PANDAS - if your child took zythromax or other antibiotics

amother

Mon, Jan 25 2021, 10:42 am

How long were they on antibiotics total? At what point did you see positive results? Also which antibiotics did your child take?

amother

Wheat

Mon, Jan 25 2021, 10:54 am

On and off one or more of these zithromax, omnicef, amoxicillin for 2 years. We started to see changes within a few days but took a few months to be in a very good place.
Honestly though, antibiotics was not the answer. It only helped as long as she was on it. We ended up going the natural route and Bh saw amazing things!

sm236

Mon, Jan 25 2021, 11:04 am

My son was on zythromax for at least a year, we could not get him off it. We ended up taking out his tonsils and saw a tremendous improvement. BH!!

But I am not 100% convinced it was Pandas, I think his tonsils and adenoids were so big it affected his sleeping and I also have this theory (not medically backed up) that his tonsils had infection in them that never went away...

Hatzlacha!

amother

Jade

Mon, Jan 25 2021, 11:07 am

amother [ Wheat ] wrote:

care to share details?

amother

Beige

Mon, Jan 25 2021, 11:39 am

My DS was on augmentin for a year. for the second month of that we did do zithromax, but did not get the same results as augmentin.
After the year he was totally fine, for about 10 months. Some time ago, his younger brother had strep that wasn't diagnosed for 4 days, and his pandas symptoms came back. He is back on augmention since then. (it's about 3-4 weeks so far)
I am hoping it won't take as long this time around, and may need to put him on low-dose amoxil or something to prevent a relapse with the next exposure.
In the 10 months he was off meds, he did act up mildly, pandas-style, with every cold or sore throat, but that was easily treated with motrin and went away with the cold/sore throat.

amother

Lavender

Mon, Jan 25 2021, 11:49 am

OP we are going on year 4 of on and off antibiotics, but the longest we were on for a stretch was 6 months. We tried many alternative treatments as well. I honestly don’t think antibiotics alone can cure this.

HakarasHatov

Tue, Mar 02 2021, 11:24 am

amother [ Wheat ] wrote:

What were the natural things you did?

amother

Wheat

Tue, Mar 02 2021, 11:53 am

We did many natural things and each one brought its own improvements. The 2 that we saw the most help with were homeopathy for vaccine detox and strep/other infections, and craniosacral therapy.

amother

Lavender

Tue, Mar 02 2021, 8:39 pm

Helpful natural interventions:
gluten and dairy free diet, ideally as close to ancestral as possible, AIP or SCD even better but too restrictive for most to implement realistically
Epsom salt and magnesium flakes footsoaks comsistently at least 3 nights a week
Blisk12 and other histamine lowering non strep strain probiotics and fermented foods
Chinese herbal protocol with 1 killer herb and 2 that are anti neuroinflammation
Methylated b vitamins + extra b1 and b2
Magnesium malate, taurate and threonate
NAC or glutathione
L theanine
Gaba
5htp
Inositol
Yeast treatment
Parasite treatment
Digestive enzymes

Antibiotics still gave us the most gains, but they only stick as long as we stay on. As soon as we come off, the behaviors come right back.

amother

Babyblue

Tue, Mar 02 2021, 10:31 pm

amother [ Lavender ] wrote:

Did you really give the 20 things listed above plus special diet and fermented foods too all together?

amother

Lavender

Tue, Mar 02 2021, 10:38 pm

amother [ Babyblue ] wrote:

Did you really give the 20 things listed above plus special diet and fermented foods too all together?

No this was just a list of suggested interventions.

amother

Rose

Tue, Mar 02 2021, 10:39 pm

My 6 year old son was on Zithromax (strong dose) for three-four months. Started seeing improvements after about 6-7 weeks. It’s a slooow process but you need to have patience. He kept improving after he finished his last dose of meds. Doctor told us it would take a while to completely heal. Good luck!

amother

Wheat

Tue, Mar 02 2021, 10:49 pm

amother [ Lavender ] wrote:

I've done many of these things at different points. All very helpful toward healing and worthwhile to trial.

amother

Violet

Wed, Mar 03 2021, 12:21 am

Zythromax helped temper things for my child but after a while we switched to duricef and saw better results. At this point it's a couple months on followed by a few months off for the last couple of years. When we started antibiotics the first time we saw immediate differences. Now I see a difference within the first couple of weeks

amother

cornflower

Wed, Mar 03 2021, 6:31 am

My 16 year old required 3 ivig infusions. I am pretty sure he was also on antibiotics for close to a year but I don't remember which. However he was really sick with pandas ( in the hospital for close to two weeks) it took about a month after he was released to get the diagnosis. The doctors had said it can't be pandas he wouldn't be this sick but they had just never seen such a bad case

amother

Babyblue

Wed, Mar 03 2021, 8:02 am

amother [ Wheat ] wrote:

I've done many of these things at different points. All very helpful toward healing and worthwhile to trial.

So there's no clear path you would recommend, after all that??