cara615

Time for a change in Doctors as well. Our current PANDAS specialist has let me down bigtime. She wants my son to come in for her to look at him and charge me $220 in order to decide if he needs a med change. Are you kidding me? All she does is observe him for 1 hour. She will not trust me that his tics are getting worse, she needs me to pay $220 in order for her to decide. I call BS on that.

I upped his probiotic from 50 bill to 80 bill yesterday at noon. i saw a marked difference in tics from the AM to the PM. I wonder if that had anything to do with it.

I want to mention Dr. Niccolai's presentation (I think I spelled her name wrong but she is Sammy's doctor from Saving Sammy). She really pushed Strattera and antipsychocitcs. I think she is a big fan of pharma. I was not impressed and frankly all the other speakers totally contradicted her!! In addition she did not present, she read directly from her slides. It was not well executed at all. My favorite was Dr. Bhakta and Beth Mahoney. Beth is going through a very hard personal situation right now so she was not her usual spitfire self but she spoke so well and talked about how if we ever need to hospitalize our kids, we need to really think about where we take them so we don't end up like Justinia. Unfortunatley, these kids are being taken away from their parents and its becoming more common. It seems completley insane but there are hospitals that like to do these things. We just need to make sure we go to a parent "friendly' hospital if it ever comes to that. Of course I pray that no one on this forum ever has to cross that bridge.

Do you all think that because the azithro has stopped working for my son that he is not a esponder anymore? Or does it seem like we really just need to find the right one and treat possibly other infections? His first real episode was last May 2013 but before that he had tics 2 years prior. Does this mean that we are too far gone? That i waited to long to get the PANDAS diagnosis and now we have to live with this? Anyone else out there see inprovement/resolution after having symptoms for 3 years or so? i feel like we may have missed the wondow of opportunity to help my son. I realy really hope I am wrong.

Not tha tI am aware of. He may have but I didn't take any notes on that part. I must admit a lot of his slides were over my head too. My son was an antobiotic responder but for some reason is not responding to azithro anymore. His titres are still high and his tics are seemingly getting worse. I know we need a new antibiotic or combination. I am praying that we will hit on the "right" protocol and not have to move on to IVIG. I say this because in the state od GA IVIG is not offered. We would have to travel and my son is completely terrified of needles. He would be traumitized by IVIG. Not to mention the cost.

Dr. T's slides are up so far. I can't wait for Dr. Bhakta's slides - you guys will learn so much about nutrition! http://www.atlantapandaspans.org/conference-powerpoints-from-the-speakers.html

Another thing i learned. We need to treat PANDAS before it becomes truly autoimmune in nature. In the early stages the kids build antobodies in response to an infectious trigger. If it goes on too long without treatment, the body starts making antibodies without the infectious trigger. This is when it is condisered autoimmue.

There is so much more to share. Let me get my hands on the slides!!!

Bhakta, Dr. t and Beth Mahoney were awesome. I will post slides when I get them. Big takeaway for me is that abx need to be rotated. Shouldn't stay on one for too long. Looks like we will be switching to something else. Luckily our Dr. Is attending this conference and changing her thoughts on how to treat. She also realizes her limitations and we are also going to start seeing an immunologist that treats for PANS/PANDAS as well.

Dr. Bhakta says to remove gluten, dairy, corn, soy. These foods increase glycemic index and turn into fat cells. This causes inflammatory response to antigens. They also cause free radicals which cause oxidative stress and destroy immune system.

Just met Dr. T!! He is so nice. He seems to think my son is an abx responder (from what I told him) but thinks there are co-infections that we need to test for. I agree and will certainly get moving on that soon. " peeling back the layers "

Totally agree. one thing at a time! I picked him up from school today and his eyes were back to normal. No more red circles under them. However his tics are increased, even teacher noticed his throat clearing today. (sigh) So I changed up his probiotics. We were on Ther-biotic detox - 50bill and now i moved him to rebgular Ther-biotic which has a ton more strains in it. i gave him 2 capsules to get to 50 bill. i agree with everyone on my "discouraged" post. There is more to this than what i am treating him for right now. i know i need to dig deeper. I got the 23 and me kit in the mail and I just need to collect enough spit from him (he has trouble spitting). then we can address methylation more accurately. I want to test for co-infections possibly viruses. i just don't believe that what we are experiencing right now is his true baseline. I had him practically tic free from Aug to the end of Oct 2013. Right now he is grunting (clearing throat), making an "eh" noice, licking the collar of his shirt, grinding teeth from time to time and today he was VERY hyper and LOUD! Well, conference is tomorrow so I hope i can get some more info. Thank you for your reposnses and and advice. I don't know what I would do with out you!!! xo

Wow Yeast. I am going to switch his probiotic today to give him some other strains. If the eyes don't get better by the weekend, I am pulling the trigger on the Nystatin. Thanks rowingmom!

