pathfinder

memom I hear your pain and broken heart and my heart goes out to you and your family. I have 16yrs old son on the same boat as yours and with pretty much same history as yours. My son had blood test May 27th ( one day after my mother passed away but I still kept my appt at the medical center ) It was my son's ped trying to find a way to have insurance cover my son's IVIG, I think. I have not heard from the medical center since then and therefore I assume that there is not going to be any IVIG soon. ( But I still send my many thanks to my son's ped for believing in pandas and going out of his way to fight for my son.) I still think we are the lucky ones regardless our struggles at the moment for we know what is wrong with our kids and that in itself is comfort as we have a road map in front of us instead of blankness. ( I went through so much just to find out what was going on with my son last 8 years) Let's not lose our hopes and believe in tomorrow. My heart is with you all the way Michelle

My ds16 had a major strep/mycoplasma p. issue back in Feb this year. Physical illness was one thing but his behavior was off the wall with all that were going on with him at the time. His ped prescribed him with Clindamycin and my son came out of his OCD with rage in less than a week. It was a wow experience for us. I was very worried like you about this medication but it was a very very positive experience for us. ( he did have a bit of stomach ache but it was not that bad) Michelle

I have a 16 yrs old son with anxiety, intrusive thoughts ( can't let go and forgive ), and highly allergy to practically everything. I can totally relate your situation as I am in a very similar spot. It makes it that much harder for a older kids like ours. I don't mean to offend anyone but I can not help myself from contradicting from your dr. . I believe pandas is as serious as any life threatening illness and I would not stop to pursue the right treatment for my son (only problem is that I don't know what is the right treatment) I wonder if anyone has right to decide pandas is less important than any other serious illness ( maybe insurance co can ) We go on fighting for our kids to get the best treatment modern science can offer. My heart goes out to your daughter and you. thank you for sharing your story. From Diamond Bar

My ds16 has some issues that can not be pin pointed to anything as of yet for about 8 yrs. I posted some of his symptoms in prior pages if you want to compare notes. I was never told by his psychiatric anything definite about his diagnosis but was told that my ds had adhd with OCD tendency. No meds seemed to work ( some better than others but still not good enough to stay on) I have been looking for answers as it is apparent that my ds is not growing out of his problems as we hoped he would once he is in his teen and mature. I have had phone consultation with Dr. K a few weeks ago and he thought my ds might have pandas or bipolar.( because of his rages) He told me only way to see if IVIG would work on my son is to try steroid burst. Even then the success rate for kids in my ds age group is not high ( I suppose a very little data to go from). Dr. K told me not to bother with antibiotics as for ds age. I visited 3 doctors for prescription for 5 days steroid and got 3 refusals ( they will not even bother to call Dr. K and discuss pandas possibilities.) 2 of them gave me phone numbers for psychiatric as if I did not know one of the most well known one in Southern California who treated my son for last 6 yrs until I gave up on medications 6 months ago. I would do anything for my ds so he could lead a happy and normal life, but I just don't know if I am doing the right thing by pursuing pandas. If I had known about pandas a few years ago, I would have been first one in line in front of drs office for IVIG ( stay up all night with tent in front of the office) My son is in critical moment in his life as he is entering 12th grade next year and he has only few months left before he has to take SAT if he wants to go to college and he does ( as strange as it sounds even to me with his B- grade everage but he still has not given up hopes for his future and that means everything to me) It still hurts me to look back and remember how he was such a perfect child and hopes and dreams we had for him before he became ill with obsessiveness. I just don't know what to do. I wonder if there are kids who had successful pandas treatment in their teens. Thank you for reading my story.

I am happy that you are staying. We need you here. DB

Your son sounds a lot like my son. How old is your son?

Thank you Stephanie2 very helpful

I read it from yahoo groups that Spironolactone lowers testosterone and therefore being used as sort of detox agent for Autism kids. Lowering testosterone supposedly reduces aggression and rage as well. I would really appreciate if you would update us with your son's progress on this med. I have this med line up for plan B in the future.

My family Dr. did CBC on my ds 3 months ago when ds had mega swallowing problem. It came back as nothing wrong except his eosinophil count was high. We did not do biopsy but did upper digestive x-ray and it came back as marked irritation on esophagus. This was all happening when he had a major rage episode.

