20 month old diagnosed with PVL and diplegic CP. Any other experiences out there?

SianOg

HI ALL 
I'm new to the group. We have a wonderful daughter who is 20 months old and has recently been diagnosed with PVL and diplegic CP. She was born at 35 weeks and was a tricky labour with failed forceps and emergency ceaserean. Had a short time of ventilation which I'm guessing this is what caused the PVL? That's how I understand it anyway?! We have been seeing physio now for 6 months, I was always slightly worried something was wrong so got her referred to physio early. She can now sit up and roll over. Physio has helped lots but her feet so badly roll in and her core is not strong enough. We have supportive shoes from orthotics to help. I just wonder if anyone has any experience or is going through the same thing? We have been told that she will walk but she won't walk 'normally'( maybe with an abnormal gait?!) We have also been told that toileting may be an issue and cognitively we may not know if she has been affected until she is at school. Personally I'm not too worried about her cognition as she is bright as a button and has complete understanding and has a very good vocabulary so far. Thank you for your time and hope to hear some of your experiences. 

thespiceman

Hello @SianOg  Pleased to meet you welcome.

Thank you for joining and sharing.

I am one of the team of community champions who guide, advise and help new members who join the forum.

We have a member of our team @Richard_Scope is our information officer on CP . Be able to advise you.

Also there will be members of our community and members of our team who can identify what your going through. They will also be in touch.

Please have a look around our website. We are friendly, care and share. You have come to the right place for information, support, advice.

Please ask if we can help further. Some one will know from our community or a member of our team.

Please take care.

@thespiceman

Richard_Scope

Hi @SianOg
Thanks for your post and it's great to meet you! It sounds like you and your daughter are doing a fantastic job. We have information about PVL and Cerebral Palsy. 

Scope also provide the Navigate service. Navigate is a national Service that provides emotional support to the parents of disabled children. I will tag in my colleague @Kate_Scope

We have members of the community like @Samiantha570 that have been in a similar situation and I'm sure they would be pleased to talk with you.

Kate_Scope

Hi @Richard_Scope and thank you. 
Welcome @SianOg and it's lovely to have you here on the forum. 
I am a parent mentor on the Navigate service but more than that my daughter Eve is 18 has Cerebral Palsy, PVL, and epilepsy. I Have been in the same situation as you and it really is quite common in the early years, to wonder as you are as to how it will affect your child.

Sometimes the watchful waiting is the most frustrating part of the whole process. I am glad that you seem to have physio and orthotics in place as these are the services that will help and support her most through these early days. 
In regard to her feet rolling in, have the physio shown you a stretch that can manipulate her feet the other way? if not ask about these. I used to have worksheets from physio to try and help her feet as much as I could. 

When my daughter was older she did have splints to hold her foot in the correct position- I think she was around three at this point- what I am trying to say is that the physio and orthotist will manage any symptoms that arise, and although this is frustrating- they will help and intervene with core strength and foot issues when needed. 

Have they mentioned a standing frame at all for her? it may well be too early but it may be worth an ask? 

As she is only 20 months old I presume she has only been diagnosed in the last year or so? Rest assured you really have all the correct interventions in place and are doing everything you can- so well done! 

The navigate service is for parents who have had a child diagnosed in the last year. We can give practical support but more importantly emotional support for any parent going through this transitional period- All of us have a lived experience of disability, this may be that we are parents, have a disability or have worked in the disability area. 

If you feel you could benefit from this give us a call or fill in the online referral, we work with you for six weeks by means of telephone support. 

The website is here if you would like some more information
http://www.scope.org.uk/navigate

Kate  

Kate_Scope

Can I Just say regarding the toileting? Eve was 20 Months when we got her diagnosis. They said she was probably going to be incontinent, this was not the case she was dry day and night by the time she was 22 months. 
When they are advising you of things it isn't always right and every child really is an individual in this journey. 

Kate

SianOg

Hi both @Richard_Scope and @Kate_Scope thank you so much for your replies. First of all I'd be very interested in your navigate service. We have a very supportive physio and HV but any further would be appreciated for me and my husband.  The diagnosis is VERY new, we only had the results last week. Very mixed emotions at the moment and like you say you can't help but worry and think about the future. 

Regarding physio, no we haven't been shown stretches for her feet rolling in so will definitely be asking about this at her next appointment, which is in 2 weeks. 
We haven't had a standing frame mentioned either although smarter seeing the consultant last week he did say he is going to ask physio for an OT referral again I will be sure to ask at her next appointment. 
Our physio has mentioned splints, I think she was seeing how she got on with orthotic boots (we have only had them 6 weeks) 
Thank you sharing your daughters experience. 
Do you mind me asking if Eve walks 'normally'? The consultant has said to us that Georgia will definitely walk but it won't be in a 'normal' way? And with regards to toileting, wow Eve sounds like she was amazing! I'm not sure Georgia is ready yet but even so I wouldn't have a clue where to start! I will have a look into it. 
Thank you again for your comment and sharing your knowledge and experience.  
Sian 

Kate_Scope

@SianOg Eve is a fulltime wheelchair user, she can standing transfer to the toilet and to get into bed and things, even though she has the diagnosis of spastic diplegia, they are all different in how they develop- so some may walk and some may not. I will be honest I was so very worried about her not being able to walk in the early years, but now? she attends mainstream education and is just completing her BTEC level three in health and social care. I think my priorities changed through the journey if that makes sense. 

