really you could look at it as the first steps to physiotherapy....I did it with my dd as a friend with a really early premmie baby had been shown by the physio and I had sat and watched (and did) to help her.
I started literally from a couple of weeks after birth ( dd had a dislocated hip and was in her first harness by 3 weeks) so I only had her arms to touch without causing any problems.
Basically my dd was late to be diagnosed- was originally a spastic diplegia but when a lot of time was spent assessing her (and MRI) and the docs talked to us , the diagnosis was changed to cerebral palsy quad with left sided weakness.....the massage/physio and stimulation from such a young age (when the brain is slightly more malleable?) had improved her arm function.
Try and get in touch with your health visitor- they may know of baby massage classes(ours were ran by the nursery nurses who worked under the health visiting team and sure start) and if you don't feel comfy with going to a class due to your dd's additional needs then speak to the hv and ask would it be possible for two or three short 1-1 sessions in your own home.
Congratulations on your dd - it's a long time since I had a baby snuggle in our family xxxx enjoy.

chatee hi are you around (or anyone else who can chip in that's been through the statementing process)? Thank you so much for the advice to start the SEN process. I've done this and the LEA have confirmed that they are processing my request (I should know whether they're going to assess by 26 July).

In the meantime, they have asked for details of all our medical support so they know whom to get reports from. However, in addition to this, they've asked for a parents statement with a number of very open set questions about DDs condition, what she can and can't do etc. Additionally, they've said that she'll need a medical review and a psychological assessment. I'm content to complete all the paperwork they have sent me - it all seems straightforward, but are they're any pitfalls I should be aware of? I was going to photocopy some of the reports we've had from the consultant and include them in my return - good idea? They said that all information gathered during this process will be shared with all other parties.

I think I'm being unnecessarily cautious - it seems like a big scary test or something. I should be open and give them everything I have, right?

Everyday We have just applied for SA and were advised to give them all evidence as you are not supposed to withhold anything. You might want to ask this question on the main board as there are plenty of people who have done this many times.

Thanks dev9aug. You confirmed what I suspected - to give all the evidence I have. Thanks :)

Funny i was advised to hold back on reports from a couple of people to give you something to put in in case you need to appeal, as new evidence allows for reconsideration!

Thereonthestair We used an advocate and pretty much every report we have was included in the initial request. I asked the same question as you as thought it might be better to withhold some reports. If i remeber correctly, it was because if it did go to tribunal, then the panel might not look too favourably on that. This request was for SA for dc with ASD and we are asking for provision which is not the norm so in our case it could be that we were front loading the case. This advice might not apply in this case or I could very well be wrong, this is why I suggested posting on the main SN board as they have more knowledge about SA than I have.

It may be because I have a couple of very on board experts (one has even been to the private school we are applying for to look at the stairs)

The other news from us is that it looks as if we are going at least try to get an assessment for SDR. Still not sure if we want it, but now also worried that DS won't qualify due to core strength and the nature of his spasticity.

Just a quick update on DS's SDR. He is now 2 weeks post surgery and the difference is amazing. I must stress this was not done for mobility but to make him easier to handle. He no longer cries when his pad is changed and he so relaxed when being dressed.

He no longer needs Baclofen 4X a day.
The care we received at Nottingham was superb

Can anyone help with muscle spasms? DD had a 'moment' today-her legs gradually got tighter and tighter and then completely seemed to lock for a bit, one from her hip and the other from her knee. She seemed in so much pain; she screamed until she fell asleep. She didn't fall or land awkwardly so I can't think what else caused it and was wondering if it was a CP thing? After a very short nap and some Calpol she seemed better, if still very tight. Hopefully just a one-off...

