Gaby's update

[pmoreno]

As many of you know, Gaby was on augmentin daily since IVIG in October. She had some really bad flares in December. We took her off augmentin and put her on azithro. The agitation continued and worsened so much so that she needed an aid with her in school at all times. She yelled out frequently about white dots or lights in front of her eyes and hit or kicked at them, scaring the other kids in class. For over 2 months she continually asked certain questions over and over and expected an answer every time and would get very angry if not answered or was re-directed. Her titers are always outside of the normal range, but never sky high. A few weeks ago I took her off antibiotics. She's still on basic vitamins (folic acid, B12 inject., MVI, vit E, monolaurin, probiotics- for a while yet) She has been gradually getting better to the point that I have to really think if she said something repetitive today. I think she might have said a couple of times "what happened?" about nothing, compared to several times a minute of irrelevant questions within the last few months. No mention of dots or lights or outbursts for at least one and a half weeks. Her sleep is still disturbed (wakes up around 4:30 and will stay awake) but at least its not night terrors right now or constant talking while she's awake.

 

I don't know if it's related to the antibiotics or maybe just coincidental. I do know that last year her symptoms very gradually started getting better in the middle of February and then slowly dwindled away to nothing by end of April. Maybe that will happen again this year. Maybe its the fall and early winter that holds the worst in store for her (with viruses, etc). I guess I'll have to wait and see. We have a PET scan scheduled at Detroit Children's hospital on the 26th of February. - Am really looking forward to seeing those results. I thought initially it was supposed to be a spect scan, but found out since that they want to do the PET instead. My thoughts are with all who are having bad times right now and am hoping that it will get better soon like it has with Gaby lately. Pat

[browneyesmom]

I'm glad Gaby is improving and hope this trend continues for her.

 

To my knowledge, my daughter is not having agitation issues at school. Somehow, she is able to control that there. She told me that she has the feelings there, but tries to control them. She has said she does the same around her dad because he gets so angry. Do other PANDAS kids have this situation that they are able to control the agitation, outbursts, etc in certain situations, but not in others? I'm trying to learn all I can about this condition so I can better understand what she is dealing with and can better help her.

 

 

As many of you know, Gaby was on augmentin daily since IVIG in October. She had some really bad flares in December. We took her off augmentin and put her on azithro. The agitation continued and worsened so much so that she needed an aid with her in school at all times. She yelled out frequently about white dots or lights in front of her eyes and hit or kicked at them, scaring the other kids in class. For over 2 months she continually asked certain questions over and over and expected an answer every time and would get very angry if not answered or was re-directed. Her titers are always outside of the normal range, but never sky high. A few weeks ago I took her off antibiotics. She's still on basic vitamins (folic acid, B12 inject., MVI, vit E, monolaurin, probiotics- for a while yet) She has been gradually getting better to the point that I have to really think if she said something repetitive today. I think she might have said a couple of times "what happened?" about nothing, compared to several times a minute of irrelevant questions within the last few months. No mention of dots or lights or outbursts for at least one and a half weeks. Her sleep is still disturbed (wakes up around 4:30 and will stay awake) but at least its not night terrors right now or constant talking while she's awake.

 

I don't know if it's related to the antibiotics or maybe just coincidental. I do know that last year her symptoms very gradually started getting better in the middle of February and then slowly dwindled away to nothing by end of April. Maybe that will happen again this year. Maybe its the fall and early winter that holds the worst in store for her (with viruses, etc). I guess I'll have to wait and see. We have a PET scan scheduled at Detroit Children's hospital on the 26th of February. - Am really looking forward to seeing those results. I thought initially it was supposed to be a spect scan, but found out since that they want to do the PET instead. My thoughts are with all who are having bad times right now and am hoping that it will get better soon like it has with Gaby lately. Pat

[ajcire]

Yes, my ds completely controls it at school. Even when his throat clearing was at it's worst his teacher said she didn't notice it at school. If he was doing it at school like he was at home, she would have definitely noticed as it would have driven her insane! He also never had any behavior issues or rages at school... the only thing he does at school is tell her if she is not on schedule or doing things "right"... he thinks he knows everything.. not sure if that's the pandas or his personality though.

