Stephanie2

Pat, well I don't think my current list of supplements is on my blog, it changes so much. But if I had to guess about what is helping the allergies/asthma I would say: 1. no dairy, 2. all immune-boosting supplements, such as, Vit. C, B vitamins, Methyl B12 shot, and high-dose probiotics. Like I said, we have NO allegies/asthma in this house anymore where we all used to be severe! Well, I keep hearing that it lowers testosterone levels, but in the paper they say that the effect is very minimal (or maybe they said not effect). Either way, for the purposes of autism/pandas they dose it very low. For us it is 1 mg/lb. Not to mention, at this very moment I don't even think we need to go up to the full dose b/c he is just so good right now. The major side effect that many ppl report is frequent urination and/or constipation. My son is not having a BM as frequently but I have been able to manage it easily by making him eat apples, making him drink pear juice, giving high-dose vit c and magnesium. I would also like to get buster's opinion on this, as well as low-dose naltrexone, which they mention in the paper.

I wonder if the test itself got your daughter's pandas symptoms going!! Your doc would probably tell you that the "allegen" doesn't go anywhere else in the body besides on the skin where they are performing the test, but I beg to differ. When I had my son's skin prick test done, he immediately broke out in hives ALL OVER his body, not just where the test was being performed. I told them he is reacting to something, they said that's impossible b/c the "allergen" is not getting into his bloodstream. They sat there and saw the same immediate reaction that I did!! Anyway, maybe some of that "seafood" got into her blood stream. And even if she was not allergic to any of it, they normally do a control test with pure histamine which may have gotten her going. As far as meds go, my son does not do well with zyrtec at all - makes him psycho! He does ok with claritin. Also, our DAN doc highly recommends quercetin for allergies. He also told me to give my son some Pepcid AC because it is a H2 (I think) blocker. I have yet to try that. Best of luck, hope she feels better soon! Stephanie

Some of you may remember that my ds5 had IVIG 4.5 weeks ago (1 gr/kg). Also, I started my son on spironolactone about the same time. Well, one week ago today I had still not seen any improvement of symptoms, in fact I think things were worse than before IVIG. So I increased my son's spironolactone (I was supposed to increase it after one month). Within 24 hours he was a changed child! Immediately his debillitating separation anxiety was 95% gone, his irritability/depression was 100% gone and his OCD was 90% gone! His tics are still there, but may have improved some b/c they just don't seem as irritating. It has been 1 week now and he seems to be holding steady! Right away I wondered if it was the increase in spiro or if by coincidence the IVIG kicked in overnight. If anyone has any input on that please let me know! I have never heard of IVIG just kicking in over night like that (and it literally was over night...he woke up the next morning totally different!). Has it ever happened that way for anyone's child? At the time he was about 3.5 weeks post IVIG. Well, I thought some of you may be interested to hear about this. I will post the link to the paper that our doctor co-authored on how this drug works to modulate the immune system and reduce inflammation. They use it a lot for kids with autism and/or pandas. http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf BTW, when I saw what spironolactone did for my 5 year old I called the doc and got my 2 year old put on it right away since he has been in a terrible pandas exacerbation. The only problem is that he was sick that day so we also increased his antibiotics from a prophylactic to a treatment dose. There was an immediate improvement, but I won't know if it is from the spiro until he goes off the antibiotic. I know I should be spacing stuff out to get a clearer picture of what is working, but I have been in over my head for a long time with these 2 and I am at that point of desperation where you just throw everything at them at once to see what "sticks". Luckily, something is working. I will report back when I have a better idea of what it is.

