queenmother

Absolutely. I would turn every stone to rule out every infection on this planet before accepting a purely 'mental' diagnosis. I missed so many of those cues for years, the fears, the paranoia, the obsessions....always thinking that they were just a phase that my very bright, imaginative daughter was going through. When a teacher complained about her humming in class, I just thought it was because she loves music and wasn't particularly challenged in school. I missed so many cues because I did not know one thing about ocd and tics. As she got older and the tantrums grew more intense and the behaviours became more bizarre and the emotions became more unstable, well, I really wasn't sure if it was hormones or if I should start to worry about a bigger problem. By age 13, we clearly had a big problem and I kept telling the doctors that there was a pattern to it. I just couldn't figure out what triggered the pattern. And I could not find a doctor who would listen to me that when I said there was a pattern. Finally, at 16, we know that she has several triggers that set off an autoimmune reaction....PANS. We went through the hospitalization and much of what you mentioned and none of the doctors at the major university hospital helped us with anything. They simply wanted to drug the issues. Fortunately, our local PA ran infection panels and we were able to start treating the triggers. And guess what? My daughter is much better! We are early in our journey (and it will be a long one) but I see that we are finally on the right road. Get your daughter tested ASAP! Do NOT accept that she is destined to live like this. There is hope. QueenMother

GABA and magnesium citrate are ABSOLUTE NECESSITIES!!!!! (Make sure is is plain GABA)Sounds like glutamate issues. QM

fwiw, I can't take minocycline either. But I have no problem with doxycycline nor does my daughter. I think the minocycline is better and works through the nervous system (or so I'm told) but I just cannot tolerate it at all. Maybe you could try doxy instead. When my daughter took doxycycline for acne, her very-strange-purple-stretchmark-striation rash cleared up and went away. This was before we knew anything at all about Bartonella..had never heard of it. Now we know from her titers that she indeed had Bartonella and she is back on doxy. I only know about the Ignex testing, sorry. QM

Mmmm...I'm pretty new here but my first reaction is to do a trial run of an antibiotics that covers a broad spectrum....just to see if it helps. I'm sure a lot of people cringe at giving unnecessary abx but,given that so many kids don't initially test postive, I would want to give it a shot. Doxycycline is good for lyme and mycoplasm and helps with strep though it is not the first choice for strep. Azithromycin is good, too. Amoxicillin and Augmentin show up resistant for us and are useless but may work for your son. I'm sure you'll learn more from the more experienced folks on here but I would have to try. The longer it goes, the worse they get and the harder they are to get rid of. Have you tried antibiotics? QueenMother

Frik, Have they done any brain imaging to rule out lesions of the hypocampus or amygdala? I don't know much about it, but I know there are some forms of encephalitis that can cause lesions and, since we are dealing with brain inflammation in PANS/PANDAS, I would think the doc would want to check for lesions in areas that control laughter. QueenMother

LLM, Interestingly, my kid has COMT and MaoA as part of her equation, too. We had ours done thru Yasko. I have to go back thru my copious notes, but I think I recall something about the BHMT 1 as having something to do with the body's ability to clear infection, as well. I am working through the doc list and finding long waits for appointments. It is getting harder to deal with this as my daughter gets older and more independent about what she will and will not do and feeling like she's just 'mental'. QueenMother

Beautiful, ladies. And much needed. I was just making preparations to throw myself a big, ole pity party and then I read your posts. This is all so overwhelming and draining but it is worse for our precious children. I just can't believe how little hellp there is available. It would be so much easier to deal with all of this if the medical profession simply acknowledged that it is real. Thank you. Going to hug my daughter now. QueenMother

Much as I do not want to confuse you, melatonin is a methyl donor and, if your child has a COMT gene mutation, methyl donors like melatonin will actually agitate your daughter. I learned this the hard way; my daughter has the COMT mutation. Safe for all genetics seems to be magnesium citrate and GABA. I compound a capsule of about 150 mg mag citrate with 200 mg of GABA (make sure it is just GABA) and give an hour or so before bedtime. It helps tremendously. Much higher doses can be tolerated but I find this works nicely for my daughter and she is 16. Bedtime has always been difficult but this truly calms her and things are much easier. Infections elevate glutamates and the GABA helps to balance it. Occasionally, if I see a reeeealllly bad night coming down, I make her a sup of chamomile tea aand put a drop of Valerian Root extract in it...a drop or 2, NOT a dropper. Since I have been doing these things, she gets to bed with much less effort and sleeps through the night for the first time in her life. QueenMother

