Stephanie2

Sounds about right. Keep us updated! I really think this board needs to hear more about the DAN protocol b/c they have so many tricks up their sleeves for pandas/pitands. I am going through a similar reaction with my 2 year old...just started him on vancomycin last night for possible bacteria in his gut and boy is he a mess today. I am DYING! I love him to death but can't stand to be around him right now! It's like terrible 2's times 10!! Ugh! I guess I am lucky that my 5 yo is under control at the moment...sigh. Stephanie

I think you may be referring to one of my comments regarding my son's doc's recommendation to give claritin and pepcid ac. One of them blocks Histamine 1 (H1) and the other blocks Histamine 2 (H2). I don't fully understand it, but according to the doc theoretically, pepcid should contribute to the blocking of histamine, thereby blocking an immune response which could further exacerbate pandas symptoms. I don't know if prevacid is in the same class as pepcid, but I imagine that it may be since they both block/reduce stomach acid. Maybe the prevacid has helped your daughter and therefore I would watch as you wean off. If you notice a worsening of symptoms then maybe you should keep prevacid on or maybe you should try pepcid ac which is over the counter. You have just made me think about something. When my younger son (he is now 2) was a baby he had what I thought to be terrible "silent" reflux. When I gave him prevacid he became a changed child, no more screaming in his crib, etc. SOOOO, one would assume that the child's tummy hurts when he lays down and the prevacid helps block stomach acid from hurting. Fast forward to 12 months, his reflux appears to be going away so I stopped prevacid and sure enough he was just fine. Now fast forward to 15 months and he develops eye tics, irritability, etc. He also had strep in his stool analysis that same week. Hmmm. I didn't know about pandas at the time and he was so fussy that I started to wonder if his reflux was coming back!! Turns out it was pandas! My point is, is it possible that during that first year that his episodes of fussiness and screaming when left in the crib was really due to PANDAS!!!!!!??????? I mean, he NEVER spit up, but prevacid turned his irritability around! I guess at this point it doesn't matter, but your post sure did make me think. Do we all need to try a little prevacid in our kids???? It would be interesting for all of us to get together to do a little trial... Stephanie

As you know my son's neopterin/biopterin came up very high, as well, indicating brain inflammation (which is why he is responding so well to spironolactone). I am bumping this up, maybe someone else has some input on this. Stephanie

I get the feeling that the doctors kind of consider pandas/pitand interchangable. I mean, almost anything can be considered pitand if you think about it. What about the reaction our kids get to yeast (hyperactive, silly, drunk) or the reaction that some kids get with bacteria in the gut (aggressive, mean), mycoplasma (tics) and the list goes on. The way I look at it, pandas actually falls under pitand and I don't really know why it is a distinct diagnosis. Maybe b/c it is the most studied? If you look within the autism community, they/we consider all behaviors to have a biomedical origin. pandas is just one of those biomedical origins that the DAN doctors focus on. My point being that either way, whether the neuropsychiatric symptoms were originally exacerbated by strep or something else, if the brain is being attacked by antibodies then a good pandas/pitand doc will make the diagnosis based on the clinical presentation of the patient, along with relevant labwork. If it is autoimmune in nature, then immune modulation/reduction of inflammation needs to take place (along with trying to prevent further assaults to the immune system). If it is not autoimmune in nature (yeast/bacteria of the gut) then those need to be treated, etc. When my son gets yeast/bacteria he needs to take diflucan or vancomycin and he does not respond to ibuprofen b/c there really is not an autoimmune attack going on, more of a release of toxins by these microbes that goes to his brain to make him crazy! I would assume this would fall under pitand but is not necessarily started by pandas/strep. In fact, in treating pandas, that is how he ends up with these other issues (chronic use of antibiotics kills the good bacteria, allowing the bad bacteria/yeast to grow). These can cause symptoms which are just as bad, if not worse than pandas. Seems to me that pandas always progresses to pitand...

