Stephanie2

I voted for my 5 year old, but it did not let me vote again for my 2 yo. My 5 year old tested high-average intelligence but did not test in the gifted range. My 2 yo on the other hand, I would not be surprised at all if he goes on to test gifted. he just seems to "get it" without needing to be told how to do something. I turn around and he is doing something I wouldnt' expect from someone his age. Problem is he is quite speech delayed so I don't know how that will eventually play into it all. I will say this, my 5 year old does math in his head, but he has no interest in learning to read (he CAN sound out words, just HATES doing it!!! ugh!). Stephanie

I emailed him and that's what his response was. he did not go into an explanation, just that he does not do it. I asked him if he has a different treatment protocol for those kids (in other words, what do we do in the meantime) and he said antibiotics :-o Well that leaves me with not very much to work with! My 2 yo is not doing great on anything lower than full-strength abx and we already did a steroid burst which did not last very long (gave us 5 days of relief - woohoo!). SF Mom, I know you have 2 little ones with pandas, where are you at with treatment plans? My 2 year old is in a terrible exacerbation at the moment (almost worse than his big brother which I never thought possible) and we are upping his abx and considering another steroid (tapered this time). Also, I just started spironolactone on him tonight b/c it seems to be helping my 5 year old a lot. Stephanie

If I had to guess, the Vit. C did one of two things: enhanced the immune system's ability to fight off anything that may be lurking and causing pandas symptoms at the moment, OR improved her ability to deal with allergies (which also exacerbate pandas symptoms). That is great news, maybe I need to bump up my kid's Vit. C intake! Stephanie

Our doctor only gives benedryl to calm the child down if we think he will be too hysterical to insert the IV, etc. I don't think it has anything to do with the treatment. So, in all of your cases that would not be a good idea :-) Stephanie

My 2 year old is really off the wall right now. I just found out his titers are elevated and he has not been out of exacerbation since January! The only time I have had a glimpse of my sweet toddler is when we recently did a steroid burst and then he went right back to being a mess again. I believe our doctor is willing to do IVIG at this age but he wants to try another steroid treatment dosed differently first. Maybe Dr. K is afraid of liability? Or maybe he does not agree with giving a pandas diagnosis in a child that young (b/c it is hard to know what to look for - although we have been schooled in this for 4 years with my older son!)? Is IVIG contraindicated in general for a child that young? Thanks, Stephanie

I haven't read all the responses but have a few things to add... You asked if a child could regress and not come back. I believe there is a condition along the autistic spectrum called Childhood Disintegrative Disorder where they completely regress back to babyhood, lose speech, etc. never to obtain it again. However, I believe that starts in the younger years and is extremely uncommon. I seriously doubt you have anything like that going on. As far as PANDAS, my 5 yo regresses and does babytalk during exacerbations and it drives me nuts!!!!! He will speak in one or two word sentences and then get mad if I don't know what he wants, etc... Remember that many do not get a rise on the strep titers. One of my boys does get a rise and the other does not, even right after positive throat culture. One of my boys had strep show up in his stool culture the same week of his first ever pandas exacerbation. So if you really want to find strep, you have to investigate! but then again there is always the Cunningham Test (which I am sure has been mentioned above) and there is also just clinical history (waxing and waning, abrupt onset, etc.). Also, something to know is that the first "pandas exacerbation" is always brought on by strep, but after that anything that activates the immune system can cause pandas symptoms. I used to go around town chasing down a positive strep culture in my boys when they went downhill, now I just have the doc call in a prescription for an increased dose in antibiotics when things really flare. Stephanie

