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fcefxer

Update on my 20 yr old Pandas Daughter

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We were very concerned about my daughter's PANDAS return from Myco. Last time it took 5+ weeks on Omnicef/ Keflex to bring her back. She was in such bad shape we knew we had to do something bold, So we did IV Doxycycline as well as Luvox. By day two she was 85% better. This showed us the Doxy was key. By day 7 she began getting sad again so we knew Luvox is an SSRI she can't take. Today, just on Doxy and she's GREAT!!!! It took guts for our doctor to do this. All is right in the world. Apparently Doxy is great against mycoplasma.

 

Nancy

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We were very concerned about my daughter's PANDAS return from Myco. Last time it took 5+ weeks on Omnicef/ Keflex to bring her back. She was in such bad shape we knew we had to do something bold, So we did IV Doxycycline as well as Luvox. By day two she was 85% better. This showed us the Doxy was key. By day 7 she began getting sad again so we knew Luvox is an SSRI she can't take. Today, just on Doxy and she's GREAT!!!! It took guts for our doctor to do this. All is right in the world. Apparently Doxy is great against mycoplasma.

 

Nancy

 

Nancy,

So glad things are coming together and could not be happier as you find success for your oler child/woman. you are definitely paving the way!!!

i've been meaning to ask what type of doc you were able to convince to do iv doxy for myco p.??

kudos to you!!! :wub::wub:

 

you are definitly beating down that path. :ph34r:

 

also is your ins covering any of it? if i may be so bold.

 

 

 

i don't know if you want to post here or not...but i am sure alot of parents arw curious!!!!

i think my box is full and too tired to clear right now.

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Yay Nancy! Great news! May I ask the dosage of IV doxy? How long does the infusion take...30 minutes start to finish?

 

It takes two hours, start to finish. I'm not sure of the dose, but the doc said it should be in two doses per day but we are getting it in one for 12 very long, yet incredibly hopeful days. I'm thinking from memory 300 ml? But will ask today. Yes insurance covered. I know Dr. T would order, he did for my friend's PANDAS son. Our local infusion clinic said any out of state doc could order it there and their hospitalist would sign off on it. I suspect this could occur at any hospital in your home town.

 

DD was in such bad shape I was afraid to sleep. In two days, she came up stairs and boldly announced, ' I feel great! Not just good but.... (as she searched for a word) I suggested, "Strong?" To which she replied, " YES! that's it, strong!" She hugs me regularly now. I'm tired of antibiotics that destroyed my kids guts, and three million supplements that help but it's not complete. Two IVIG each, one was better but one, my son got worse with IVIG. That happens a lot. This kicked butt. Now we will continue with probiotics, B6 (in the P5P form) magnesium and zinc to fix immune system and B12 injections to boost immune system. I feel like I'm finally in control of this so and so (insert nasty name here, use your imagination LOL)

 

Nancy

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Yay Nancy! Great news! May I ask the dosage of IV doxy? How long does the infusion take...30 minutes start to finish?

 

It takes two hours, start to finish. I'm not sure of the dose, but the doc said it should be in two doses per day but we are getting it in one for 12 very long, yet incredibly hopeful days. I'm thinking from memory 300 ml? But will ask today. Yes insurance covered. I know Dr. T would order, he did for my friend's PANDAS son. Our local infusion clinic said any out of state doc could order it there and their hospitalist would sign off on it. I suspect this could occur at any hospital in your home town.

 

DD was in such bad shape I was afraid to sleep. In two days, she came up stairs and boldly announced, ' I feel great! Not just good but.... (as she searched for a word) I suggested, "Strong?" To which she replied, " YES! that's it, strong!" She hugs me regularly now. I'm tired of antibiotics that destroyed my kids guts, and three million supplements that help but it's not complete. Two IVIG each, one was better but one, my son got worse with IVIG. That happens a lot. This kicked butt. Now we will continue with probiotics, B6 (in the P5P form) magnesium and zinc to fix immune system and B12 injections to boost immune system. I feel like I'm finally in control of this so and so (insert nasty name here, use your imagination LOL)

 

Nancy

 

Well that didn't take long did it. DD woke up today in very bad shape. In spite of doctor's agreement about the LUVOX, (on day 2 of Doxy and Luvox she was 85% better including tic reduction, so on day 7 when she became sad again we figure the Doxy was what was working because Luvox could not be helping so soon) it appears that Luvox was the winning ingredient. I'm assuming we are getting Myco with Doxy so I'm still feeling that was a good choice, but since at 7 days the Luvox began making her sad, either we stopped it too quickly, or at a lower dose she is better. I gave her 25 ml (half a pill) and am praying while shaking my fist in the air, that this lower dose will be ok. Wish it were a better update. we stopped the 50 mg Luvox 2 days ago. Apparently she is just REALLY sensitive to it. If our PANDAS kids don't do well on SSRI's because they have too much dopamine, would an SSRI with something that lowers Dopamine fix this??? ARGH (bangs head against wall....drool)

 

Nancy

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Yay Nancy! Great news! May I ask the dosage of IV doxy? How long does the infusion take...30 minutes start to finish?