TMom, Could you tell me more about the Murphy article or post a link? I tried to google with limited info and came up with a gazillion Murphys, especially Murphy's law. The irony was not lost on me. :-) Nitshel, I am so sorry. I wish I knew something that would help. I, too, am terrifed of those psych-pharmaceuticals. Does your son take magnesium, GABA, and B vitmains? Magnesium citrate is a MUST in my house. I don't know how these affect Risperdol or zoloft or any of his other meds but this all sounds very dopamine to me. Those neurotransmitters (dopamine and serotonin) are so affected by bacteria and viral loads. When my daughter was hospitalized, they placed her on zoloft to increase her serotonin and refused to check for PANDAS. After escaping (I meant 'being released'), our local doc did the infection panels that show active and chronic mycoplasm along with lyme, bartonella, and HHV6. As we have killed the mycoplasm et al (a work in progress) and increased vitamin D (increases serotonin, and the weather is better (sunlight increases serotonin), and she is back to eating again, I now think that her serotonin is TOO HIGH. OY! It is like walking a very delicate tightrope in a hurricane blindfolded. QueenMother

LoL!!!!!! I catch those ironies, too. At our house, I have spent months watching my daughter dwindle away, begging her to eat. This week something shifted and the binging started so now I am having to talk her off the ledge to NOT eat. Even she looked up at me (as she sat on the kitchen floor cramming cookies into her mouth) and said, "Well, this is certainly different, huh?" Btw, you'll be so happy you have those genetic results. So very helpful. QM

LLM, Yes, my daughter sounds like CBS but no mutation. And we can't figure out just why she acts like CBS. She totally can't handle Alpha lipoic acid either!!!! She always shows elevated taurine, too. Still trying to figure it out....along with everything else. QM

So when did you move into my house? I know where you are emotionally right now (and physically) but this will pass. Just remind yourself that you have to remain hopeful because you are your daughter's only hope. (I keep picturing myself as Obiwan Konobi in Star Wars as Princess Leia keeps saying, "Help me, Obiwan Konobi, you're my only hope.") I think my daughter rages more at me because I'm her mom and moms are supposed to fix things. I am still trying to forgive myself for not putting the ppieces together earlier, before things got to this point. And I am trying to forgive the legion of doctors and medical professionals who thought that I was over-reacting or who thought I was an inadequate parent or who led me to believe that it was all mental/behavioral/psychological. My heart is broken not just for what we go through now but for the precious years that my daughter has lost. I miss those infectious giggles and long to see those sparking blue eyes filled with wonder and love. Now I look to see how dilated her pupils are as she growls how much she hates me. But I am determined to get her back. I refuse to believe that this is how she will be forever. All the more seasoned moms on the forum can give you much better advice than I can and I agree with evrything they've recommended. We are early in our journey to recovery. A few things that are working for us....the NSAIDs motrin or advil are helping us get through the really rough spells. I save them until I see things going to a bad place and I can usually tell when I see those dilated pupils and see her getting amped up. I also compound my own capsule of 200mg GABA and 100mg magnesium citrate. (Make sure it is JUST GABA with nothing else on the label. I like Holistic Health brand) I give this to my daughter nightly and it seems to help her and we aren't having the nightly battles as much. Don't give it until after homework is done because it can make her sleepy but try to give it at least an hour before bedtime. GABA helps to balance out the glutamates (which is how lactimal works, I think). We had her genetics done through Yasko and my daughter is COMT++ which means that she cannot tolerate methyl donors. Melatonin is a methyl and actually gets her more amped up instead of helping with sleep. Caffeine, theanine, chocolate, curcumin, gingko, trimethyl folate, anything that says "methyl".......all methyl donors we stay away from because they all contribute to more bad behaviour, raging, less sleep, mood swings. (I do give a sprinkle of trimethyl folate because she has to have some for MTHFR gene mutation but I give it early in the day and not every single day now) I don't know how your daughter's genetics figure into this horrible syndrome called PANDAS but, for us, it is part of the puzzle. My daughter goes totally berzerk when we have tried NAC which is highly helpful for some. I don't know why but we have tried a few times and it just drives her over the edge. I never give Tylenol because it destroys glutathione and good glutathione levels are critical in healing PANDAS. My daughter has low glutathione levels already probably due to earlier years of my not knowing that the tylenol destroyed it. (All those years of vaccinations and the pediatrician always gave tylenol following the shots....the worst possible timing ever...but now we know) It's all so overwhelming. Every kid is different but I hope you find things on here that help. I know I have. And the support alone has been a lifesaver for me.I have always been very involved and social and now I find myself somewhat isolated because of the chaos. The fear of committing and obligating to things and making plans too far in advance has changed our world. My world now is trying to get by from day to day and always praying that today will be better than yesterday. And sometimes, quite honestly, it is hour to hour. Everyone on this forum seems to get that and I am grateful. It will get better, Tu4four. We have to believe that. QueenMother