Well, I was under the impression that it does not alter testosterone, but maybe I am wrong. I know that the paper I read about it, regarding using it for autism/OCD/autoimmunity, states that it does not affect testosterone. Check it out in one of my above posts... BTW, It has now been 3 full days with great improvements after the increased spiro. Scott, my DAN practitioner, says that he thinks the improvement is a combination of IVIG kicking in and also the spiro increase. I don't know, it really did happen quite rapidly 24 hours after the increase...time will tell I guess! Also, I decided to start my 2 year old on spiro, he is in a terrible exacerbation right now. Upping the antibiotics and starting diflucan, too. Hope to pull out of this soon! He's driving me up the wall! Stephanie OK, that is really interesting! I take spironolactone myself because I tend to have too much testosterone. So they don't worry about giving it to boys that are nearly in or going through puberty? I ask because DS is only 10, but definitely starting. I'd be happy to slow it all down really as long as it was safe for him.

Melanie, What do you mean that you saw results and then not so much? Did the results wear off? What dose were you using? Did you increase over a few months? Did your child go into a major exacerbation while on it? I do know that it is not the cure all, but it seems that it has pulled us out of the day to day irritability/depression/OCD. I'm not sure how it would fare with an acute strep infection... My 5 yo started with 25 mg the first month, then we just increased to 37.5 mg. Next month we are to increase to 50 mg. Stephanie We used it a few ytears ago too.I saw results and then not so much .Many DAN mds use it when the kids enter puberty.If it works i think its harmless Melanie

It's all so sickening. People just don't understand that there is corruption in every "big business". And if they do understand that, they think that it stops at newborn babies - NOT! It's the almighty dollar. Plain and simple. We need to protect our own. How did people become so dumb (myself included, as my 5 yo received 33 vaccines and my 2 year old received 14 before I said enough)? I mean 33 vaccines by age 4??? It really hit home when I came across my own vaccine schedule and I saw that I only received TEN VACCINES! And none of them were on the same day, or even the same week! Yeah, Paul Offit can talk about extending life by 30 years but what does he have to say about QUALITY of life? Oh, I could write a book on this. I witnessed both of my boys regress directly after vaccines and have been making it my life's work to get them back. Just such a sore spot for me! Stephanie

Thanks for your story! What a journey! And with 5 kids in tow!! I have 2 boys with PANDAS, ages 5 and 2. I just wanted to tell you that it took us 3 painful years to get my 5 year old diagnosed and in that time his PANDAS became worse and worse. Each exacerbation tends to get worse and also the kids tend to start reacting to more germs than just strep, making it a real challenge to treat. My 2 year old was diagnosed at 18 months old and I was in denial and had my hands full with my 5 year old so I did not do anything about it at first. I just "rode it out" b/c he was just irritable and had some eye tics. But his next big exacerbation has been really hard and has lead to some complications. We also think that he is now reacting to other things besides strep (ie staph, viruses, etc.). He is a real mess now and his steroid burst only helped for about 5 days. We are already having to contemplate IVIG. I don't mean to scare you, and certainly there are kids who have just one exacerbation, but if she gets strep again there may be a problem. You may want to consider consulting with a specialist and doing prophylactic antibiotics. It would help prevent future strep and it may even help "clean up" the remaining 5% of issues you have remaining! Best of luck! Stephanie

Congrats on your decision to have IVIG, I know it's a tough decision! Things had to get REALLY bad with my 5 yo for us to come to this! Now things are getting REALLY bad for my 2 year old, and I'm asking myself, "really? IVIG for a 26 month old?????!!!" Not there yet, but maybe soon! Anyway, we are currently 4 weeks post-IVIG, first treatment, 1 mg/kg. I have never had anyone really explain what turning back of pages means, but I do think my son experienced it. I saw things that I had not seen in awhile. In general, his symptoms seemed to intensify. Also, his separation anxiety became about the worst I have seen (literally following me around the house and usually hanging on me while I walk, crying when I left the house, crying and clinging for dear life at school at drop-off). Oh, and a tic appeared that I had not seen in a year - a persistent cough/sniff, like 6 times a minute all day long! He can't even get a sentence out without having to stop for his tic 1-5 times per sentence sometimes!! And here is where we are at now...a couple days ago I witnessed a total cessation of most pandas symptoms out of the blue. I still havent' figured out if it is b/c the IVIG suddenly kicked in, or b/c I had just increased his dose of spironolactone, which is a med our doctor gave us which decreases inflammation and modulates the immune system. Wish I could give you a more definitive answer to our results. Too soon to tell maybe... Stephanie

