Advice On Severe Cystic pvl
Hi,
We are new to all this. Our daughter Jessica was born at 29 weeks on the 6th January 2013 after a traumatic birth. She was not breathing when born and was without oxygen for a considerable amount of time. Recent ultrasound scans done whlst in the SBCU has shown she has progressive severe cystic pvl. on both sides of her brain. Our daughter's consultant said that this will develope to severe CP and pretty much gave the indication Jessica would be not much short of a vegetable. The consultant we found was direct and offered no hope even stating it's not even worth doing an MRI scan to see the extent of damage caused. Like so many people on this site this sort of news is devastating for any parent to hear.
The hospital just give you this information and you are left to deal with it by ourselves apart from being told to contact SCOPE for advice. We have contacted scope and awaiting the visit of a regional advisor. Our daughters consultant says to enjoy our baby girl and just await for signs of CP to show however didn't even say what signs to look out for. We have found it's only looking through the internet do you gain any information.
Reading other blogs on here and the internet, people say to start any treatment as early as possible. Early intervention programmes which may help limit the longterm symptoms of cp.
Jessica is now home from SBCU but is still five weeks premature. As a preterm baby goes she is doing well with movement, vision, hearing and seems to be feeding well from a bottle but we know this can change. This is why we find it very hard to come to terms with what lies ahead and at the moment taking each day as it comes. You cant help but think that you look forward to seeing your children grow up but we feel after this news it's the total opposite.
NHS physio briefly examined jessica and recommended exercises mainly for pre-term babies such as tummy-time and positionng exercises for improving her strength. We have heard about ABR which has had positive reviews but are still unsure whether to start this as jessica is still of a very early age and still has an open pda valve that we would'nt want to put under stress.
We would appreciate any advice from others in a simular situation or other people that have gone through this. We are finding it difficult to know who to contact for the best way forward.
I know we have put quite abit down but we appreciate you reading our blog and hope to hear from anyone soon.
Hi silverstar iwas just wondering how Jessica is now and whether you've noticed any signs yet? My twin boys were born at 29 weeks on 7th may and had no problems with them so we were quite shocked when it showed that Isaac had cystic pvl which they think is from the infection I had. But I've had to research everything on my own and I know it's a case of wait and see but it's hard when your there mum. Isaac is now 2 weeks corrected and had another head scan today the cysts are there but the sonographer said the white matter doesn't always show up on the ultrasound well this is no good to me I want to no the extent of the damage and believe they should do an MRI on babies that have this so we are not sitting around and waiting.
To a point you do have to wait and see what signs present - it will take time and things may change. And then look to treat specific issues as they appear. I remember for me this part was really hard as I wanted to know what to expect.
For example in my son's case, when diagnosed by MRI at 8 weeks, he presented with slight stiffness in his legs but apart from that appeared normal. So I did some research and assumed spastic diplegia and began doing stretches and other things assuming that. However over the next few months his condition changed completely, the stiffness went away and other issues appeared - dystonia, epilepsy and vision impairment. I had to stop everything I was doing and address these new issues instead.
In regards to practical advice, the best one from me is to make Jessica as happy as possible and get her used to being handled. Whatever therapy you decide to go for, it will be far more effective if she enjoys it and wants to learn, rather than crying and resisting.
Also, put the rest of your life in order - initially things with Daniel were quite slow, but then all of a sudden he was having 3-4 appointments per week and I was glad that was all I had to worry about!
Sam.
Hello hon,
What a terrible thing to have hanging over you... I don't think consultants have any idea how news like this affects parents - like you we were just left to deal with it too and although it was almost 2 years ago I still remember the feeling of my legs buckling underneath me when we were told that Tom had CP affecting all 4 limbs... Scopes regional rep was great though and you'll get signposted to places that can help you.
We are in a different situation to you in that although Tom has PVL affecting the lateral ventricles on both sides, his is not cystic and not progressive. The effects on Tom are as follows:
He has a significant motor problem affecting his arms and legs causing spasticity in his muscles
He has problems with balance and co-ordination
He has difficulty chewing well
He cannot control his movements well
He has low tone in his trunk so sitting is difficult
However, at the age of almost 3 he can
Talk - lots!
Count to 20
Say his colours and shapes
Sit a little independently (not for long though!)
Ride a specialist trike
Feed normally without a tube
Play effectively using his hands
Use an iPad
Make friends
Make funny jokes
Have a great relationship with all of us - his 2 sisters (one of which is his twin) and me and daddy
Tell us he loves us at least 10 times a day
Have lots and lots of fun
We didn't find out until Tom was nearly a year old because there was nothing that happened at the birth or in special care to indicate that he might have any probs. My twins were born at 30 weeks by emergency c-section because I developed a type of pre-eclampsia and Iris, Tom's twin was struggling. They were small but ok and home after a month. We had a very hard first year and Tom was in a lot of discomfort and was developing very differently to Iris. They told us it was colic. After 11 months we finally got a diagnosis of quad spastic CP after an MRI scan.
From the start we have been doing Conductive Education with Tom and have found it to be brilliant for him. We have gained some sitting balance, learned to move in a more co-ordinated way, learned to roll, commando crawl, take steps with hands held or using a ladderback chair, we are working on taking some weight through our arms so that maybe one day he might crawl. He has learned to communicate well (better than his twin!), tell us what he wants and doesn't want, make choices. It's been a life-saver.
For now I would say lots of tummy time, finding things to help he lift her head and play- lots of lots of stimulation!! Talk to her all the time, look at books - black and white ones are great as the contrast makes them easier to see. You might want to try a baby swing as I have been told that swinging and spinning movements helps stimulate the fluid-filled mechanism in the inner ear that helps develop balance and co-ordination (see vestibular sensory integration on the www).
Anytime you fancy a chat just get in touch - you can find me on FB (Maria Barnes, in Burgess Hill) or just send me a message on here.
Love and hugs to you all - it seems all really terrifying at the moment but even if she does have CP, you are still going to have a wonderful time being her parents and life will have plenty of fun in store for her.
Maria xxxx