WMSMom, I just saw your post regarding doc in Charlotte. THANK YOU! I will check her out! QM

Oh, I forgot to ask if anyone on this forum has tried colostrum or Cumanda or coconut oil? I have been researching and am curious as to whether any of these are as good as they sound. CDC-Atlanta says that coconut oil is more effective (98%) than anything else on the market. Thank you all! QueenMother

Okay, the other shoe dropped. Or should I say she took it off and slammed it down. Repeatedly. We are exhausted. The doxy was doing great until it wasn't. I know from reading posts that it this is not unusual. Is there any particular pattern that seems common? We are supposed to change over to Omnicef now but I am terrified to do this until her AP exam on Monday because what if that brings on another round of herx? Meanwhile, we are just worried about getting her through the exam. That seems to be our life for the most part...doing whatever we can to clear the next hurdle. And each time gets harder. Thank God, school is over out in less than 3 weeks here (private school). Since she is resistant to amoxicillin, our local says it is time to try Omnicef. Any of you have any experience with this one? And do hormones aggravate it? because I think that is part of it, too. At least the timing seems suspect. I'm sad. I'm exhausted. I'm emotional. And I keep reminding myself that it isn't about ME....but I'm the one she depends on and I have been having a bit of a royal pity party tonight. How do you moms do it for all these years and some of you with more than one? QueenMother

So I don't understand it, either. Brain inflammation is brain inflammation, regardless of the underlying cause. Maybe if they changed the name of the disease to something more specific. When my daughter was hospitalized, I begged them to check for PANDAS. I said that I truly believed that could be PANDAS because this last big exacerbation started with the flu. They blew me off and told me that the flu wasn't strep-related so it couldn't be PANDAS. I told them to check for PANS then and they literally almost sneered at me like "Yeah, this mom just can't accept that her daughter has a mental condition." They would not even entertain the idea. Yet they could not find a reason why her sed rate was elevated and her pupils were HUGE and she was ocd, anorexic, raging, and delusional . Once I got her out, I begged our local doc for tests and that's when we found out her mycoplasm levels were high and she showed chronic myco, along with lyme, bartonella, HHV6, and we don't know about coxsackie yet but suspected. Amazing that she's better on antibiotics. So why do docs have this reaction? They never stated in the book what caused Susannah's either.

Oh, PandasPhilly, I'm so sorry. There were many things that struck a chord with me in the book but we did not have the seizures or the sudden decline in faculties that the writer of the book had. As bad as it has been for us, I cannot imagine what you guys must have gone through. Is there now a straight-on NMDA test available or do you have to do the spinal tap for that? And when your tap was negative, where did you go from there, if you don't mind catching me up. If you don't want to post it all again, would it be on a history of your posts? How is your son now? Sorry for so many questions but we've been through and I am trying to learn EVERYTHING I can. My thoughts are with you. QM

I just this weekend read a book that some of you may find very interesting. I don't even know how I found it on my Nook but I am so glad that I did! The book is Brain on Fire-My Month of Madness by Susannah Cahalan. It is a memoir written by a 24 yr. old NY Post reporter, a true story, about her medical mystery which turned out to be an adult (and extreme) version of an autoimmune storm similar to PANDAS/PANS resulting in brain inflammation. Started with mild ocd and fast-forwarded into full-blown psychosis and hospitalization. Fortunately, a wonderful doctor from University of Pennsylvania found the problem after NYU Medical Center contacted him for help. IVIG and plasmapherisis and steroids saved her life just before she was totally lost. I love to read and never have enough time to but I accidentally stumbled on this and read it in less than 2 days. I am so happy to know that there are doctors out there who are recognizing the brain inflammation/autoimmune aspects. As she points out in her book, how many people have been committed to psychiatric institutions or written off as 'mental' or 'autistic', when it is actually brain inflammation? So glad I stumbled onto this book!!!!

