Pandas and night terrors and night walking

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amother

Thu, Mar 04 2021, 9:57 pm

My sons been treated for over a year on antibiotics. The night terrors had mostly gone away, he is down to only a small dose of one antibiotics. I have seen lately night terrors coming back. The last few nights he wakes an hour or so after falling asleep and walks my halls shaking and looking like he’s scared. Can anyone recommend a neurologist that I won’t pay a fortune to, to help me make sure everything’s ok with him. I know pandas can cause night terrors but putting him back on his antibiotics for this doesn’t make sense.

amother

Pearl

Thu, Mar 04 2021, 10:18 pm

try pessy figa she helped me trendously with pandas bh

amother

Cobalt

Fri, Mar 05 2021, 8:53 am

The sleep disturbances are clearly related to pandas/brain inflammation/systemic inflammation. You can try addressing it in ways other than antibiotics, but if he has an active infection going on you first need to put the fire out.

amother

Cobalt

Fri, Mar 05 2021, 8:53 am

amother [ Pearl ] wrote:

try pessy figa she helped me trendously with pandas bh

What kind of approach does she use and where is she located?

amother

Fri, Mar 05 2021, 9:59 am

I don’t think he has any active infection and he’s been treated for over a year already. I just want him off all the antibiotics. He’s left with some behavioral outbursts/ not in school bh but at home, which I can deal with but the night terrors worry me. Like I feel like something going on in his brain and if he’s off antibiotics and it comes back what do I do now. Can anyone recommend a good neurologist that is pandas literate , what type of doctor is the one someone posted? And did your child have night terrors and disturbances sleeping

amother

Cobalt

Fri, Mar 05 2021, 10:32 am

amother [ OP ] wrote:

If he’s still having symptoms that means he still has brain inflammation. That’s what’s going on in his brain. I don’t know where you’re located but dr Trifilletti in Ramsey NJ is a pandas literate neurologist. If I were you though, I’d be looking for someone a little more integrative or functional. Because antibiotics alone are not going to cure this, and neurologists even if they are believers won’t have much more to offer you other than psych meds.

amother

Fri, Mar 05 2021, 10:46 am

Thanks for responding . I live in Brooklyn areA. What type of doc would be more integrative or more the right person to go to?

amother

Cobalt

Fri, Mar 05 2021, 11:12 am

amother [ OP ] wrote:

Thanks for responding . I live in Brooklyn areA. What type of doc would be more integrative or more the right person to go to?

Look up Dr. Michael Gabriel in bklyn. https://www.egiawellness.com/p......html

amother

Sun, Mar 07 2021, 8:04 pm

Thanks for your response. Have you used dr Gabriel and seen positive change?

amother

Pewter

Sun, Mar 07 2021, 8:33 pm

I don’t have anything helpful to add, but just wanted to send you love. We’ve been through Pandas with my son and it’s soooo difficult. Hope it gets resolved soon.

amother

Sun, Mar 07 2021, 8:50 pm

Thank you so much pewter, that means a lot ! I have more than one panda , nit as bad as they used to be but not healed yet and still dealing with a lot, so I just need more guidance which is hard to find

amother

Olive

Mon, Mar 08 2021, 1:22 am

amother [ Pearl ] wrote:

try pessy figa she helped me trendously with pandas bh

Can you provide more info about her?

Jewishmom8

Mon, Mar 08 2021, 1:25 am

We did antibiotics lots of vitamins but also sent him to a really good child psychologist.
That helped a lot.

amother

Beige

Mon, Mar 08 2021, 1:31 am

I dont know much about pandas so forgive me if this is not what you want to hear. My daughter has had night terrors for several years. They are becoming less frequent as she gets older. I used to have them too as a kid and I outgrew them. According to my pediatrician it's normal.

amother

Mon, Mar 08 2021, 6:30 am

Thanks so much. My child had night terrors at around 3 years old and my doctor told me that was normal . But then at around 6 they started again and my doctor said at that age it isn’t usually the normal age to have them. My child had a lot of other behaviors that is why let us to a pandas diagnosis and I’m so grateful that Hashem sent me a shaliach to diagnos that. I look back and see that my child’s pandas had started around three with the night terrors but I had no idea then.

amother

Cobalt

Mon, Mar 08 2021, 9:58 am

amother [ OP ] wrote:

Thanks for your response. Have you used dr Gabriel and seen positive change?

Yes, he was helpful. He ran a lot of bloodwork, stool testing and heavy metal testing. We got an individualized protocol to address all the infections we found, improve methylation, heal the gut. We saw a big improvement in symptoms.

Another option if you suspect Lyme and co is to see dr Visconti in SI. He takes insurance.

amother

Mon, Mar 08 2021, 10:40 am

Thank you for your reply. Does he take any insurance ?

I went to doctor in williamsburg and he did Lyme tests and all and we don’t suspect that

FranticFrummie

Mon, Mar 08 2021, 10:51 am

If this is brain inflammation, give a dose of Tylenol or Naproxyn before bed. If the symptoms improve, then there is definitely something going on in there that still needs to be treated.

I understand wanting to get off of the antibiotics after a year, but systemic strep is a stubborn thing.

Has your child had his tonsils and adenoids out? When DD got hers out, she was a new child within 36 hours. The change was stunning.

She'd had non stop strep for over a year, missed half of kindergarten on and off, and we were running out of options. We were fighting all the time, everything was a power struggle, and there were almost daily meltdowns.

Once the tonsils came out, she was like pure sunshine, all love and happiness.

amother

Mon, Mar 08 2021, 11:02 am

What’s weird is that he hasn’t had constant strep, he’s had few times a year, but his asp and AntiDna was really high, plus his behaviors were crazy and some other things, so that’s why we treated . No one mentioned anything about the tonsils. So hard to know what to do. I’ve been to ENT and pandas specialist ...

amother

Cobalt

Mon, Mar 08 2021, 12:19 pm

amother [ OP ] wrote:

Thank you for your reply. Does he take any insurance ?

I went to doctor in williamsburg and he did Lyme tests and all and we don’t suspect that

No he doesn’t.

There is a dr Michael Elice who is also integrative for pandas, he’s in LI and he takes some insurances.

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