Thanks for the gold bond tip. I use "Hibiclens" soap for my 2 year old. Stephanie Stephanie, I know what you mean, I haven't done it either... We also see eczema every now and then. Just keep in mind it is very important to keep the skin in good shape as chapped skin or cuts can be an open door to infection. We've been using Gold Bond lotion and it works great. What is the soap you use? Isabel

I don't think it was an overnight turnaround, but I don't remember exactly how long. I do know that it was a slow, gradual recovery for sammy. I also returned mine to the library. I have to say that with my boys, the response seems to be different. One has the slow, gradual response to abx (2 yo) and the other has the overnight "wow" response (5yo). Also, one had the slow return of symptoms after steroid burst (5 yo) and the other went from pandas in remission one night to "exorcist" by the next morning after steroid burst (2 yo). One has a fast, good response to ibuprofen (5 yo), the other has an occassional, slow response to ibuprofen (2yo). Not sure what my point is, but just to say that they are all different, some more resistant than others. My 2 yo scares me b/c it is very hard to "remit" his symptoms. Stephanie

I am on many of the autism forums, as I imagine you are. Well, our DAN doctor prescribed spiro for my 5 yo when his porphyrin test came back. One of the levels came back indicating high brain inflammation (neopterin or biopterin?). Apparently, spiro reduces inflammation, but also modifies any autoimmune issues as well. So he said that spiro had my son's name written all over it! It does appear to be reducing his moodiness/irritability/OCD quite a bit! So the other day, my 2 year old entered into a sudden pandas episode. I got our DAN on the phone that afternoon and asked him for an antibiotic and also spiro. It is hard to say what is working, but my 2 yo seems to be recovering quite rapidly! It will be interesting to see what happens when the antibiotic is done and we go back to prophylactic zithro. If he doesn't get fussy again I will assume the spiro is working. OH! And by the way, ever since I started him on that stuff he has been talking up a storm! Very excited for that... I have read some really great success stories for both spiro and LDN in terms of pandas. I am under the impression that LDN modifies the immune system, but do you know if it also reduces brain inflammation? I have no idea. Also, LDN doesn't affect hormones. I do think that spiro has helped my son to stop going into the bathroom to "play" with himself!! When I research spiro I'm not thrilled about what I read, but with everything else you have to weigh the good with the bad. For now, I am happy with what I am seeing in both my boys and I will take some time to research LDN and see if it is considered safer... Oh, and they have both started sleeping through the night with spiro! My 2 yo was a hugely light sleeper until now!! Just FYI... Let me know what you decide regarding these! Stephanie

I don't know the answer to your question but I just had to mention that I sometimes get the compulsion to "type" out words in my head. It's weird and it's something I have to really push out of my mind when it gets annoying. I have been trying to see if there is a correlation between when I do this and when my kids have strep or are sick. I wonder if at times I also have pandas, not just because of that, I get depressed when I or the kids are sick and I also have a few other subclinical-type tics that only I notice(and every once in a while my husband notices). OK, that was a little off topic, but you can tell your son that I am glad I am not alone in this!! :-) Stephanie

Maybe I don't understand the clay, then. Isn't it like charcoal in that it absorbs the exotoxins from yeast/bact in the gut? Charcoal also absorbs supps/meds unless you give 2 hours away. Does clay do that same thing? I have to say I have been using charcoal a little more lately b/c our discussions and others. It has really been a lifesaver as I have increased his probiotics. Saved me a little sanity... Stephanie

Does anyone know if this would include the generics? I buy Target's brand of children's die-free ibuprofen by the truckload :-). Don't they usually get the generics from the "brand" company? I wonder if I need to toss it? And same with the generic benedryl... Stephanie

I'm guessing the sleep problem comes from a seratonin imbalance (which I believe is caused by pandas in our cases, hence the depression/irritability), which is why melatonin helps so many of our kids (seratonin creates melatonin). Melatonin completely changed our bedtime battles. It has been a lifesaver around here. Now that my sons are on spironolactone, I'm not sure they need it anymore, but I have not tried going without it yet... Stephanie

Could be anything, but from what you are describing sounds like your pandas son is reacting to your other child's illness (which does really hint at possible strep). According to our doc, your pandas child could react evin if your other child does NOT have strep, just b/c he is sick! I know what you mean about going in for another swab. I am lucky to have found a doc who totally understands pandas and when I call him and tell him someone is sick and having pandas symptoms, he just calls in a abx to the pharmacy (I have to pay out of pocket for the phone consult though :-( ). Good luck, and if you want the name of our doc, let me know. He is in Melbourne, FL and you only have to physically go to the office once a year. Everything else is over the phone (except IVIG, of course). Stephanie

