Post by Amy Lombardi on Apr 1, 2009 8:32:34 GMT -5
Subject: Introduction to Georgia and Callan
Name: Karen Gregg
Date Posted: Dec 16, 08 - 4:51 PM
Email: Click here to Email
Message: Although i have known about the bdsra since georgia(14 Juvenile) was diagnosed in 2003, this is the first time i have actually accessed the discussion forum!! I'm in awe of the wealth of knowledge parents of Batten children have and so pleased to have found a way of sharing this. In Australia we are a small community of affected families and although we have irregular contact with others it never seems to be enough or occur when you are going through a bad patch. In 2007, our son Callan ,7yrs old, was also diagnosed with Juvenile(we also have another daughter Ellie who is unaffected)and we thought our world had imploded. But ,as you know, you pick your self up, dust yourself off ,take a deep breath and get on with life. Georgia was diagnosed at age 8 after many visits to specialists and has been very well .Apart from her lack of vision she really got on with being a normal kid and it is only now that we are seeing the definate behaviour changes and decrease in mobility etc. Callan still functions very well but is rapidly losing his vision. I'm interested in 2 things-any suggestions on helping the kids cope with heat- we have airconditioning and a pool, but georgia is particularly volatile and sensitive to temperature. The second- is having a MRI a part of normal diagnosis and treatment in the states? It is sosmething I have suggested to our neurologist but he says there is no point. Also Georgia is seeing a psychiatrist at his suggestion to talk about things and also i gather for medication advice- is this something other people have done and had success- I'm afraid I'm a little cynical and feel there is probably little point? Any advice would be greatly appreciated. Karen Gregg
Name: katarina calderon
Date Posted: Dec 16, 08 - 6:57 PM
Email: Click here to Email
Message: Hello Karen!
I can only answer one of your questions, it is regarding the MRI.
I do believe that your doctor is right. Once Batten has been established as the cause of neurological regression, an MRI does not really serve much point, except perhaps being of interest to the doctors and scientists that study the effects of this devastating disease.
It is often an uncomfortable and stressful procedure, that at the end of the day serves little purpose.
Both CAT scans and MRIs are great diagnostic tools, especially when a person suffers a first seizure, but with our kids we already know the cause.
My daughter suffered with regulating her body temperature in the last year or two of her life, but I never found any really good solutions, except the obvious ones.
Maybe someone else out there has some better advice.
Good luck!
Name: Corrina Dahl
Date Posted: Dec 18, 08 - 6:44 AM
Message: Hello!
My son Clifford, age 11 JNCL had an MRI when he was 8 and had started having seizures.He was diagnosed at age 6. It was mostly just to see if there were any signifigant changes. There weren't at that point. My son has never had an MRI without general anesthesia (he had several on his hip as a 5 y/o due to an infection needing to be monitored)so I can't say the test was uncomfortable or anything.
Clifford began having behaviour issues around the same time as he started having seizures. We started seeing a child psychiatrist mostly for medication monitoring. I have found it invaluable. She has also, from time to time helped Clifford and me deal with various issues. Nothing too heavy, just ideas for him on how he could respond in a different way, ideas for me on curbing behaviours.
I think if your child is fairly cognitvely aware, and it sounds like she is, then seeing the dr could help her sort out any feelings she has and as I said, the medication monotoring is invaluable.
Name: Chris Geer
Date Posted: Dec 21, 08 - 9:43 AM
Email: Click here to Email
Message: My son Jacob also suffers from heat intollerance. This past summer I ordered him a cooling vest from Silver Eagle. It is a custom made cooling vest and reasonably priced (not sure how the currency change is for Australia but it is $55.00 here). It is lightweight and activated by using water. It is an evaporation process to keep them cool. Without it, Jacob would just melt in the heat! Although I can see his face get flushed, his body temp is lower than without it. It has made a big difference in what he can do outside now. Here is a link. I hope it goes through!
www.silvereagleoutfitters.com/shop/vest/Special_Order_POV.html
Chris
Name: Karen Gregg
Date Posted: Dec 16, 08 - 4:51 PM
Email: Click here to Email
Message: Although i have known about the bdsra since georgia(14 Juvenile) was diagnosed in 2003, this is the first time i have actually accessed the discussion forum!! I'm in awe of the wealth of knowledge parents of Batten children have and so pleased to have found a way of sharing this. In Australia we are a small community of affected families and although we have irregular contact with others it never seems to be enough or occur when you are going through a bad patch. In 2007, our son Callan ,7yrs old, was also diagnosed with Juvenile(we also have another daughter Ellie who is unaffected)and we thought our world had imploded. But ,as you know, you pick your self up, dust yourself off ,take a deep breath and get on with life. Georgia was diagnosed at age 8 after many visits to specialists and has been very well .Apart from her lack of vision she really got on with being a normal kid and it is only now that we are seeing the definate behaviour changes and decrease in mobility etc. Callan still functions very well but is rapidly losing his vision. I'm interested in 2 things-any suggestions on helping the kids cope with heat- we have airconditioning and a pool, but georgia is particularly volatile and sensitive to temperature. The second- is having a MRI a part of normal diagnosis and treatment in the states? It is sosmething I have suggested to our neurologist but he says there is no point. Also Georgia is seeing a psychiatrist at his suggestion to talk about things and also i gather for medication advice- is this something other people have done and had success- I'm afraid I'm a little cynical and feel there is probably little point? Any advice would be greatly appreciated. Karen Gregg
Name: katarina calderon
Date Posted: Dec 16, 08 - 6:57 PM
Email: Click here to Email
Message: Hello Karen!
I can only answer one of your questions, it is regarding the MRI.
I do believe that your doctor is right. Once Batten has been established as the cause of neurological regression, an MRI does not really serve much point, except perhaps being of interest to the doctors and scientists that study the effects of this devastating disease.
It is often an uncomfortable and stressful procedure, that at the end of the day serves little purpose.
Both CAT scans and MRIs are great diagnostic tools, especially when a person suffers a first seizure, but with our kids we already know the cause.
My daughter suffered with regulating her body temperature in the last year or two of her life, but I never found any really good solutions, except the obvious ones.
Maybe someone else out there has some better advice.
Good luck!
Name: Corrina Dahl
Date Posted: Dec 18, 08 - 6:44 AM
Message: Hello!
My son Clifford, age 11 JNCL had an MRI when he was 8 and had started having seizures.He was diagnosed at age 6. It was mostly just to see if there were any signifigant changes. There weren't at that point. My son has never had an MRI without general anesthesia (he had several on his hip as a 5 y/o due to an infection needing to be monitored)so I can't say the test was uncomfortable or anything.
Clifford began having behaviour issues around the same time as he started having seizures. We started seeing a child psychiatrist mostly for medication monitoring. I have found it invaluable. She has also, from time to time helped Clifford and me deal with various issues. Nothing too heavy, just ideas for him on how he could respond in a different way, ideas for me on curbing behaviours.
I think if your child is fairly cognitvely aware, and it sounds like she is, then seeing the dr could help her sort out any feelings she has and as I said, the medication monotoring is invaluable.
Name: Chris Geer
Date Posted: Dec 21, 08 - 9:43 AM
Email: Click here to Email
Message: My son Jacob also suffers from heat intollerance. This past summer I ordered him a cooling vest from Silver Eagle. It is a custom made cooling vest and reasonably priced (not sure how the currency change is for Australia but it is $55.00 here). It is lightweight and activated by using water. It is an evaporation process to keep them cool. Without it, Jacob would just melt in the heat! Although I can see his face get flushed, his body temp is lower than without it. It has made a big difference in what he can do outside now. Here is a link. I hope it goes through!
www.silvereagleoutfitters.com/shop/vest/Special_Order_POV.html
Chris