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I was wondering if anyone of the PANDAS parents here would mind sharing their protocol for exacerbations and antibiotic/ supplements.

DD5 had overnight onset back in October when she was 4. We got in to see Dr. B just 7 weeks after onset, with no medical intervention in the meantime. Since early December, her meds are as followed: Started off on Augmentin 600 mg, 2x per day. (She is 52 pounds). And started off with a Prednisone taper for 15 days. By the time we saw Dr. B, her symptoms did subside quite a bit, and I cannot say I saw much improvement with the start of prednisone or Augmentin. It had me questioning PANDAS.

Then at our second visit we got back our blood work. She was IgG positive for Ehrlichiosis, low vitam D, high B12, High C3D immune Complex and high Asialo Gangliosides. In addition to the Augmentin, we added in Azithromycin. We did see more improvement. She was on that until April. We did another steroid taper in March for a throat clearing tic. The tic stopped after a few days, but we had also discontinued her flouride tablets. The tic started after a dental cleaning.

 

In April, we also added A-bart. Her LLMD suspected Bartonella. She was pretty much symptom free when we saw him except for intrusive words and thoughts. They seemed to die off after starting the A-bart. She is on 2 drops, 1x per day.

 

She has had a few flare ups since then, while on the treatment dosage of Augmentin. She strated with a flare up again in June, mostly with intrsive thoughts and confessing, after a virus. We saw Dr. B in mid June and we added in yet again more Azithromycin, which helped. She is doing okay now, but not baseline. She is definitely manegable. She has some intrusive thoughts and some bedtime fears of things like shadows and bad people in her room. Last night, she said it felt like ants were crawling all over her, which was something new. She is now a few days off of Azithromycin.

 

So, we are still relatively "new" to PANDAS, being less than 1 year. I was feeling annoyed that she was flaring while on a treatment dose of abx, so I made an appointment for a homeopath, which isn't until August. I'm debating on cancelling our appointment. I just feel like we are still new to battling this, and I do want to stick with our PANDAS specialist and LLMD, especially since on Inside Edition Dr. B said there is a high rate of "cure" if you catch it early. (Which I think we caught relatively early.) I think we should just delay the homeopathic appointment, at least for a while. I would like to try a prophylactic dosage for a while, then eventually try to move to no abx, except for flare- ups.

 

So, my question to you all is,if you will share, are you on prophylactic abx? If so, which one? How often? Or do you remain off abx and just treat with flare- ups? Do you supplement with things to boost the immune system?

 

I would love to hear what others are doing. While I would love to get her off of the abx eventually, I do not see a rush in it yet, because I have faith that Dr. B will keep trying his best.

 

I'm wondering if my other kids could be making her flare? Or us? My husband and I both have a high IgG for mycoP. And my DS, almost 3, has bloodwork that looks like PANS. He is not symptomatic, except for some emotional lability, which could not be related, and he goes in flares of stuttering, which could also be typical for a 2 yr old. I have have a daughter who just turned 1. She does this eye blinking thing, which I thought may have been seizures, but her EEG was normal. We will also do a brain MRI on her. DR. B thinks it may be PANDAS, but we haven't done blood work on her. We did a 4 week trial of azithromycin on her, but the blinks continued. Strangely enough, they have now lessened while she is now off of the abx.

 

Thanks all.

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We use keflex daily as prophylactic. Then switch to augmentin for flairs. The last flair I tried biaxin instead and that seemed to almost make tics worse. I won't try that again. I also think your one year old had an eye blink tic. That was one of the first tics my son had. The abx may have cured the infection that caused the tics but the antibodies continued to attack for the next few weeks before eventually weakening and dying off. That may be why you saw improvement after you finished her abx. Just a thought but I would definitely get her tested as well.

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My ds is on zithromax 250 mg 3 x per week. When he flares we use Augmentin 875 twice a day. Ds is around 65 lbs. If I have my way I will keep him on antibiotics for strep prevention because the 3 rd episide was really difficult and harder to treat. I do not want to risk another strep infection and this turning chronic. He has had no problems with the antibiotics that he has been on for about 1 year now.I agree that the blinking thing is a tic as this was my ds 1st symptom.

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dd4 (she was 3 at time of 1st noticeable behavioral flare up) had a complicated start - first diagnosis of RF at 3 years, followed a month later with pandas symptoms. she was put on proph abx pen v more to protect her heart from RF. At the time of RF diagnosis, the docs also queried serum sickness - as they are not comfortable removing either diagnosis as she fit both clinical diagnosis, she is not able to have any amox based medication. When pandas was discussed with us by Dr. K, we did do a 14 day trial additional to pen v with azith (augmentin is amox based), but the azith tore her tummy up into much pain, so we did not continue. She did stay on the pen v until just recently - but due to escalating side effects (more abdominal pain, teeth issues), we decided to take her off of the pen v as well.

