riffleshell

Right now I do a Flora Udo's brand with 31 strains. Before I was using a different product from the same company that had 8 strains. You might also try and see if your child can tolerate prebiotics. I've read that giving probiotics after antibiotics is like planting corn after you've burned down the rainforest. The species we know how to cultivate and put in a bottle may not actually be what we need to replace was destroyed. It's better than just leaving the earth scorched, however. If you haven't read this article yet, well, you must. It's an interesting read, if nothing else. http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?pagewanted=all&_r=0

Nancy or LLM or one of the others on the boards probably understand this all way better than I do but here are a couple of interesting--and seemingly contradictory--links. Vitamin D Deficiency Linked to Autoimmune Diseases and Vitamin D may exacerbate autoimmune disease There's been discussion on the boards previously about genetic markers and such as well. My bottom-line question is: For anyone that started out having a rough time on Vitamin D, did sticking with it (or ramping up slowly) ultimately benefit you/your child?

Searching through the archives of the forum, it seems that many, many of you have reported that Vitamin D causes issues/backsliding for your kids. Tell me about your experiences: Did anyone stick with it and eventually see a good result? Did ramping up the dosage slowly help? Did anyone have a good experience from the get-go? Was there a combination of vitamins that worked to mellow the crazy? Did you find another way to get your child's levels up? Backstory: My kid came down with PANDAS in October of 2013 and is mostly recovering. (I wrote about his story a bit here.) We recently added Vayarin to his regimen of fish oil, 5HTP, vitamin c and probiotics. Adding Vayarin seemed to make a HUGE difference. The past two weeks or so have been really great--normal, even. His doctor recently tested his vitamin D levels and said they were low. (28 on a scale of 33-100, but many folks will say you are really shooting for around 50.) He recommended we supplement with 1,000 IU a day but...oh my. This has certainly put an end to the recent good run we were having. Thoughts how on I can up his Vitamin D levels without ruining our family's quality of life?

I wanted to update this thread a bit because I found it helpful and I bet others might as well. On our doctor's recommendation, we started Vayarin, which @mayzoo mentioned above. He later recommended adding between 100 and 300 mg of EPA to DS' daily vitamin regimen. The doctor said that EPA helps more with behavior and focus issues. We've only been doing the extra EPA for less than a week, but the Vayarin has been amazing. In three weeks it has really taken the edge off my son's remaining ADHD-like symptoms of occasional rages and lack of ability to concentrate on his homework.

Try OmegaBrite. 7:1 ratio of EPA to DHA. Not cheap but the pills are small. (There are three of them.)

I just wanted to tell Nancy that this comment ... was an incredibly valuable insight for me. A lot of his behavior makes more sense now that I look at it like this. Thank you so much for this. Thank you thank you thank you. (And yes, I have been noodling over this one for two whole weeks.)

A 760 ASO is definitely considered high. I'd try to find a pediatrician or pediatric neurologist who is knowledgeable about PANDAS. The lists on this forum are a good place to start. But if they don't list anyone in your area, don't give up. I found knowledgeable doctors in my area by asking with local parenting networks. Edited to add: Good luck!

My PANDAS son is currently taking: 2 Vayarin daily 100mg 5-HTP 500 mg Vitamin C (Ester-C) probiotics (he's not on antibiotics) Vayarin is a "clinical dietary ADHD management approach, available by prescription only." They call it a "medical food". My doctor said it might take as long as a month to kick in but I'm seeing positive, noticeable results after just 8 days. The other pills I'd started in early Jan (except the probiotics) and I saw an improvement with those as well.

My guy often has a meltdown just as something really, really fun is ending. Leaving a friends' house? Gonna have a total breakdown in the car. It's not about the sugar, it's about the sadness and disappointment that the fun thing is over. In our case this doesn't usually signal a new flare, it's just an ongoing symptom he continues to have. We have to set his expectations and impose consequences for wildly inappropriate reactions. We didn't have to do any of this pre-PANDAS, but currently I would say that his extreme reactions to this kind of everyday disappointment is our biggest ongoing symptom.

