Pandas and night terrors and night walking

amother

Cobalt

Mon, Mar 08 2021, 12:22 pm

amother [ OP ] wrote:

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 ...

Kids with pandas don’t necessarily show typical sick symptoms so he may have had it more often without you knowing. The only symptoms we have here are behavioral, my kids don’t even swab positive anymore. Also, because pandas is a post infectious syndrome, it can go on for years following even a single infection. There’s also chronic subclinical infections, just low level, or strep hiding elsewhere in the body. Or, it may be another infection entirely that’s causing the brain inflammation.

amother

Cobalt

Mon, Mar 08 2021, 12:24 pm

FranticFrummie wrote:

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.

Naproxen yes, Tylenol no. It depletes glutathione, most pandas kids alread have methylation issues. Ibuprophen is fine though, and a lot of kids do well with an anti histamine.

FranticFrummie

Mon, Mar 08 2021, 12:24 pm

amother [ OP ] wrote:

You need to do a Tylenol challenge and see if things improve.

You MUST see a pediatric ENT and have those tonsils examined. These days, the protocol for taking out tonsils is that they only remove them if there is inflammation that is drug resistant, or if there is a history of chronic strep. DD had both.

amother

Cobalt

Mon, Mar 08 2021, 12:29 pm

FranticFrummie wrote:

All the pandas experts recommend ibuprophen for brain inflammation, not Tylenol.

amother

Mon, Mar 08 2021, 1:07 pm

Thank you. Did you feel overwhelmed by the different ways he wanted to approach the healing. Like people write about vitamins and detox... it’s hard enough to get my kid to eat his regular food or take the antibiotics I can’t imagine getting him to take herbs or vitamins.... I fight with him to take vitamin d and he refuse

amother

Cobalt

Mon, Mar 08 2021, 1:32 pm

amother [ OP ] wrote:

Yes, it was very overwhelming. Extremely. It still is. But it does get easier the more they heal.

amother

Mon, Mar 08 2021, 2:49 pm

What are somethings that you haveto do... I’m just nervous going into it spending a load of money and they not sure if I can do it or if my child will even cooperate

amother

Babyblue

Mon, Mar 08 2021, 3:07 pm

amother [ Cobalt ] wrote:

So how do you know it’s the strep?

amother

Cobalt

Mon, Mar 08 2021, 3:20 pm

amother [ Babyblue ] wrote:

So how do you know it’s the strep?

They have very high strep titers and swollen tonsils. And behaviors go away with antibiotics.

amother

Cobalt

Mon, Mar 08 2021, 3:21 pm

amother [ OP ] wrote:

What are somethings that you haveto do... I’m just nervous going into it spending a load of money and they not sure if I can do it or if my child will even cooperate

They usually want you to try diet modification, and it does involve supplements.

amother

Babyblue

Mon, Mar 08 2021, 5:08 pm

amother [ Cobalt ] wrote:

They have very high strep titers and swollen tonsils. And behaviors go away with antibiotics.

But high strep titers are only a sign of past infection, no?
Asking because I have a child that I feel strep hides behind tonsils

amother

Cobalt

Mon, Mar 08 2021, 5:22 pm

amother [ Babyblue ] wrote:

But high strep titers are only a sign of past infection, no?
Asking because I have a child that I feel strep hides behind tonsils

It could also be an indication of chronic subclinical subacute infection. Especially if they are significantly higher than the normal range. Yes, it’s very possible your child has strep hiding in cysts or biofilm inside their tonsils.

amother

Babyblue

Mon, Mar 08 2021, 5:52 pm

amother [ Cobalt ] wrote:

Mind expounding on this?
Tnx

amother

Beige

Mon, Mar 08 2021, 6:48 pm

amother [ OP ] wrote:

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.

Interesting re the night terrors. Are you sure that they are because of pandas? I'm asking because my daughter only started having night terrors around age 5 or 6. According to my pediatrician this is normal. She is 9 now and still has them but not as frequently. They are definitely more frequent when she is tired. I had them too and outgrew them around age 9 or so.

amother

Mon, Mar 08 2021, 9:26 pm

Pandas isn’t one symptom, so if my child only had night terrors maybe it would’ve been normal . But it came along with a lot of other behaviors that were symptoms for pandas. My child didn’t just have night terrors, his sleep was so disturbed he would would wake many times a night and literally kick and move around all night long. He had terrible rages , it would be uncontrollable , where the slightest thing would tick him off.he would scream and yell like crazy. He would throw stuff, turn over my chairs , kick, punch , spit , yell terrible names at us. My sweet child just changed .everything was a fight , taking a shower, getting dressed, going to school, cutting nails.... There were other symptoms too...

amother

Cobalt

Mon, Mar 08 2021, 9:32 pm

amother [ Babyblue ] wrote:

Mind expounding on this?
Tnx

Most drs say that a high strep titer is an indication of a recent past exposure or infection. Meaning, the body recently fought it off and is still showing titers for it. Another school of thought is that if the body consistently has elevated strep titers, it may be a sign that it is consistently fighting a low level infection. The infection can be anywhere, it’s very common for strep to hide out inside tonsils, they form cysts and webs called biofilms to help them evade the immune system and evade antibiotics, the immune system keeps mounting a response in an attempt to fight it off but isn’t very effective, hence the consistently elevated titers. That’s why it’s possible to have a low level strep infection without it showing up on a culture. It’s deep Inside the tonsils. In pandas, at some point, the immune system gets fatigued and confused and start making antibodies towards the basal ganglia as well.