Should i ever expect a full recovery? I am just feeling so deflated right now. My son is not back to baseline yet and I am feeling like he never will get there. He is much better than he was during his last episode so we know he has responded to abx but why can't we get rid of the tics? Is it possible that he may for the rest of his life and if so then is it Tourettes? i am very confused and doubting everything. its so hard for me to live with all this anxiety and fear for the future and yes I am on an SSRI to help with this. Ds's last episode was in Nov. Am I not giving it enough time??

i did not give the IgG yesterday and this morning he has red circles under his eyes? He did not eat anything different as far as i am aware, could it be from the IgG?

So the "eh" tic is still here this afternoon after I picked him up from school. I guess it must have developed as the day went on. i will NOT be giving him the IgG today. I will wait until this "mini" flare dies down. I hate this rollercoaster. I am going to get some chronic disease from all this anxiety.

Will do. i like the pulsing idea and I am going to listen to his body. his body will show me if its having a postive effect or not. Yes we are doing Epsom baths every night as well. Thanks so much for you feedback i swear this forum is so much more valuable to me than my MD sometimes!! She knows a lot but I have taught her somethings that i have learned from this forum!

Yes, that is the same line of thinking. Ds even said that his tummy hurt last night before bed. The IgG was definitely doing something. To me, die off is a good thing, no? I know you need to get through the tough part (increased ticcing) to get to where you reap the benefits. Just like yeast die off. i guess i will see how he is after school. If there is no ticcing, I will give him some more. If he comes home ticcing, I am going to give it a week before I start it again.

For those of you that don't know what this is, I think its similar to IVIG but just not intravenous. Its powdered immunoglobulin. Anyway, he had some of those "eh" tics last night and then I gave him his NAC (helps detox) and things calmed down. This morning, I did not hear any ticcing at all. Very interesting. i will see what the day brings. I am scared to give him more of the IgG but then again, maybe its helping.....

Saw the integrative MD the other day and she said we were on a good path but wanted to include IgG to help his immune system. She prescribed IgG 2000DF by xymogen EP. It contains IgG, IgA, IgM, IgE, IgD and IGF-! and TGFB-1. i gave him 1/4 tsp today with his applesauce and about 30 minutes later we have a new tic. Its his dreaded "EH" tic which I haven't heard in a while. Could it be from the IgG supplement? Is it his body killing off more bacteria and resulting in die off? Any thoughts? Thanks

i suspect that I may have an infection that keeps my son's titres high. i was gone for a week on business and dh said that ds's tics were almost gone completely. I come back into town and they increased slightly. I am convinced its me. What do I need to do? Who should I go see? Primary? What do I ask him to test me for? And if I do have an infection, will they treat me without symptoms?

Ahh got it! thanks for the info. So I will need to use Genetic Genie to process the raw data. Then heartfixer to interpret and treat. Hopefully the ladies on this site will help. Everyone on here is AMAZING!

I JUST ordered the kit and I'm going to have ds tested. I am scared to find out things that maybe would be better off not knowing but I need to take a deeper dive into the Methylation issue. We know he is a poor Methylator so I feel determined to address it properly and not just throw methyl B's at him. Those really aren't working anyway . My question is: Wasnt' there a cimputer program that you upl oad your 23&Me results into and the program explains in layman's terms what is needed to get the Cogs turning (so to speak)? does this still exist?

Interesting, I have tried 5-HTP with my PANDAS son (he tested low for seratonin) and it made his tics so much worse. Proof that what works for some doesn't work for others. As far as NAC goes, I believe it helps my son detox. I give him 1200mgs daily (since May) and it helps to increase glutathione levels which is what your body uses to detox. He has taken it consistently since May and during the periods when he is barely even ticcing so I know its not contributing to his tics. We also give my PANDAS son: Glutamine Probiotics - Ther Biotic Detox (50bill CFU) Grapefruit Seed extract (8 drops/day) -to manage yeast but may switch to Nystain (not sure yet) Cook with lots of Turmeric and he is on 75mgs of Azithro/day

My son was on a methyl B complex with B3/B4 and when his body did not need it as much he would get a niacin flush. I knew it was the B3/B4 because he got the flush right after taking the vit. It would last for about 30 minutes and then go away. His cheeks and ears were hot too. Probably not your issue but just wanted to mention it. It was a good way for me to realize that he didn't need as much of the methyl B's because his body was starting to methylate better. At least this is what me and my doctor were thinking. I should probably get another NutraEval test done to see what his levels are....