Looking for parents of children with PVL and CP

JodieO19

Hi all, 

I'm Jodie, I'm 30 years old and a Mum of two. A boy and a girl. My girl is 13 weeks old and neurotypical. My boy is 2 years and 4 months, he has been diagnosed with Pereventricular Leukomalacia and resulting in Spastic Diplegia Cerebral Palsy symptoms. He has global development delay and some sensory processing issues too. I'm stay at home Mum/full time carer to Colby (my boy)

Colby still can not bare weight through his feet so can't walk. He can do a normal crawl which he just started doing before he was 2. He can pull himself up to stand but on tip toes. 

The teams we have involved are his hospital paediatrician (still waiting on community paediatrician to take over - I think this is the patch team which we're being referred for) his neurologist at Southampton who we've just seen who confirmed everything above (now don't need to see for a year) a dietician because he has always been quite low weight especially recently so needed prescribed shakes to help him bulk up, health visitor, orthotics (he has weighted shoes which he doesn't like) Solent physio, we get to see OT next week finally (hoping we can get a referral to wheelchair services too as he is too tall for all strollers I've brought and they don't support him enough) we are also going to have a volunteer hopefully come once a week to help us go on walks as I don't get out when my husband is at work because Colby doesn't like being in the tandem pushchair. We've spoken to SALT before too but they say he's too young just yet. He also goes to a specialist nursery 3 mornings a week. So I'm hoping this will help him develop more.

Recently, Colby has been having major meltdowns (not behavioural tantrums) where he screams, cries, kicks and lashes out, bangs his head on things to the point where I can't take him anywhere he isnt used to, because it seems to be too much for him out of his routine. He seems to be having these daily and often, they also seem to be increasing in severity. I have told everyone in his health team and they all say there's not too much they can do right now as they don't like to do autism assessments on someone so young, is this normal? Surely early diagnosis is key to set them up for their future, to find triggers etc. I've worked with young adults with CP, brain damage, and autism before (10 years+ working in care) and early diagnosis and treatment seems to be key to preventing full blown episodes of challenging behaviour and SIB. I don't want it to get so bad that it's beyond my control. Any parents have any advice for me here?

Colby takes Baclofen 3 times a day (1ml) for pains and stiffness. He will also often have what appear to absent moments, they did an EEG but this came back in normal range so didn't seem to be epileptic at that time. I guess I'm writing this all down in the hope someone has been through similar. I feel like I can't take my eyes off him for a second but very hard to deal with, whilst I'm nursing his sister too. 


Anyone have any advice for me, or simply similar stories with their own?

Many thanks,

Jodie.

JodieO19

We're also waiting on portage referral to come through. Colby also has a stander but has meltdowns if we even try and get it out now.

Richard_Scope

Hi @JodieO19

So good to meet you and welcome. We have some information about PVL and cerebral palsy that might be helpful to you. Anecdotally, I have heard that both the Bobath method and the Anat Baniel method can be helpful for children diagnosed with PVL and or cerebral palsy. I would suggest talking about these options with your neurological paediatrician.

In terms of the tantrums and issues around that did you see my post in Behaviour - My son with CP Having Tremendous Meltdowns? There are some strategies in there that might help. We also have some community members that could share their experiences, @junicposs, @buckleyv, @rvl100 and @NatzG20

forgoodnesssake

Hi, my first question is always "can he communicate in a way that meets his needs"? You haven't mentioned if he can talk and so if he is unable to express himself some of his behaviour may well be frustrated attempts at communication.  Very disappointing to see that the SALT said he's too young for their input: he's not!  My son (quad athetoid CP and no speech) saw one from about age 5 months and then started on symbol charts and no tec "choices" at 15 months and first communication aid at about 2years 8 months.  He's now 23 and at Uni but he definitely used behaviours like arching his back as a means of expressing himself when he was way younger than 2 years 4 months...sorry if I am telling you something you already know, but just in case!  Good luck

JodieO19

Thank you, I forgot to say, he can say a few words but mostly, probably, communicates via behaviour at the moment

Emmathorley19

You could be describing my daughter here. I have no advice for you as you sound like your further on with appointments then we are. Sienna can’t swallow medicine so waiting on speech and language to help with that before she can start baclofen, but the orthotic splints are getting to ne so painful for her at the moment, I just wish I could help her more.
I too keep asking for an assesment but getting told to young to look at her “meltdowns” being related to the PVL and not just “typical terrible twos” I keep explaining I can tell the difference between her tantrums and meltdowns. 

Kristina_PT

Hi Jodie,

As a physiotherapist, early intervention as permanent physiotherapy is important to help your child develop. Proper and intensive rehabilitation can significantly improve the condition and quality of life of children with CP. Perhaps the focus could be on achieving developmental milestones or improving cognitive abilities. You may try to find a physiotherapist who would assess Colby, see where is he now in his development status and together with you, go through appropriate treatment and exercises that may benefit his development. Where I work, parent-educator is one of the main factors why therapy works. Putting him through physical activity and proper stimuli may result in his better response to the enviroment he is in. 

Wish you all the best and if you have any specific questions I would be happy to try and help. Good luck!