I'm sure you already thought of this, but can she go to community college for 2 years? My parents had a very ugly divorce while I was in high school, I ended up living in 3 different states for high school. I did not graduate with the best GPA so I went to CC for one year and then applied to the school of my choice and got in! May not be what you/she had planned, but I graduated with honors from college and landed the best paying job of all my friends (that career is long gone now!!). Just focus on getting her well and the rest will fall into place. Stephanie

I just received my 5 yo's pneum antibody titers as well and they were all "low", I guess would be the word. My son received all his pneumococcal vaccines (4 of them) before we stopped all vaccines. I am under the impression that if you had the vaccines and you did not create antibodies, that increases your chance of having IVIG covered. I think your chances increase if you then go and have the vaccine done again and you have your antibodies tested again to show that you did not mount a response. I don't really think that it has anything to do with having strep/pandas. It's just another way to show that your child's immune system is not operating properly, especially if he is not "immune deficient" by the insurance company's standards. If your child did not get that vaccine to begin with, I assume that his antibodies came back low b/c he has not been exposed to it (either that or like you said, he has been exposed but his body did not create sufficient antibodies. Someone correct me if I am wrong. I haven't gathered the paperwork and filed claim with the insurance company yet... Stephanie My dd is 13 and has never had a pneumococcal vaccination. Dr. Bouboulis said she has a sinus infection, which is where strep. pneum. usually resides. Would it then make sense that she has pneumococcal strep in her sinuses but cannot mount a response to it, esp. where her white blood count is elevated? Could the insurance companies argue that she doesn't have strep at all because of the low pneumococcal anitbody panel? I wish I had a medical background. This is so difficult to figure out. Angela

I haven't read the other responses, but I have 2 boys with PANDAS and I remembeer thinking "can this really be happening" when the neuro first suggested that my 18 month old may have PANDAS, after I had recently found out that my 4 yo (at the time) had pandas. I was dumbfounded and I was not convinced until it happened several times. Needless to say, my 2 year old definitley has pandas and now I have been forced to face it and treat it. I am so sorry you are going through this, but yes I do think that your 4 year old has pandas based on what you described (very similar to my 5 year old's constant questions over and over). I would nail it with abx AND steroids and maybe you will not have to go the route of IVIG. I did not do that with my 2 yo and now I am left with a big mess on my hands, and it hasn't even been a year since his first exacerbation. Each one has been worse and now I believe he is reacting to other microbes, not just strep. BTW, I believe my neices and my cousin's little boy all have pandas as well, and my brother had kawasaki as a child. It seems to be highly genetic. Stephanie

Actually Kim, his metals came back a little elevated, but I am not ready to and not sure we will chelate. If he had autism (he was a borderline kid) then he no longer does when not in pandas exacerbation. Many of his other issues have been dealt with and pandas is our final fronteir so to speak. He is taking supplements which provide a mild chelation effect over time, like Methyl B12 and other "methylators". The other thing is that when you start to chelate you open up lots of cans of worms (bacteria/yeast/etc) which we have already exacerbated with antibiotics. So, I wouldn't dare go there right now!! Oh, and yes we got these results from the french lab. Now my 2 year old may be another story, but I'm not even testing his metals until we deal with his pandas and see how his speech develops over the next 6 months or so... Stephanie

Actually, it is an "aldosterone" lowering drug, and I don't believe it alters testosterone. It is also immunomodulatory. You can see more about that in the paper I was referring to: http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf Stephanie