 

 

I'm glad Gaby is improving and hope this trend continues for her.

 

To my knowledge, my daughter is not having agitation issues at school. Somehow, she is able to control that there. She told me that she has the feelings there, but tries to control them. She has said she does the same around her dad because he gets so angry. Do other PANDAS kids have this situation that they are able to control the agitation, outbursts, etc in certain situations, but not in others? I'm trying to learn all I can about this condition so I can better understand what she is dealing with and can better help her.

 

 

As many of you know, Gaby was on augmentin daily since IVIG in October. She had some really bad flares in December. We took her off augmentin and put her on azithro. The agitation continued and worsened so much so that she needed an aid with her in school at all times. She yelled out frequently about white dots or lights in front of her eyes and hit or kicked at them, scaring the other kids in class. For over 2 months she continually asked certain questions over and over and expected an answer every time and would get very angry if not answered or was re-directed. Her titers are always outside of the normal range, but never sky high. A few weeks ago I took her off antibiotics. She's still on basic vitamins (folic acid, B12 inject., MVI, vit E, monolaurin, probiotics- for a while yet) She has been gradually getting better to the point that I have to really think if she said something repetitive today. I think she might have said a couple of times "what happened?" about nothing, compared to several times a minute of irrelevant questions within the last few months. No mention of dots or lights or outbursts for at least one and a half weeks. Her sleep is still disturbed (wakes up around 4:30 and will stay awake) but at least its not night terrors right now or constant talking while she's awake.

 

I don't know if it's related to the antibiotics or maybe just coincidental. I do know that last year her symptoms very gradually started getting better in the middle of February and then slowly dwindled away to nothing by end of April. Maybe that will happen again this year. Maybe its the fall and early winter that holds the worst in store for her (with viruses, etc). I guess I'll have to wait and see. We have a PET scan scheduled at Detroit Children's hospital on the 26th of February. - Am really looking forward to seeing those results. I thought initially it was supposed to be a spect scan, but found out since that they want to do the PET instead. My thoughts are with all who are having bad times right now and am hoping that it will get better soon like it has with Gaby lately. Pat

[colleenrn]

My daughter told me should would try her hardest at school or in public settings to not tic, but when she wouold get home she would relax and then we would see the tics. Lots of peolpe have told me they never noticed her tics until I pointed them out and they really tried to pay attention to them. I think that is probably common with some kids.

[michele]

We here the same thing from everyone at the school, they have never heard or seen the tics. At home he is so annoying with the noises and constant talking. He cracks his fingers and toes all the time. He is so defiant and argues to no end. Nothing like this at school though. Go figure. They save it up for the ones who care the most!

Yes, my ds completely controls it at school. Even when his throat clearing was at it's worst his teacher said she didn't notice it at school. If he was doing it at school like he was at home, she would have definitely noticed as it would have driven her insane! He also never had any behavior issues or rages at school... the only thing he does at school is tell her if she is not on schedule or doing things "right"... he thinks he knows everything.. not sure if that's the pandas or his personality though.

 

 

I'm glad Gaby is improving and hope this trend continues for her.

 

To my knowledge, my daughter is not having agitation issues at school. Somehow, she is able to control that there. She told me that she has the feelings there, but tries to control them. She has said she does the same around her dad because he gets so angry. Do other PANDAS kids have this situation that they are able to control the agitation, outbursts, etc in certain situations, but not in others? I'm trying to learn all I can about this condition so I can better understand what she is dealing with and can better help her.

