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19yo coming out the other side :D


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Hi,

Just wanted to give an update on myself. DX pandas by Dr. K December of 2009. Worked with him, Dr. Leckman, and Dr. B from then on. First tried Augmentin 875 2x daily. Saw huge improvements, went back on to Augementin at 500 2x daily. Return of symptoms. Upped it to 875 again but there was a lot of stomach cramping with that. Dr. B switched me to Omnicef 300 2x daily at the beginning of March; have been on it ever since. Starting taking optimized curcumin 1x daily. Other supplements: probiotics (actually had to decrease these because i was taking too much, 5 billion cfu, and it was causing bloat), Aller-c (which is vitamin c, querecetin, bioflavonoids, etc), evening primrose for my pandas-induced menstrual problems), mentharil (mint, rosemary, thyme oils in pill to stop spasms of the intestines), and 2000iu vitamin D. Dr. Leckman has recommended staying on the Omnicef indefinitely and doing cognitive behavioral therapy if I have trouble breaking ocd habits.

 

Pandas symptoms: seperation anxiety, general anxiety, digestive trouble, rages, panic attacks, intrusive thoughts, ocd compulsions, trouble sleeping, and restrictive eating.

 

I'm almost afraid to say it, because I think I'll jinx it, but: I think I'm ok. My anxiety is--gone. I definitely have some habits that formed while having anxiety for five years straight that I need to break, such as constantly checking for exits, etc. but it feels different. I can tell that I can control it, rather than have it control me. OCD compulsions are mostly gone, at least the ones that held me back. Again, a few emotional habits that need to be broken. My stomach seems to be pretty under control, sticking to my diet though--not interested in trying something new and causing any problems right now.

 

I am having a little trouble with my eating/sleeping patterns still, but again I feel like that's it's more a habit from how I was coping emotionally with my undiagnosed-pandas. I think they will be worked out eventually--not anything to hold me back terribly.

 

I'm driving for really the first time on my own and after having my license for three years finding out that I do in fact enjoy the freedom and enjoy being out on my own.

 

I'm reading again, very quickly. As a kid I read 200+ pages a day. During teen pandas exacerbation I was lucky to get 15 pages a day.

 

And get this: my eye sight actually improved. My eye doctor has to lessen my prescription because I was seeing better than I was two years, in the middle of my worst exacerbation.

 

We'll see how it goes the next time I come in contact with strep/m. pneumonia. I did have a little trouble with the pollen over the last month triggering symptoms, but they were SOO much more manageable than they ever were. Only had to stay home for two days, and I still had enough energy in those two days to clean my room: major improvement.

 

Going to go get an echo on my heart to see if I have the mitral valve prolapse because of all this; slight chest pain. But that will hopefully be my last pandas-related appointment for a while.

 

I just wanted to share and maybe give you guys some hope. I know reading all your stories has helped my parents and I so, so much. So thank you.

 

I also wanted to offer, because I am a bit older than a lot of the pandas kids and maybe better able to articulate how it feels, that if any of you want to ask some questions about how the anxiety, rage, panic, etc feels physically to please go ahead an PM me about it. I can tell you that I personally felt each of those things coming on hours before the actually tipping point of symptoms, so maybe I can give you some questions to ask your children and help you spot a "pandas attack" earlier on. I remember how I felt as a kid before I had pandas, and I remember how it felt to be in the middle of it, and now I learning what it's like to come out of it, so I'm hoping I can be a resource.

 

Crossing my fingers this sticks!

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I can't tell you what your post means to me. Thank you so much for sharing. It is important to hear the parents' perspective but to hear yours is such a support to me (us). I wish you continued success and hope you will post again.

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You really just made my day!!!! My son is 14 and I sometimes lose hope that this will truly improve for him. Your post gives me hope - a truly great gift. My son also lost his ability to read fiction somewhere in this illness. And one more interesting thing - we just visited the eye doctor a few weeks ago (after several months on antibiotics) and was told HIS eyesight has improved too(no longer far sighted). Wild stuff. I'm going to copy your post, print it and read it in my down moments. I plan to PM you to for some personal insights soon!!!!

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I'm so happy to hear you're having improvement! As for residual symptoms, work on them and you can overcome. Now that you are healing from PANDAS, overcoming the residual symptoms will be a little easier.

 

Thanks for the update!

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Thank you for your post. I needed to read it today. I will show it to my 9 year old and let him know he can PM you if he has any questions. It is his inability to let me know if his actions are in his control or not that are so frustrating. Maybe you could help him articulate what he can't say.

Thanks you and we are all cheering you on!!!!

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Thank you for sharing your success! We all need to hear that it is possible! I would love to hear more about how you knew it was coming on- I would love to find a way for my son to let me know if he feels a rage coming on( his main issue). He can identify it in hindsight but I don't know if he can do it when it is coming on ( we have only been diagnosed for about 4 weeks and had great results with the month abx).

