I feel like the only one doing antibiotics alone for treatment

[lismom]

Is anyone else just using antibiotics to try and treat this. My son who is 12 is on his second course of zithromax. 3 months later and the H1N1, things just seem to fester. Of course the flu did not help, but I wish I could do ivig. Is anyone else waiting this out and just trying antibiotics. I do get encouragement from the Saving Sammy story. I am so scared that this is not going to resolve itself and my son has to endure symptoms he shouldn't.

 

I read the book Saving sammy but Beth doesn't really give detail timelines of symptom resolution. I know everyone is different but I get so nervous that I am not doing enough and making myself believe that with time and zithromax this will get better. I sort of give us a timeline of a year. If my son is not close to himself by then I don't know what.

 

I don't want to use steroids because there has been gut issues from the start of PANDAS. I saw reaction to additives and sugar as well as trying to rid the strep. Still confused, Li'smom

[faith]

lismom,

I'm probably in the same boat as you. I'm just depending on Augmentin right now, altho I'm just at the beginning of looking for treatment. I have been to Dr. L. and got the impression she didnt' feel my son was an extreme case, he's not in the way of ocd or rage behavior, but he does have moderate tics, with a vocal sound being the prominent one.

 

How old is your child and how long do you think you've been dealing with PANDAS? who (or what type) doctor is the one who prescribed the Azith? also, where do you live again? I get the impression that azith is goof for those on the West Coast. Do you feelthe abx have for the most part arrested most of the symptoms? I feel as you do about the pred, altho Dr. L. has prx them for us, I have not done it yet. Also, with IVIG, I am on the fence, on one hand I want it somewhere along the line, and on the other, wonder if any doctor will consider him a candidate.

 

Faith

[thereishope]

My son used only antibiotics for all 3 strep induced exacerabtions. With the exception of episdoe #3 where he did recieve a 5 day steroid. It's interesting becasue when I went htrough all 3 episodes, I was not part of this forum. I didn't reallly know anything about IVIG. If I had joined this forum as soon as he had his first PANDAS episode, I have a feeling I may have eventually started to search out IVIG. However, I did not and my son eventually got better with each exacerbation. I know this is not the case for all PANDAS children. He had severe OCD, ODD, separation anxiety, agorophobia, eating probelms, sensory problems, etc.

 

But as I sit here today, he is well, but I know he may get sick again. I will never rule out other procedures just because antibiotics worked in the past. But I am happy to know that for my son, he may get better with them and I need to give his body and brain time to heal.

[lismom]

lismom,

I'm probably in the same boat as you. I'm just depending on Augmentin right now, altho I'm just at the beginning of looking for treatment. I have been to Dr. L. and got the impression she didnt' feel my son was an extreme case, he's not in the way of ocd or rage behavior, but he does have moderate tics, with a vocal sound being the prominent one.

 

How old is your child and how long do you think you've been dealing with PANDAS? who (or what type) doctor is the one who prescribed the Azith? also, where do you live again? I get the impression that azith is goof for those on the West Coast. Do you feelthe abx have for the most part arrested most of the symptoms? I feel as you do about the pred, altho Dr. L. has prx them for us, I have not done it yet. Also, with IVIG, I am on the fence, on one hand I want it somewhere along the line, and on the other, wonder if any doctor will consider him a candidate.

 

Faith

 

My son is 12 and we have been dealing with this from Nov. of last year. What you describe is our case as well. My sons prominent tic is facial. Other symptoms are not in the way as of this moment. Yes, the zith has seemed to work for the most part. But symptoms are still mild and illnesses make this fall back steps.

 

Faith, I have been meaning to ask you how long on augmentin and what have you seen? Our son's symptoms seem similar. I remember seeing your posts when I was on the Tics forum. Does your son react to other things that may cause inflamation?