Thanks to everyone for sharing your inspiring stories. I really appreciate it and the notion that recovery can be saw-tooth is very useful for me right now as I try to figure out what to do next.

Hi, I'm new to this forum and new to PANDAS, but in my limited experience I see results with ibuprofen quickly. If your son was tired and his tics got worse as the day went on, that could be the reason. Being tired is a big trigger for my son. Good luck and get some rest!

I would love to hear your recovery stories. Did your child ever go back to being his/her "old self?" How long did it take? Was your child in a state of semi-recovery for a while? What do you think was the most helpful thing for you? ----------- Here's a little bit of DS10's story: He came down with strep in October and burst out in a bunch of typical PANDAS symptoms (general anxiety, separation anxiety, hallucinations, irrational fears, emotional lability, rages) right as we were ending the antibiotics. A second round of antibiotics (10 days) took care of most of the really weird stuff. He has had one flare following a bout of gastroenteritis and had a "baby flare" last week when his brother was coming down with walking pneumonia (myco p). The first flare was characterized by raging/anorexia/anxiety--and he got suspended from school for an altercation. The baby flare was "just" lots of rages aimed at me. But most days, he does well. His behavior could be considered completely normal--for a different child. He still has a million friends and is his charming self with them. He is generally able to keep his act together at school. It's just that ... he is not exactly the same as he was before. He has outbursts at the slightest provocation several times a week. He is also super-forgetful and has a hard time concentrating on anything remotely challenging. Also: He seems to have plateaued. If he's getting better, it is gradual. Right now he's not on antibiotics but is taking some fancy Omega 3's, Vitamin C and 5-HTP. I give him Motrin sometimes too. I had titers run two weeks ago but I have not been able to get my doctor's nurse to call me back, which is making me pull my hair out in frustration.

Wow, I'm having the same troubles just trying to get our pediatric neurologist's nurse to call me back with our ASO/DNASE titer results. We had the bloodwork done on Jan. 6th! I gave them a few days to get the results back and have literally called every day since then trying to just get a nurse to call me back. (Apparently the nurse was out, plus there was MLK day and a snow day when the town shut down.) But I'm still frustrated! I need those results!

The general anxiety, the racing thoughts, the separation anxiety and the anger/meltdowns are all typical PANDAS symptoms based on my limited experience. (I'm new here too. ) Ditto what the others said about next steps. Take care of yourself too, not just your son.

My doc recommends the OmegaBrite brand, which also has the 7:1 EPA:DHA ratio. I guess it seems good? We've only just started it a month ago. He also put us on 5-HTP and Vitamin C at the same time. No miracles but I'd say it has been a positive change on the whole.

Well, I'm totally new to PANDAS so I don't really know if I sensed a flare coming on or not. Here's what I can say: His behavior was goofy at the beginning of the week. I wish I'd kept a log because I've already forgotten what exactly I was seeing--basically increased emotionality/lack of focus. (My son's PANDAS is milder than some.) Turns out his (non-PANDAS) brother was coming down with something awful--at first the doctor thought it was a virus but when symptoms didn't clear the doctor now thinks walking pneumonia -- Mycoplasma. We gave our PANDAS son ibuprofen for a few days and now he's doing better. The one with walking pneumonia is on antibiotics now. I know you folks on the boards talk about mycoplasma from time to time. I need to look into that, but so far it seems that my son with PANDAS is doing better. Cross fingers.

I just wanted to update this thread and let folks know that we got a conclusive PANDAS/PANS diagnosis back in December. The doctor believes that he is on his way to recovery, but he is not all the way there yet.

