pathfinder

Very interesting thread with lots of my favorite members contributing. I am relatively new to pandas world and I do not claim to know anything about it but I am going to add some of my own thoughts just to have this interesting thread going. My ds17 had a phenomenal success with pandas treatments but I am pursuing Lyme as well as pandas because of his physical symptoms that couldn't be answered by conventional medical testings. ( toe pain, yeast issue, headaches, fatigue) I am very happy with the way my pandas son is and would not mind stopping further treatment either pandas or lyme at this point as long as there is some assurance that my son will stay the way he is for rest of his life but there is none, is there? He is still young at 17 so he listens to me as to what to eat, what time to take his meds, what kind of friends to hang out with but will he listen to me in another 5 years? I hope I am not scaring young pandas but there have been many cases of pandas resurfacing even after many years of remission so how or when can I say my son is cured of pandas? ( assuming there are cured people) Nobody can answer that, right? Not all strep bacteria causes pandas and even among those causing pandas, one from New Jersey strain is different from one in California, right? And apart from pandas there is pitand so doesn't it make sense to pursue other and more broader bacteria/virus treatment if pandas treatment is not working after lengthy time or there are some other issues that have to addressed? I know that I have done the right thing by treating my son with pandas treatment and I think I am doing the right thing by going further with lyme treatment because I believe OCD/ADHD/mental deviation is treatable but there are several different ways for different people to get there

hello SFmom No, bartonella test is not among the test results I have with me. I was puzzled how my son's dr could say bartonella without hesitation only from CD57 but there must have been enough indication there. here are his CD57 numbers from Quest Diagnostics CD57+ 6 0-19% Lymphocyte CD57+ 3 0-7% of WBC CD57+ 167 0-741 cells/uL CD57+/CD3+ 3 0-12 % lymphocyte CD57+/CD3+ 1 0-4% of WBC CD57+/CD3+ 84 0-468 cells/uL CD57+/CD8+ 3 0-12% lymphocyte CD57+/CD8+ 1 0-4% of WBC CD57+/CD8+ 84 0-468 cells/uL CD57+/CD3+/CD8+ 2 0-9%lymphocyte CD57+/CD3+/CD8+ 1 0-3%of WBC CD57+/CD3+/CD8+ 56 0-351 cells/uL CD57+/3-/8- % of total WBC= 1 CD57+/3-/8- absolute =84cells/uL CD57+/3- % of total WBC= 1 CD57+/3- Absolute = 84 cells/uL SFmom I have been googling but no information regarding CD57 from Quest I am posting this in case you can make something out of this but either way you have my undying gratitude. pathfinder

My son's doctor did say that Quest is not reliable source for detecting lyme and he ordered Igenex complete lyme panel test so he is pursuing lyme. What I do not understand is how he came to conclusion that my son has Bartonella. I am no expert here but all my ds's western blot tests were nonreactive/negative. Only thing that could have meant anything is CD57 test as they are numbers and not positive/negative result. My head is spinning with Lyme/co and I am beginning to understand why lyme doctors are called lyme doctors. Thank you for your encouragement.

My ds 17 has had pandas for last 8years but dxed only last year and the treatments were very helpful but we are not at 100%( IVIG and agumentin were very successful about 70% to 85-90 %) As one of our quest for attaining 100%, I took my ds to a lyme doctor in Beverly hills 2weeks ago. ( thank you for SFmom) Today at our second visit with dr , we were told that ds does not have lyme but he has bartonella as per Quest lyme disease western blot test. Ds draw more blood for Ignex test and we will know more in another 2 weeks meanwhile dr. started ds on Rimfarpin 300g Bid. Dr was happy that there was something that could be help my son so was I. ( only pandas mom would be glad of bad blood test result) Does having T4, Free out of range high anything to do with Bartonella? I will report back when we have complete Ignex test result but first I want to thank you all for being steps ahead and guiding rest of us with encouragement and wisdom. Pathfinder

My ds 17 did his IVIGs when he just turned 17 which was 8months ago. I don't think IVIG was cure for my son but it gave my son a chance to be cured. My son has had pandas/pit for last 8years and I put him through a lot of treatments that simply did not work( probiotics--worse, GFCF for 6months---no change, supplements---nothing, medications--unreliable, unpredictable, sometimes better sometime worse, same baseline, I could go on) After IVIG, OCD and rages are less and short. His baseline has changed ( from 70% to 90%??) and I could see what he could have been without pandas more and more. But I think we can attain 100% because I am seeing that something in his system that was blocking all biomed/homeopathy intervention has lifted and he is responding to GF diet and has shown interactions with probiotics ( for the first time I see which is bad probiotics for him and which is good. I took my son to see a Lyme doctor to see if he has room for further improvement on different antibiotic. I see all the possibilities that was not there before IVIG. If I could go back in time, I would do IVIG at this first sign of OCD . IVIG really was hepful to my son.