Please keep sharing your success- you have a fan club here!! Enjoy your freedom!

Brandy

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My DD is 18 and my son 14. Who says PANDAS only effects little kids? We are switching to Omnicef as well, I believe as Keflex isn't doing quite what it did before. Best wishes to you!

 

Nancy

 

Hi,

Just wanted to give an update on myself. DX pandas by Dr. K December of 2009. Worked with him, Dr. Leckman, and Dr. B from then on. First tried Augmentin 875 2x daily. Saw huge improvements, went back on to Augementin at 500 2x daily. Return of symptoms. Upped it to 875 again but there was a lot of stomach cramping with that. Dr. B switched me to Omnicef 300 2x daily at the beginning of March; have been on it ever since. Starting taking optimized curcumin 1x daily. Other supplements: probiotics (actually had to decrease these because i was taking too much, 5 billion cfu, and it was causing bloat), Aller-c (which is vitamin c, querecetin, bioflavonoids, etc), evening primrose for my pandas-induced menstrual problems), mentharil (mint, rosemary, thyme oils in pill to stop spasms of the intestines), and 2000iu vitamin D. Dr. Leckman has recommended staying on the Omnicef indefinitely and doing cognitive behavioral therapy if I have trouble breaking ocd habits.

 

Pandas symptoms: seperation anxiety, general anxiety, digestive trouble, rages, panic attacks, intrusive thoughts, ocd compulsions, trouble sleeping, and restrictive eating.

 

I'm almost afraid to say it, because I think I'll jinx it, but: I think I'm ok. My anxiety is--gone. I definitely have some habits that formed while having anxiety for five years straight that I need to break, such as constantly checking for exits, etc. but it feels different. I can tell that I can control it, rather than have it control me. OCD compulsions are mostly gone, at least the ones that held me back. Again, a few emotional habits that need to be broken. My stomach seems to be pretty under control, sticking to my diet though--not interested in trying something new and causing any problems right now.

 

I am having a little trouble with my eating/sleeping patterns still, but again I feel like that's it's more a habit from how I was coping emotionally with my undiagnosed-pandas. I think they will be worked out eventually--not anything to hold me back terribly.

 

I'm driving for really the first time on my own and after having my license for three years finding out that I do in fact enjoy the freedom and enjoy being out on my own.

 

I'm reading again, very quickly. As a kid I read 200+ pages a day. During teen pandas exacerbation I was lucky to get 15 pages a day.

 

And get this: my eye sight actually improved. My eye doctor has to lessen my prescription because I was seeing better than I was two years, in the middle of my worst exacerbation.

 

We'll see how it goes the next time I come in contact with strep/m. pneumonia. I did have a little trouble with the pollen over the last month triggering symptoms, but they were SOO much more manageable than they ever were. Only had to stay home for two days, and I still had enough energy in those two days to clean my room: major improvement.

 

Going to go get an echo on my heart to see if I have the mitral valve prolapse because of all this; slight chest pain. But that will hopefully be my last pandas-related appointment for a while.

 

I just wanted to share and maybe give you guys some hope. I know reading all your stories has helped my parents and I so, so much. So thank you.

 

I also wanted to offer, because I am a bit older than a lot of the pandas kids and maybe better able to articulate how it feels, that if any of you want to ask some questions about how the anxiety, rage, panic, etc feels physically to please go ahead an PM me about it. I can tell you that I personally felt each of those things coming on hours before the actually tipping point of symptoms, so maybe I can give you some questions to ask your children and help you spot a "pandas attack" earlier on. I remember how I felt as a kid before I had pandas, and I remember how it felt to be in the middle of it, and now I learning what it's like to come out of it, so I'm hoping I can be a resource.

 

Crossing my fingers this sticks!

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Thank you so much for sharing this. This gives me such hope for my 14 and 17 year olds, and I will share your post with them. I remember my 14 year old, after PEX last year, had a serious anger episode. I say anger, because in the past it was always a rage. Even though it looked the same to me, and I ended up with a possible fracture in my arm from it, he said afterwards that it was really different. He said that he had never felt that way before, and although he got really "angry" (his words), it was one he knew he could control. He said the rages in the past (and recently showing up again) were "adrenaline rushes." So, you're very right that there are differences...some you can control and others not.

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Thank you so much for reaching out to us. Your story is exactly what we need. Not just how to manage the day to day, but how you made it to the other side. The marathon. I think we are all so scared our children won't come out. There is scant information on adults that have come through it. There is an 8 year study following 60 or so kids with pandas that should come out later this year, but we need help now.

 

Did you do any IVIG or steroid bursts?

My son is very irritatble (much of the time now, even though we have had huge improvements with the antibiotics). One of his triggers seems to be me. :huh:

Not sure if this is because I am the only safe person for him ot let loose on, or if I sould just stay away from him.

 

Thank you again.

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