PANDAS PARENTS | Imamother

amother

Puce

Wed, Jan 24 2024, 9:09 am

After years of trying everything, what helped was energy healing. The healer gave him herbs and vitamins that he had to take a certain amount of days/months and recommended another natural based person who will help this child. I used to laugh at energy healing. I now highly recommend it for things that conventional medicine doesn't know enough about. It seems every child with pandas needs different things in order to heal. The energy healer tunes I to the childs body and directs specifically for this child.

amother

Skyblue

Wed, Jan 24 2024, 9:15 am

amother Cappuccino wrote:

Dd also was just diagnosed with pandas and we started abx. How does it work? Once abx works and she starts being herself again but if she gets strep we’ll be starting over?
I’m not sure how much longer we can survive even like this.

Every kid is different. If you had a true sudden onset and caught it early and she responds to antibiotics, it's possible that just a 30 day or 3 month course will be enough to get you into remission.

I highly recommend adding in motrin and benadryl now to help take down inflammation asap.

Some kids will relapse if they come off antibiotics and need a really long course, like a year or more.

Most kids will need other layers of healing in order to really put this beast to rest. Otherwise, yes, they will flare with every illness and regress.

Even if you are truly on the path to recovery, expect a sawtooth pattern. Like 2 steps forward, one step back. But eventually you will get there.

I'm sorry you are going through this 😔

amother

Wed, Jan 24 2024, 10:08 am

amother Daffodil wrote:

Homeopathy
Vitamins
Herbs
Minerals
Diet changes (clean eating)
Stress management
Motrin
Motrin
More motrin in a flare.
Or aleve
Craniosacral, lymphatic drainage
Bath soaks
Clean up environment - take away as many environmental allergies as possible.
Mold remediation. (We moved before kid was diagnosed. Was possibly the autoimmune trigger)

Good luck.

thanks! was actually waiting for such kind of response. can u elaborate on foot soaks? and vitamins, herbs and minerals? like which ones and what dosage? and diet changes? thanks loads!

cherrylover

Wed, Jan 24 2024, 10:21 am

amother Puce wrote:

Can u share who u used?

amother

Skyblue

Wed, Jan 24 2024, 10:30 am

amother OP wrote:

thanks! was actually waiting for such kind of response. can u elaborate on foot soaks? and vitamins, herbs and minerals? like which ones and what dosage? and diet changes? thanks loads!

I'm not that poster but I can tell you what we did.

Gluten and dairy free diet. Low sugar, whole foods. Avoid dyes and msg as much as possible.

Foot soaks: 1 cup Epsom salt, 1 cup magnesium flakes in a basin with warm water to cover ankles. Soak for 20-30 minutes 3 times a week

Herbs: Chinese skullcap, kudzu, cryptolepis is a great protocol for pandas that addresses both the strep and the brain inflammation. We get these from woodland essence. Work your way up slowly, aim for about 30 drops of each.

Minerals: Magnesium is the most important. Taurate, orotate, threonate, malate are the best forms. Aim for 5mg per lb of body weight. Smidge morning mag is great, it's a combo of a few good forms. In addition, trace minerals added to water are helpful. Concentrace or eidon are good brands.

Supplements: there are so many that can be helpful. Methylated b complex is foundational, I like thorne brand, but be careful with methyls it makes some kids more agitated. Introduce very slowly.

Some kids do well with turmeric for inflammation.

A good probiotic can help with gut health but avoid strep strains, even beneficial ones. Can try blissk12 oral probiotic it's supposed to help with recurring strep

For anxiety, ocd and agitation, gaba, 5htp, l theanine, NAC, glutathione, Inositol are the go to's.

For homeopathy we use resilience naturopathic, they're virtual and specialize in pandas and pans. Not cheap but good gains in our case.

Ldn (low dose naltrexone) is worth trying, it's an immune modulator. We use ldndirect.com to get a prescription.

There's so much more. I found these books really helpful https://www.amazon.com/Demysti.....r=8-2

https://www.amazon.com/Light-D.....r=8-2

amother

Wed, Jan 24 2024, 11:00 am

amother Skyblue wrote:

wow thanks loads!! can the foot soaks be a bath instead? my son wouldn't cooperate with soaks but would enjoy playing in the bath...
gluten and dairy we did for a while but my son is an extreme picky eater and was very very hard. my question is , does removing gluten and dairy for a long stretch of time reduce current inflammation like motrin or it actually heals whats wrong inside? like debating if its worth going through this path... and how about reduced gluten and dairy, worth nothing?
probiotic I use maxi oral pro bliss. found it great for the recurring strept, wondering if it does anything to heal too?

amother

Skyblue

Wed, Jan 24 2024, 11:43 am

amother OP wrote:

Some people do baths instead, personally I feel it's too diluted to really get much benefit unless you're using like an entire bag of each per bath which gets really pricey really fast... I set my kids up with an interesting activity for footsoaks, or we play a game or do audiobooks. If you're desperate you can choose to do screetime... my kids ended up enjoying footsoaks even when they were at their most oppositional/hyperactive. When I was consistent I found it really really helped them relax and regulate.

