my dd22 mo was diagnosed with pvl yesterday I feel really scared

[spur]

Hi There, my dd has a global developmental delay. She crawled, walks (unusual gait) but struggles with depth, co ordination and fine motor skills. Her speech is delayed and at the mo has a few signs and ma ma and da da. She seems to have some understanding but there is and overall immaturity. We were referred to a developmental paed about a month ago who did an mri ( dd has small head circ. ) and it showed evidence of pvl - most likely happened in the womb. I had awful pregnancy but birth ok at full term. What now? We have been told that there is no way of knowing the extent of the damage for dd and what that means for her future development. I am so upset but also can't quite come to terms with it. I also have been googling and what I read about pvl is so scary. Does anyone have any advice?
ps. We are lucky and already have SALT and referrals for OT (long wait though) So I know there is help on the way.

Hi Spur, welcome to MN. First of all, I take it PVL is Periventricular Leukomalacia? I had to google, and people might not answer because they don't know what PVL is, so don't feel put off.

DD1 has cortical dysplasia, another vague brain conditiion, so I know what it feels like to have a bomb dropped but no idea what the damage is!

DD1 walked at 23 months, so your DD is doing well .

The best advice I have heard is to try not to worry what might happen, but deal with your DD's difficulties as they are now, and take it step at a time.

You can apply for DLA for your DD, and if successful, familyfund are very helpful.

If there is anything specific, start a new thread about it, otherwise just jump in!

Thanks lou31205. I am so grateful for your reply and for googling pvl which is indeed periventricular leukomalacia. Its not a common subject on MN. I will definitely start new thread on monday.

I think your description of what it feels like is spot on. I am so shell shocked by the diagnosis but I am not sure how bad the news really is?!! I have a hundred more questions today....all of them seeking reassurance and answers which I know the DR cant give us.

At the moment my dd's symptoms are not extreme to me or anyone who knows her. She is and always has developed differently to similar age children but its now getting more obvious as all the other 2 yr olds are exploding with words she only just started to say mama and dada at everything but not at us.

So I guess we have a long way to go....in some ways I am relieved that we have been given an explaination for dd's symptoms...I will no longer have to be scolded by people telling me there is nothing wrong and not to worry - stop comparing etc!

Anyway thankyou again

Very different circumstances but my DSs (17 months) last MRI showed PVL, which may explain why he could not cope with his very difficult delivery and his subsequent hypoglycaemia and near death(and more brain damage!)
He was labelled as GDD till last week when they finally said the words cerebral palsy to us.
He is very delayed and has severe epilepsy and is cortically blind (epilepsy and blindness typical of the hypoglycaemic damage, I hasten to add - not the PVL, so don't worry)
At 6 weeks we were told that what we had then was how it'd be, he'd never smile, walk, crawl, talk etc. etc.
He smiled a week later and hasn't really stopped since. He can roll over and is currently working hard at sitting up. He is very vocal and has started to 'take turns' in conversation. We don't know if he will have meaningful speech or will walk (he is having secret goes at commando crawling, but stops when we come into the room ), but he has done wonderfully, way exceeded everyones expectations!

It is terrifying and I find the uncertainty very difficult (tho it does get easier) but only your DD knows what she will do, and my mantra with DS is 'he will do whatever he can, whenever he wants to'.

Welcome to the board - I wouldn't have survived without it, so I hope you will find lots of help here.

Sounds like your DD is doing very well x

HI Feeeling better, thankyou for your welcome note and sharing your experience with me.
It sounds like your DS is doing amazingly well especially with his commando crawling.

I know it will get better and that the uncertainty will become easier to live with. In the meantime I will deinitely be checking into MN as much as possible for support....

many Thanks

Hi Spur,
My DD is completely different (language disorder sim. to autism) but just wanted to say welcome to the SN board. Your DD sounds like she is doing well even if she is not quite on a par with her peers.

Brio.

i too say welcome. as no one said anything to me since i joined about a month ago. Hello, hello! My dd completely different but i remember the first time we were told something was wrong, she was 12 weeks old. what a nightmare time it is and it seems like yesterday (eleven years ago in reality). Keep posting!

Hi Spur,my dd2 is 32 months & does not walk(shuffles on knees) & does not talk(except dada),MRI was clear,not sure if she has problems with her understanding but we are hopeful.It is hard.My thoughts are with you.

Hi Spur

My ds has PVL and is now 2 years old. His was picked up on an ultrasound scan when he was 5 weeks old. He was born 9 weeks premature and it is not clear whether the damage occured in the womb or at birth.

So pretty much like you, a bombshell hit me and I took him home from hospital after being told to wait and see. Just by looking at the brain injury, there was no way they could tell me what my ds was going to be able to do. They just told me he may have difficulty walking and talking.

In the meantime we have had fantastic input from all the services, physio, OT, SALT and portage etc.

Fast forward 2 years and my ds can sit for a little while unaided but he can't crawl or walk. He has a standing frame and a seating system that enable him to be supported while playing.

He has about 70 to 80 words now and we are working on him putting two words together!

I have fully been expecting a diagnosis of cerebral palsy for the past year but it is still yet to come.

I agree the uncertainty is unbearable but it does get better. It is hard to come to terms with but time really does help.

Early input is vital and it sounds like your dd will be getting all of that. My advice is to say yes to everything that is offered. You can always stop what you find she won't need later on. I found that going to a special needs playgroup and meeting other parents in the same boat as me really helped.

Hi Spur and welcome.
DD (now 3) has ventriculomegaly (too much fluid in brain where there should be brain tissue) and this means she has GDD. Her gross motor skills are OK but speech and fine motor are very delayed, as is her speech. But she is the cutest, happiest little girl and we are so proud of her. She is in mainstream nursery with a statement of SEN, something you might already be considering--is your DD having speech therapy/OT/portage?

Many thanks for more messages! I already feel much better. I have started to tell a few close friends as well.
Arabica - yes we are on the waiting list for OT/portage etc. We have just started speech therapy assessment.

My concern now is the waiting time for treatment and the frequency of treatment once it starts. I am currently looking for some private OT to supplement NHS. It seems that there is a big waiting list for OT and physio.

Corkyororky- Your DS must be similar age to my DD. It sounds like you have had great support.

Its a peculiar experience being told this kind of news about your baby - then just having to wait and see. I keep feeling like we need to be doing something more....and find the waiting frustrating.

hi new to this, my son was born at 32 weeks and we discovered something was a miss at a year, two years later we received our diagnosis. he is now 5years although he communicates at a 3 year old level. he had input from SALT, OT and physio, we also sent him to a special needs nursery which we felt didn't help, he is now fully statemented and attends a mainstream school and is making amazing progress. An educational psychologist and our health visitor were great, however i find it difficult to find any support groups for me and people to talk to who are going through the same experience. Some days are better than others even now but you get through it because with all children they surprise you constantly.

Spur: keep chasing those referrals - if you pester the staff enough then they won't forget you when extra clinics are set up.

The wait and see thing is very common - in reality, there is often little else a doctor can do for the child.

Please, please, don't google!!! Its too scary! My dd2 has PDH (I dare you to google that too! )

Do you have other dc's? How are they coping with all the added stresses in the home?