My son used to be on 80 cfu's per day and that just wasn't cutting it in terms of yeast and bacteria build-up from the abx. He was getting hyper and aggressive from yeast/bateria. My doc told me to up the dose to about 450 bill per day and it really made a difference in behavior. We like Custom Probiotics www.customprobiotics.com. My son uses the D-Lactate Free formula that they recommend for autism (no dairy or strep in it). You could email the company and tell them about how much abx your dd is on and they can give you a product recommendation. When you first see the price you will fall over in your chair, but when I did the cost comparison with Culturelle you are getting WAY more product per dollar. One bottle will last a long time. Anyway, your daughter is on a very high dose of zith, so she can only benefit from a huge dose of probiotics. Oh, and I had one doctor tell me 1 hour away from abx and another tell me 2 hours away. I do 2 hours when I can, but sometimes have to do 1 hour. Preferrably, you should give the abx first, wait, then give the probiotic so it can work on her tummy all day. Then do the same thing at night (it will do some good sitting in her gut undisturbed all night). Stephanie

just got the results back and no (darn), he does not "qualify" for an immune deficiency. His immune system has improved quite a bit, but he has been fighting off impetigo for about 5 months now, so I don't think it is all that great. I would be curious to see if his pandas would remit if we could get on top of the impetigo...sigh. He is on his 4th abx for that and I think maybe my next stop will be a local infectious disease doctor. Maybe he will recommend IVIG for this infection, given pandas...we will see. Stephanie

Maybe this will make you feel better. I believe that both of my neices had pandas episodes a year ago. One of them followed her mom around and cried if she left the house. She also had quite a bit of depression (this came on abruptly and lasted 6 months). My other neice became defiant, emotional and had a bunch of sensory sensitivities over a 3 month period. Then it vanished. This was all while both of my boys were in a pandas exacerbation and each had strep. My neices were constantly exposed to my sons. Anyway, each of their episodes went away without antibiotics and it hasn't happened since then. In fact, one of my neices developed strep throat 6 months ago. The doc caught it early and treated her with a standard dose of antibiotics and she was fine. So maybe that is what will happen. I think most people on here have very severe issues (including myself, 2 boys with very bad pandas that are not responding to standard treatment). Don't get scared quite yet! Actually, you are very lucky that you received this diagnosis so soon. Many of us have gone years without the proper diagnosis (took 3 very long painful years in our house). Let us know how it goes! Stephanie

Wow, your post has my head spinning! Where do I start? Did Scott really prescribe singulair?? I get it, but there can be some rough behavioral side effects with that. My son was on it and I had to take him off. But then again, maybe your son will benefit. It is anti inflammatory. I'm not sure about pepcid and how it works but I know it blocks histimine in some way, which is related to allergies and immunity. As far as your son's allergies, have you ever tried taking him off dairy products? My son (and myself) used to have very severe allergies/asthma. Since we have started the DAN protocol (which is basically what you are doing with scott) the allergies/asthma are 99% gone. Only problem is that pandas symptoms are not!! Scott said that even if the child does not have typical allergy symptoms, the immune response can still be there and cause pandas issues. Let me tell you my son used to be on the nebulizer about 5 days a month. Now, he has only needed it for about 2 days in the past year. Also, he is off all allergy/asthma meds, only one croup attack in the past year (used to be 3 days a month). I am also off all meds. My allergist couldn't understand why I have only been in to see him once in the past year! He said he did not beleive in going dairy-free and all that nonsense, but I said to him " well, I'm not seeing another allergist!! I haven't been in here b/c I don't have allergies anymore...plain and simple". OK, I'm just rambling. Anyway, thank you for starting this thread b/c let me tell you it really helped me to vent earlier today!! Stephanie

