your thoughts

[mama2alex]

I'm sorry this has happened to your child, but you're are in the right place. In most children there are underlying infections that cause the immune system to go haywire, and the trigger infection - in your case the flu - is just the tip of the iceberg. For example, our son developed PANS after a bout with pneumonia 5 1/2 years ago, but we had to uncover and treat Lyme, Bartonella, Babesia, and chronic viruses in order to get him back. We have also had to treat for mold toxicity, change his diet and support his body with vitamin/mineral supplements and glutathione. We are still treating and he is still improving, inch by inch, but we believe he has congenital Lyme (caught it from me in utero) and has had health/behavior issues since birth.

 

My advice would be to test for underlying infections and immune function asap and educate yourself on topics such as mold toxicity, methylation and special diets. It will take time, but I'm sorry to say that in most cases, this is a marathon not a sprint. Some infections to test for are strep (it can be asymptomatic), Lyme, Bartonella, Babesia, mycoplasma, Epstein Barr, and HHV-6. Others can chime in with other infections to test for, but if you find the right doctor, they will know what to look for and the best labs to use. Pediatric Lyme doctors are seeing PANDAS/PANS frequently, so that can be a good place to start for testing.

 

The one case I know of where a child has recovered completely in a relatively short time is our family friend's son. He developed intrusive thoughts shortly after a strep infection at age 8 and they called us immediately when their pediatrician mentioned PANDAS because we had been dealing with it for two years. I told them to go straight to our Lyme doctor and he tested their son for a number of infections. He had Lyme, Bartonella and Babesia. The doctor put him on a gluten/dairy-free diet and treated him with antibiotics and herbs for about a year. He is well and never relapsed. I think the fact that he'd only contracted Lyme a year prior (he had a known tick bite but they'd never had him tested) and they jumped on it so quickly when he developed PANS accounts for his quick recovery.

 

Ibuprofen and other Nsaids are stressful on the gut and liver, so I would only use them as needed. If they've helped, it tells you that inflammation is causing the OCD and behavior, but they are only symptom treatment and come at a cost. I would also stay away from Tylenol completely as it depletes glutathione, which is crucial for detoxing and immune function and often already low in these kids.

[pr40]

"Will he get better on his own right now? Just curious about that as I have heard people say it went away after x weeks..it has been two weeks for us now...I will pursue diagnosis no matter what just curious what to expect from here...he has no physical tics just obtrusive thoughts ocd"

What you should expect is the precise opposite scenario since that would make it more likely for you to help your child. and if the worst scenario does not happen -- well, you'd be among the very lucky ones as was the family mentioned by mama2alex in the previous post.

[madisonjar]

Yikes I don't know if I came across as just hoping this stops so I don't have to treat as I will be treating I am just looking for Rays of hope as pandas resource website makes it seem like you can treat infection (like for a while) and things can and will get better. I have a Drs name from Bedford ohio I think that is a pandas specialist I am just hoping for some relief for my child...he has had a okay day today aside from not wanting to go to church afraid there were girls there (that's one of his thoughts is he is in love with every girl) and of course the confessing of "sins" he has done...but he has ib profuen in him so it keeps his mood up.

[rowingmom]

I'm sorry this has happened to your child, but you're are in the right place. In most children there are underlying infections that cause the immune system to go haywire, and the trigger infection - in your case the flu - is just the tip of the iceberg. For example, our son developed PANS after a bout with pneumonia 5 1/2 years ago, but we had to uncover and treat Lyme, Bartonella, Babesia, and chronic viruses in order to get him back. We have also had to treat for mold toxicity, change his diet and support his body with vitamin/mineral supplements and glutathione. We are still treating and he is still improving, inch by inch, but we believe he has congenital Lyme (caught it from me in utero) and has had health/behavior issues since birth.

 

 

I completely agree with mama2alex's comment.

 

It will be hard at this point to even imagine the lyme and the coinfections (babesia, bartonella, EBV, anaplasmosis, ehrlichia, RMSF) could possibly be responsible for the symptoms you are seeing in your child. After all, according to the CDC (and most likely your doctor), it is rare and easily treated. Perhaps the easily treated part applies to people with properly functioning immune systems, but for whatever reason (environmental toxins, pesticides, metal adjuvants in vaccinations etc), our children don't seem to fall into that category.

 

PANS caused by bartonella and babesia infections were the cause of our DD13's symptoms as well.

 

If you don't find resolution treating using PANDAS protocols, please don't dismiss the possibility of other infections.

[HopeinHIM]

I have found someone named Michele Snyder who does a support group for kids with pandas ocd here in akron..I am trying to get in touch with her now..how much do you guys think you have put into doctors cost per visit? Just curious. Thanks everyone...I have read that with treatments and maturity of immune system people can grow out of this disease is that true?

Hi

We all feel your pain. As mentioned above, educate yourself now. He may have a predisposition to OCD and anxiety so research that as well. You need tools in place to handle this illness. He needs tools as well. Nobody can predict that this will not happen again. Sorry!

