Need immediate help!!! Is this PANDA flare???

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xh1688
Posts: 10
Joined: Tue Dec 15, 2015 3:03 am

Need immediate help!!! Is this PANDA flare???

Postby xh1688 » Wed Feb 08, 2017 5:09 am

Dear parents,

My 14 yo son started to experience frequently using restroom after I stopped LDN on Dec 22, 2016. Since last week, this issue became worse and worse. He now asked for peep every a few seconds although he actually didn't get it each time. He is very miserable and desperately asks for restroom anywhere he went (grocery store, post office, gas station, his brothers' preschool even pointed to row of houses he saw when I was driving and said he wanted to go "there for restroom".)

The behavior that repeated asking the same questions/ comments also became much more frequently. He has to repeat it every second although I or my husband have responded to him many times. He even stands out of the restroom and asks me "the men's bathroom, mommy" over and over and won't get in the door until I respond to him over and over.
He also walks to my bedroom in the middle of the night and repeats the same questions and won't leave until I wake up and respond to him over and over.

Another issue also became more severe is changing his mind when makes a decision. For example, he usually asked that he wanted to wear his blue shoes after he has put his red shoes on and got in my car and leaving our house. It was about at least 1/2 hour or longer. Now, he changes his mind EVERY SECOND! He says that he is done for water drinking during the bedtime. When I'm going to take his bottle, he says that he wants to drink more water. I then give him the water bottle back, he says he is done after one drink. He again says he wants to more water when I'm trying to take the bottle away....this repeats 10 times until I grab the bottle and leave his room. He is still yelling that he needs more water......He is really out of control and I'm getting crazy with this situation. His teacher also complained that she is unable to handle this.

My DAN! doctor referrals a Lyme expert clinic but there is a long waitlist. I really need immediate help!!!

Anyone has had the similar experience? Is it a sign of PANDA? What is the effective solution for this sudden uncontrollable change?

Any advices/ sharing/ recommendation will be greatly appreciated!!!

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: Need immediate help!!! Is this PANDA flare???

Postby makingitpossible » Wed Feb 08, 2017 7:57 am

Yes sounds very much like PANDAS. I would recommend any strong anti-inflammatories. The tradition approach is antibiotics and steriods. From our experience our daughter doesn't harvest the strep bacteria so antibiotics are worthless. But every time we get the strep notice sent home from school this happens especially the bathroom trips. We have taken her in 3-4 times and she doesn't ever test positive for strep and there is nothing to kill it is just an autoimmune reaction which causes inflammation in her brain.
You can do steriods or natural anti-inflammatories like tumeric.
We are currently doing LDI for this issue and I highly recommend looking into that as well as that will be a permanent solution if successful.
It won't last forever. I would also suggest D-mannose just in case he has some other issue with the peeeing.

Nikkie111
Posts: 351
Joined: Thu Sep 24, 2015 6:26 am

Re: Need immediate help!!! Is this PANDA flare???

Postby Nikkie111 » Sat Feb 11, 2017 5:12 pm

makingitpossible wrote:Yes sounds very much like PANDAS. I would recommend any strong anti-inflammatories. The tradition approach is antibiotics and steriods. From our experience our daughter doesn't harvest the strep bacteria so antibiotics are worthless. But every time we get the strep notice sent home from school this happens especially the bathroom trips. We have taken her in 3-4 times and she doesn't ever test positive for strep and there is nothing to kill it is just an autoimmune reaction which causes inflammation in her brain.
You can do steriods or natural anti-inflammatories like tumeric.
We are currently doing LDI for this issue and I highly recommend looking into that as well as that will be a permanent solution if successful.
It won't last forever. I would also suggest D-mannose just in case he has some other issue with the peeeing.

Hi there - where are you doing LDI? Do you know what the minimum age is? Have you seen any improvements?
Is there a minimum age generally for LDI in US?

Thank you!

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: Need immediate help!!! Is this PANDA flare???

Postby makingitpossible » Sun Feb 12, 2017 8:50 am

Nikkie111 wrote:
makingitpossible wrote:Yes sounds very much like PANDAS. I would recommend any strong anti-inflammatories. The tradition approach is antibiotics and steriods. From our experience our daughter doesn't harvest the strep bacteria so antibiotics are worthless. But every time we get the strep notice sent home from school this happens especially the bathroom trips. We have taken her in 3-4 times and she doesn't ever test positive for strep and there is nothing to kill it is just an autoimmune reaction which causes inflammation in her brain.
You can do steriods or natural anti-inflammatories like tumeric.
We are currently doing LDI for this issue and I highly recommend looking into that as well as that will be a permanent solution if successful.
It won't last forever. I would also suggest D-mannose just in case he has some other issue with the peeeing.