 

Kathy

[lismom]

My son used only antibiotics for all 3 strep induced exacerabtions. With the exception of episdoe #3 where he did recieve a 5 day steroid. It's interesting becasue when I went htrough all 3 episodes, I was not part of this forum. I didn't reallly know anything about IVIG. If I had joined this forum as soon as he had his first PANDAS episode, I have a feeling I may have eventually started to search out IVIG. However, I did not and my son eventually got better with each exacerbation. I know this is not the case for all PANDAS children. He had severe OCD, ODD, separation anxiety, agorophobia, eating probelms, sensory problems, etc.

 

But as I sit here today, he is well, but I know he may get sick again. I will never rule out other procedures just because antibiotics worked in the past. But I am happy to know that for my son, he may get better with them and I need to give his body and brain time to heal.

 

Vickie, can you give me an idea of time for healing. Months, years. Just trying to help better understand others exp. With each episode did it get longer to heal? We are on zith continually and when I had to stop one time my son went down hill. Kathy

[thereishope]

Well, for my son, we were very lucky that we figured out he had strep rather quickly. Let me add, he does not get classic strep symptoms.

 

For episode # 1, we found out about 2 weeks after OCD began and behaviors changed that he had strep. The dr did a strep test on a whim because she once read about PANDAS. Rapid was neg, culture was +. By the 2 months mark, he was about 90% himself when his behaviors took a horrible backslide. We took him for another strep test. It was +. Let me add, to my knowledge this was a separate strep infection. We took him for a follow up strep test after epsiode #1.

 

Episode #2. Again we found out rather quickly he had strep again, but he was not fully healed from episode #1. He was very bad off. It was with this episode he got the steroid. I totally understand hesitation with giving your child a steroid. With my son, I think it was his saving grace with that epsiode. It took about 2 1/2 or 3 months for him to get to 100% himself.

 

Epsiode #3. This one occurred about 2 months after he healed from episode # 2.PANDAS symptoms were not as bad as episode #2. Again, I believe we caught the strep pretty fast. I thought recovery was going to be faster, but it wasn't. This time he ended up having residual OCD we had to tackle. Still, total time of recovery was about 5 months. Currently, he is 100% himself. He has been strep free for 7 1/2 months now.

 

I admit as I read through this forum, I am amazed my son has improved the way he has. His PANDAS symptoms get bad, yet with time he gets better. I know I am blessed.

[Buster]

Is anyone else just using antibiotics to try and treat this.

 

Hi Lismom, for 65 weeks, we did only antibiotics and this was very effective. Her symptoms declined dramatically after the first 10 days on azithromcyin and by 1 month we were 90% better. We had 7 subsequent exacerbations and 5 of of them were correlated with her sister (or mom) having culture positive GABHS. The 6th exacerbation was tied to H1N1 and the 7th to getting Fifth's disease (symptom showed at the fever and the slapped cheeks showed 3 weeks later).

 

We would probably not have gone for IVIG if we had had fewer exacerbations -- it just seemed with the frequency we couldn't get her back to the baseline.... It was sort of like trying to stay ahead of snow storms -- we kept having a new storm before the results of the previous storm dissipated. Finally we called in for the snowplow :-) Terrible analogy but best I could think of before my coffee this morning.

 

Looking at the frequency, it looked to us that it takes our dd9 about 8 weeks to get back to "normal". If we get another cumulative exposure within that time, the baseline just goes up and the exacerbation is worse. Our daughter may be an extreme case, her CaM Kinase II was really high (253) and the severity of her symptoms was super scary (not eating, body morphology issues, severe contamination fears, ...). In our case we're glad for the reset but are now back to just keeping her on antibiotic. Treat it as we got help to get back to a baseline but EAMom and I think if it weren't for the severity of the exacerbations and the frequency we probably would have just stayed with antibiotics.

 

Regards,

 

Buster

[lismom]

Thanks for the info. Thanks for the timeline info. I wanted to get a handle on what I could probably expect as far as healing from the flu and other illness on top of trying to heal. Buster I always look forward to reading your wisdom. Thanks, Kathy

[Suzan]

We are only doing antibiotics. The jury is still out on whether I can get IVIG for dd8. So far, it's not in the works. I want to try her on a higher dose so I am going to get her in to our Dan! doc this week and ask him if he will approve a trial.