Have his immune system checked and do in depth testing for Lyme's and co-infections. No tick bites here so each time a PANS mom mentioned Lyme's I dismissed it. Sorry I did.!!! Our Ds had a similar bout as your child when he was 7 and then nothing until he was 9. He has PANS from various viruses and infections. No blood work showed anything other than low igG and low IgM but we have been treating for Co Infections for Lyme's . Most people on the forum have a team of doctors. A PANS/Pandas doctor and a naturopath along with therapist and neurologist. It all depends on the background of the PANS doctor you choose. Ours is a neurologist and our naturopath is an immunologist. We now have a supplement protocol in place to build his immune system along with prophylactic anti viral and low anti biotics. This can be a long journey. I know you are tired and its been two weeks but change your mind set. If your child had diabetes you would have to deal with it as a marathon not a race. That is what this is. A marathon. My husband wants to address it fast and then simply fix it!! Doesn't work that way. Your child needs" compassion" and extra love bc this is so painful for these children. The only way you can do that is by educating yourself and your entire family on this illness. This way you have a plan in place and you wont be side swiped like so many of us!! My family spends a lot of time in prayer!! We also don't take any good days for grant it. WE thank God now for the Normal!!! when it comes!!

PS Our PANS doctor is $500 first visit and then phone consult $300 for 50 minute follow ups (every other month)

Our Lyme's Naturopath was $800 first visit and $225 for follow up or phone consults. All out of pocket except some Lab work and meds that are covered. My husband work 2 jobs 7 days a week. I am now our DS full time stay at home care taker. This is a season and it will pass!

[madisonjar]

Just a little update. After a pretty decent night last night (he was in a really good mood, and returning to himself...a little hyper at night which is normal for him what kid wants to go to bed, and the cowboys won so he was excited) we were nervous of how this morning would go as he is back in school for the first time since this all started. He woke up and came in our room still upset saying he was thinking about it (his obtrusive thought is girls and other stuff) which means he is having bad thoughts...I prayed with him and he asked to watch tv which is the FIRST time in two weeks he has not went and put headphones on and listened to adventures in odyssey or just laid in bed crying because of this thoughts. I then told him he needed to take a shower which he fought me on which is good as the last two weeks kid was wanting to take showers every day on his own. He was laughing and joking and cracking jokes. He still had some thinking about it moments but it was good it seemed he looked through his football cards that he got for Christmas even picked out some for his friends and eat breakfast and got on the bus just as he has. So we thak God for that!~ it seems as though at least for now he is having a good day today.. I called the Pans/Panda specalist here in ohio and thankfully he does take our insurance and I set an appoinment, sad thing for us is its not till the 21st. I am hoping this kid is getting somewhat back to a normal routine till we can get him to the doctors, I am encouraged by those who have said they have had smaller flare ups and I pray that he does not get exposed to something at school that causes this to flare up again. Also hopeinhim, we pray ALOT, so thank you for your encouragement....My wife read this in her bible study today...What seems like an unmovable mountain to us is but a stepping stone in his eyes.

[madisonjar]

another update. We had our appointment on the 21st of this month and the doctor was interested that B's Symptoms were going away so fast...he did blood work and called me yesterday and said that it showed elevated lyme in his blood. So I am assuming this is the lyme that has done this to him? The doctor said at the appoinment that we should do Ibprofuen for 2-3 times a day for two weeks just to see how he does and go from there, but when he called us back with blood work he wants to see him on Tuesday and said something about antibiotics....I am going to call him back as my wife is 9 months preg. and could go anytime, just curious if we can start treatment now and then go back up and see him. So I am hoping to treat the elevated Lyme and get my buddy back to where he should be. Thanks everyone. By the way he is still in school and back to himself...from what I have read that is characteristic of lyme disease and why it goes untreated for so long as it usually changes symptoms. is that correct?

[mama2alex]

Glad to hear he's doing better! If you are dealing with Lyme, your best bet is to work with a Lyme-literate MD. They know what co-infections to look for (Lyme rarely travels alone) and how best to treat. Also, educate yourself on Lyme - good resources are the ILADS website www.ilads.org, a book called "Cure Unknown" by Pamela Weintraub, and the many parents on this forum who are dealing with Lyme and co-infections. It's a tricky disease.

[madisonjar]

okay got the blood work back friday as I got in early because really well my wife could go any time and I also wanted to start treatment asap!...

 

 

The bands that reacted according to the test were IGG 23,41,58,66 and IGM 41

The Doc we are seeing said he wants to treat with a heavy dose of AMOX for one month and then lower it for 2 months after that...I am reallllllyyyyy hoping we are going in the right direction here. We started treatement friday night and sat. night he had a very little 5 minute flair up of thoughts and then that was it....other then that he has been back to himself...so again I ask your thoughts on all of this? are we doing this right?

[madisonjar]

Okay another update...I originally said AMOX but I was wrong its augmentin he is on week 3 of it and is doing awesome, he has had one intrusive thought ( we brought the new baby home and he had one bad flare up but he was also going to the doctor and said when he goes there now he thinks about all the things that he was thinking before) other then that he seems to be doing great...A little hyper at times and a bit agressive at times, but we are also having the worst winter we have had and I think Cabin Fever is realllllly setting in. Anyways Doc is keeping him on 1000 augmentin (1 pill twice daily) for 3 more months and then we will talk about backing him down or seeing what we need to do. SO here is my thing...I want to attck this as much as I can. I have gotten essential oils and want to start working with those to hopefully build up his immunity system and we are also still doing the probiotic...He takes a multi Vitamin in the morning, anything else that would help you think? I asked the doctor about relapse and he said it is a good chance, but he also said that kids that catch it early and get treatment seem to do the best....EVerything sound about right there? any suggestions on our next plan of attack on all of this? Now that he seems to be doing very well, I want him to stay that way! thanks all!!!!