pathfinder

Wow !!! That is exactly what happened with my son after he was put on liquid grapefruit seed extract for 2 or 3 weeks. He was on other supplements as well but they were something that he was on for a long time so I believed it was GSE that did so I discontinued it. My son has had something like anger problems but nothing like it was then. I don't know if it was GSE that triggered my son's rage but it was mycoplasma P that was making my son consumed with unreasonable rage.( test result) Clindamycin took care mycoplasma p at that time but I am keeping some biaxin with me at all time in case it comes back. It was one of the most scariest moments of my life so I know what you must be going through and my heart goes out to you. Does your son have any physical symptoms( like difficult swallowing or swallowed joint) that are going on with his rage?

I found Dr Lin in Irvine, Ca who specializes in dan/pandas. As a dan doctor, he does take care of adult children along with young children. My son is 17 and therefore it was important that we find someone we could stay even after my son turns 18. You have my respect and gratitude for helping adults with OCD with pandas treatment. Nobody deserves to live with OCD.

What was the yeast medication? My son is on medication Fluconazole 200 mg once a day. He has been taking this med for last 2 weeks and it really made a huge differences in terms of his ability to focus.

My ds is doing really well with augmentin/IVIG therefore it is safe to say he is a pandas/pit child to the core but my son just not do well with steroid burst. It turned out that his yeast was interacting with steroid ???? His OCD improved with aug/IVIG but his sugar craving and drunk like behavior had to be controlled with yeast medication. In my son's case, pandas/ocd behavior and yeast behavior were different problems and had to treat them separately. Yeast makes my son crave for sugar and salt and make him act high as if he was high on alcohol or some kind of drug. ( We used to think it was due to his ADHD)

We had this topic in this forum not too long ago. search through topic Low Dose Naltrexone any one have luck?? http://www.latitudes.org/forums/index.php?showtopic=10106&st=0&p=84955&fromsearch=1entry84955 I got so much information and help from this forum and I hope this forum will be as helpful to you as it has been to me. welcome

My son slept almost 24 hrs straight after his IVIG. He was very tired and sluggish for almost 2 weeks. ( actually he was complaining today that he is too sleepy and tire at school) He has not had any relapse in his OCD but I noticed that his tic has come back since IVIG which is very odd because he has not have tic for a long time.( more than 5yrs )I think my son's tic is same kind of reaction as your son's staring to IVIG ? We had a pandas Dr visit about a week ago and he told me that HD IVIG usually takes several weeks before you see some effect so let's be patient and stay positive. I do think you are on the right path because you are believing in curing your child and exploring options in treatment and to me, that is the right path.

He had been on combination of numerous medications since 10 yrs old. His last medications were Zoloft, Concerta, and Abilify but they were not working so we were at a point where we either change meds or try something different altogether. It has been 10 months since we started to ween him off meds and 7 months since coming off some meds completely. (we are still on 25mg zoloft as he gets headaches when we discontinue completely--no differences in his OCD whether he is on this or not)

I was afraid of posting this as it might be too early to pop a champaign bottle yet (only 20 days since last IVIG) but could not contain my happiness any longer so here I am reporting to you guys that my ds17 is doing very well. His OCD is almost gone ( I am still learning to distinguish between OCD behavior vs his basic personal preference ) He yelled at his brother for putting his computer on the floor several times but did not go into 2hrs of demanding apology and making us promise that we would not do it ever again for another 3hrs. Yes he gets mad and things bother him but he moves on in 5 minutes. I cannot begin to tell you how nice it is to have a life without his OCD thoughts. As I am typing this, my son is studying for his upcoming Nov SAT test. I am not going to dwell on how we could have been aiming for top schools if it weren't for his PAN/PIT and be happy that he is taking positive steps and embracing his future in a way that was not possible before we took him through PANDAS journey 9 months ago. We are scheduled to get 2nd HD IVIG in 10 days but am not sure if we will do it yet because he is doing so well as it is but we will see. To be fair, I have to say he has been improving steadily since starting Augmentin 4 months ago so his improvement could have come from Augmentin not from IVIG alone but I believe(hope) IVIG will play its role in the future. I was very discouraged when Dr. K told me that teens have lower chance of recovering from PANDAS but as it turned out my son is doing really really well. I am redecorating my house and doing things I couldn't or didn't want to do due to my son's condition. I hope my son will continue to do well but whatever comes our way, we are ready to tackle it because now we know my son's OCD has beginning and ending compare to being permanent fixture in his brain. Thank you for reading Pathfinder on Diamond Bar, Ca

My son has a stomach issue I would like to pursue as well. He has very frequent diarrheas through out all his life and pandas or not it must be very uncomfortable for him so I am thinking of doing endoscopy in his stomach and intestines. we did numerous blood tests on food allergy and other possible bacterias and all foods he tested came up as positive/no bacterias which means he should not eat anything and since it is not possible, we went to IVIG. I don't know yet if IVIG took care of this problem but I am going to do endoscope for my son in 2months of time. I will let you know what it was all about when I know it myself.