You may also want to have a med sensitivity test. My daughter tested resistant to amoxicillin which is probably one reason we have ended up where we are today. In reviewing her past med records, I noticed that every time she was given amoxicillin for sore throat/ear infection, I was back in the doctor's office within a week. I was generally told that it must be viral if the amox wasn't working. There were years of this documented and a few times that we ended up in ER where they gave her a shot of roceftin (sp?) and she would get better after doc saying it was viral. Just something to ponder with all the other mysteries of this PANDAS/PANS stuff..... QM

I have noticed this firsthand! As a matter of fact, I give only probiotics that do not contain strep thermophilis. However....we were on a nice roll with the doxycycline (as I posted on forum a few days ago), and then we had a rough spot. I was scrambling to figure out what was different or if this was delayed herx. The only thing different was that the Princess had started making yogurt parfait with fresh strawberries at night. After a few months of eating disorder, I was thrilled that she was doing this, especially since she needs probiotics because of the doxy. I started looking for answers and discovered that ALL dairy has strep thermophilis as the active culture that causes it to become yogurt, kefir, etc. I did my own little experiment. No yogurt for a couple of days resulted in a happy daughter again. Not scientific but interesting to note. Mmmmmm.......... QM

Another old mom here who watched the original. :-) The COMT gene is also important to anesthia and pain meds. If you google "COMT and anesthesia", you get several medical articles stating that, because COMT regulates dopamine pathways, the enzyme also regulates pain and pain med. Opioids (morphine-based), in particular. If you have the COMT VAL/MET (as we do), much lower doses of pain medication is needed as it doesn't clear as quickly due to the sluggish COMT enzyme. It is all so very complicated. Calling Dr. Bombay!!!!!!! And trying to twitch my nose from side to side. QM

I am researching docs now so I really appreciate your input. I was interested in Dr. Latimer because, well, I guess she is closest, and I hear her name a lot. I read her site, however, and some of the comments were not complimentary. Some were downright scary. Since many of you have experience with the good ones here on the East Coast, please share your expertise. Have checked pandasnetwork and ILAD but don't know which way to go. Dr. B sounds promising but not LLD and looong wait. Hard enough to find a good PANDAS doc but it narrows the field even more to add in Lyme. Oy....my brain hurts. Thanks, again. QueenMother

DeDee, I was so long on my previous post that I forgot to respond to your mention of the lyme bands. #41 and #45 were both positive. #31 and #35 were both indeterminate. The overall results were negative. What does this mean? Thanks so much! QueenMother

I seem to recall some eye movement and blinking related to dopamine levels. Bacteria affects breakdown of dopamine and serotonin and, depending on his genetics, this could be what is happening. Wish I knew more about it but its worth looking into. So sorry for what you are going thru. QueenMother

Okay. My curiosity is piqued. My daughter was doing so much better after taking doxy and we were living the dream for about a week here. To the point that she actually was eating like a normal 16 yr old girl. For the past two nights, she made a parfait of strawberry yogurt layered with graham cracker crumbs and fresh (finally in season) strawberries. We were thrilled becasue she has been battling eating disorder since a bad bout of flu in December and has been restricting all sugar.. Today she is back to edgy and ragy and body image obsession. Is it possible that all the sugar from her 'parfait' is allowing the doxy to cross the BBB and is hitting mycoplasm in her brain? She acts very 'herxy' today like she did at the beginning of the doxycycline. Could this be possible? Btw, 4Nikki, depending on the genetics, it could be the methyl donors causing a problem in addition to the strep. My kid is COMT++ and cannot handle chocolate and caffeine because they are methyl donors. In some cases, it is not the sugar as much as the chocolate, caffeine, and certain additives. We even have to be careful of melatonin, curcumin, zinc, theonine, and methylcobalamin..all methyl donors. The body is just a big ole chemistry set! QueenMother