Ghostrider I thought you were seeing Dr Gupta in UC Irvine for further help? Did you see him already but was not helpful? Update information on Dr Gupta, please. from Diamond Bar

I was order to have this test done by Dr.K before our phone consultation with him. He requested for 3 tests and this being one. DB

My Ds16 had exacerbation of pandas symptoms three months ago. It was more than ocd which was alway main issue, but this time it was with rage with aggression. He broke doors, plates, and glasses. He pushed me and left me with bruise. ( this never happened before) His blood tests done 2 months after his exacerbation came back with high ASO titer and high Myco. P ( also with viral rashes) DB How did you treat? Andrea My son was treated with 10 days clindamycin. His aggression went under but ocd remains ( in less degree)

My Ds16 had exacerbation of pandas symptoms three months ago. It was more than ocd which was alway main issue, but this time it was with rage with aggression. He broke doors, plates, and glasses. He pushed me and left me with bruise. ( this never happened before) His blood tests done 2 months after his exacerbation came back with high ASO titer and high Myco. P ( also with viral rashes) DB

Nita My heart goes out to you as I went through something like this only about a month ago. I think you are much better mom than I am to have figured out and made connection between his emotions to his behavior. I did not know what was wrong with my son16 when he was 13 yrs old and I sent him away to a boarding school to enhance his social skill and to get good grades for college entrance. It was one of the biggest mistakes I ever made in my life besides not making connection with pandas sooner. I learned that there are kids with bigger problems than my sons. ( drugs for one) I too worried that he would end up in a wrong place if he could not contain his anger and his controlling, insisting way (still worry) but things have gotten better and I once again feel there is a good future waiting for him as long as we don't give up on him. I will not give up on trying until I know I did everything there is and that includes everything, I mean everything. There are many meds that could help your child while you are trying to figure out everything that is going on. My son was on SSRI alone for 2 yrs ( 5 different ones) but when he turned 12, ssri was not good enough to control his anger and other symptoms( in short just like your son's -- almost same)so Abilify was added. He did pretty well on them until I started to notice other problems. While I don't think these meds are answer, I do belive in doing everything for my child including medication if necessary. Since my son's symptoms almost mirror yours except mine does not have separation anxiety, I would relate my son's medication experience with you if you are interested. (PM me) Let's count our blessing with our kids strength. Our kids do not have many other challenges. There are other parents who would die to have kids like ours. ( I almost believe in this myself sometimes) You are not alone and help is coming ( somebody out there is studying and working to cure our kids condition, this I am sure of) pathfinder from Diamond Bar

After. Always after.

I would like that very much. Thank you

I have my son's blood test in front of me ASO titer 335 (out of range) DB antibody normal CBC normal except raise esonophils count ( it has been high on last CBC two months ago) Sed rate by modified westergren normal mycoplasma p IGM normal myco p IGG 3.79( out of range) My questions are 1) if there are inflammation involved in pandas, Sed rate should be high? 2) Dr. prescribed clindamycin and my son16 has been on this med for 5 days with no difference in his behavior. It sure is a whole lot better than when he was ill, but no better than usual. ( He got sick in his throat--could not swallow--cold sweat--severe headache--icy cold hands and feet, then worst rage and OCD ever in his 16 yrs of life starting 7-8 weeks ago then got better( back to usual) about 2-3 weeks ago. We did blood test when he was better which was about 2 weeks ago. 3) ibuprofen made no differences I am confused and need advise. Do you think his blood test result is enough to take my son to pandas path seek out pandas Dr.? We have appt with Dr. K and I am going to keep it but I still wonder. Thank you

I am very sorry again. Since I am fairly new to pandas and this cafe as well, I did not realized that you have a lot more experience with this matter than myself. I look forward reading your post in the future. Thank you

trial and error for every kid reacts differently do these type of drugs. prozac worked like wonders for 5 months before it went down the hill with horrible side effects celexa did not do anything paxil worked very well( in fact it was best ssri to my son's ocd symptom, was very happy for a year but rage began to crept in around age 13, 7th grade---I suspect it was from hormone as well) discontinued because paxil cannot be used with other med. zoloft-----began this med when abilify was added to address my son's rage, odd symptom. strattera made my son 10 times worse with his ocd risperadal made my son very angry abilfy made my son gain a lot of weight and made him very sleepy even at a very low dose. I would give him 3-6 mg every night and he still fall asleep in his class room the next day even with help of concerta. very very powerful med. I am not against medicating a child if she or he needs. ( if there is anybody who talks against this type of med, she does not have a child like mine.) But I advise you to be on guard. Psychiatrist can not just come up with a medication that are not there to begin with. He could only treat your child with what is available in medication pool. Pandas or not, Dr. could only address its symptom as it is like any other ocd or odd symptom. Educate yourself about these meds and make a chart ( food, vitamins, med, illness---stressful events). Difference between pandas child from other child with same symptom would be pandas child is involved with strep infection while others are not so you need to factor in you child's infection into the whole picture of medicating your child( which no psychiatrist is likely do ) I am sorry if I sounded like a teacher lecturing but I really wish you and your child best and don't want you to repeat my mistake which was to sit on a combination of medication that was not really helping my son but did not know what else to do. thank you

Thank you very much for your replies. My son is going on a medication called "Clindamycin" as per his high ASO titer. I am a little worried as he does have frequent diarrhea histories but we do what we can. Thank you again

