new to PANDAS/tick bourne infections -advice -best practices

[sarojane]

Hi, our 8 year old daughter recently started having PANDAS symptoms after 3 bouts of illness over 4 months all negative throat culture but treated with amoxycilin and then cefdinir with diagnosis of strep.

The last two bouts were most severe and many symptoms of rheumatic fever.

 

1.5 years ago she was hospitalized with meningitis/encephalitis. 105 cyclical feverthat abated 24 hours after doxycylin, aphasia,bells palsy.

It took her a year to fully recover from the brain inflammation and so a lot of these pandas symptoms are similar to her lingering symptoms she recovered from 6 months ago.

I have recently put her on oregano oil, black seed oil, serrapeptase for biofilm, 50 billion probiotics, juat started berberine. Using vitamin c, D and b complex in smaller doses. Boswellia (radoqol) for brain swelling.

 

Interested in homeopathy, but wanted other people's experiences with Dr. Fontaine before $$$.

 

We will probably homeschool next year to limit her exposure.

 

Please any and all advice wanted!

Her symptoms are -

Separation anxiety

Loss of words when frustrated or angered

Mood swings

Frequent urination

Obsessive thoughts especially at bedtime

Surge of energy at bedtime.

Decline in math skills

 

We love our doc, but she is out of the country, and we cannot get in again with her till June.

[Chemar]

Hi

I am bumping your first post up so others will see it and respond

[emst]

We have had been where you are now and still have similar issues on and off better managed now.

Who is your MD?

You should be able to reach them in crisis by email or phone,

Symptoms of frequent urination are vexing, we have this problem. Should be temporary, You can try UvaUrsi. Dont go past 2 weeks.

Ashwagandha should address or help Anxiety increase or re add the dose 3-4 x per day *might help* obsessive thoughts - might not

Inositol helps ocd - possibly need high dose inositol, get a pure brand

Math comes back when the other things go away

Continue to try to reach your doc.

[sarojane]

Thanks for the advice. We were using ut vibrance that contains uva ursi and d mannose. The night time peeing gave us a rest last night.

 

My dd had really extrme emotional troubles yesterday and this morning non verbal grunting and crying, this stuff is so weird! Reading up on it and seems that's caused by die-off, yeast overgrowth. We backed off the oregano oil a little and kept her home and went to the beach to de stress and ground a little. Gave her a b complex which has inositol, that might of helped, also started using inner-eco probiotics.

My husband wants to keep her out of school the rest of the year and do school work from home because she is in a very small public Montessori school where everyone is touching everything. There has been a virulent strain of strep in a different classroom that they have little contact with. Is this tiny bit of exposure enough to cause a flare?

I understand my husband's wanting to keep her home, but I know she will be heartbroken and stressed out about this.

 

Opinions?

[pr40]

just on homeschooling: we had similar symptoms and did not homeschool. 2nd grade was tough but she had to deal with it. and she managed. she was on long term abx to prevent strep reinfection.

one thing: the point of prophylactic abx (combo, zytro and amox) is to let kids go to school.

abx do help in other ways, too.

 

a year later, we switched to Montessori school to make her life more manageable. you are already there.

since you asked for opinions, mine is yes school on combo abx.

 

one thing: you seem to know much about pandas, but don't mention diet. that's another thing you can try to lower inflammation. we went both gluten and dairy free for 3 years.

[sarojane]

We have been gf for 4 years and just gave up all dairy but goat kefir.

 

We want to do as little abx as possible, I have read that abx could cause bacteria to amp up biofilm and hide from eradication. She could have lyme and coinfections as well. These also hide in biofilm. We haven't tested since hospitalization because she freaks out and it's impossible to get without sedation or restraint. Hopefully going to start therapy soon so we can do this.

 

Excited to get the rock rose tea I ordered from Germany to repel and shred biofilm.

[sarojane]

I also am a big believer in nebulize nascent iodine. We did that this afternoon and she perked right up and seems like her old self for now.

[pr40]

We have been gf for 4 years and just gave up all dairy but goat kefir.

 

We want to do as little abx as possible, I have read that abx could cause bacteria to amp up biofilm and hide from eradication. She could have lyme and coinfections as well. These also hide in biofilm. We haven't tested since hospitalization because she freaks out and it's impossible to get without sedation or restraint. Hopefully going to start therapy soon so we can do this.

 

Excited to get the rock rose tea I ordered from Germany to repel and shred biofilm.

you are not saying that you are not going to do long term abx bc lyme bacteria can hide in biofilms?

adding monocyclin might be a solution

but -- I am here out of my depth -- how do you know your child has lyme? your original post does not say anything about it.

if someone is taking goat yogurt, he/she is not dairy free. goat for many people is just the same as cow. sheep's milk tends to be the better toleraded alternative.

I mean to give you some ideas but do find it difficult to understand what it is that you think your child has.

[HopeinHIM]

Hi,

You seem to be doing the best you can. Keep educating yourself and your husband. Don't let him fall behind or it can be a problem. caregivers need to stay connected. With that said, I have a DS11 who exhibits similar symptoms. After many months, we found Bartinella and Babesia. He is finally calming down with Rifampin. We too are organic natural parents and abhor anti B's but many have found herbals and anti B combos work the best. My advice, keep her in school at all costs. This can be a long journey and once they start a life with NO school they many times DO NOT want to go back. We took our son out in 4th grade at the end of the year and he has yet to return 1 1/2 yrs later You are correct the wrong anti B can cause issues for lymes. She must have the correct type (minocycline for example is good for Bart bc of the ability to cross Blood Brain Barrier)We use Stephan Buhner herbs as well. We go one at a time very very slowly. It is painful to watch I know. Just try and stay positive for her and let her know that she WILL get better. Much blessings!!

[sarojane]

Thanks Hope.

 

It's really frustrating with the blood draw issue, she had an IV in her for two weeks at hospital and they kept having to put in new ones, she could not communicate or even feed herself because of the encephalitis and she would just scream and scream.

 

She doesn't remember much of the hospital but she has this needle phobia now.

 

We think it was tick bourne (they tested for around 20 things -inconclusive) Because we were in the woods of NC for a week the week before, and the symptoms fit Powassan virus to a T, her ped doctor thought it was Rickettsia or Recurring tick borne fever. She is well educated in Lyme, but because of this blood test issue, not much can be treated yet.

 

My DD seems fine today. I did the nebulizer with 2 drops nascent iodine and gave her some candex enzymes and seems normal. Thank god, goddess, whoever! Fingers crossed no more major upticks.

Small birthday party today, we will do iodine treatment after to ward off invaders. I have a child size mask, and the mist goes into the sinuses as well as the mouth throat and lungs. Maybe this is a magic bullet for us!

[HopeinHIM]

 

Hi

One more thing. Pierre Fontaine is a Homeopath not a Doctor. We take our eldest to him. Nice man but very, very expensive. We have had little success so far so we will only be able stay with him another month or so. I believe homeopathy can be a huge piece of the puzzle for sure but it needs to be reasonable in price bc you will be revisiting often. For us anyway!! We were able to Skype with Pierre and that does help!