 

We are working very closely with a ND doing immune boosting treatments and very much using food as "medicine". She is finally back to baseline, but I do have a knot in my throat for what is coming in the fall, as strep usually hits her age group around Oct/Nov pretty heavy. My hope is that she can at least get a couple of months in of no major flare ups so her immune system can continue to recover and get stronger - I am very much open to using short term abx to help (but have noticed that Advil had more impact - as I read on the forum it must be due to the inflammation??). They originally wanted dd to go on pen v until she was 18 years (which would be 15 years in length), but as we did more research on that length of abx, it got too scary for us....

 

We are also very lucky that she does not seem to have any other infections (such as lyme, bart, etc) that have shown in her blood as of yet...

 

I constantly question if we are doing the right thing - there is no clear answer on what will work for her individual case. I remind myself that we are making the best decisions we can based on the information we have at that time - it often feels like we are taking blind leaps!

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Yes, in some ways we are lucky to have the RF diagnosis so that she has available proph abx - we have spent much time in discussion around which one, when, etc - at this time, we don't have her on any (took her off a couple of weeks ago after being on since Nov 2011) as the physical side effects were more than she could bear, plus she had stopped growing while on them.

 

I have gotten blasted saying that I shouldn't be on the board saying we are choosing no abx at time as there are parents on here who would do anything to have access to proph abx. I completely respect that each of us has to make decisions for our children, and this is what works for us at this time. I hope that when I share our story, I'm not making it sound like people should do one thing or another - each family has such a personal decision to make, and from what we have experienced so far with pandas (our journey being under a year however), is that nothing is forever. Treatment changes, decisions change, and research will continue to evolve and provide us with more information to make these decisions.

 

After seeing what this does to my child, I have nothing but best wishes for families dealing with this - I just want to provide our story as that was what continues to be most helpful to me. Reading through the personal stories and then sifting through all of the information to help make the most informed decision for us.

 

I'm sorry if I offended anyone...

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Yes, in some ways we are lucky to have the RF diagnosis so that she has available proph abx - we have spent much time in discussion around which one, when, etc - at this time, we don't have her on any (took her off a couple of weeks ago after being on since Nov 2011) as the physical side effects were more than she could bear, plus she had stopped growing while on them.

 

I have gotten blasted saying that I shouldn't be on the board saying we are choosing no abx at time as there are parents on here who would do anything to have access to proph abx. I completely respect that each of us has to make decisions for our children, and this is what works for us at this time. I hope that when I share our story, I'm not making it sound like people should do one thing or another - each family has such a personal decision to make, and from what we have experienced so far with pandas (our journey being under a year however), is that nothing is forever. Treatment changes, decisions change, and research will continue to evolve and provide us with more information to make these decisions.

 

After seeing what this does to my child, I have nothing but best wishes for families dealing with this - I just want to provide our story as that was what continues to be most helpful to me. Reading through the personal stories and then sifting through all of the information to help make the most informed decision for us.

 

I'm sorry if I offended anyone...

 

 

For me- I have PANDAS-

 

1- 3 day IV steroid treatment- typically brings remission in one month- no antibiotics

if that fails- IVIG followed by PEX if needed.

Maintenance immunosuppressive drugs are options, so is immune ablation if needed.

 

My son its the same protocol but he has more going on.

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Hmmm, interesting Melissa.

I wonder why Omnicef, then back to Aug?

I'm not ready for an SSRI yet, but my options are open to go down that road if necessary.

Maybe I will see you at Dr. B's next month!

 

Thanks everyone. I just feel as if DD isn't 100%. I find myself wondering if her behaviors are just her, or if is attributed to the PANS.

Some days I wonder if maybe an IVIG would be the best, but it honestly makes me nervous. I have heard wonderful, wonderful stories, but also a few where kids got worse or no improvement.

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The thought was that since he had been on augmentin so long that even though strep is sensitive to augmentin, some other germs might not be so to give him a brand new abx to see if it would help. Omnicef was great for my lyme and it made sense to me.But it didnt help much.

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Dec 2010 after initial tic----Amox which did nothing. Penicillin took care of tic from Jan 2011 thru May 2011

 

Late 2012 rec'd Azithromycin for 5days improved both dd's one with chorea like movements and tics. Others severe anxiety was improved after 5days Azith.

 

Dec 2012 10 days Azith really helped nearly eliminated all ticcing. Dd did two rounds of 10 days Azith with a mwf prophylaxis Jan thru April 2012. 10 More days of Azith when known exposure---started ticcing next day.

 

Current Protocol

 

Enhansa for anti-inflammatory

Prescribed Multivitamin

Omega 3-6 Cod Liver and Primrose oil.

P-5-P plus

Calcium/Magnesium

Vit D drops

Vit D pils

Zyrtec for allergies

 

 

Known exposure or flare

 

Abx of Azith 10 days with known flare/exposure.----If needed. Currently not used.

Probiotics and S. Boulardi with abx.

Vitamin C

Zinc

Vitamin A drops.

 

Hope this gives you some ideas and helps.

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