Wendy, how in the world do you get all that in your children? I mean each of my kids are on 20 plus supps/meds per day, but with what you are giving it all has to be separated out, right? I mean the clay will absorb any meds/supps so I hear that has to be 2 hours away from everything. Also the probiotics have to be given 1-2 hours away from antibiotics. So if everything is dosed twice a day, then you are looking at giving supps 6 times a day? I usually have to give my kids supps/meds at least 4 times a day (not including the Methyl B12 shot every night while 5 yo is sleeping). I just can't imagine giving things 6 times a day on a regular basis. Maybe b/c my kids can be so noncompliant at times with it. It's like pulling teeth! So, often times I skip the charcoal which I am sure I pay for down the road. You are right, though, that the bowel issues are most-likely bacterial (with a little yeast mixed in I am sure). I just sent his urine out to a lab to be tested for yeast/bacterial markers so I will see in a couple weeks what we are dealing with...I'm in the process of upping the probiotics, though. Thanks, Stephanie

Amber, ask your DAN doctor about spironolactone. Our DAN uses it for pandas and immune-related autism issues. I just started my 2 yo on it last night and boy was he talking up a storm today and also a little happier and wanting me to play with him (and he is only on half the dose right now)! Here is a link to our DAN website and the paper that they did on spironolactone: http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf I believe it also helps gut inflammation which my 2yo has bad (high eosinophil x protein). Also, many pandas/autistic kids take LDN (Low dose naltrexone) with great results. This will be my next venture if spiro gives out on us in the future... Stephanie

You bring up a really good point about the probiotics creating an "immune response" and it is true that they do. However I have 2 thoughts on that: One, the immune response over time diminishes (at least that is what I hear) but the probiotics still take up "space" in the gut, pushing out the bad organisms (bacteria/yeast/parasites). Two, with most of us using antibiotics long-term you almost have no choice but to use the high-doses of probiotics. My son eventually developed a klebsiella infection due him not being on a high enough concentration of probiotics. Let me tell you, you NEVER want your child to get klebsiella!!! He became completely psychotic and violent! Worse than anything we have experienced with pandas (and he is a pretty bad pandas case). This went on until I finally listened to his doctor and upped the probiotics to 400 bill cfu's. The results have been remarkable! Three, I don't know if anyone else has mentioned this, but when you give high doses of probiotics, many kids get a severe die-off reaction. That is normal and it only lasts 3-5 days. The end result is a better kid, though! Anyway, that's just my take on it. I have read many posts regarding moms getting really good results with kefir, etc. I just wonder if it is enough for our kids. Stephanie

My boys are on a gluten and casein free diet. It really helped my 2 year old overcome some early signs of autism, but it has NOT helped my 5 year old with PANDAS at all. They are also on an all-natural diet, no additives, etc. I try to buy many things organic and I am trying to replace things like beef with fish, etc. The hard thing is that with PANDAS, the household becomes so debilitated that sometimes focusing on dietary intervention becomes an impossiblity! We are lucky to survive some days with the severe tantrums, meltdowns, etc. To be honest I am thinking about stopping the GFCF diet so that we can have a little more flexibility. I just don't know how that would impact my 2 year old... Stephanie

Yes, people can't quite get around the thought that maybe if you tried "just a little harder" you could get better control of your child, no matter what his/her illness. My inlaws who are usually very understanding of this...they just keep telling us all the strange things that my son does, as if we should be able to "go to battle" with it. Like I can make my son stop making strange noises at the dinner table, etc. THEY ARE TICS! I can say it until I am blue in the face, but to everyone else, he is just out of control b/c I sit back and "let" him make the noises!!!! UGHHH!!!!! I often say to my husband that if our kids had almost any other illness that was causing our family to become debilitated like this then they would all be at the door with meals, offering to help, etc. But they all sit back and point the finger - it's just so awful!! And I agree about the money. I would rather live on the streets with two normal boys than live in a nice house with two wild animals... Stephanie