pandas 16 I have another question for you regarding following statement from your earlier post -- "Btw for those struggling to find a probiotic that doesn't result in a hyper feeling "- Are you saying that probiotics make you--or should I say give you hyper feeling? I am asking you this because my son has been acting very restless/ADHD like past 2weeks since he started new probiotics. Pathfinder

I am beginning to wonder about my son's current probiotics. My son is currently on Klaire labs Ther-biotic complete and SB. Ther-biotic complete has streptococcus thermophilus strain in it. Now, here is my question, is thermophilus good for pandas kids or is it bad for pandas kid? ( I am going to stop that particular probiotics for now just to be on safe side) Probiotics are such an important part of pandas protocol and it would be a great help to many of us if you smart people would share your knowledge. Thank you in advance Pathfinder

Thank you for posting this, Pandas16 I know my son's pandas is highly connected to his gut problem and I always assumed it is the gut bacteria( bad ones) that is causing it but I never thought different probiotics actually make differences to my son's pandas. As my son has highly sensitive gut it is very possible that even probiotics if not the right kind could cause havoc to his pandas. I am glad you are doing better. pathfinder

Emerson, I never knew my heart could be broken over an ice cream story but I am. I feel you pain and my heart goes out to you. Amazing story teller at age 16!!!! Cyber hug and love. pathfinder

LauraMary I don't want to worry you unnecessarily but my son also has very low subclass IgG3 levels. He had at least 2 myco P in the past 3 yrs.( only 2 of them were distinguished because dr just did not test Myco back then) and I really think they inflicted some damage to his already hampered pandas brain but the good news is that he is making come back in a way I never thought possible so maybe damage was not permanent. This may sound really funny to some but I want to say that I feel so fortunate that my son has pandas and myco( lyme being tested)because we can treat them.

My son has immunodeficiency and had Mycoplasmas.P in the past. he did well with clindamycin but did very bad with biaxin. We tried biaxin several times afterwards to eradicate Myco but every time he was on it, his pandas symptom went up.--irritation and rage--- We are seeing Lyme dr for Myco. P issue as I felt Myco is something out of pandas league. quote name='pandas16' timestamp='1301778511' post='108768'] I believe there is some debate on this. Some doctors view a positive IGG as an indicator of a past infection some view it as an ongoing infection. I have PANDAS and when I treated my mycoplasma IGG with high dose Biaxin, I had an absolutely awful reaction to it. Antibiotics can sometimes stir up other bacteria that weren't problematic before. I think it also depends if your child is immunodeficient or not. (just an opinion) In the case of immunodeficiency where the child cannot clear the infection then maybe an IGG should be looked at differently. I know an immunodeficient boy who had PANDAS that did absolutely great on high dose biaxin. I have no immunodeficiency and did horribly. Maybe this is just a coincidence though.

My son went through an episode some what like the one you are at right now. He was then 16 and had had untreated pandas for last 8yrs. Out of nowhre, He started to have intrusive thoughts that were very destructive and scary that lasted for couple of weeks (not like regular OCD/pandas symptoms that I had known) It turned that he was having a Myco.P at the time and 10days of clindamycin helped his intrusive thoughts go away.( just like that!!!!) I thought I lost my son right there and then. It was one of the most scariest things I have ever experienced. It was not his first Myco incident and I don't know why that one caused such powerful episode where other previous ones just just anxiety and OCD flares ups. I cannot say what you are going through is because of myco P but it might be something you want to look into. I will pray for you and send you all the motherly love I have in me to your direction as I understand however slight, what you must be going through. Pathfinder

Hello everyone in Lyme community. My son had a great result from Pandas treatment but some of his physical symptoms call for Lyme tests.----joint pain, cold hands/feet, fatigue, I am wondering if any of you know of Lyme dr in southern Cal area who is familiar with pandas. ( it would be nice if he/she takes insurance) Thank you

Hello Phasmid I am so glad that your little one is doing better. My son who showed severe sign of OCD/tic at the first onset of pandas at age 8 ( 9yrs ago) had MRI done in the same year and they found absolutely nothing wrong with his MRI.

I am so very very happy for you and your son.

Wilma My heart goes out to you. I wish I have something to say or do to comfort you but I don't but I want you to know that I am praying for your family.