Diet is a tough one, btdt. In theory it both decreases inflammation and also heals the gut which is a big piece in why the autoimmunity happens in the first place. I know how hard it can be with our food culture being what it is... no easy answers. You can do digestive enzymes with meals, this will help decrease immune reactivity to foods. A humic fulvic and fermented foods can help with gut health as well.

If you found a probiotic that helps prevent recurring strep I say keep going. Preventing acute strep will prevent flares which are setbacks to healing. It also is supposed to help crowd out pathogenic strep and repopulate with beneficial strep which is an even deeper layer of healing. You can do another multi strain probiotic in addition to target gut health.

amother

Wed, Jan 24 2024, 11:59 am

amother Skyblue wrote:

wow, thanks! sorry for my poor knowledge, what is digestive enzymes? where can I buy and how much to use? I understand from your post that if he is yes eating something I would love to cut out, he should at least eat it together with digestive enzymes, am I understanding correctly? and would u know of another multi strain probiotic to target gut health?

amother

Daffodil

Wed, Jan 24 2024, 1:32 pm

amother Skyblue wrote:

Op, listen to her.

But start with one thing. It's a lot to take in at once. And remember, be kind to yourself. You will get there one day.

I'd like to add one thing, once my kid was doing better. I gave my kid "agape" from the company awaken. I gave half the recommended adult dose. But I started full dose and she had a bad severe reaction.
I stopped it and after a few months I started with 1/4 of her dose for a week or 2 then 1/2 her dose for another week or 2. Then 3/4.... until I got to her dosage.

It was AMAZING.

amother

Daffodil

Wed, Jan 24 2024, 1:37 pm

amother Cappuccino wrote:

I have to fight with dd every day to take her meds every day, to eat (her favorite) supper or get dressed: Everything is a huge fight. I can’t imagine even trying to eliminate food group or trying some of these other things. We are feeling so hopeless over here, I feel like I lost my child and was given this new monster

With the food it's like a bad loop.
One of my kids who is lactose and gluten intolerant (not that kid) ONLY wanted to eat wheat pasta and cheese. She was in such physical pain mentally/emotionally a complete basket case. And pasta and cheese. Or cereal and milk was all she wanted.
The tantrums when I took that away... OMGGGG. But after a week. She felt AMAZING! And now a few years later I feel like her body has healed so much, I wanted to reintroduce wheat (im doing all of this with medical guidence) and she absolutely refuses. Unless a person has celiac or some other medical condition, I beleive its important to eat a variety of everything. I'd like for her to be able to tolerate and enjoy wheat treats even if she sticks to a mostly GF diet (like I am) but she doesn't want to. So we started with spelt and bh she's doing ok with it.

Point is, the food might be a big factor in the behaviour and once you stop the offending foods, the behavior might improve.

amother

Rainbow

Wed, Jan 24 2024, 3:48 pm

People have had much success with restricted diets to treat pandas but please be forewarned that eating disorders are common with pandas. If your child's eating is already restricted, health at risk from changed eating habits please be careful using that route as a method to heal
(OUR child needed to be treated with FBT therapy and full therapeutic protocol for eating disorder that was not going away with the pandas treatment,. Weight was so low child's life was at risk. Random pple kept suggesting diet. Wasn't an option for us)

amother

Skyblue

Wed, Jan 24 2024, 5:41 pm

amother Daffodil wrote:

Yes, so often it's the foods these kids restrict to that are the worst for them

amother

Skyblue

Thu, Jan 25 2024, 10:41 pm

amother OP wrote:

I like enzymedica digest gold or digest spectrum, I get it on iherb. Yes, it can help mitigate negative effects from inflammatory foods. Can be taken with every meal.
Garden of life makes a good probiotic. Klaire labs has a good one too. Look for one that has multiple strains and no strep strains

amother

Feverfew

Sun, Feb 11 2024, 9:25 am

Hi,
I have a child with PANDAS. We treated with augmentin for over a year.
Just a question for all the imamothers who are using vitamins/holistic/herbal etc to treat... How do you get your child to take all that stuff?
My dd was on antibiotics for over a year and it was torture to get her to take it twice a day. Not to mention my pediatrician recommended Motrin, probiotics, and antihistamine as well. There was no way my child was going to take all that. And there was no way I could give it to her either.... It would be a full time job and she had to go to school, and I had to go to work, and I have other children. I could not devote that much time or even mental energy to treating this disease!
Just curious how you all do it? How do you get your children to take all that stuff? These lists of remedies sometimes include tens of different things to take. Also to the imamother who does the foot soaks.... How do you get your child to soak for 30 minutes? Honestly, I don't have 30 minutes a day that I can devote to this one child, not to mention that I can't imagine her agreeing to sit with her feet in a tub of water for 30 minutes. MAYBE I could get her to do it once or twice, but there's no way she would do it on a consistent basis.

Please advise.