My daughter Isabella has recently been diagnosed with this condition Rob,can you recommend any specific speech devices for us as we live in Ireland and nobody seems to understand the condition.Her neurologist has only come across 5 cases in 30 years working at Temple St children’s hospital which is one of the main children’s hospitals in Ireland.Any advice you could give us would be greatly appreciated Rob as your daughters symptoms are the closest that we’ve came across online to Isabella’s.Physically she’s perfect and she thankfully hasn’t had any seizures yet,she’ll be 11 in may and we just want her to have the best life possible for someone with BPMG.Any advice you could give us would be greatly appreciated,thanks.
My best advice is to see if you can make an appointment with a speech language therapist for an evaluation. Not only can they help determine what would be the best option for your daughter, but they can also do the referral that most insurance companies require. If you’re not confident in your local options, I believe you could get a virtual appointment with an slp as well.
So happy to read this today. I’ve loved your writing since the first time I read about Schuyler’s Monster. Thank you for this!
My daughter Isabella has recently been diagnosed with this condition Rob,can you recommend any specific speech devices for us as we live in Ireland and nobody seems to understand the condition.Her neurologist has only come across 5 cases in 30 years working at Temple St children’s hospital which is one of the main children’s hospitals in Ireland.Any advice you could give us would be greatly appreciated Rob as your daughters symptoms are the closest that we’ve came across online to Isabella’s.Physically she’s perfect and she thankfully hasn’t had any seizures yet,she’ll be 11 in may and we just want her to have the best life possible for someone with BPMG.Any advice you could give us would be greatly appreciated,thanks.
My best advice is to see if you can make an appointment with a speech language therapist for an evaluation. Not only can they help determine what would be the best option for your daughter, but they can also do the referral that most insurance companies require. If you’re not confident in your local options, I believe you could get a virtual appointment with an slp as well.
Ok Rob,thanks a lot for getting back to me,we have an appointment with Isabella’s paediatrician tomorrow so hopefully we’ll get more information then.
Amazing, heartfelt, sometimes funny, and true. I wasn't aware of Robert's writing before, but will pick up the book.