Baby Daughter with PVL

MattCundill83

Hi,
my 6 month old Daughter was born 9 weeks premature, at birth she was diagnosed with PVL in her brain.
Since then she has had a rough start... severe reflux, milk protein allergies, seizures...
We are now starting the teething process but she is also going through some emotional anxieties eg. Stranger anxiety, seperation anxiety... my wife & I are struggling to cope with the daily stresses and strains. 
Has anyone else been through this & how do you cope?
We don't have much of a family or friend network to fall back on so any advice or help would be invaluable.
Thank you.

Geoark

Welcome to the community @MattCundill83

Sorry to hear what your daughter has been going through. Unfortunately I don't have any advice for you other than find time to take care of yourselves, even if it is giving each other short breaks.

Hopefully by bumping this up someone will step in with more practical advice.

Alex

Hi @MattCundill83

How are you and your family? That sounds really tough.

Sorry that your post didn't get a response from our parenting advisor. She's been very busy recently - so I've moved your post to our parents and carers group.

Tagging in @lou1987smith @karategirl @Tei who have all mentioned similar situations recently.

karategirl

Hi

Yes we have adopted a boy at 14months who is now 20months old. We have just had an mri which showed pvl. He has a weak core, has problems chewing so gagges and chokes. The list goes on lol. I think our biggest thing at the moment is he doesnt learn when we say no so by the end of the day the stress level is very high in our house hold. 
He is making small progress and i think this keeps us sane as he is heading in the right directions no matter how small these steps are. Iv found he does better 1 on 1 to learn things, just looking at how far they come makes the stress and strains that little easier to handle.
Please feel free to message me if you want to talk

MattCundill83

Thanks karategirl,

Our Daughter also has a very weak core, and cannot fully hold her head up properly - she is now 8 months old and cannot sit up self supported.

She is now on the Paediatric Physiotherapist's radar so hopefully some intervention sooner rather then later will help with this.

Just out of interest does your little boy sit up unassisted? And can they talk or communicate yet?

Our Daughter babbles & coos like an 8 month old should and she responds & understands certain phrases which she responds to as you would expect eg, you can say to her "Hiya!" and she will respond with a huge smile & a bit of a babble back in response.

This we find very encouraging.

We were told when she was diagnosed that we should expect development delays but we didn't expect them to be this late. She is the size of an 8 month old but physically acts like a 3 month old.

karategirl

He does sit unaided but can very easily fall over still, when he came to us at 14months we had to hold him if he sat on our knee as he would just fall off. He doesnt speak will say hi and bye but thats about it but with alot of babble lol. He can not communicate his needs so this frustrates him alot. At 20months he looks like a 9 month old and so we are finding professionals are not seeing a nearly 2 year old. He does have developmental delays to about a year old i would say. 
Physio will work wonders for her and show you what you need to do to strengthen her mucsles. Our little boy didnt even know he had legs and physio have worked with him and now he crawls pulls himself to stand holding on and walks with a walking frame.

wheelygirl

 @MattCundill83 @karategirl  hey I just wanted to say to you both that it does get better so hang in there on your dark days I myself was born with pvl I am 22 years old and love my life yes I need people to help me be independent but both your children will find their own path in life let me know if you have any questions 

Rayche45

Take each day as it comes. Progress can be slow but it's there. 

I have twin boys born 10 weeks early. Twin 1 Ted was born with Pvl. Having twins made it even more obvious he was delaying in certain things. He struggled to eat, gagging and dribbling. He was on oxygen alot in scbu.  
It's been slow but the progress is there. All you can do its be there and do your best. Do not compare your little one  to other kids as everyone is different.

Ted never crawled, (his physio is working on that) he sat unaided at about 12 months. And he still cannot walk but he's got his bum shuffling down to a fine art. 
His words are minimal but so are plenty of other kids his age. 

Will you have follow up scans? Are you still under a contultant. If so and you have concerns get an appointment. Speak to your health visitor to, they can help with advise. 

My boys are two next month. The journey has been so hard but it's worth it I promise you. 

Here to chat x

karategirl

@wheelygirl
Aw you have made me smile. I try so so hard to be patient with him as i so know he can not help some of the things. He his making amazing progress and as long as he has a smile on his face and a positive out look iv done my job 

wheelygirl

@karategirl your welcome let me know if you have any more questions 

MarieE

My daughter was born with PVL we found out after an MRI scan, she was severely delayed all over, motor skills and speech. 

She could not walk or talk other than babbling, she had regular physio and someone from the care services used to visit and play games with her whilst making notes of her progress. She didn't really progress until she started school.

She went to a wonderful school called Carlton Digby where she enrolled at the age of 3 years old, within months she was out of a wheelchair and walking, she called me mum instead of Babas, everything had improved beyond our expectations, however she did get diagnosed with autism, but the PVL side of things is just a motor problem which she wears pedro boots for, she still has a wheelchair for backup as if she goes for long walks she does get tired.

She stayed at the school until she was 19. When she was a toddler she missed all of her landmark toddler things and was on formula milk until she was 4 as she would not have anything else (once again, this may be the autism) 

The specialist told me that she would always have a limp because of the PVL and yes she is a bit wobbly, but do not think that your child will never progress because she will. 

EDIT: I forgot to add that she used to cry for England and scream the place down, I too was at a loss, but luckilly I had a mother who used to take her once a week or so and we found that leaving her in a completely pitch black room worked miracles, she just seemed to like the dark. 

Zeezee

Hi mattcundill83 I am so sorry your daughter has had such a rough start, I really feel for you and your wife. My daughter was born 9wks prem and has quadriplegic cp caused by pvl, she is also lactose intolerant, wheat intolerant and allergic to eggs. The first thing I would like to say is that you have to give yourselves time to grieve for the loss of the child you thought you were having. No doubt you love your daughter with all your hearts but this is not how you dreamt and talked about how your babies and your lives would be and grieving is essential in order to accept and move forward. The way you describe your daughter's understanding and babbling sounds very similar to my daughter Zee and at 3 now she never stops talking, I think I wanted so much for her to talk I encouraged her a little too much and now she won't stop lol. Zee can't sit unaided for more than a few seconds and can't stand, she gets about by rolling and pulling herself along with her arms but she is so stubborn and determined that I won't rule out her walking unaided at some point. Zee didn't reach her physical milestones when she should have done but when she does do something like when she rolled over for the first time at 19 months I cried uncontrollably with joy for 2days straight. It's always very little steps but when she finally gets there it is soooo much more precious than with any 'normal' child. You will have terrible lows but trust me the highs you have are mind-blowingly beautiful. Push the physiotherapist to start therapy asap the earlier the better. The brain damage with PVL won't get any worse but as your daughter grows and develops the problems become more apparent, but physio is the key to helping her reach her full potential and avoiding or minimizing issues with posture and her hips bedding in etc. so make a nuisance of yourselves and start phoning and nagging people, unfortunately its what we as SN parents have to do. Above all else give yourselves a break and take care of each other and yourselves it sounds like your doing an amazing job. Good luck