Phasmid In home infusion is not a bad option at all. Crescent health care has a infusion center where my son had his infusion and I did not see any differences from Hospital setting ( he had one in hospital). My son did them at their infusion center and Priscilla's dd did them at her home. I really don't think there is disadvantage doing it outside the hospital ( I know you are not going to have UCLA setting--- my older son is at UCLA and I love UCLA) Crescent health care( or other infusion centers) only does IVIG so they know what they are doing and you could trust them as much as UCLA, I think. Michelle

I am so mad at this insurance company. I really like to ask Anthem if they have better ( or any other treatment) option for your son. Don't they see that it has to be treated? I don't know but maybe you need a doctor who could present your son's case stronger and better to Anthem? And yes you can get HD IVIG at home. I will PM you Michelle

Did any of pandas kids ever tried this protocol from this forum? Good or bad, please share your experience. thank you

This is only my own experience with my son17 who had 20+ neurofeedback sessions when he was around 10 yrs old. I was told that one needs to stick with it for at least 20 sessions to really see impact so even though I did not see any improvement during those sessions I stayed with it. The verdict is that it did not work for my son's adhd/ocd and was complete wasting of resources and time.---I drove him to Phd dr's office after school(1hr driving back and forth+waiting )plus a 45 mins session.($$$) Having said that, all pandas kids are different ( this everyone will agree) so there is no one fit treatment for everyone.( example--my son is doing fantastic after IVIG but some kids do not) best wishes

Yes, risperadal takes effect right away ( differ by individuals) but it can take up to 2weeks and more to see its full effect.

Thank you guys Fatigue has been a major issue even when he was on high dose of concerta (54mg) and 100mg of zoloft. He practically slept through his life during junior high and high school years. ( Abilify (3mg) was added somewhere in 9th grade and it made him almost non functional so we gave it to him as sleeping med at 8pm but it helped his impulse ) We live in S. cal but we went to a camping trip to Redwood area for 1week one summer 12 yrs ago.--- We actually camped in a national forest for 3 nights where deers were roaming. My son did have chronic toe pain for last 3yrs. ( He used to limp severely at one time) His toe was x-rayed and they found nothing with it.--He had Mycoplasma P 3times between 2008 to 2009. ( I was thinking it was Mp that was giving him toe pain as toe pain has been gone with minomycin. As I am writing I am really beginning to see Lyme connection with my son's symptoms but I promised Dr that I would wait 2more months and give a chance for IVIG to settle in and try TSO therapy to control yeast problem while waiting. Michelle

Hello pandas parents My son17 is doing fantastic after 3HD IVIGs and 6 months of augmentin. Before pandas treatment, all I ever wanted was my son to be free of OCD and live a peaceful life but now I want more. I want 100% of my son not 90 or 95% but a whole and complete human as he can be. what he has gained from his pandas treatment 1)skin rashes all gone. diarrhea gone. 2) OCD almost gone if any, very short duration 3)ADHD gone --still restless but when he studies, he stays task for hr or even 2hrs at times/ unheard of before IVIG and even when he was on highest possible dose of concerta 4)incredible turn around attitude towards school and friends (His headmistress thinks it is nothing less than a miracle ) 5)goes to sleep 11pm and gets up 6 or 7am everyday ( had a severe sleeping problems) here are things that are keeping him from 100% 1)occasional unreasonable rages --- 3times total post 6 weeks of IVIG lasting 3 to 5 minutes. He had red bulging eyes every time that occurred----- I see those red bulging eyes before and after IVIG 2)severe daytime fatigue, constant thirst/urination not related to diabetics---IVIG or augmentin did not make differences. 4)carb/sugar/salt craving remain Here are things I considered as my options 1) Do more HD IVIG 2) explore lyme possibility with Lyme Dr. ( many of my mentor members who helped and guided me through pandas protocol when I first started pandas journey moved to lyme territory and they make total sense to me ( I salute to those who are pioneering pandas/lyme together as they are giving us more materials and informations to fight for our kids) 3) wait out for couple of more months 4) switch Agu to Azithro I went to see my son's pandas dr today to sort out his opinion and they were to hold off on IVIG and lyme but go after other means of immune modulator and revisit yeast med. I am going to sleep on it. Michelle

Yeast medication helped my son with ADHD symptoms. I wish I did not put him through ADHD meds all those time and instead had him on yeast meds. He is still a little restless but his concentration improved so much with yeast meds. It is something to think about.

My son had that problem for a long time. He would become very hyper at night but it was taken care of when his pandas symptom diminished and right yeast med was used.