Yes, we used antibiotics but after a few months my 5 yo (and now my 2 yo) developed severe gut issues which brought about worse behaviors than pandas. So we backed down to a prophylactic azith dose and we are using spiro and IVIG. My 5 yo is doing well and my 2yo is doing ok, but he still has gut bacteria (we think...waiting on test results). The decision to use spiro came from our doc who has seen amazing results with it for pandas/autism.

No, I have not noticed them drinking or peeing more. However, I have a friend who's autistic son tried this drug and he was peeing his pants at the age of 4 b/c of the increased urination. also he was getting up multiple times to urinate. she stopped the medicine b/c of that. In our case the results are worth the constipation. Our doc said to just give more magnesium and vitamin c... Stephanie

We use vancomycin, but I believe our doc also prescribes augmentin for it. However, in our case augmentin did not seem to help, where vancomycin cured the problem within 3-4 days. A good stool analysis should include a sensitivity test to see what your particular yeast/bacteria will be sensitive to. I was also able to fight klebsiella with Oil of Oregano (Oreganol), which the stool analysis indicated would work. Stephanie

Forgot to mention, you should really do a very high dose of probiotics if your child is developing gut problems. A few of us on this forum use Custom Probiotics (make sure you get one without "strep" in it). Both of my children are now up to 400 bill cfu's per day (they are ages 2 and 5). Stephanie

My son gets worsening of OCD when he has klebsiella, gut bacteria caused by overuse of antibiotics. this can be determined with a stool analysis or a certain urine test. you may need to get a special doc to order it, the regular docs don't believe in this stuff... Stephanie

silliness, almost like he is drunk and can't stop laughing at inappropriate things. also, crashing his body into the couch over and over, or crashing into people. hyperactivitiy. I think that some of his verbal tics are related to yeast. I think for some aggression is a problem with yeast but not with my son. My son gets aggressive when he has gut bacteria (confirmed by urine and stool tests)... Stephanie

When my 2 year old received his 4 month DTaP vaccine he had a very frantic crying fit that lasted for 30 minutes that afternoon (nothing soothed him, not even nursing which was very unusual for him). Over the next few weeks he lost all of his babbling and completely went mute for a very long time. I know it was that particular vaccine b/c I had been spacing the vaccines apart. He later went on to develop early signs of autism until we discontinued all vaccines and started biomedical interventions. he is still speech delayed but coming along very slowly and he also has pandas. Personally, I feel that if you vaccinate any blood relative of a pandas child you are openning up the door for pandas or worse. My 5 year old went into his worst pandas episode after a polio vaccine! Who would have thought! I don't mean to frighten anyone or sound like an anti-vaccine wacko, but I have seen enough in my house and we have all suffered quite a bit and I really believe that vaccines have played a big part in all of our problems... Stephanie

So are you saying that your DS2 developed kawasaki and then went on to develop pandas related to that incident? So either there was really bad strep, or coincidentally everyone was susceptible or pandas is a lot more common than ppl think. I know that my boys and my neices all exacerbated around the same time last year and both of my sons were positive for strep around that time (and frequently interacted with my neices). So either it was the type of strep or it was the genetic susceptibility in our case. I always assumed genetics in our case, but now I wonder... Stephanie

Well, my kids each had issues along the autistic spectrum so I started out on many of the yahoo autism groups (the ones dealing with biomedical interventions). there is a lot of pandas being discussed b/c i think pandas is one of the things that pushes the kids onto the spectrum to begin with! I believe that when my 5 year old is in pandas he is like an asberger kid. A couple that I like are titled: mb12valtrex and abmd. you can search for them on yahoo. Stephanie

