jimmiejackson Posted April 26 Share Posted April 26 (edited) Hi all, I'm helping a friend in a difficult situation. I'm hoping someone has some personal experience or that Sheryl, who I am eternally grateful for due to her immense help over the years, has someone to recommend. Short summary: My friend's sister delivered a baby prematurely in India. The baby underwent several tests and has been given a diagnosis of periventricular leukomalacia. Of course, the family are currently devastated and this is being compounded by a perceived lack of expertise, clarity of options, treatment options etc. My friend is in Bangkok and I want him to consult with the best (I assume) Neurologist available to put his mind at ease that someone is available to discuss these things with and to give recommendations, second opinions etc. Money is absolutely not an object in this case. Thank you for your help! Edited April 26 by jimmiejackson Link to comment Share on other sites More sharing options...
Sheryl Posted April 26 Share Posted April 26 How old is the baby now? Makes a difference in terms of whether to consult a neonatalogist or a pediatric neurologist Link to comment Share on other sites More sharing options...
jimmiejackson Posted April 26 Author Share Posted April 26 26 minutes ago, Sheryl said: How old is the baby now? Makes a difference in terms of whether to consult a neonatalogist or a pediatric neurologist Thanks for your response Sheryl. The baby was just over 27 weeks at birth, and was born on April 6 this year. Link to comment Share on other sites More sharing options...
Sheryl Posted April 26 Share Posted April 26 And they have removed the premature baby from the NICU and brought it to Thailand??? Or do you mean the brother in law is now in Thsiland and wants to talk to someone, and the baby is still in NICU in India? Without being able to examine the baby not much a doctor here can say. This condition varies greatly in severity and prognosis. Link to comment Share on other sites More sharing options...
jimmiejackson Posted April 26 Author Share Posted April 26 15 minutes ago, Sheryl said: And they have removed the premature baby from the NICU and brought it to Thailand??? Or do you mean the brother in law is now in Thsiland and wants to talk to someone, and the baby is still in NICU in India? Without being able to examine the baby not much a doctor here can say. This condition varies greatly in severity and prognosis. Yes the brother (Uncle) of the baby is now in Thailand and wants to talk to someone. The baby is in NICU in India. I realise there is probably very limited information they can give but I think it would just help put his mind at ease to at least ask questions or understand options for the future from someone who has the requisite skills and experience. Link to comment Share on other sites More sharing options...
Sheryl Posted April 26 Share Posted April 26 https://www.bumrungrad.com/en/doctors/oradee-chandavasu Neonatalogist https://www.bumrungrad.com/en/doctors/prinyarat-burusnukul Pediatric neurologist The second would be best for discussions about long term prognosis for periventricular leukomalacia . The first would be best if they wish to discuss the baby's current management in NICU. Periventricular leukomalacia will not be the only issue given how very premature the baby is. There is no treatment for periventricular leukomalacia as such. As the baby grows, any developmental problems that might be noted would then be treated as appropriate (e.g. physical therapy if needed). Usually would know by around age 2. Link to comment Share on other sites More sharing options...
jimmiejackson Posted April 26 Author Share Posted April 26 2 hours ago, Sheryl said: https://www.bumrungrad.com/en/doctors/oradee-chandavasu Neonatalogist https://www.bumrungrad.com/en/doctors/prinyarat-burusnukul Pediatric neurologist The second would be best for discussions about long term prognosis for periventricular leukomalacia . The first would be best if they wish to discuss the baby's current management in NICU. Periventricular leukomalacia will not be the only issue given how very premature the baby is. There is no treatment for periventricular leukomalacia as such. As the baby grows, any developmental problems that might be noted would then be treated as appropriate (e.g. physical therapy if needed). Usually would know by around age 2. As always, thank you so much for your help and kindness. Link to comment Share on other sites More sharing options...
PPMMUU Posted April 27 Share Posted April 27 A baby born at 27 weeks gestation and is 21 days old and is in the NICU is very likely still in need of intensive care, of which the day-to-day survival is just a little bit short of a miracle. Most neonatologists and neurologists would say that there are too many things of concern and many things can happen. In general, if the baby survives, they could have (not necessarily) some neurological challenges which can be better over time with rehabilitation. Please pass my support to the parents, and I hope they receive good news in the future. Link to comment Share on other sites More sharing options...
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