Wendy, you make a good point about limiting their exposure at this age. My husband is out of town and with both of my kids having such problems I have both of them in preschool right now. When my husband comes home I was planning to pull my 2yo out a few days a week, but maybe I should pull him out completely and see what happens. Only problem is that he gets EVERYTHING that my 5yo gets, no matter how I try to keep them apart or sanitize the house, etc. He has been getting sick since he was 12 days old b/c of my 5 yo! Yes, he has been very bad off since Feb and seems to be getting worse and worse. He responded very positively to his steroid burst (I got him back completely for 5 days which was wonderful, he was so sweet and loving). I guess I am going to give the current abx and the spironolactone a chance to start working and see where we are at in a couple weeks. His bloodwork did not come back with an immune deficiency for now. Maybe I will have his pneum titers tested (my 5 yo failed that one and currently waiting on ins approval for more IVIG if needed). Would you mind telling me what abx and dose you are giving your kids? Is it full strength or prophylactic? I'm not sure how long I can keep my 2 yo on full strength b/c his bowels don't do too well. I'm moving up his probiotics as we speak to 400 bill. Stephanie

Hang in there, and I agree with JAG10, if he responded to steroids that just shows he may respond to IVIG. I don't think how long the response lasted with steroids has anything to do with how long the response to IVIG will last. I wish to God there was a real cure to this illness, but unfortunately I think the best all of us can do is learn to manage it and like our doctor says you get better and better at it as time goes by and you learn to catch things in their "infancy" before you have lost a few weeks of sanity to this beast. I am not there yet in learning to manage it. I know a lot more than I did 6 months ago, but I know I have a long way to go. I feel your pain, I too worry about my children's future, will they end up alcoholics to deal with their "pain" etc. It is all so scary. Both of my boys have it, so I know how overwhelming it can be. I said to my husband the other day that I just want to "get out of H#LL" if only for a few months! Hope you feel stronger soon...(I don't know about you but I get more depressed about it all the week or so before my period...ugh!) Stephanie

Stinks...in the meantime you could try a good brand of "gripe water" (we use baby's bliss, expensive but really makes the tummy ache go away everytime for my son and also for me). Best of luck! Stephanie

sometimes these organizations post lectures to their website. another alternative is to go to the doctor's website where they post their own lectures sometimes. and there's always youtube...

Fixit, I am so sorry I have been there so many times (like every day) with both of my boys. It feels like I will never get out of h#ll!! But I have a couple of thoughts. First, who prescribed amoxicillin xr? Scott? I have never heard of his prescribing that! Also, I have to tell you that my son used to experience the same thing where he would start having meltdowns anytime he played outside! I think Buster once suggested that when a child is "exercising"(or under stress) it opens up the blood-brain barrier so that the antibodies can get in there and start stirring things up. Another theory is what you are describing with it being allergy related. You may have seen my posts regarding Spironolactone...the one thing I noticed right away on this drug is that my son did not have anymore meltdowns while playing outside. Then when I increased the dose (you increase it once a month for 3 months) I saw some amazing things happen (less irritability, less sep anxiety and I think less verbal tics). Motor tics are still there. Scott prescribed this, so it is an option. I started my 2 year old on it last night...we will see. Another thing that Scott suggested to me, and I have not tried yet, is claritin and pepcid AC. These are histimine blockers and the combination will block H1 and H2 receptors. Also, he suggested quercetin to calm the allergies and close the BBB or something like that. I'm not saying he has ALL the answers but he really does have a lot of "alternative" tricks up his sleeve, don't hesitate to call him when things get bad, I can usually get him on the phone the very same day for a phone consult (expensive, but what else is there to do?). He can also prescribe some traditional meds for acute times of stress. I don't like that route but I am finding that with 2 pandas boys and my husband out of town, sometimes ya gotta do whatever it takes for your sanity, ya know? Hope things get better for you. My son does (did) the screeching thing, too - it's horrible. Oh, and I get all the crap from my family too about doing all this "stuff". they think I am crazy and making him worse. They think I should stop his special diet and take him off all supplements/meds and things will get magically better. Well then, how do you explain what a mess he was BEFORE I started all that stuff!! He was worse! Some people tell me he needs to be "whipped" into shape, my 2 year old is just learning all this "behavior" from his big brother (even the TICS...what?) and it is just a "lack of control" on our part. Sometimes I think that if everyone really believed in this diagnosis they would stop beating me up about it and they would roll up their sleeves and offer to help! OK, I'm done with my own pity party!! LOL Stephanie