 

 

As many of you know, Gaby was on augmentin daily since IVIG in October. She had some really bad flares in December. We took her off augmentin and put her on azithro. The agitation continued and worsened so much so that she needed an aid with her in school at all times. She yelled out frequently about white dots or lights in front of her eyes and hit or kicked at them, scaring the other kids in class. For over 2 months she continually asked certain questions over and over and expected an answer every time and would get very angry if not answered or was re-directed. Her titers are always outside of the normal range, but never sky high. A few weeks ago I took her off antibiotics. She's still on basic vitamins (folic acid, B12 inject., MVI, vit E, monolaurin, probiotics- for a while yet) She has been gradually getting better to the point that I have to really think if she said something repetitive today. I think she might have said a couple of times "what happened?" about nothing, compared to several times a minute of irrelevant questions within the last few months. No mention of dots or lights or outbursts for at least one and a half weeks. Her sleep is still disturbed (wakes up around 4:30 and will stay awake) but at least its not night terrors right now or constant talking while she's awake.

 

I don't know if it's related to the antibiotics or maybe just coincidental. I do know that last year her symptoms very gradually started getting better in the middle of February and then slowly dwindled away to nothing by end of April. Maybe that will happen again this year. Maybe its the fall and early winter that holds the worst in store for her (with viruses, etc). I guess I'll have to wait and see. We have a PET scan scheduled at Detroit Children's hospital on the 26th of February. - Am really looking forward to seeing those results. I thought initially it was supposed to be a spect scan, but found out since that they want to do the PET instead. My thoughts are with all who are having bad times right now and am hoping that it will get better soon like it has with Gaby lately. Pat

[pmoreno]

Finally - we're making some progress. I got a call today and Dr. Chugani at Detroit Children's Hospital is going to include Gaby in his research study so she will have 2 possibly 3 different scans which won't be charged to the insurance company, but will be free of charge. The important thing is that we might get some answers. They are going to call me back on Monday to actually schedule these. Also the psychology department here at UM called me today to say that they would like to do a whole battery of neuropsych testng.

[Indigo]

Wow that is so great! Will she do okay for the tests?

[amy s]

Finally - we're making some progress. I got a call today and Dr. Chugani at Detroit Children's Hospital is going to include Gaby in his research study so she will have 2 possibly 3 different scans which won't be charged to the insurance company, but will be free of charge. The important thing is that we might get some answers. They are going to call me back on Monday to actually schedule these. Also the psychology department here at UM called me today to say that they would like to do a whole battery of neuropsych testng.

 

Pat! This is wonderful news!! Keep us posted on the progress.

[pmoreno]

Wow that is so great! Will she do okay for the tests?

 

 

If you mean the scans - they will have to give her a sedative intravenously to make sure she is completely still.

 

As far as the neuropsych testing - it will be things like - speech and language, motor skills, cognitive testing, etc. However she tests out - that's where she will be at this point. It will be interesting to see at what level she is functioning right now. She is doing better with her obsessions and anxiety - but her academic abilities aren't what they were before. I'll post again and update when she's had these.

[browneyesmom]

That is great news!! I hope everything goes smoothly for her with the testing.

 

Wow that is so great! Will she do okay for the tests?

 

 

If you mean the scans - they will have to give her a sedative intravenously to make sure she is completely still.

 

As far as the neuropsych testing - it will be things like - speech and language, motor skills, cognitive testing, etc. However she tests out - that's where she will be at this point. It will be interesting to see at what level she is functioning right now. She is doing better with her obsessions and anxiety - but her academic abilities aren't what they were before. I'll post again and update when she's had these.

[EAMom]

That is great news about the Scans and neuropsych. testing. Hopefully you will be some answers!

[michele]

Pat this is so exciting. i can't wait to hear the results. This is great news for Gaby.

Michele

Finally - we're making some progress. I got a call today and Dr. Chugani at Detroit Children's Hospital is going to include Gaby in his research study so she will have 2 possibly 3 different scans which won't be charged to the insurance company, but will be free of charge. The important thing is that we might get some answers. They are going to call me back on Monday to actually schedule these. Also the psychology department here at UM called me today to say that they would like to do a whole battery of neuropsych testng.