Hi I am new here. We had our dd4 nearly 16 weeks ago, she suffered a stroke at birth which caused the brain damage. I did start my own thread and was told about this one. I am still learning about cp and everything thatthe condition involves. Dd4 has her eyesight,hearing and is using her right hand and leg buthoth are weaker than the left. She has a physio that we see regularly and her paed. She also has a diet and nutritionalist and speech and language therapist that we met at the hospital before leaving but do not see yet as baby is too young.
I am a little bewildered by all that has happened. I'm glad this site is her as it has given us a lot of info about the condition. Also I had a read of hemihelp last night and it was really informative.
Anyway just wanted to introduce myself and say hi

Just noticed that my last post did go in. I couldn't find itbefore so added another one. Feel a bit silly now:-o

Hi melmo welcome to the thread! I'm only about 18 months ahead of you, so understand you're on a steep learning curve. It looks like you're getting much the same support as we have, although we've only just got SALT involved as DD2 has just turned 2. Please ask about anything, or post on updates to say how you're getting on. I've found the guys on here are lovely.

amymouse I hope your DD is feeling better. I wonder if you could get an emergency physio appointment to see if they could loosen the muscles . Sorry I can't help with muscle spasms, but hopefully someone more knowledgable will be along shortly .

2old2beamum so,so pleased DS SDR went well and you're seeing real improvement to your lives.

Hi Guys my DS2 is Now rolling over really excited about this!! so pleased for him taken it as a good sign as he was so determined. still not sitting up. but one step at a time. we are looking at putting him into a nursery just for one day a week for him to think he will enjoy the environment I was just wondering if anyone else has done this and is there any advise. they seem really willing to help and do what they can in order to make it the best place for him.

Choggers Congrats on the rolling over!! That's an important step forward - he's mobile! My DD used 'rolling' around the living room to get to where she wanted. What age is you DS2? Our DD2 is now 2 and not been to nursery yet, but is always keen to play with other little kids when we're in the park etc. I'm interested to hear how your DS gets on at nursery - keep us posted!

Hi thank you for the welcomes. Was just wondering if I could get some info about when your dc was diagnosed as having cp. Our physio kept saying 'babies with hemipligia' matter of factly but we have not been told anything by her paed. How is a diagnosis done? Do we get something saying she is hemi. I really have no idea how this is done.
Dd rolled onto her tummy today all by herself for the first time:-) her right hand did get stuck so she rolled back but all good progress. She sleeps all night which is great for us but our other 3 dds did not. Is this a sign of cp?

Excellent news on rolling front Choggers and melmo, must be something in the summer air!

We got dx around 2nd birthday. It was first mentioned as a possibility a year before by paed and quite early on by physio. We went to an assessment and the paed mentioned it was "likely" DD has CP. 3 weeks later the typed up report plopped through my front door with the word 'diagnosis: a cerebral palsy' in bold type up the top. So that was that! Diagnosis was primarily formed on spasticity present within muscles, primarily legs. She has brisk reflexes in left arm and both legs as well as development delays in most areas. We did have an MRI done post-dx but it didn't enlighten any further.

Wow so it takes quite a while for them to confirm. Dd has had 2 mri's now. 1 at the hospital to see why she was stopping breathing and having seizures and another 1 about 9 or 10 weeks later to make sure there has been no further damage or there is no 'crinks' in the veins and vessels in the brain so another clot won't form.
See the paed on 2nd Aug so hopefully will get some more info from her. Will get to see her mri scans

Brain damage was confirmed by MRI at just over one year. Hospital paed consultant confirmed CP before we were discharged from his care to community paed consultant (at 18 months) but we never had it in writing. We just got it in writing (this month) after DD2 first consultation with community paed consultant. So same here: 2 years old, diagnosis confirmed in writing. It was detailed as part of an initial consultation report.

Anyone have experience with Baclofen (oral)? DD is 2.10 with spastic diplegia and her legs are getting increasingly. Physio and paed are keen to trial it; I keep swinging from one side to the other. My main concerns are she also has mild obstructive sleep apnoea (possibly due to floppy pharynx? Uncertain) and reflux. Also using a muscle relaxent seems a very big step!

*increasingly tight I mean, although they are also increasing!

everydayssschoolday DS2 is now 10 months, i thought it was a bad idea at first but i am coming round to it as he is sooooo nosie and loves just watching kids i think it will be great inspiration for him. yeah im secretly hopeing the rolling over is a sign of good things to come!
speaking of drugs for children when normally do people look at them for there children as i dont think DS2 needs them but then i also dont want to think of him in pain and me just unaware of him needing it.

I was really interested in your "how we got a diagnosis" stories. I feel as if we still don't have a proper diagosis. So far all we've been told is that MRI scan shows periventricular leukomalcia and that therefore all DS1's problems are cerebral palsy related. How do I push for more information?