I'm not handling my son's strep effectively

amother

OP ↓

Wed, Oct 09 2024, 7:51 am

Here's the story:

In early July, my ds7 was diagnosed with strep. Completed a round of antibiotics, but a week or 2 later we took him back to the pediatrician, because his nose was still so heavily green.
He tested positive for strep, and was prescribed a different antibiotic.

Around that time he started behaving out of control.

He has a very gentle, sweet natured, calm disposition, but he transformed into an animal. I still can't proccess what has happened to the little guy. He became aggressive, tense, belligerent. And very depressed. It is heartbreaking to watch him struggle.

Though there are no tics, this does seem to be pandas, according to what I've been reading.

My pediatrician is of the skeptical sort, but he goes along with me.

Since then, for weeks and weeks, my son has been on antibiotics, non-stop.

We thought there was some slight progress, but then a few days ago he regressed significantly. He refuses to go to school, he is fighting with everyone and crying all the time.

Last night we took him to the local urgent care, and he tested positive for strep again! While being on antibiotics!

I'm baffled and disheartened and worried. I feel that I didn't deal with this effectively, and I don't know what the right protocol is.

Please advise!

imaima

Wed, Oct 09 2024, 8:08 am

amother OP wrote:

I don’t see what you did wrong.

rose613 ↓

Wed, Oct 09 2024, 8:27 am

You did nothing wrong I’m sorry you are going through this. Was the culture positive or just the rapid? Rapids can remain positive while on antibiotics - the culture is crucial. Have you done pandas bloodwork work up?

Switch to a stronger antibiotic and restest after finishing course

Ent consult for tonsil removal

Motrin and Benadryl

Multivitamins + probiotics

Consider steroid burst

Cut out food coloring and other inflammatory triggers

Hatzlacha!

amother

↑ OP ↓

Wed, Oct 09 2024, 9:00 am

Thanks.

I'm trying to get educated here.

My son was most recently on cefzil. But it's the 3rd one he's been on. We've been consistent and he completed each course.

Urgent care will be sending amoxicillin this morning.

The strep test was a rapid test. They also did an overnight culture, results pending. (Is it really possible for an overnight to be negative after a rapid positive?)

The reason for my guilt is: I gave not elaborated on the situation. The kid is in mental agony for weeks. He talks of dying. He keeps skipping school.. I feel that this is an emergency, but that I'm not equipped to help him. My pediatrician is not very astute, I think.
I keep thinking that a more assertive, more well informed mother would not have allowed the situation to last this long.

amother

Canary ↓

Wed, Oct 09 2024, 9:11 am

Motrin, robitussin and benadryl (or zyrtec) asap for the mental anguish. That will buy you some time. The behaviors are the result of inflammation, not the strep infection directly.

Then you can figure out how to tackle the recurrent infections, be it LONG term antibiotocs, ivig, tonsil removal, homeopathy, airway orthodontics, herbals and supplements, diet, detox, or what not.

You might need a pandas specialist.

amother

Brunette

Wed, Oct 09 2024, 9:16 am

Repeat after me. This is not my fault. Strep is a beast. I am doing everything I can to help my son. I am the perfect mother that he needs. I can help ds.
Say it at least 5 times a day. I'm serious.

You need more help. Your pediatrician is underwhelmingly knowledgeable about strep and pandas. You either need to educate yourself or find another doctor who can help you.

Do you want to post your location so people can give a recommendation?

For right now, you can ask your doctor for azithromycin from either Santos or Teva for 30 days. This will help you buy some time until you can get another doctor but you definitely need more help. Motrin around the clock can help a lot meanwhile.

amother

↑ Oldlace

Wed, Oct 09 2024, 9:17 am

Amox is too weak for him. Do not give that antibiotic anymore.

I’d try Omnicef for 2-3 weeks.
Probiotics (a few hours later) to keep his gut healthy from all the antibiotics.

Speak to your doctor about this option

Amox is a waste of time at this point.

↑ rose613 ↓

Wed, Oct 09 2024, 10:07 am

Get the dr. Nancy o hara pandas book. Amazing resource. If your ped will work with you until you find a specialist / pandas literate doctor

Echoing other posters - amox is useless as this point.

Augmentin might be worth a shot - it’s stronger

We’ve had luck with cefdinir and that was reccomended to us by a specialist. Everyone is different. But I would switch from the Amox asap

GiGichai ↓

Wed, Oct 09 2024, 10:54 am

Please join the pandas WhatsApp chat for support...you can pm your number to be added...
My son with repeated strep ended up with being underlying lyme disease that had gone undetected for a few months (after being bitten by tick)...
He was also 7 when this started. It is horrifying and scary..
My quick advice is to give motrin round the clock for a few days (antihistamines sometimes help people or make people worse like my son.... motrin works more consistently.)Or at least when he talks about dying or in massive rage...that should calm things quickly.
The next piece of advice, depending where you live, is find a great pandas doctor and head there asap...the faster you kick it, the better off you all will be.
Feel free to message me.

amother

Firebrick

Wed, Oct 09 2024, 11:31 am

amother Almond wrote:

My pediatrician doesn’t like when we go to urgent care bec they don’t get the full picture. If you keep going to the dr they can see all the meds in his chart and help you plan a course of action.

I agree with this. My young son has a history of pandas with psychotic symptoms related to strep (suicidal thoughts, irrational incapacitating fears and anxieties ) I do not go to urgent care for throat cultures as they would not take his history into account and prescribe amoxil for 10 days which is useless . I only go to his pediatrician who has a documented history and will prescribe a stronger antibiotics for 10 days and zithromax for a minimum of 30 days followed by a very slow taper.

edited to add: Motrin 10 ml 2x a day for 3-5 days also helps with the brain inflammation to calm things down till the meds kick in.

amother

Peach ↓

Wed, Oct 09 2024, 11:46 am

Hope all the pandas deniers are reading this thread

No more amox for him

Join the pandas group, pm that ima

This is Dr Shulman origonal pandas protocol
https://docs.google.com/docume.....=true

Ps you caught it VERY QUICK and were very aware!!!! Some people don't realize for months or years!

amother

Magnolia

Wed, Oct 09 2024, 1:02 pm

I had this exact thing with my son. Time to go to an ENT, though they don't remove the tonsils unless it's massively enlarged, on a scale of 0-4 it needs to be a 4 or there needs to be at least 8 times strep over a year. My son has enlarged tonsils that was a grade 3 and he got 8 times meds over the span of 6 months. We finally removed his tonsils and all his other issues went away. He's so normal now. He had so many mishigasin and sensory issues. Strep is a beast for sure!
Go to an ENT.