 

HUGS!

[thereishope]

I should add that my son had 3 additional setbacks not caused by strep. One was decent sized that was caused by allergies. One "medium" caused by a cold. Both of those were shortly into the healing process. Even so, they did not last long. Once the virus and allergy was under control, the PANDAS stabilized.

 

Now, a few weeks ago he had H1N1. He had only 2 blips in behavior lasted only a couple moments! And that was w/ a 105 fever! Both my husband and myself agreed it was clearly a PANADS blip, but it was so minute that any other non PANDAS parent would not be concerned. I believe it was minor becasue it has been awhile since he had strep or a mjor illness. So that gave me hope, but I still have nervousness and fear.

[T_Mom]

Lismom--

We have been treating with full strength Amoxicillan since Jan. 09 --( continuously at 500 mg 2 times a day, 95 lbs.)

 

She had been in the midst of a bad exacerbation (OCD non-talking, step-stepping, mild facial tics, mouth stretching, etc. for over ten days all triggered by a bad cold.) It was horrible, over Christmas with both sides of the family here at different times.

After 10 days of Amox. we had gone to half-strength and that was when it really exploded--we went back to full strength and within 4 days she could go back to school. We literally saw weekly progress--

 

When her progress plateaued (at about 3 months) we tried a steroid burst to bring her back to 100%. Her reaction was amazing, she came back 110%. it was an obvious improvement. She did have a mild exacerbation this spring, but NOTHING like before--

 

We just weathered H1N1 at our house and no symptoms--

 

If she had another bad exacerbation I would try steroids, or PEX or IVIG, no doubt. There is too much at stake to miss out on the time when she is well and happy again--We are going to do everything we can to not go back there, ever.

[smartyjones]

3 months later and the H1N1, things just seem to fester.

 

lismom - we are working with a homeopathic protocol similar in theory to antibiotics but with a different substance. when we started this, i posted here often asking how people were rating their treatments. overwhelmingly, it was based on the parent's observations of how their child was doing.

 

of course, you mention the H1N1 which could certainly be a factor, but 3 months sounds like a rather long time to me to not see an improvement. do you see improvements but just not back to 100%? or is it that you don't really see any improvement at all?

 

solely my opinion, if you see some improvements but slow - that could be that healing takes time. if you don't see anything, it may be time to ramp up abx or change treatments.

 

my son started with symptoms Oct/Nov last year. we discovered strep Dec/Jan. he was on a 5day course of azith - all symptoms intensified with a vengenance. Feb he was on 35 day course keflex - within 3 days he was 100% back to normal. May - a few weeks off abx, relapse - again keflex - improvements but not totally. still not 100% but seems to be s-l-o-w-l-y inching near 95%.

[DebC]

3 months later and the H1N1, things just seem to fester.

 

lismom - we are working with a homeopathic protocol similar in theory to antibiotics but with a different substance. when we started this, i posted here often asking how people were rating their treatments. overwhelmingly, it was based on the parent's observations of how their child was doing.

 

of course, you mention the H1N1 which could certainly be a factor, but 3 months sounds like a rather long time to me to not see an improvement. do you see improvements but just not back to 100%? or is it that you don't really see any improvement at all?

 

solely my opinion, if you see some improvements but slow - that could be that healing takes time. if you don't see anything, it may be time to ramp up abx or change treatments.

 

my son started with symptoms Oct/Nov last year. we discovered strep Dec/Jan. he was on a 5day course of azith - all symptoms intensified with a vengenance. Feb he was on 35 day course keflex - within 3 days he was 100% back to normal. May - a few weeks off abx, relapse - again keflex - improvements but not totally. still not 100% but seems to be s-l-o-w-l-y inching near 95%.

