I'm not handling my son's strep effectively

amother

↑ Canary ↓

Wed, Oct 09 2024, 12:35 pm

amother OP wrote:

You are all so kind.

The imamother community is such a lifeline.

I'm reading everything, absorbing, and figuring out how yo go forward.

I'm in Monsey. Can anyone recommend a pandas specialist please?

Dr. Alain Mass. NP Naomi Indich.

amother

↑ OP ↓

Wed, Oct 09 2024, 12:52 pm

GiGichai wrote:

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.

Intersting. What is the link between Lyme and strep?

And thanks, we just stocked up on motrin

amother

Lotus ↓

Wed, Oct 09 2024, 1:34 pm

UQT wrote:

Also small tip - discard his current toothbrush after he’s done medication.

Was about to post something similar - when my kids were little we had a round where we had no luck getting rid of strep in the house. Started off with multiple kids having it, went back for a recheck after they finished the meds, some still had, later others did (as in, they were catching it again) - it was a ridiculous merry go round that lasted for a month. The last round of antibiotics the doctor said to dump all the toothbrushes and washcloths (right away - he didn't say to wait till after the meds were done) - and that seems to be what finally cleared it out. I'm guessing we were recontaminating the kids through their toothbrushes/washcloths as we went.

Also, I agree with those who said try a stronger antibiotic - for some of mine amoxicillin works fine, one of mine though consistently couldn't get rid of strep on the first go around and we had to then give him a second (stronger) round of antibiotics. Eventually the pediatrician just declared that that kid got started on the stronger meds right from the start - the regular ones weren't working for him, so it made a lot of sense to me. (I think the stronger one was augmentan but don't hold me to that).

I am so sorry you and your son are having such a hard time right now. Don't worry - you are being a great mom, you are looking out for your little one and IM"H things will be better soon. Hug

marineparkmom ↓

Wed, Oct 09 2024, 1:38 pm

The rapid strep test is not as accurate as the overnight. So if you recently had antibiotics for strep it’s best to do an overnight. Also when this happened to my son the doctor gave him a stronger antibiotic ( not amoxicillin) I think it was doxycycline. Definitely go back to your pediatrician (not urgent care) and discuss.

amother

↑ Lotus

Wed, Oct 09 2024, 1:39 pm

BTW, OP, have you checked the other people in your house (including you) for strep? It could be he's getting better but then catching it back from someone else in the house who's sick (or is contagious without having much in the way of symptoms). What

amother

↑ OP ↓

Wed, Oct 09 2024, 2:03 pm

amother Lotus wrote:

So yes. The way we caught this one, is we checked out two other kids.

All 3 positive.

I sent him along as an afterthought. Unlike his brothers, his symptoms are ongoing, nothing new.

amother

Steelblue

Wed, Oct 09 2024, 7:40 pm

If your son is suicidal, this is an emergency. As other posters said:

1. Get in to a PANDAS specialist asap- NP Naomi Indich is in Fairlawn, NJ and she is tops and very caring
2. Do not go back to urgent care for any treatment at all. This is not an urgent care type of problem
3. There are many things that can help, such as Motrin, probiotics for strep etc. but #1 is to get him under the care of a PANDAS specialist.

Hatzlacha!

amother

↑ OP ↓

Thu, Oct 10 2024, 6:03 pm

I'm sitting near my son, trying to lull him to sleep. I'm beside myself. Trembling.

I'm not being dramatic: this child was my sunshine boy. He had (has! Buried somewhere underneath!) such a refined, sweet, sensitive disposition. He was so mature for his years, so articulate.

He is trying to resist sleep now. He is muttering obscenities at me (you're an animal. You stink.. etc etc) . It's startling- what happened?!

He also explained that if I could see into his brain, I would understand why he needs to not wake up in the morning. He cannot bear being alive.

I'm drained from today. Scared of tomorrow.

I'm so sad and overwhelmed Crying

↑ GiGichai ↓

Thu, Oct 10 2024, 6:20 pm

Hugs to you. Please try to give him.motrin now, even if it has dye...and try to get in asap to Naomi Indich...its super sad how this disease robs our 7 year olds of their happiness...
(The connection between strep and Lyme is that if your body is fighting underlying lyme infection, it will lower immune system allowing strep to reoccur...
Also swab mom and dad and baby if you have one for strep...
Anyone with strep can be passing it along or causing a flareup for your son...

amother

↑ OP ↓

Thu, Oct 10 2024, 6:27 pm

Thank you gigichai. You are spreading such important awareness on this forum.

My toddler does have strep. And ds7 tested positive too. I sent him along to be checked only as an afterthought. I never knew that a child can get reinfected with strep while taking antibiotics!

I'm in touch with Naomi indich. Her fee is prohibitive for us ($1000 for consult, plus substantial fees further down.)
We're torn. Trying to decide whether to do research on my own and figure it out. I did order one book that was recommended here, for starters.

And we started him on dye free motrin today.

Thank you, profoundly, for your support.

amother

Amaryllis ↓

Thu, Oct 10 2024, 6:48 pm

amother OP wrote:

If you can't afford, call bikur choilem to help you pay for the visit.

You can also contact PA lebowitz. Hes good at finding underlying issues. He does extensive testing. He's very good.

This is for his private practice.

He also works at Williamsburg pediatrics. They are located on the 59 in the hamaspik strip.

Ivd btdt. Were bh on the other side, and soon you will be too. Hang tight. You are doing amazing!

I will be keeping you in mind this yom tov.

guest2

Thu, Oct 10 2024, 7:09 pm

Op I am with you. Clindamycin in addition to Rifampin worked when we couldn't get rid of my daughters strep. Surprisingly enough my son is the one with pandas even though it was my daughter that tested positive 9 times in 9 months. For my son am doing Sandoz brand of I don't remember which one, and doctor talking about adding on clindamycin since he's on antibiotics for close to 2 months already

amother

↑ Amaryllis

Thu, Oct 10 2024, 7:09 pm

amother OP wrote:

Thank you amaryllis for your practical help.

Is PA lebowitz substantially cheaper?

Yes. But not all testing is covered by insurance.

You can also start out with seeing him at Dr. Zeigelbaums office/Williamsburg pediatrics.

He won't be able to give you such individualized care as in if you go private. But I'd start there.

He unfortunately has some very personal experiences with autoimmune/hidden infections so he really truly gets it.