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periventricular leukomalachia

my daughter is 2 and a half. she is the first of twin girls. she was diagnosed with pvl at about 1 year old. mri confirms diagnosis and neurologist guesses it is due to lack of oxygen during birth. she is an outgoing happy child with a great sense of humour. gets hot easily and sweats and dislikes bright sun and heat. eats lots of everything but when she ate dairy she stopped gaining weight. when i took milk out of her diet she started gaining weight again but with difficulty.
she has hypotonia due to her pvl. attends physical therapy. she can now can pull herself up with help, walk if someone is holding her under the arms and walk if holding onto furniture or pushing onto something. although when she was real little 4-5 months old she babbled really nicely after vaccinations at age 1 she stopped talking and was more withdrawn (although in no way autistic). she has started vocalizing again around age 2 but not as well as she did before. she is frequently ill mostly with upper respiratory infections and a couple of times with uti.
i would like to help her strenghten her muscles and encourage her speech. any suggestions?
please let me know if any other information is useful.
i am so looking forward to your help!
 
  axpan on 2009-03-16
This is just a forum. Assume posts are not from medical professionals.
Hi,

Please talk about her fears, anxieties or any other negative feelings you might have observed.

Also, talk about the level of affection she shows towards family members.

How easily does she mix with strangers ?

Her food cravings or aversions if any ?

Things that really aggravate her and things that really make her happy ?

Sameer
 
sameervermani last decade
Sameer, thank you for your questions. My daughter is afraid of some physical activity in which she feels she looses her balance either when she is trying to do something difficult for her like stand while holding onto something that is unsteady or if someone pushes her slightly when she stands (which seems reasonable to me but i'm mentioning it anyway). She does not like to be held by strangers although she very much likes to interact with them and hold hands, caress them etc. She gets very unhappy and cries loudly if she is hungry. Except for that she is happy all the time, even if woken up in the middle of the night or when sick.
she is very affectionate towards me and her father and her younger brother who is 11 mo. She has lots of friction with her twin sister the past months (since the new baby was born) where her sister pushes her around and takes her toys from her and she bites her as a defense. Sometimes only seeing her sister will aggravate her and she will cry or try to bite her.
She eats a lot, her dislikes are mostly texture based- like she doesn't like food with differert textures or hard pieces. I haven't noticed something she craves for but she loves sweets.
She is really really happy with music. any type of music mesmerises her. she likes to be held and danced around as well. she also loves animals and vocalizes alot when she sees one
I hope this isn't too much or not enough information. Let me know if you would like me to elaborate on something.
Thank you so much Sameer.
 
axpan last decade
Can i just add to my previous post some details i remembered: she used to be afraid of bold patterns on materia (like black and white) and people wearing hats. also, in addition to music she likes games with flashing lights.
i so look forward to hearing from you.
thank you so much
 
axpan last decade

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