I have a son who just turned 17 and went through 2 IVIG so far(170 pounds). He was very hesitant and scared of IVIG at first but he understood that he needed help with his ocd and anxiety thoughts so in the end he went along with it. I wonder if your son would talk to my son via email or texting. I believe my son is happy with his treatments ( no complains for 3 days straight IVIG at high dose) as he is doing much better than ever since he started to have pandas symptom. pm me if you want his email address or phone number. I could have my son contact yours too. I think my son could sell it to yours as he has been through so many tests and treatments (meds, diet, supplements, acupunctures to head/like ###### riser movie, hypnoses, smell therapy among others) good luck

Yes we are seeing a dr. in Irvine, Ca. (dr.L) We did 40gm total IVIG (0.6gm/km) first time through different dr. (his skin allergy he was living with for several years cleared up in few days afterward )but instead of waiting out and continuing with that dose I took my son to see Dr L in Irvine and jumped right into high dose IVIG ( he tends to go for 2/kg ) It is to early to call but my son has been doing so well last 3 months since we started augmentin 1000x2, I know we are at the right place. He is not slave to his ocd and anxiety anymore which used to make him a miserable and angry boy. (Prozac and sisters or abilify and familys did not help him to this extend and they would bring out whole new sets of problems) We just have to figure out how to tame his yeast behavior under control and it is very difficult at this point as nothing seems to work. ( he craves for sugar and salty food and when he gets sugar, he acts as if he is high on something (hyper active-laughing-drunk like) no probiotic is working because he would have diarrhea on some of strong ones.

My ds17 just had 2gm/kg ( total of 150gm of IVIG) 3days of last week with no side effect so far. he was approved for 9 treatments at this dose monthly. I think it might be a bit too aggressive as pandas treatment but we are going to do it as my son is already 17 and missed chance of treating pandas for last 8-9 yrs. ( we were after wrong treatment) I would say my son is at 70 -80% since we started antibiotic and this is not acceptable for us. We will continue to pursue until we have the son we used to have but having said that I am very very please with his progress. His OCD and anxiety are almost completely gone and only occasional angry outburst remains ( He would ask same thing over and over and used to get very angry over little things) He is doing well at school (11th grade) and working on SAT that he will be taking come this November.---all those time and money we spent on his tutor did not go waste as it is definitely feasible for him to make it into 4 yrs college. I would say probiotic+IVIG are working for us and we will continue with it for now. Pathfinder from Diamond Bar, California.

tried for 2months but stopped as my ds (16 then)17 kept having vivid violent dreams. I wished I had my ds stayed on it a little longer to be sure that it did not work for my son but did not have courage to go on. ANYONE ELSE?

Dr. Gerald Greene at Beaver Medical group in Highland did all the blood tests for my son and he was covered by my insurance (Anthem) Dr. Lin runs 2 different practices in the same office, one as DAN Dr. and the other as regular Pediatric. I had to make 2nd appointment to talk to him about pandas and it was not covered by insurance( $350 for first consultation/I do not know if blood tests are covered either). In the end, it was necessary for us to see Dr. Lin as for higher dose IVIG but Dr. Greene might be a good starting point. We like both doctors very much. Priscilla has S. Cal pandas support group so it might be a good idea to contact her. Diamond Bar, Pathfinder

Priscilla My heart goes out to you and I will pray for your daughter and your family. My son had very very bad rage and aggression about 6 months ago and it turned out he had high mycoplasma P titer. He also had ASO titer but that goes without saying as he is PANDAS kid with annoying OCD( asking same question over and over kind) but mycoplasma P made him very very angry and aggressive. I hope that helped. God bless Diamond Bar

I am very very happy for you and your family. best wishes from Diamond Bar

EAMom you are brilliant!!!! Dr. Lin might be an answer for us as well as UCLA possibility. Thank you so so much. ( I did not know you were from LA area but I learned so much from some of your posts and thank you do much for that)

When Dr. K ordered steroid burst, I took it to my son's Dr. for prescription but he did not agree with Dr. K regarding steroid burst protocol and it ended there--any chance of these two Drs working together ended as well. Thank you for your help though