 

It takes two hours, start to finish. I'm not sure of the dose, but the doc said it should be in two doses per day but we are getting it in one for 12 very long, yet incredibly hopeful days. I'm thinking from memory 300 ml? But will ask today. Yes insurance covered. I know Dr. T would order, he did for my friend's PANDAS son. Our local infusion clinic said any out of state doc could order it there and their hospitalist would sign off on it. I suspect this could occur at any hospital in your home town.

 

DD was in such bad shape I was afraid to sleep. In two days, she came up stairs and boldly announced, ' I feel great! Not just good but.... (as she searched for a word) I suggested, "Strong?" To which she replied, " YES! that's it, strong!" She hugs me regularly now. I'm tired of antibiotics that destroyed my kids guts, and three million supplements that help but it's not complete. Two IVIG each, one was better but one, my son got worse with IVIG. That happens a lot. This kicked butt. Now we will continue with probiotics, B6 (in the P5P form) magnesium and zinc to fix immune system and B12 injections to boost immune system. I feel like I'm finally in control of this so and so (insert nasty name here, use your imagination LOL)

 

Nancy

 

Well that didn't take long did it. DD woke up today in very bad shape. In spite of doctor's agreement about the LUVOX, (on day 2 of Doxy and Luvox she was 85% better including tic reduction, so on day 7 when she became sad again we figure the Doxy was what was working because Luvox could not be helping so soon) it appears that Luvox was the winning ingredient. I'm assuming we are getting Myco with Doxy so I'm still feeling that was a good choice, but since at 7 days the Luvox began making her sad, either we stopped it too quickly, or at a lower dose she is better. I gave her 25 ml (half a pill) and am praying while shaking my fist in the air, that this lower dose will be ok. Wish it were a better update. we stopped the 50 mg Luvox 2 days ago. Apparently she is just REALLY sensitive to it. If our PANDAS kids don't do well on SSRI's because they have too much dopamine, would an SSRI with something that lowers Dopamine fix this??? ARGH (bangs head against wall....drool)

 

Nancy

 

Doxy dose was 200 mgs a day. IV became so painful as she had vein spasms (what else God? Huh???) We will continue after 9 days with pill form.

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Nancy, thank you for your updates. When you were talking about your daughter feeling "strong" I could hear YOU being strong as well and it felt so good to read that and feel that strength and empowerment in your voice. Healing is so hard, and you reminded me of Scarlett O'Hara when she declared to God and to herself, "I will never be hungry again!"

 

I am deflated to read the IV had to be stopped. But she made it close to the finish line. She has a lot of very strong medicine in her, her body has taken a beating. Perhaps she she is herxing on it in addition to Luvox back and forth?

I know you will be victorious, Nancy!

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Nancy, regarding pandas kids having "too much dopamine" I think I remember Dr K(?) a while back telling us that is was "dysregulated" dopamine that was the problem. Perhaps that is why SSRI's are most difficult.

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I'm so sorry to hear your most recent update. I hate PANDAs. It is such a whirlwind of emotions. Hang in there. Something has GOT to work. My DD did much better when we added in Abilify (in addition to the SSRI) but the side effects (loss of menstrual cycles, incredible hunger and weight gain)were unbelievable so we had to reduce it significantly. There might be one in the class that helps. My doctor said there is a newer and better one but my daughter is too young to use it.

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I'm sorry to hear that you had to stop the IV, but I agree that you got in many good days that are bound to be helpful. I just wanted to add something about the Luvox. My oldest son who has had PANDAS for many years, has taken many different SSRI's. When he took Luvox it actually made him worse. He was able to take Zoloft, Lexapro, and Celexa (not at the same time). He was on SSRI's for many years because he was diagnosed at a time when no one knew anything to do but treat the OCD with psych meds. He is currently off all SSRI's and taking daily antibiotics along with several supplements. The one's that helped him most was Zoloft and Celexa. It's just really important to start at a low dose. I would not use an experience with Luvox as an indicator of her response to SSRI's in general. JMHO. Hang in there. You are doing an awesome job. What an inspiration you are to the rest of us!

 

Dedee

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