Hi there - where are you doing LDI? Do you know what the minimum age is? Have you seen any improvements?
Is there a minimum age generally for LDI in US?

Thank you!


We are doing this with Dr. Vincent who is now in Hawaii. We did an initial Skype appointment and now follow up mostly through emails. The initial visit is pricey at $600 but after that you have very little cost. The doses get shipped as needed and cost around $125. The secret is finding the right dose. We believe we may have just found our right dose for strep but the last dose we tried was too high so we had a very short flare. This means we cannot do another dose until 3/22. In the meantime we will start with candida as that is another problem for us.
If you are interested in more he has a ton of videos on his website explaining everything: http://www.globalimmunotherapy.com
He is a nice doctor and he thinks most doctors are idiots which is why I like him so much.
We did see slight improvements from that one dose but then he bumped it up higher and got the slight flare. So as of right now no miracles but we are just finding the right dose. It is a confusing process but the videos explain everything.
We just didn't see anything really positive with all the supplements. We are saving so much money now just not doing them. We do whole food stuff but I spend like $60 or so now a month on supplements which at one point I think I was spending about $1000.
Oh sorry I am sure there is no age limit. It is very safe and I believe he is very use to working with small children.
If you choose another doctor I would ask around. The dosing is the most important thing so I woudln't pick a doctor just starting out. THere is a doctor here a lot of my friends are going to that is just starting the process. I wanted someone with more expertise.

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: Need immediate help!!! Is this PANDA flare???

Postby makingitpossible » Sun Feb 12, 2017 8:53 am

I should also add that this is not FDA approved to my knowledge hence the age limit thing doesn't really apply but also this is not covered by insurance. However, I do use pretax medical dollars for the process.

Nikkie111
Posts: 351
Joined: Thu Sep 24, 2015 6:26 am

Re: Need immediate help!!! Is this PANDA flare???

Postby Nikkie111 » Sun Feb 12, 2017 11:58 am

MIP that is sooooo helpful thank you so much!!
The reason I asked about age is cause in Uk they don't do this to kiddies in many places that I looked up...
I am really confused as to how it helps wih candida or strep other than balancing the immune but I ll look at the site you sent me in detail !!! Again massive thank you...

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: Need immediate help!!! Is this PANDA flare???

Postby makingitpossible » Mon Feb 13, 2017 7:53 am

Dr. Vincent believes there is a huge difference between infection and intolerance. For example, he has a video on Lymes disease where he explains this. He says most people can test positive for the bacteria but only some have symptoms. He also believes ASD kids react to normal gut flora, I think of all those probiotics I use to buy and how she couldn't tolerate a lot of them. Most DAN/MAPS doctors will say it is die-off. Like a kid can be in die-off for 10 years or whatever. He believes that the immune system is overreacting and not doing its second job which is tolerating the external and internal environment.
So his theory is that once these doses teach the body to have a normal reaction to the bacteria/candida, etc. then the body can fight it off or the antibiotics/antifungals will start working.
He said sometimes he sees kids with no candida in their stool. Everybody is supposed to have some candida so that means the kid cannot tolerate it. The body reacts violently to it. My daughter did test high for candida on OAT years ago. Then we believed to have fixed the problem through gymnema slyvestre and 6 month or so ago got a Nutraeval with little to no yeast but she still does show symptoms. It is weird. I have to admit I totally buy his theory for my daughter. The killing protocols we did forever and they never worked. Some just say everything is hiding in biofilms,etc. But if you are giving biofilm disruptors and things that kill for over 2 years I think there is more to it than that.
In case you do start I would love updates. I will start a thread when we get farther along. It is roughly a 2 year process.

Nikkie111
Posts: 351
Joined: Thu Sep 24, 2015 6:26 am

Re: Need immediate help!!! Is this PANDA flare???

Postby Nikkie111 » Tue Feb 14, 2017 5:35 pm

That's fantastic advice MIP! Yes if we do it we ll go with your dr as I don't trust this being done here there is not much experience and I don't think thy even do them on kids
I just ordered the omnia drops (do you know it?) it's same as GcMaf just more stronger will give this a go for two months before the LDI - again it's targeting immune
Yes will definitely give you an update, if you could pls let us know how your dd is doing that'd be very helpful!!


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