The Official Neuroinflammation Thread

amother

Mon, Jul 12 2021, 7:32 pm

amother [ Papayawhip ] wrote:

Weve seen pediatricians who were moderately helpful, but most didn’t really get it on a deeper level. We did see one pediatrician who worked privately at an integrative practice once a week who specialized in this, who was more helpful.
There are many natural things to do on your own, the ones we found most helpful were
High dose magnesium
Methylated b vitamins
Magnesium and epsom salt footsoaks
Stephen Buhners herbal pandas protocol
Other Buhner protocols for other chronic infections like lyme and co, viruses
A special form of vit b1 called ttfd
Neurotransmitter support like Gaba, l theanine, 5htp
Check out the bioray kids line, it’s excellent
Read everything you can get your hands in on this topic
Diet!! At minimum gluten and dairy free
Not technically natural but still better than psych meds, Motrin, naproxen, anti histamines
You can order your own functional tests like stool, OAT, neurotransmitter testing, thyroid testing
Craniosacral doesn’t have to break the bank
Get on Facebook groups, more info there than any single dr on the planet

Mold is a huge topic in this area, but I happen to know very little about it. Maybe others can fill me in.

Anyone else overwhelmed? Time out

amother

Buttercup

Tue, Jul 13 2021, 12:38 am

I feel like with everything your saying OP, I’m not getting much closer than where I started. I do have a lot of questions, but I feel like when posters say AMA, it isn’t really accurate.

I read through your entire list. Problem is, people can’t honestly give good referrals because it seems like many are afraid to be outed here. Or maybe it’s something else. Like against the forum rules, etc.

I’ve been asking for names and recommendations of people who treat pandas with craniosacral or other things and I even opened a thread where I specifically asked about someone for this. Hardly got any responses. The reason you were groping in the dark is the same reason that everyone else is. It seems like people are willing to help but only superficially. Whereas people will give you very direct names of medications to take or treatments to pursue for other sicknesses. Why is this so?

I’m thinking when I get to the root of this, I would love to open an organization like the others out there. To guide, advise, help people like me who are running around in circles; while their child/children (along with their parents) are going through torture day and night.

In fact, I’m surprised to hear so many mothers here admit to struggling with this. I don’t see you in my world, where are you hiding? Lol. When I walk out my door and meet hundreds of parents/kids, I feel like nobody is living through this. People throw around the word PANDAS a lot, but I don’t see too many with the issues my kids are having. I feel like I’m back in the days where having a child with Down syndrome was taboo and they were locked up, etc.

OP and everyone else, thank you for opening this thread. I’m wondering if we can sort of combine all threads into one and come up with a clear path for someone who’s starting to attempt healing.
Like, I’m not even sure who the posters are and I don’t know if I’m asking the same questions to the same/different posters. Maybe you can name yourself according to your other posts, like I’m poster A, B, C, D, etc. for clarity purposes. Maybe something good can come out of this.

Signed…. An exhausted mother who had a tough day with a suffering child and feels guilty that she’s not doing enough to help the situation…

Rant over.

amother

Papayawhip

Tue, Jul 13 2021, 6:55 am

amother [ Buttercup ] wrote:

So sorry you’re going through this and feel so lost!. It’s a beast of a disorder, and pretty much the blind leading the blind all over. I don’t talk much about this in real life to protect my child’s dignity, they lead a pretty regular life on the outside and manage to hide a lot of their symptoms in public, so it’s a very lonely, private struggle, but I find so much understanding and support on the various Facebook groups I’m part of. I’m happy to answer any questions with as many details as I can provide, if you just ask! Keep in mind that every child is individual and what worked for us won’t necessarily work for you.

amother

Chestnut

Tue, Jul 13 2021, 7:09 am

I totally get that for many children there is an underlying inflammation that needs to be addressed.
But why are you always so sure that that’s the only solution/ underlying issue/ reason for behavior?

Years ago I posted here about my sons challenging asd like behavior (plus!) and got this response. That there must be underlying inflammation and unless I treat that...He was in floortime therapy (and other) and I was seeing progress so I continued along that road. In addition, I put myself into therapy which I feel was a big boost to him and the rest of my family.

He’s bh doing so wonderfully now- he’s truly awesome!

So I do believe that at times there is pandas present but to those that see this across the board in every child seems a bit black and white thinking.

amother

Mintcream

Tue, Jul 13 2021, 7:11 am

amother [ Buttercup ] wrote:

I feel like I’ve said this before but I’ll say it again. It’s not because anyone’s trying to keep information from you, or because it’s taboo like ds once was.
It’s because no one completely understands it, and no one thing is the cure for this or there wouldn’t be so many families suffering.
It’s a looooong tough expensive ride until you figure out what works for this specific child and even then, they won’t be 100% cured. if they’re exposed to their trigger you’re back at square one. Plus if you do heal their brain completely by some magic trick you need to then retrain the brain with lots and lots of therapy and other things.
I have a list of names of doctors who I can try but all of them cost a lot of money and currently I’m not sure who the right shaliach is. My child is also in a lot of therapy plus we’re doing antibiotics, another medication and 2 other supplements. I’m a little bit hesitant to name the medications for safety reasons but I can tell you which pediatrician we went to if that helps you. We’re in Brooklyn.

amother

Mintcream

Tue, Jul 13 2021, 7:12 am

amother [ Chestnut ] wrote:

I agree with you.

amother

Papayawhip

Tue, Jul 13 2021, 7:22 am

amother [ Chestnut ] wrote:

Its great that you’re child responded well to therapy! Many parents start exploring these options when they’ve exhausted all others and they are still drowning. Also, the scientific research shows that most kids with asd have a host of comorbid medical issues, some of which are directly contributing to their child’s symptoms, and they don’t want to leave that untreated.

amother

Chestnut

Tue, Jul 13 2021, 7:36 am

amother [ Papayawhip ] wrote:

1,000 percent. And I put a dif child on meds too!

What this child needed was help in the relational realm and for myself to learn how to be more present and parent differently and learn regulation skills and understand my triggers. Different approaches for each unique child

amother

Ivory

Tue, Jul 13 2021, 9:38 am

amother [ Mintcream ] wrote:

Pls post pediatrician in Brooklyn. Thank you

amother

Papayawhip

Tue, Jul 13 2021, 10:25 am

amother [ Ivory ] wrote:

Extremely. And believe it or not I’ve done everything on that list including dairy and gluten free which was murder for my child and did not see any major difference. I’m still giving the vitamins (chewable- cannot get tablets or capsules down and he refuses to open capsules)
I’m not sold on this yet because I haven’t seen success. And like I’ve said before - I did work with a practitioner (more then one) and did all the testing that she listed here plus more and the lifestyle is prohibitive for a child if you’re going to do everything that they recommend.

Can you say more about what symptoms your child is experiencing, what testing you’ve done, what kind of practitioners you worked with and what you’ve tried so far?