Sorry He is around 170 pounds and 75kg

I came knocking on this site about 7months ago and I thank you all for sharing your knowledge and compassion. My DS just turned 17 last month and doing better with PANDAS treatment than any other treatment we ever tried. ( what a difference last six months made in our family!) With good advices from wise moms from this site I contacted Dr. K who then needed 3 blood tests done by local Dr before I can arrange phone consultation with him. I went my family Dr and neurologist who flatly refused ( did not believed in PANDAS) So I enlisted help from you guys for advice and momto2pandas (thank you) referred us to Dr who ordered necessary tests and beyond. I had phone consultation with Dr. K who advised us to go ahead with IVIG asap as per my son's age and his blood tests ( High ASO titer and High Mycoplasma P) but first he wanted steroid burst for my son but I had to put my son's problem aside ( for the first time in my life) as I had to deal with my mother's passing. Meanwhile I was contacted by Dr's office( who did blood test) and they ordered some more blood tests for my son and they were mainly immunoglobulin tests of which one of subclass (3) my son was deficient and others he was barely in normal range and high ASO titer again. Dr. ordered IVIG at which Anthem approved. Now here are my question. My son received total of 40 grams of IVIG and it seems to be too low of amount to be considered as PANDAS protocol ( as per my own research from this site) It has been only 2days since IVIG but it was like nothing happened to him ---no side effect or should I say no effect what so ever so far. I called Dr's office and asked nurse what made them come up with this particular dose of IVIG and the answer was that it was recommended by hospital infusion center. I am at a loss??????? We are fighting against time as my son is moving into adulthood and PANDAS treatment option is running out as it is. What are my options? 1) continue with 40 gram IVIG for 75 kg boy and look for improvement. Is it worth waiting for months of treatment at this dose? 2) start over with other Dr in S. Cal area who would accept insurance and would be willing to do high dose IVIG ( but Who?) 3) travel to Dr. B?? in this case do we need to start all over again with blood tests??? 4) please give me your opinion. My son is on Augmentin XL 1000x2 and doing great but I know he has some more distance to go before he can become the boy he used to be before this mysterious illness took him over. Thank you

His regular ped said nummular eczema. Pityriasis rosea with no Herold Patch or tinea Corporus with no central clearing. He said it definitely was not a reaction to the antibiotic. He ordered us some Ativar (a souped up Benadryl, basically) for the rash and itching. Also, it helps him get to sleep, but that's not why it was prescribed. As per Wikipedia.org one of IVIG side effect is dermatitis - usually peeling of the skin of the palms and soles. Thank you for sharing your son's experience with IVIG. My son had problem sleeping because something that happened 2 yrs ago bothered so much and it was 6 months ago. It was during his adjustment period after his weening away from his ssri meds. I was very very scared but soon his body adjusted and he does not have those flash backs any more.

I only just began to make connections with adrenal insufficiency tendency with my son. I am going to test my son with ACTH stimulation test and /or salivary cortisol test. I will of course look into the tests you have done for your son as well. I always suspected that there might be some hormonal imbalance with my son when he was much younger and I took him to endo doctor but came up with nothing at the time. ( It was more than 8 years ago when PANDAS was unheard of and all these tests were not available) Some parents found Spironolactone useful for very male boy tendency. (If you want I will try to find more infor on this med and email you why this med is being used ---something to do with Dr. Wakerfield(? wrong spelling?)who explained why boys have more AUtism than girls and got into so much media circus. ( I happen to be one of his believer) Anyway, my son is in opposite end of Spironolactone needer as he is in constant craving for salty things (as strange as it may sound he really does crave salt especially at PM) If this is all somehow connected, his treatment would be that of prednisone. Autism is just figure of speech here, I am not saying autism has anythinhg to do with what I am saying but adrenal study was done only with base on autism because pandas is still at infant stage as far as research goes as to Autism that cover very broad symptoms and has longer and deeper studies) My son has done all kinds of blood tests as per his Ped doc a month ago and this doc has ordered IVIG (insurance approval pending as per a letter I received today) so there much be something not right about my son's tests result (I did not see them yet) otherwise IVIG would not have been ordered. With or without IVIG path, I am going to go ahead with adrenal exhaustion path with my son.

We are going to go after this issue as well for my ds has consistantly high eosinophil count with intense salty food craving. ( popcorns, chips, salted nuts) Does yours have this issues as well?

My ds has same symptoms as yours when he is in exacerbation. I have to say what he wants me to say and asks me same questions over and over again until I answer correctly. He improved so much with clindamycin his ped prescribed I knew then pandas was right path for us. We are not out of woods yet but here is what I went through with my son during his exacerbation. He did not get better right away on antibiotics and it took him almost 10 days to see initial improvement. A few weeks ago my son was having, it seemed, another down fall with controlling OCD so we put him on augmentin XR 2000 a day and again he stabilized only after almost a week (with activated charcoal on board this time ) ---My ds somehow used to get worse while he was on short term antibiotics when pandas was not in the picture. I do not know above infor is helpful to you or not but I know that in my all heart you are doing the right thing by caring and loving your son. God bless you

You have been like a guiding light for me. Thank you so much. I am calling UCLA first thing Monday. thank you again.