riffleshell

I have my son on Vayarin and it has helped him. It's not really a drug, it's more of a prescription food supplement. You can also do regular ADHD medications on top of it as it works differently. I'd try Vayarin before trying stronger drugs though. (Not that I have any problem with ADHD meds if you need them or if they help your child.) http://en.wikipedia.org/wiki/Vayarin Good luck to you. And SSS is right, all our kids are different.

Like your daughter, my son is mostly doing well these days. But when he is not well, and is raging, he too likes to throw things, including his iPhone. I have told him many, many times that if he breaks it, I am not getting him a new one. (And I mean it.) He has been able to stop himself from throwing it. Ripping up paper is a good substitute. It's been a few months since we dealt with any of that. I miss it not at all. Good luck to you!

I have a son who also diagnosed early and responded well to initial antibiotics--and we've never done long-term antibiotics. We do the supplements that are in my signature and antibiotics only when he is flaring (not often). It's been an interesting ride and I'm not sure we're out of the woods totally but he is doing well. I'll let others weigh in on the vaccine - I support vaccines generally as well, but can see being leery. On the other hand, what if she actually got pneumonia?

If you have a diagnosis of PANDAS hopefully your doc gave you some antibiotics, as mentioned above. If not, go back and ask for (demand) them. In the meantime you might try ibuprofen for a few days, plus nutritional supplements like fish oil or curcumin--but don't start them all at once, otherwise you won't know what worked, what didn't. Keep a daily log of everything that seems relevant--what medicine you gave him, how much he slept, how his behavior was, etc. You might also ask your pediatrician to check his vitamin D levels. That's one part of the puzzle for many of these kids and is a simple test your pediatrician probably knows how to run. I'd recommend a neurologist or an immunologist over a psychiatrist as your next move.

Yes. One simple place to start: An ASO of 859 is far, far higher than normal for a child that has not had a strep infection since 2011. I say "simple" because any decent pediatrician (even one who is not a PANDAS expert) ought to raise an eyebrow at that. You might be able to get someone to give you some antibiotics based on that number alone. Good luck!

My older son was diagnosed with PANDAS almost a year ago. Pretty "classic" case, he had strep and then a week later his behavior deteriorated dramatically. We got a diagnosis immediately and he is doing well. Now I'm wondering about my younger son (age 5)....could he have it too? He pees frequently and seems to have sudden urges. He is also not dry at night but he is a bit young for that to be a big deal. He frequently has a hard time falling asleep. He needs to have things "just right." He's can be controlling of his family's behavior and he wants us to do things just the way he desires, like that we walk up a certain side of the steps or do things in a certain order. He can get angry when these desires are not met. This is frustrating for us but does not seem at a clinical level. He is a very picky eater and is germaphobic. He has some separation anxiety, not awful, but more than most kids his age. However, he's pretty much always been this way. My husband has jokingly described him as "OCD" for years. Definitely no sudden onset and I don't see a connection to strep or other illnesses. Also, on some level, he's clearly fine. He behaves well in preschool, he is outgoing, he has friends, he's a sweet kid, etc. Here are my questions: 1) Am I crazy to think he could have PANDAS too? 2) How do you get a doctor to even consider this with no strep connection, no sudden onset and no truly problematic degree of OCD?

This thread caught my eye, as my son was utterly symptom-free for two months, but appears to be relapsing. Boy am I ever disappointed. My son developed PANDAS in October 2013 after a diagnosed strep infection. A second round of antibiotics took care of all obvious PANDAS symptoms, but DS remained short-tempered and more "ADHD" than before. That went on for months. I was not treating with long-term or prophylactic antibiotics as I thought he would recover more fully with time. But in the spring, he had scarlet fever and regular strep in quick succession. Treating those obvious infections with Cefdinir "cured him" completely--left him 100% symptom free at any rate. Unfortunately, he relapsed this week. I think this disorder is really hard to beat. My son was diagnosed and treated immediately and here we are eight months later still in its grip.

Here's my story, if it is helpful: My son burst out in a bunch of PANDAS symptoms during a step infection. I got him a second round of treatment with stronger antibiotics right away. He was much better--but never quite 100%--for months and months after. For various reasons, I was reluctant to treat with antibiotics (his titers were falling) but treated instead with the nutritionals in my signature below. In April, he got strep (scarlet fever) again. And I gave him the strong antibiotics again. And boom. All better: 100% back to normal. (At least for now--crossing fingers!) The nutitional stuff helped, I believe that. But the third round of antibiotics cured him. I know why I was reluctant but I wish I had done it so much sooner. Good luck to you!

I was able to find PANDAS-knowledgeable doctors in my area that were not on this list by asking on local parenting lists/groups, etc. These were not perhaps the expert-level doctors that many see, but doctors who had treated PANDAS before, knew what blood tests to order, believed it was a real thing etc. They have helped my son quite a bit--his case was/is simpler than many here. Sounds like some local Michigan folks have already PM'd you with more local info. Good luck to you and your son.

Thought folks might enjoy this. http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards

My son recently had what I thought were hives but turned out to be scarlet fever. Stomach back face and neck were the places affected. Worth getting a strep test.

If none of the above doctors work for you, be sure to hit up parenting networks or lists in your area for a recommendation. You may find doctors who at least have some experience with the disease that way.

