Dd doing fantastically well

[momaine]

I want to share our good news but I am also afraid that the minute I post it that things will go to ######.

 

Dd (14yrs and suffering with PANDAS for 4 years now)is 3 days post 3rd HD IVIG and she is doing fantastically well. If I had to give it a number, I'd say she's 85 percent better.

 

We started decreasing Celexa 3 days ago, which is a little scary. In the past on day 3, she's fallen apart completely, but she's in such a better starting place, that I'm hoping that won't happen this time.

 

I'd be happy to answer any questions. She's in school with a busy social life and she is so happy. we were in despair this time last year.

[JAG10]

Fantastic!!!!!

 

What a wonderful way to start the weekend!!!

 

Here's hoping 3 times is the charm!!!

[momaine]

Fantastic!!!!!

 

What a wonderful way to start the weekend!!!

 

Here's hoping 3 times is the charm!!!

 

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free.

 

But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow.

 

I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well.

 

We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past)

[JAG10]

Fantastic!!!!!

 

What a wonderful way to start the weekend!!!

 

Here's hoping 3 times is the charm!!!

 

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free.

 

But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow.

 

I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well.

 

We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past)

 

Momaine,

 

Can you remind us how her 3 IVIGs were spread out?

[kimballot]

 

Such a nice post to read!

[philamom]

Fantastic!!!!!

 

What a wonderful way to start the weekend!!!

 

Here's hoping 3 times is the charm!!!

 

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free.

 

But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow.

 

I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well.

 

We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past)

momaine- Can I ask how long after IVIG you did the Igenex test?

[Fixit]

OH YEAH!!!!!! So good....

 

can i ask if your dd had any panda symptoms prior to the onset 4 years ago...

ie other smaller periods of pit/pands lasting a month or a few...

or other things like bad handwriting..clinginess...rages...

 

and..after the 4th...are you done? ie..will you do them annually to keep her on target....

or this could well be the end??? is there a plan...or just giving it time????

 

again....SO HAPPY..needed to hear it!!

[momaine]

Fantastic!!!!!

 

What a wonderful way to start the weekend!!!

 

Here's hoping 3 times is the charm!!!

 

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free.

 

But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow.

 

I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well.

 

We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past)

 

Momaine,

 

Can you remind us how her 3 IVIGs were spread out?

She had 1.5g/kg every 8 weeks for a total of 3 times so far. Her last one was Monday and Tuesday of this week.

[momaine]

Fantastic!!!!!

 

What a wonderful way to start the weekend!!!

 

Here's hoping 3 times is the charm!!!

 

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free.

 

But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow.

 

I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well.

 

We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past)

momaine- Can I ask how long after IVIG you did the Igenex test?

7 weeks after

[momaine]

OH YEAH!!!!!! So good....

 

can i ask if your dd had any panda symptoms prior to the onset 4 years ago...

ie other smaller periods of pit/pands lasting a month or a few...

or other things like bad handwriting..clinginess...rages...

 

and..after the 4th...are you done? ie..will you do them annually to keep her on target....

or this could well be the end??? is there a plan...or just giving it time????

 

again....SO HAPPY..needed to hear it!!

Before 4 years ago, my dd was the most carefree kids ever. And all her symptoms did not come on over night. It started with some anxiety and ocd type questions and then gradually worsened. After a months of therapy we put her on zoloft and it did seem to ease her anxiety. She was okay for 6 months. Then she worsened. We upped the zoloft and she did okay for about a year and a half, then her symtpoms EXPLODED. She was completely incapacitated by ocd and developed vocal and motor tics. After starting augmentin, her anxiety reduced at first. Then we added in Zith and her vocal tic went away in two days. Then we did short steroid bursts with good outcomes. Then we knew how good it could be and eventaully did longer steroid tapers, then eventually ivig because the benefits of prednisone were not permanant.

 

 

Yes, she had rages, extreme seperation anxiety, and milk maid grip, but never noticable hand writing issues because she really just didn't write and its always messy anyway, so it was hard to tell.

 

This is day 5 of reducing celexa as well as 5 days post ivig and she's had a slight worsening of symptoms but nothing alarming so far.

 

I have no idea if she will need future ivig's but our Dr. seems to think that its not likely after one or two more. He wants her to be back to 100% and stay there. His educated guess was that she would not need more but we won't know that till we get there, I guess.

 

So far, everything he has said has been true for my dd. I really trust him and feel such a sense of gratitude for him and all the doctors who have helped us on this path. Each one helped us in some way. I will be forever grateful!