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Pachygyria Queen
Добавлен 31 май 2014
What is Pachygyria? It is a congenital brain birth defect
WIN 20200430 16 15 53 Pro Living With Pachygyria
What it is like living with Pachygyria, my personal experiences
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Видео
WIN 20200423 13 50 49 Pro Introduction to Pachygyria
Просмотров 4744 года назад
Pachygyria is also called Polymicrogyria, a congenital brain birth defect or abnormality. The common characteristics consist of a smaller head and ears and is diagnosed by having a brain scan. Pachygyria is considered genetic, although in rare cases it is not genetic.
POLICY TRIAL FOR MEDICAL CANNABIS FOR CANCER
Просмотров 535 лет назад
POLICY TRIAL FOR MEDICAL CANNABIS FOR CANCER
Thank you for this video. I just had a baby who is diagnosed. You are an inspiration and give me hope for his future 💕
My 15 months baby got Pachygyria. I hopes she will not too bad in the future. How is your baby today?
@@tuannguyenthanh9329 how he was diagnosed?
My daughter 1.5 year old... Her suffering of pachygyria... anybody know about the treatment plz tell me about the same help me... ma'am please help me...
There is little treatment such as anti-seizure medication. There is also speech therapy that might help. If possible lots of vitamins and minerals. Hang in there.
Contact number plz
On my xray it said I could have poly, or pach.. I read it can cause larger, or smaller head, and I did read it is psosible to pass down, so Idk who's saying what. Anyway, mine is very subtle apparently. I have balance issues and other problems, but Jesus is wonderful. :D
I didn't have all that stuff, some people have a subtle version of it. I have balance issues and other things cause by other problems, but as far as I know I haven't had any problems besides seizures which I don't even have anymore, or rarely anymore. So I think a lot of the stuff is if you have it pretty bad. I could be wrong, but anyway...
I never had a small head, just gum disease caused me to loose parts of my face. :/
Any treatment available now... My baby is suffering for same
The only treat I have read about us seizure and antidepressants.
Hii prakash My baby also suffering the same.. if you have any treatment than please tell me about the same please help me..
@@madhurimadhuri8422 its genetic disorder... It is only treatable not curable.... Doctor is trying to reduce my baby seizures.
@@prakashreddy1285 have you seen any recovery in growth after stopping in seizure? What treatment is available after stopping in seizure ? Have you any information about it ?
@@madhurimadhuri8422 my baby is still getting seizures...treatment changes person to person based on severity....
My 2 year old son has Pachygyria and I hope when he is older he can speak as well as you do and attend college.
May I know how is he today? I hope everything is good with him. This week, my lovely 15 months daughter is diagnosed with Pachygyria and my family are very sad now. I cannot imagine how she will be
@@tuannguyenthanh9329 Hi! He is almost 6. He is on an IEP. His education is age appropriate. He can walk, and he can speak well. Our major challenges are behavioral. No seizures so far. He can eat independently.
Sue here. Watched both of your videos on this condition. Good explanation. You are a strong woman. Thank you.
Thank you :)
I appreciate your honesty and openness on this subject. You are very talented and it is obvious your spirit is much stronger than your body with its restrictions. Y our video describing your symptoms and how they affect you will help others to identify this problem that was not easily recognized years ago. I am sorry for the humiliation you have suffered as a result of others not being compassionate or having understanding, you didn't deserve that. Can you explain more of your symptoms and how you dealt with them? Your personal testimony carries authenticity. With so many complications in your life, to do a video takes a strong character and vision beyond yourself. Thank you so much for sharing.