Vayarin has been working well for my son, as I've posted before. The results are not insanely dramatic and it definitely takes a few weeks to kick in. So not at all surprised you aren't seeing any results with a half a dose for only three days. Give it a full dose for at least a month, but really two. After a few weeks of taking it I noticed that he could focus better and just sit down and do his homework, for example. Or that he wasn't fighting with us as much. And that he could handle adversity better. Etc. For us it is well worth the $28 copay a month, but I think it is double that without insurance.

Thanks sss! That's very heartening to hear. DS was not on prophylactic antibiotics. Perhaps he should have been? But I was--and remain--leery of messing with his immune system and his gut bacteria so much. It's hard to know what is the right thing to do. I certainly see how prophylactics could be beneficial, especially now. So far he seems OK, but I also have him on Advil. I'm sort of hoping that the Advil will prevent any inflammation from even starting but of course I could be utterly wrong on that too! He was on a bit of a downward trend--not really a flare, just vaguely not doing quite as well--for a few weeks before the rash started. Things don't seem to be any worse now. Hopefully we will have an experience like yours.

Posted yesterday about my son having hives....well, they weren't hives. It's strep/scarlet fever. But unusual because no other symptoms besides the rash -- no fever or anything. But of course our kids often display strep differently.... Gah....things had been going relatively well. Not perfect, but so much better. His pediatrician put him on 8 mls daily of Cefdinir....any other thoughts on what we should be doing to prevent a full-blown flare? Advil? You can see what we're already doing in my signature.

Yep, it is strep. Oh lord, here we go again. Pray for us. Can't believe I didn't see it sooner.

I feel like I'm a broken record on this but Vayarin helped tremendously with my child's behavior/focus.

My son burst out with hives on Saturday and they are almost all over his body today: arms, back, behind, chest and legs. He's had hives a couple of times before (pre-PANDAS) for no real reason I could ever discern. We gave him a Zyrtec pill this morning and an Advil. Didn't seem to do much, as they are actually worse tonight. On Saturday, he went to a birthday party where they had junky candy.. At first I thought that was the cause--and it might well be--but now I'm not so sure. He doesn't have food allergies that I know of, but I've never tested him. Normally we don't do food coloring, except on relatively rare occasions, but he's never reacted to it or anything. Thoughts on if this could be somehow PANDAS-related? I know that hives can be a rare symptom of strep. Tomorrow is pretty much the busiest day ever at work. Gah, the WORST TIMING. Tonight we gave him a Benadryl pill. At least he'll sleep well, right?

Wow, this is interesting. I have my son on 5htp and he's probably been on it about 12 weeks now that you mention it. And I'm seeing increased irritability and "spazziness" recently. I had been maybe thinking he was about to flare, but it has been steady for about two weeks. So maybe not a flare, just not quite as good as it was. Thanks for flagging this. I will research this further and talk to my doctor.

Your daughter is lucky to have you on her team. Sounds like you have all been through quite an ordeal. One small thing you might try, if you haven't already: I would see if you can mix in some probiotic powder in her food. I find that they help greatly with my son's anxieties.

My hunch is that the subsidies are based on household income, not individual income. So the wife of a millionaire clearly wouldn't qualify--just to use an extreme example.

I think the flu vaccine is a bit of roulette. You know your kid and you have the best sense of your odds. This fall, just as my son dealing with the worst of PANDAS (so far), the flu was very bad in our area. I wrung my hands but decided not to get him vaccinated. The rest of us did get the flu vaccine. Luckily, he didn't get the flu, at least not yet. (Knock on wood!) He's doing much better now and I absolutely would get him vaccinated if it were the start of flu season today. I think his system could deal with the vaccine now without a major relapse, but if he had the flu itself, he might be in trouble. Rowingmom's links were very interesting. I had no idea about that.

Just tossing this out there: My understanding is that antibiotics also have an anti-inflammatory effect. Perhaps that is what is helping your daughter? I don't know Dr. L except by reputation on this board but I would try to see her or someone who can help. Even it if is not PANDAS per se, it could be autoimmune. I'd keep investigating.

To update folks on how this is going at our house, my son seems to be tolerating the D slightly better and we're keeping him on it for now. Will keep you posted. I'm trying to up his intake of Vitamin A and Vitamin K veggies, wish me luck with that! I can't possibly ask him to take another pill in the morning. @smartyjones: I started noticing that the Vayarin was probably helping after a week and I think the effects are still ramping up. So not immediate, but the improvement has been noticeable over the past month.

I'm the one who has posted about Vayarin and as I've said before it seems to have been quite helpful for us. Sounds like you already know that Vayarin contains phosphatidylserine, EPA, and DHA. We've been on it for about a month. It's really helped with behavior and focus issues in particular. Would you get the same results from a fish oil pill + PS? Maybe, I couldn't say. In December, before Vayarin, we had a conference with his teachers where they strongly recommended a 504 plan for his behavior and distractibility issues. Friday we had another conference and they said he was getting mostly As and his behavior was no longer a problem. His ability to sit down and crank out his schoolwork is much, much better. We were using OmegaBrites before and I thought those were helpful, but Vayarin has taken it to another level. My doctor recently recommended that we add a fish oil pill of 200-300 mg of EPA a day. That seems to have been helpful on top of the Vayarin.