Does your child have PVL and Spastic Quadriplegic? Would like some support please

Cathy35

Hello,
I'm new in this site. I have a child 6 weeks earlier delivered and he will be 1 year old this 29th of December. The MRI showed that he has bilateral extensive white matter loss damage PVL Preventricular leukomalacia.  And he was just diagnosed Spastic quadriplegic 3 weeks ago. I'm very worried for the future of my son if he will be able to walk and talk.  The neurologist said she can't predict for the future because every child is different . The evolution of child is different . I hope some mothers could talk to me on here with the same diagnose of my child.
 Thank you
Best wishes to all mothers here.
Cathy 

steve51

Hi @Cathy35

Good Evening it’s great to meet you today!!!!!

It’s great to meet you today!!!!!!

We have got some info for Parents here on our site/community.

Here’s the link below for you, please please have a good look ? to see if it’s useful for you????

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=http%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies&index_url=http%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies&auth=9b0WKeGks0x63ClDi2Ljkw&profile=_default&type=FP

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies&index_url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies&auth=lhnRIbEbStQ6iQe%2FegEpTA&profile=_default&rank=1&query=Family

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Fservices%2Finformation&index_url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Fservices%2Finformation&auth=4RxMuZJo7ufNgzuZI7Ixsg&profile=_default&rank=4&query=Family

Please please let me know if I can help you further????

Ami2301

Hi @Cathy35 welcome to the community!

 Sorry to hear this, ws understand this is a very worrying time for you. I have found some information on PVL which you can read here.

I have also found a discussion which may benefit you, a post by @Zeezee who asks questions after her daughters diagnosis.


Hope these links help, let us know if you need any further help

Cathy35

Hi amy, 
Thank you so much for your coordination.  I highly appreciate it. I'm terribly worried. 

Best wishes
Cathy

Ami2301

There is more information about support for families after a diagnosis which may help too

Pippa_Alumni

Hi @Cathy35, and a warm welcome to the community!

Thanks for sharing this with us, and I'm so sorry to hear you're feeling worried. I hope you know that you're among a lovely community here, where there are people who understand.

Hopefully some of our members will be in touch soon, but in the meantime, do have a look at the resource above recommended by Ami. Keep in touch, and I hope today's a good one! 

Richard_Scope

Hi @Cathy35

Good to meet you. I can understand that this a really worrying time for you and your family. I'm not an expert on PVL but I do live with spastic quadriplegia, I'm happy to chat with anytime.

April2018mom

I’m not a expert on cerebral palsy but welcome to the community. 

KellyParentAdvisor

Welcome to the community @Cathy35. I'm afraid PVL is not something I know about, but there are plenty of knowledgeable people here and in the forum groups for parents and carers and cerebral palsy. I hope you can find some information and support to help ease your anxiety soon.

Kelly

Cathy35

Hi Kelly

Thank you for your message.  PVL is a cause of a brain damage during pregnancy or birth. I had a very severe pree eclampsia during my delivery of my son with a blood pressure 290/190. I thought I would be death with my baby. Luckily that we were both alive and I'm very ok I feel nothing but my son is totally affected . We went already to the neurologist and she said only 25% with this PVL diagnosed with Spastic quadriplegia CP could walk.  I'm really hoping praying that my son walk be able to walk talk and take care of himself when he's adult. We go for a Physiotherapist at least 3x a week sinced we went for a therapist my son is progressing and less spasticity . He smiles grasping toys although it's slowly and he's responsive . He is a lovely happy boy.  My heart is so heavy. I'm terribly worried .

Cathy

KellyParentAdvisor

Oh Cathy, I can totally understand why you're worried! It sounds as though you're already doing plenty to help your son and it's having a positive effect. He's still so very young, and a lot can change between now and him reaching adulthood. As the parent of a disabled child myself, I know how easy it is to always be looking to the future and hoping our children have a good quality of life. The danger with that, though, is that sometimes we forget to live in the present! Try to enjoy your son while he's still a baby - they grow so quickly! You said he's a lovely, happy boy, so you're doing a brilliant job! 

Kelly

Cathy35

Thank you so much of your compliment and inspiring reply Kelly. Yes I really do my very best everyday with my son. Everytime we went to Physiotherapist what I see with his exercises I immediately do for my son everyday. My son is very attached to me what ever I do and say to him he immediately react and responds. Such a lovely boy. He is always happy when he's with me. Yes Kelly all mom is looking forward for a good future good quality in life of our children. I always enjoy my son and love him sooo much. If I may ask you Kelly are you also a mother of a child with disabilities? I would like to talk to you and all moms here who are positive.
Best wishes 
Cathy

Kate_Scope

hi @Cathy35 my name is Kate and I am a parent advisor for the navigate service which is going live on Monday 25th February, I have just been looking through posts and can see your son has recently been diagnosed with spastic quadriplegia. We are a service for parents who have recently had a diagnosis of a disability or impairment for their child. We offer six sessions of support on the phone or online, this is a place where you can talk about your feelings and of course, ask for support in regard to signposting and practical support. Most of the navigate advisors have lived experience of disability and some of us have children of our own with disabilities, for instance, my daughter is 18 has spastic diplegia and is a full-time wheelchair user. I have been where you are and we are looking to support people through this transition so that they don't feel so alone at this time. I can post the referral form on Monday and put up the telephone numbers where you can get in touch if you think this service may be of use to you. 
Kate 

Kate_Scope

   For more information about Navigate, and to apply online, please click here” 

Adam_Alumni

Hi @Cathy35

Navigate is Scope's new parent mentoring service   that provides emotional support for parents of disabled children, it is for parents in England or Wales who have a child who is either going through or has received a diagnosis in the last year.

Is this of interest to you?