mild diffuse cerebral atrophy periventricular leukumaiacia

[Ananth]

Hi All,

This is Ananth from India, i have 30 months old male child.
when i compare my childern  with other same childerns , there is development delay.
recently we have taken him to Neurologist in india , the physician asked us to get MRI-Brain report .the Report says that childen is having problem with "mild diffuse cerebral atrophy periventricular leukomalacia".

the doctors in India says that there is no medicin for this type of case, I am requesting the  doctors those who have any idea on "mild diffuse cerebral atrophy periventricular leukomalacia", could you please help me how to cure this.

if any body have idea on this ,could you please send me an E-mail to ananth_be***@****.....
    

[Ananth]

Hi nastursim,

Thanks for valuable reply and i am really appriciate your time too.

i am giving complete behaviour of my kid ,could you please help me how much we can cure for this case....

He suffered seziures for two days after birth.  He did not cry immediately after birth.  He cried a little at 2 min and loud at 8 min duration after birth and he was given mouth-to-mouth resucitation.   Now at 33 months of age, he is not able to speak, but could utter 2-3 words.

He has right hand and right leg spasticity, strabismus, limping gait, and drooling.  Doctors in India said, he has slight mental retardation.      

Can u please tell me to what extent he is age-appropriate and to what extent he is not upto his age.  I feel that sometimes he is not abnormal, but he is not a normal child too.  The doctors in India say, he is not a normal child with regard to his development.  I am giving you few examples of his behaviour and after reading this, please guide me to what extent physio, occupational and speech therapy should be given.   We have taken him to physical,  speech and occupational therapy at the age of 18 months, but stopped now due to distance. He is not able to speak right now.  Will he be able to speak?   How can we teach him to speak.  

Coming to his behaviour at 33 months of age, he observes everything and does grasp things well.  He can recongnize people well with names and does follow 95% of the commnads well.  For example, if we ask him to close the door or open he does it.  if we ask him to bring anything he does it. He does know where the computer is, TV is etc and he tries to show how to operate them, he scrolls the mouse, types on the keyboard as he observes his father doing the same.  If there is any new change in the house, i mean change of curtains or sofa covers, he notices and if he likes it he shouts loud and laughs as a sign that he likes it. He does make signs to his mother for a bowel movement, but sometimes no control on bladder.  He does know to ask water and where his glass is and he goes there and gets water if mom is not available.  He does likes music very much and do have some favourite numbers and does dance well.  He is rather stubborn somtimes.  He just lies on the floor and cries and cries and just does not stop cyring till we pick him or do the thing what he wanted.  He even cries and shouts with agression and he wanted us to do the things what he likes.  He sometimes would threaten us that he is going to pull out phones or things in the house by sign language if we do not do the thing what he likes.  How to handle this situation?  How can we teach him?  He does not cooperate for physical therapy.  He does become restless sometimes and does not listen to what we say.  Does this kid has ADHD?.  He is trying to do things independently.  He wants to eat noodles with fork by himself, but he is unable to eat because of spastic right hand and if we do not give him the bowl he just starts crying lying on floor.  He tries to take bath while his mom is giving him bath, but he fails.  He wants to put buttons of his shirt he even cannot do that.  He majorly does not fear of anything like darkness or sounds.  He plays hide and seek, tires to ride his bycycle, but he cannot ride so he pushes it and drags it here and there.  He has very good grip strength of left hand. He cannot hold anything in right hand, if at all he can it is with great difficulty. He wants to place his toys in a particular area only.  He does not like the place to be changed, even if we change it, he places those toys at the former place.  He repeatdely does this.  If he is engaged in doing any task he seriously gets engaged into the task and we should repeatdly tell him or call him to get out of that activity.  He responds to his name when we call him.

Is it advisable for him to join in a regular play school or join him to a school for the learning disabled.  Does there any need to show him to a child psychologist?

Can u please tell me to what extent he is an abnormal child?

[nastursim]

I am sorry , but I do not know how to get him to co-operate. A trust a familiarity needs to be built up with the child and therapist, a continual thing. It is important to go to someone who is experienced with children with this condition, and one who majors in children's physio. I do not have any other suggestions other than that. Maybe he just needs a little time to get to know them and understand that they only want to help him, after all, it must be scary for them too!!

[Ananth]

Hi nastursim,

Thanks for your reply, in india we to have physiotherapy, speech therapy , and occupational therapy.just i have small question like if i take this therapy, does the child can do the things his own.

A year back we have taken him  to physiotherapy, speech therapy and the thing is he is not at all cooperating the therapist and he don't want to give his hand or leg to the therapist.is there any way to cooperative our kid to therapist.

thanks for your valueble time and reply.

[Ananth]

Hi nastursim,

Thanks for your reply, in india we to have physiotherapy, speech therapy , and occupational therapy.just i have small question like if i take this therapy, does the child can do the things his own.

A year back we have taken him  to physiotherapy, speech therapy and the thing is he is not at all cooperating the therapist and he don't want to give his hand or leg to the therapist.is there any way to cooperative our kid to therapist.

thanks for your valueble time and reply.

[nastursim]

Sorry to hear about your little one. I have an 18 month old daughter with the same diagnosis. There is no cure. It means that sometime during pregnancy, or after delivery, he recieved an injury to the white matter of his brain, it is most common in preterm babies. I know how heart breaking it is to hear these words, and the helplessness of not being able to make them better. The most important thing you can do to help him is to get him into some therapy, physiotherapy, speech therapy , and an occupational therapist if possible. I do not know what it is like in India, as I am in Australia, but here they run early intervention programmes for little ones who have delays in there development. My daughter was slow to reach her developmental milestones, and every case is different, but now she is doing marvelously with the therapy. I know it is difficult to not compare them to others, but try not to, as he is a unique individual also and when he is ready, he will do things. I found that my daughter, although she seemed to know what she wanted to do, she just couldn't do it without being helped and shown by the physio, what comes naturally to others children seems to get lost in the process as the signals from the brain have to find a different path.  
On the 15/5, i posted on this forum and asked some questions regarding PVL, you may be interested in looing it up.    "Periventricular leukomalacia means a lessening in the amount of brain matter in the areas of the brain around the ventricles.  This is often seen in premies or babies who have had an intracranial bleed."
Unfortunately, we may never get the answers we want, I do not know how my daughter got such an injury as she was not preterm. My paediatrician told me that the 2 most important things are, "love and family", this is what will get them through.
Email if you would like to chat, ***@****