As I have mentioned on my previous post, My son16 had a major OCD, maniac episodes staring a month ago after he complained about his headaches and stomach aches along with feeling that something was stuck in his throat. He always had some rashes in his body one time or the other but this time he had a major break down of rashes on his chest. ( I can not forget to mention his cold sweat, no fever but sweating all the same) He was dx with adhd with OCD tendency mood disorder at 8 yrs old after he developed some odd tics with very disturbing obsession followed by fever and illness ( strep throat as well but then again he had strep throats many times over with ear infection thru his young childhood) He was put on medications ( mainly ssri with concerta) and later added abilify when he turned 12. He would have been on these medication if they were working but my son was not motivated and slept through all his high school class ( so I felt) not to mention his attraction to dark things ( I confiscated his i-pod for listening some group called Insane Clown). I weened him from these medications starting last Nov and completely stopped them as of beginning of 2010. ( he was on 25 mg zoloft alone for 1 month only in Dec) I wrote journal for every day for last 5 months to document his diet, med, and behavior. He did fine for 2 months and he became very ill at the end of Feb with symptoms I described. As his physical symptoms subsided he had mental breakdown. He walked around for hours in the evening or early in the morning cursing and screaming in a loud voice. He was going to revenge everyone who ever wronged him. He dented 2 doors, broke number of plates ( I placed his plate in the wrong way) his foods flew around in the kitchen(I prepared his food wrong) he spited on his father 3 times, he pushed me and gave me bruise in my arm. I could go on for hour describing how seriously wrong my son was but instead, I just tell you that we wished there was a law in California that under age kids could be hand over to government facilities with no questions asked ( they were mean to prevent child abuse in some states but I remember reading somewhere that teens were being dumped by their parents in state of Nebraska) or we had to find some placement for him. This went on for about 3 weeks. About 8 days ago, out of nowhere, he stopped his OCD and rage. ( he still shows the sign but no more than usual) He became interested in life again instead of plotting revenge against a boy who neither name nor face he remembered. I could touch his books and things without his rage. He is not asking me the same questions over and over again ( maybe 3 or 4 times even 5 times but still within bearable range) He is reading Alice in the Wonderland Through looking-glass (complaining that it is most boring but still reading and caring his grade) Where am I going with this? I never made connection with his various infections with his behavior because he was on medication and I looked for answers in medications. Whenever he had out break of his symptom, we thought his medication stopped working and therefore looked for different medication. By the time new medication started to work which is in 3 or 4 weeks, his symptom alway got better. So it really was not medication that was working but it was infection that was fading out of his system after it played its course in his body therefore improving his symptom ????????????? Does it explain how he became better after his major break down without medication this time around????? And if anybody is wondering, he is not bipolar. His issues have always been OCD and ADD (which I could live with) and as I mentioned he did not have ADD before he began his OCD with tic. I still don't know if he has pandas but I know for sure that he had huge melt down after his illness which did come from strep ( according to blood test done last week ) and I am a little suspicious that virus might have something to do with his recent break down as well for doctor confirmed that his rashes were from viral not from allergy.( strep+ virus = perfect storm) I am also sure that this melt down did not come from discontinuation of medication as he had medication holidays( last one being just last summer) time to time without huge incidents like this.(in fact, it was never this bad) I will update my son's progress and yes with appt. with Dr. K as soon as I can arrange as we have my son's necessary blood tests are ready. You mothers are my inspiration and I hope to give you back something in return by sharing my son's story as he is 16 yrs old and we had longer walk than most of you. Thank you for reading pathfinder from Diamond Bar

I tried with my son but discontinued after 2 months as he kept waking up with nightmares. Every kid reacts differently to LDN but make sure you start with very very low dose and be careful for it does have side effects. I am going to wait before I venture into this regime again. Thank you

momto2pandas I had a meeting with Dr Greene today and I told him that I got a referral from a pandas mom I am connected through internet. He had this dazzled expression and mentioned your name( Which I do not know is correct but how many pandas mom are there in Highland?) It was such a beautiful day at Highland and snow cap mountain scenery. Thank you for directing us to Dr. Greene. It saved us so much time and pain. And yes, You could get prescription from Dr. who does not have California license. I have a sister who is child psychiatrist in DC area and she sometimes prescribe meds for my son and I have never had problems filling them. You can not get triplicate prescription from outer state doctor though. Thank you

I emailed Dr. K about my son and he emailed me back with his requirement of 3 blood tests(ASO titer, AntiDNase B Ab titer, and Mtcoplasma pneumonie lgG & lgM) even before I set up for phone consultation. I took my son to see our family doctor regarding these blood tests but he refused and told me to contact Mr. K directly. Where and how do I get these tests? My family doc never heard about PANDAS and he was very uncomfortable. Thank you