Yes, it really is a vicious cycle when you have two, and wow is it overwhelming when they both go into an exacerbation at the same time! I don't know about you, but both of my kids really lose it. One falls to the floor crying and I have to pick him up and carry him and hold him like a baby (this is my 5 yo). The other one goes into a psychotic rage and throws toys and hits me and at the same time looks very confused about what he wants and why he feels this way (2 yo). They are both such sweet happy kids when not in exacerbation so it is just so intense. It is so hard keeping thier germs separated...let's face it - impossible. I have tried! I even tried keeping them out of school for a couple months but they still got sick just as often and gave it to each other. So, I have them both on prophylactic abx but it is just not enough at this point. I recently started spironolactone for both (you can see my other recent post about this) and it has really helped alot, but I still can't get on top of the darn impetigo! I may go see an infectious disease doc soon. Stephanie I have been dealing with PANDAS with my older son since he was 3 (he is 8 now), however we did not know exactly what we were dealing with until he was 4. What is crazy about your post is that I have never seen anyone say anything about Impetigo and Pandas. I use to always be on this forum and after we gave up and put my oldest on antibotics perminatly (been 3.5 years), unless there is an outbreak, i don't go on here much. anyway, after 3 months with crazy behaviour with my 4 yr old son, depression, anger, crazy mood swings etc. He also kept an ear infection, sinus infection, you name it.. suddenly he started the having to pee every 20 minutes and clingy. We took him back to the doc yesturday for yet a different antibotic adn what do I hear.... He could have STREP in his ears and it maybe be something called PANDAS! I thought I would die, but it all makes sense, he has joint pain, etc. Ok, back to my story about the impetigo. When 2nd son was a baby he got impetigo and at the same time my older one (then 4) got a raging case of the eye tic and ADHD symptoms, it was horrible. I kept taking the younger one in saying it had to be Step, that the other one was reacting to it.. and they blew me off. We finally got rid of it, it went away, then came back and the same thing again. I always thought there was a connection, but no one would listen. So, the story thickens, in the last 4 months my older one has had his tic come back some and had some behaviour problems so I doubled his meds. All his throat cultures were negitive, I could not figure out what was triggering it. During this time, my younger one was having the sudden behaviour problems, I thought I had the devil on my hands.. angry morning and night, then suddenly sad. He was also fighting ear problems, etc since January. So, 10 days ago, I was so worried about my younger one, I forgot to give my older one 2 pills of antibotic a day, only one (this usually would start a tic back). And my younger one was getting treated with Omnisef... my older one cleared up.. no tic! So I wonder if (like at your house) my younger has been triggering my older one the whole time?? What in the world? They have a cousin (4) we think also has this.. I am now convinced that when he was a baby and had impetigo, it was Strep. No dout. So frustrating having 2 in the house with PANDAS problems and their symptoms seem to be so different.

Thank you for bringing this to our attention. I am going to ask our DAN doctor about this. I guess I shouldn't feel so bad that my son only gets his injection every 3 or 4 days rather than everyday the way the doc told us to do...:-) Just a reminder that, in everything...moderation! Stephanie

I don't know, but my son's IgE tested very high and he got a full-body reaction to the histamin prick. Seems like a pattern here... Stephanie Allie did not have a reaction. She is IgE deficient. I'm not sure if that's connected- don't have research to back it up, but since IgE causes mast cells to release histamine...I'm thinking. Interesting. Dd has had her IgE tested, and it was normal. That was months ago. I wonder if things have changed. My bad...I just looked at dd's blood work again, and her IgE was not tested. Hmmm...

This is how my sons' doc describes it. He says that the "activating" microbe is usually strep. Once the child exhibits pandas from a strep infection then the next exacerbation and all other exacerbations can be from anything that affects the immune system (allergies, viruses, bacteria, even sunburn!!). So if you had sudden onset of symptoms then you should definitely consider pandas/pitands and assume that he either has a chronic strep infection that he is not fully getting rid of or he is reacting to all immune stimulating things in his environment, at which point it is hard to pinpoint the waxing and waning nature of the disease anymore. When it progresses to that point, most ppl have to resort to things that bring down inflammation or modulate the immune system (ibuprofen, IVIG, etc... we are currently using spironolactone). Stephanie

All I know is that back when I was giving my son zyrtec it made him crazy, just like pandas. And when I brought it to the attention of the ped, she said that she took it for 3 years and did not realize how depressed it made her until she went off. She said she wanted to divorce her husband the whole time!! Stephanie