Fixit, which test determined taurine was high, urine or blood? The reason I ask is that my 5 yo's taurine tested very high, too, and I believe our DAN at the time (not scott's office) said that his body is dumping taurine in massive amounts through his urine, and that's why his urine test was high. He also said that with Taurine also goes Magnesium so he said I need to really load him up on Magnesium (which BTW is supposed to help tics, I believe). I hope I am remembering the correct amino acid here, I am pretty sure I am..Someone correct me if I am wrong! About the CamK I am not sure, but in my mind if he was in-range at one point then he still has pandas/potential for pandas. And if his symptoms are not fully gone, then he still has a problem. I don't think Scott will kick you out of his office if his CamK comes back low :-). I don't know what he will do, but I do know that he will look at the whole clinical picture. Also, he will look at gut issues, etc. which may be contributing to the problem. Stephanie

Fixit, I'm using it on my 5 yo who had IVIG 3.5 weeks ago. I thought that maybe the IVIG is finally kicking in, but the change was so overnight that I was leaning more toward the increase in spironolactone dose. When Scott saw my son's urine analysis (porphyrin test) which showed very high brain inflammation (any wonder why?!!) he prescribed spironolactone and said it has my son's name written all over it. It took me a long time to start it b/c I didn't want to go down the road of RX's but then one becomes a little desperate over time with PANDAS!! I will let you know how the next few days go. I do have to say that his tics are still there, though. It seems that nothing helps his tics, and therefore I am thinking about requesting that Scott run bloodwork for Mycoplasma pneum. Of course it could be yeast or any number of things. Boy if tics is all that's left after all is said and done I won't be devastated, just a little disappointed... By the way if you want to see the study they did on spironolactone it is on their website along with all the other studies they have posted: www.icdrc.org Stephanie

I am just wondering because our DAN doctor frequently prescribes spironolactone, a high-blood pressure med that safely reduces brain inflammation. I started my son on it a month ago and I thought I noticed a difference in behavior. Then yesterday I increased his dose (you slowly increase over two months) and today I noticed a huge difference in his irritablitly (gone), sep anxiety (gone) and OCD behaviors. Definitely too soon to tell, but I was wondering if anyone else is using this. I will report back when I observe more days on this increased dose... Stephanie

I know that many autism parents use Olive Leaf Extract 3 times a day successfully for pandas. Also, Curcumin can be quite anti-inflammatory. Just some ideas. I did notice a difference with OLE and I may be going back to it soon as the zithro has some limitations. Stephanie

When we started antibiotics,not only did he stop wetting the bed for the first time in his life, but he stopped pooping in a pull-up (age 4 years, 10 months)! Stephanie

Momto2pandas, A couple things come to mind. I have heard that some ppl get depressed/irritable when on steroids. Also, steroids can cause gut yeast/bacteria which can have behavioral side effects. Maybe up the probiotics for awhile. Stephanie

Maybe lyme and mycoplasma pneumonia

sensory issues come with the package of PANDAS. I used to have my 5 year old in OT, until I realized he was getting strep from the OT clinic! Also, I realized that when the pandas is in remission, so are most of his sensory issues. I did get a weighted blanket and it does help my son fall asleep. Also, melatonin works even better, helps him suppress his tics so he can sleep. Stephanie

I know the answer to this, but is this really possible? My 2 year old responded so beautifully to his steroid burst (compliance, easy-going, playful, no tic, no crying at bedtime, etc.). Everyone was amazed at the new child he had become! Then overnight the sympoms returned. Literally, I put him to bed a perfect angel and he woke up crying, hitting, kicking me, inflexible, didn't know what he wanted but would scream if I didn't give him what he wants. Just an impossible child again. Can the changes happen that rapidly? With my 5 year old, the gains slowly faded over a couple weeks, not overnight. Sigh... And by the way, what now? Am I really looking at IVIG for my 26 month old?? I can't believe I am there already... Stephanie