Like you said with Georgia, Eve was as bright as a button and told me she wanted to be dry like me-
I said "but you will have to tell me if you need to go," she said "ok" and that was her training- she was so forward cognitively that she understood even then. Where some function lacks it is made up in other ways and I really believe that. 

You are very welcome to call the navigate service on 0808 801 0510 or fill the referral form in online and someone will get back to you. 

The link is http://www.scope.org.uk/navigate

SianOg

Thank you @Kate_Scope i really appreciate you sharing and can completely get when you say your priorities changed throughout yours and Eves journey. 
Ah wow Eve does sound very bright from an early age and massive luck to her in her Health and social care (that's what I did MANY years ago now) 
I totally get that they make up for it in other ways, Georgia is a little chatterbox compared to her friends, she says the most! 
Thanks again for your help and I will give you guys a call or fill in form online when I get the chance. 

Kate_Scope

@SianOg Good luck with everything and just take it a day at a time, it made the difference to my own mental health and wellbeing once I started to do that
Kate 

SianOg

Thank you @Kate_Scope and thank you for all the information and advice 

Momwyatt

Hi I am new to this site, my 2 year old daughter has just been diagnosed with PVL cerebral palsy. I’m really struggling to get support and understanding of what happens next and where we go from here. She was seen by her Paediatrician 3 weeks when they told us her diagnosis, they have referred her to occupational therapy, speech therapy, also to a Orthopaedic and a Podiatrists but she’s not due to be seen again now by her paediatrician for another 12 month. I’m unsure who I turn to for advice and help and who is in charge of her main treatment plan. Taylor also suffers with hypermobility. She is very bright and fully understands but is unable to speak. She also struggles to walk and falls very often. Taylor gets extremely tired and frustration. Does any one have any advice please?? Thanks 

Richard_Scope

Hi @Momwyatt
Welcome to the community.
Cerebral Palsy is an umbrella term for a neurological condition that affects everybody who lives with it differently. For children, the approach to treatment is multidisciplinary. That is why your daughter has been referred to occupational therapy, speech therapy, orthopaedics and podiatrists. This should be overseen by your paediatrician, with your GP able to assist you in communicating with paediatrician should you need it.

We have information about PVL and Cerebral Palsy. 

Scope also provide the Navigate service. Navigate is a national service that provides emotional support to the parents of disabled children. I will tag in my colleague @Kate_Scope 


Keep in touch.

Chloe_Alumni

Hi @Momwyatt and a very warm welcome to the community! Thank you for taking the time to share this with us all. 

How did the initial support help? I too would recommend looking at what my colleague has suggested. Please let us know how you get on.

SianOg

Hi @Momwyatt have just seen your post. I too have a 2 year old diagnosed with PVL and diplegic CP. We had the diagnosis in April this year. Georgia is doing absolutely amazingly. She isnt walking yet but we ae hopefull that she will very soon as she is getting so much stronger. She currently wear orthotic boots however we are now waiting for to have splints. We have support from our physio whom we see once a month and the orthotics team plus have a very supportive paediatrian who we see every 3 -4 months. As a parent my husband and I have found it difficult at times. We try not look too far ahead and take each step as it comes. Our physio is so good at setting us achievable goals, which Georgia has always aced before each appt. I found that really helpful as it was easy to think we hadn't really got anyway with her mobility but actually with the goals set it really showed us how far she'd come and she was going in the right direction. I'm not sure what your daughter is like but Georgia, although she is able to crawl and pull her self up on furniture it is such an effort for her and sometimes I struggle with seeing her struggle to do things however Georgia knows no different and is such a determined little girl that this makes me stronger! I do also struggle abit with catching up with friends with similar aged children as they are all jumping and running  around. We still take Georgia to soft play etc which she has a great time. It's just something that I struggle with sometimes. 
I am yet to find another Mum or Dad with a child with a similar condition. I would be very happy to chat with you if you would like. 
I took part in the Scope Navigate service which I found very helpful and my mentor was very understanding and easy to take to. I actually left the service at 3 weeks as Georgia was doing so well. 
Like I said I am happy to chat with you to share experiences, worries etc 
Sorry REALLY LONG message! 
Sian 

April2018mom

Hi @Momwyatt
No CP experience but I understand how you feel. Remember that all children are different. My 2 year old boy has SB. He was prenatally diagnosed during a routine scan appointment in 2016. Right now we are on vacation from all his doctors, and therapists.

Try keeping a diary it helps especially in the first year post diagnosis. Be prepared with a short list of questions to ask at appointments. Ask for a referral to a neurologist. Use a folder for record keeping. I purchased a big blue folder from a local bookshop that I use to keep all copies of medical reports etc safe. 

And yes they truly do. My son does not walk but he can eat and talk and his cognitive abilities are on track too. That being said, I do feel pain for a minute whenever we are at a playground or park and I see all of the other children running but my son is in his wheelchair. It is hard isn’t it? That is why I joined a parent group for support. I highly recommend finding one on Facebook or in real life. It will help.