DS10 has now been officially diagnosed with PANDAS/PANS. I posted a bit of his backstory here. He is generally doing well and recovering, but I sense that he is about to have a flare. (I hope I'm wrong, of course.) What do you do beyond ABX when you sense a flare coming on? I just gave him some ibuprofen, and I give him Omega-3s and Vitamin C daily....but is there anything else I can do? Already planning on loving on him as much as possible and hoping it passes quickly.

Hi. Just chiming into say that anorexia was one of the symptoms that led me to thinking what was up with my son was PANDAS. Normally my boy has a hollow leg and all of a sudden he was Mr. Picky, turning his nose up at his favorite dishes. (There were other indications as well.) I would put the word out to parenting networks in your area--listserves, school networks, etc--to see if you can find a PANDAS knowledgeable pediatrician. That what I did while I was waiting to get in to a specialist. I found a pediatrician who had treated PANDAS kids before and ran bloodwork.

These are two people that I've found to be helpful in Austin, TX: Brooks Booker, Austin Regional Clinic, pediatrician ARC Anderson Mill, 10401 Anderson Mill Rd., Suite 110B Austin, TX 78750 (512) 250-5571 Dr Booker is very nice and I recommend him as an all-around pediatrician. He has treated PANDAS/PANS before. He can run the titers in-house. Dilip J Karnik, Pediatric Neurologist (512) 628-1850 Far West & Mopac area Dr. Karnik is a highly respected neurologist and it can take up to nine months to get an appointment with him. See if your pediatrician can expedite things for a PANDAS/PANS situation.

3bmom: How did you figure out it was inflammation? Because that is what I'm wondering about. How long did you keep him on ibuprofen? Did you eventually taper him off or do you just keep him on? Our doc is wiling to to give us antibiotics, but part of me thinks that might not be the best approach. All his odd "PANDAS" behavior is totally gone. So do we need a ABX for a kid who is just a little spacier and crankier than before? Is there a gentler approach?

In the middle of October, my son had a strep throat infection and some odd mild PANDAs-like behaviors in the wake of it. (See previous question.) We did a second round of antibiotics and the odd behaviors resolved but my son still seems more irritable//forgetful than before. He's been getting in more trouble at school as well. But you know, he's in fifth grade. It's a tough time. I ended up having his titers run and just got the results: ASO 200 (On this test, 200 is the upper limit of normal.) DNAse-B – 800. (The upper limit of normal on this test is 310.) Are those results abnormal for a child who had a confirmed case of strep 7 weeks ago? Thoughts?

Thanks so much for the many helpful comments. I so much appreciate the advice I have gotten. Quick update: I took him back to his doctor 10 days ago and it turned out he did still have an active strep infection so we got a stronger antibiotic and just finished that up. His behavior is dramatically improved -- no more crazy fears, sleep programs, anger, clinginess, etc. The only remaining symptom are just that he seems a little less mature, more forgetful, more emotional and seems to have a harder time concentrating. All in all he's just more ADHD than he was before. But it isn't something that is terribly obvious to others like it was before. (He very likely always has had ADHD but I have never sough a diagnosis for him because he's such a sweet awesome kid most of the time. Since I didn't want to medicate him I didn't see the need to a doctor to tell me what I already knew.) At any rate, we see a pediatric neurologist on Friday. He is apparently knowledgeable about PANDAS. My pediatrician got us bumped up the priority queue, apparently otherwise it would have taken months to see him. We will see. Thanks all.

Thanks so much to you all! I saw my son's regular pediatrician today who took me very seriously, but who essentially told me that he really did not know enough about PANDAS to make a diagnosis one way or the other. (I appreciated his honesty.) He recommended a specialist and said that he would pull strings to get me in the door quickly. He seemed to think this person had a lot of experience with PANDAS. All the specialists listed above are 4 hours away. I really hope I can figure something out in Austin.

Thank you all so much for your responses! We live in Austin, Texas. If anyone knows a doctor who has seen this before. I like his current pediatrician very much but I have a feeling he is going to give me the crazy eye when I go in there are start talking about PANDAS.