My Daughter has Periventricular Heterotopia.

Emer - posted on 01/07/2011 ( 5 moms have responded )

9

0

3

Hi Mum's, my 15month has Periventricular Heterotopia. We found this out when she was 11months old. With Periventricular heterotopia it is a condition in which nerve cells do not migrate properly during the early development of the fetal brain. My Daughter has the less commonly condition of a more severe brain malformations,- small head size, developmental delays, and extremely flexible joints. My question is if there is any other Mum's out there that might have a little one with this same condition. At the moment my little girl is sitting up, clapping her hands, doing pretty much what a 10month would be doing. We had a lot of trouble with her feed from day one, but we have gotten that under control, She is very bright, and loves to read book. I getting very worried that she might never crawl or walk and the older she gets I finding it really upsetting. But apart from all this she is the happyest little one, sleeps really well. I hope some one can help me.

Emer

MOST HELPFUL POSTS

Stephanie - posted on 01/19/2013

3

0

0

My son was diagnosed with Periventricular unilateral nodular heterotopia. He is 6 yrs old and doing great. He has challenges with his gross motor skills (balance) and currently wears AFO's. He is a happy little man, always smilling and verybody loves him. My husband and I feel the same way and our constantly wondering if we are missing the boat on something. At our last visit with the Neuroligist she explained that as he grows his symptons will evolve and change. I am finding it really hard to wait and see. He has always had spasticity in his legs and arms and is now showing signs of clonus (his muscles twitch/tremble) due to the spasticity when they are in specific positions. Hedoes regular P/T and O/T which are helping him a great deal. I would recommend getting these services in placeas early as possible.
We have been doing this for many years now and im not sure if the frustration ect will ever go away. We try to enjoy today and not worry too much about what may or may not come.
Hope this helps
Steph

5 Comments

View replies by

Emer - posted on 08/15/2011

9

0

3

Hi Liz,
Sorry I just seen you post now. My Doc have pretty much said the same, we just have to waite and she how she goes. She is 22 months now and is trying really hard to crawl, no where near walk but we will take what we can get. How is you little man doing.

Liz - posted on 07/26/2011

1

0

0

My son has a similar condition - other brain malformations, microcephaly in addition to PH and significant developmental delays. The neuros say that we're just supposed to wait it out and do PT and OT but I'm just concerned that we might be missing something. What have your doctors said?

Emer - posted on 01/07/2011

9

0

3

Hi Julie,
Thanks for that I will look it up. It's great to her you neice is doing so good. Ailish had meningitus at 5days old, and we would told she had brain damaged but like you neice she is developing. Thank you again

Julie - posted on 01/07/2011

506

5

99

i have never heard of this condition so i googled it and did you know it is actualy on the same site as epilepsy which my neice has since she was diagnosed with clouding on the brain after having meningitus at 5 months old. she was told she was brain damaged and wouldnt do what other kids did that she wouldnt walk talk or anything but she is as bright as a button just as cute and is developing normaly despite her near death and diagnosis. anyway i digress. look at this site http://www.epilepsy.com/node/992303 there is a chat community on it with people in your istuation or that are actual sufferers and how they coped growing with it. good luck to you and regardless of any problems she is your child and i know that if you have asked on here then you will try your best and will be ok good luck to you all and give her a big hug from all the mums on the site

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms