New Update on Gaby

[pmoreno]

As most of you know, Gaby had her IVIG with Dr. K back in October. Tics were gone immediately and other behaviors improved dramatically for a few weeks. Then OCD & other bheaviors gradually crept back in and we have been dealing with ups and downs ever since. December & January were our worst months (just as they were the year before). I have to say that I'm beginning to see a light at the end of the tunnel. I'm not sure yet whether it is due to the supplements I've had her on recently or whether it would have spontaneously improved anyway - but this is what we've been doing: Her sleeplessness has always been a real issue so we had tried 5HTP (initially we did 3 days and she complained of dry mouth at night and it didn't seem to help her sleep - so we stopped) We started back on it and this time she has been sleeping like a baby. Complained of dry mouth maybe the first 2 days but not after that. Her mental clarity has improved too - she is more alert & memory is better - could be from the acetyl L-carnitine we started her on. It's important that it is ACETYL (L-carnetine) and not just plain L-carnetine because they work differently and the acetyl (L-carnetine) specifically works on memory (its been used with dementia).

 

We took her off antibiotics the beginning of Feb. It seems that her flares are more related to viruses than strep so I wasn't too worried. So far so good. One thing that has helped us with the viruses - Everyime anyone in our house even starts to sniffle I give them a heaping teaspoon of vitamin C powder (its about 5,000 mg) - forget pills - they don't work. Anyway - since we started doing that - no one has had an actual cold within the last couple of months.

[lss]

As most of you know, Gaby had her IVIG with Dr. K back in October. Tics were gone immediately and other behaviors improved dramatically for a few weeks. Then OCD & other bheaviors gradually crept back in and we have been dealing with ups and downs ever since. December & January were our worst months (just as they were the year before). I have to say that I'm beginning to see a light at the end of the tunnel. I'm not sure yet whether it is due to the supplements I've had her on recently or whether it would have spontaneously improved anyway - but this is what we've been doing: Her sleeplessness has always been a real issue so we had tried 5HTP (initially we did 3 days and she complained of dry mouth at night and it didn't seem to help her sleep - so we stopped) We started back on it and this time she has been sleeping like a baby. Complained of dry mouth maybe the first 2 days but not after that. Her mental clarity has improved too - she is more alert & memory is better - could be from the acetyl L-carnitine we started her on. It's important that it is ACETYL (L-carnetine) and not just plain L-carnetine because they work differently and the acetyl (L-carnetine) specifically works on memory (its been used with dementia).

 

We took her off antibiotics the beginning of Feb. It seems that her flares are more related to viruses than strep so I wasn't too worried. So far so good. One thing that has helped us with the viruses - Everyime anyone in our house even starts to sniffle I give them a heaping teaspoon of vitamin C powder (its about 5,000 mg) - forget pills - they don't work. Anyway - since we started doing that - no one has had an actual cold within the last couple of months.

 

 

Pat,

 

Sooooooooooo Happy to hear that Gaby is doing so well. We have scheduled IVIG for the end of May for our son. I just love hearing that IVIG has worked. Continued success with Gaby!

 

Linda