Now that is a first!! Crabs give her OCD!!! I get it but that is so weird!!! Boy I learn something new on this site every single day!! Now here is an interesting thought to add to that. My sons' doc said that even when kids do not test positive to allergies, when exposed to allergens they can still get pandas symptoms. Kind of like when they are exposed to strep but don't get an active infection they can get the pandas symptoms. So in your daughter's case, she may not be actively allergic, but she may be allergic in terms of pandas!!! Wow, how weird!!!!!! Stephanie Oh! Good thought and very interesting! She did not show up as allergic to any of the seafood. But when she has eaten crab and shrimp in the past she gets.... drumroll please..... all OCD and pandasy! You may be right. I will consider this as I look at her zyrtec! Susan

Can someone please tell me how kawasaki relates to pandas? My brother had kawasake at approx the age of 5. Both of my boys have pandas and both of my brother's daughters have had pandas exacerbations before. I also believe that our cousin's little boy has pandas (well he has the tics and OCD, but my cousin is not interested in finding out if it is pandas related...??!!). Is kawasaki caused by strep? I don't remember that being part of the picture when he had kawasaki (I was 10 at the time so maybe I missed that part). I just know that they had to monitor his heart for a few months. Stephanie

Def sounds like you have pandas on your hands, especially with those elevated titers. For your younger son, yes those sound like tics (my 2 year old picks at his skin and also has some subtle eye tics and it def corresponds to his other pandas symptoms). Watch closely. It may be hard to get your neuro to take you seriously with those mild tics, though. Good luck! Stephanie

I have always been under the impression that the irritability stems in part from the OCD (not being able to play again with his friend does not go along with his obsession with playing???). I don't know... Anyway, my son has the extreme irritability but it has gone away with spironolactone (one week so far). You can check out my recent post regarding this...Also, before that I would use advil when I couldn't take it anymore. My son's doc recommends tryptophan (500 mg am and 500 mg in afternoon) to help increase seretonin levels/decrease OCD, etc... Stephanie

Michael, The only side effect I am seeing is possible constipation, meaning not going as often (stool is not hard). Constipation can become a very baad issue for kids if the parents do not remain vigilent about keeping everything flowing with fruit, and other supplements like high dose vitamin C, magnesium, etc. I even gave my son Senakot (natural laxative) a couple times to prevent it from becoming an issue. I'm not sure why our doc wanted us to increase the dose each month. I am guessing b/c my son has a history of constipation and he wanted his body to have a chance to adjust. For my 2 year old, he said I could increase the dose after a "few days". Maybe that's b/c he tends to be more of a diarrhea kid! Stephanie

Just realized I did not answer this question and maybe Amber will know. I believe that Scott's office is the one who started using this drug first for immune issues. I don't know that there are a ton of kids and I don't know if enough time has gone by to determine how the kids do when they go off. Scott could definitley aswer this for you. He would be the best one to give you an idea of what they have seen. I believe they (Scott, Bradstreet, etc.) are still gathering data on this. I do know that many in the autism community use low dose naltrexone for similar immune modulating benefits. Some have to stay on for several years and then they can go off. Maybe it is different in each kid. Stephanie

My son did not test "on the spectrum" but I do believe he was probably a little like asbergers. Very articulate, constantly telling everyone what to do, no sense of humor, frequent meltdowns, no pretend play, stims, perseverations, etc. I think his main issues, biomedically speaking, have been yeast, bacteria, pandas and also poor methylation. Now that we are getting all of that corrected he appears VERY neurotypical. As far as my 2 year old is concerned, I believe that if I did not intervene when I did (ie stop vaccines and start DAN protocol at 12 months) he would have ended up with a classic autism diagnosis. he just had no social interaction except to smile at us when we would talk to him. He made no attempt to communicate whatsoever. He would sit in the corner and play silently for hours and seek no socail interaction. He did not want any affection, etc. He came around very quickly but we still have speech delay, mitochondrial dysfunction and pandas to correct in him. As far as spiro is concerned, it seems that both of my kids have had a tremendous increase in their social interactions. And my 2 year old seems to be making many more attempts to communicate with hand gestures and with words. He also wants me to play with him ALL THE TIME, which is wonderful but also a little time-consuming, but I am not complaining. Stephanie