 

Our daughter (9) was diagnosed with PANDAS in January at the age of 8. Looking back, her first episode of PANDAS had occurred a year and a half earlier but was very mild and we attributed her obsessive cleaning at the time to being just a phase. Her January exacerbation was severe. She had extreme separation anxiety and OCD fears about all sorts of odd things. She was at her worst for about 4 weeks and things began to slowly improve. She was doing pretty well by end of March and then had a sinus infection that caused a small flare. However, she didn't get nearly as bad with this. By summer, she was nearly her normal self. Once she was back at school this fall, we've seen slight flare ups here and there with OCD. I currently have a 60 day prescription for antibiotics which I will begin again this week. We took a 10 day break to give her intestines a break as she'd been on Augmentin when her brother had strep. She is currently not on a high or regular dose of antibiotic.

[lismom]

3 months later and the H1N1, things just seem to fester.

 

lismom - we are working with a homeopathic protocol similar in theory to antibiotics but with a different substance. when we started this, i posted here often asking how people were rating their treatments. overwhelmingly, it was based on the parent's observations of how their child was doing.

 

of course, you mention the H1N1 which could certainly be a factor, but 3 months sounds like a rather long time to me to not see an improvement. do you see improvements but just not back to 100%? or is it that you don't really see any improvement at all?

 

solely my opinion, if you see some improvements but slow - that could be that healing takes time. if you don't see anything, it may be time to ramp up abx or change treatments.

 

my son started with symptoms Oct/Nov last year. we discovered strep Dec/Jan. he was on a 5day course of azith - all symptoms intensified with a vengenance. Feb he was on 35 day course keflex - within 3 days he was 100% back to normal. May - a few weeks off abx, relapse - again keflex - improvements but not totally. still not 100% but seems to be s-l-o-w-l-y inching near 95%.

 

Yes, I did see improvements to nearly 95% twice each time before there was a relapse from viral or flu. I guess I will have to see if the relapses outway the months of improvement. This just gets so frustrating. Thanks for info, Li'smom

[matis_mom]

Is anyone else just using antibiotics to try and treat this.

 

Hi Lismom, for 65 weeks, we did only antibiotics and this was very effective. Her symptoms declined dramatically after the first 10 days on azithromcyin and by 1 month we were 90% better. We had 7 subsequent exacerbations and 5 of of them were correlated with her sister (or mom) having culture positive GABHS. The 6th exacerbation was tied to H1N1 and the 7th to getting Fifth's disease (symptom showed at the fever and the slapped cheeks showed 3 weeks later).

 

We would probably not have gone for IVIG if we had had fewer exacerbations -- it just seemed with the frequency we couldn't get her back to the baseline.... It was sort of like trying to stay ahead of snow storms -- we kept having a new storm before the results of the previous storm dissipated. Finally we called in for the snowplow :-) Terrible analogy but best I could think of before my coffee this morning.

 

Looking at the frequency, it looked to us that it takes our dd9 about 8 weeks to get back to "normal". If we get another cumulative exposure within that time, the baseline just goes up and the exacerbation is worse. Our daughter may be an extreme case, her CaM Kinase II was really high (253) and the severity of her symptoms was super scary (not eating, body morphology issues, severe contamination fears, ...). In our case we're glad for the reset but are now back to just keeping her on antibiotic. Treat it as we got help to get back to a baseline but EAMom and I think if it weren't for the severity of the exacerbations and the frequency we probably would have just stayed with antibiotics.

 

Regards,

 

Buster

Funny that you mentioned Fifth's disease. At our last appointment the Dr. ordered a whole bunch of tests, and the antibodies for Fifth's disease were way high... he has been on a second exacerbation (after his sister had strep a couple of weeks ago), and now his cheeks look funny (although it was very sunny over here yesterday, thank God for nice weather !) Today he was complaining of an ear ache, joint pain, just overall tired. He is on abx right now. So, I don't know what to do. It seems a waste of time to take him to the pediatrician. We are seeing Dr. Latimer this Wednesday, and then his PANDAS doctor on Monday. We are anxiously waiting for his CaM Kinase results, hopefully they'll be in before Wednesday!

 

Isabel