ChrissyD

I use Barleans omega swirl. It looks and tastes like a smoothie. Not fishy at all. My kids drink it straight up. The different flavors have different combinations of Omega 3, 6 & 9 except the Key Lime is only Omega 3.

We use vitaspectrum powder which is high in the b vitamins and has the active form of folate, b12 and b6

He is part of the NIMH IVIG study. There are two practice sites...Yale child study center in CT and NIH in Bethesda. Please call him. Getting into that study is like winning the treatment lottery.

philamom, can you PM me too? I would appreciate it.

I'm sorry no one replied. I think the lack of response is because there really is no one out there. My son's GI is strictly mainstream. And she's never done extensive testing on my son other than bloodwork. If I talk to her about diets etc she looks at me like I have two heads. So I would never even discuss yeast issues, gut/immune connection etc. I've basically given her up and treat him in conjunction with a holistic NP in Hackettstown NJ.

If your pediatrician is open to it, share the PANDAS guideline published by Dr. Jenike from Harvard. He recommends using antibiotics for 3-6 weeks initially. Your doctor might be more open-minded to the advice of a fellow physician. Here is the link: http://www.ocfoundation.org/default.aspx?id=2529&terms=pandas

Thank you so much for taking the time to share your amazing story. We parents really love hearing recovery stories, especially told from your 1st person perspective. You're so lucky to have a wonderful mom and great friends that supported you. Good luck to you in the future.

My cousin, a student OT, was in attendance and thought it was very informative and educational. Great job!!

See my DM.

Moleculera told me to wait 1 1/2 months after IVIG.

Just remember you will never see the people on the airplane again. So don't worry about their reactions...just focus on your family. Can you dose your daughter with a second dose of the anti-anxiety pill during layover? Also we live in NJ and my son went through the entire winter wearing no socks and fur-lined crocs. Being cold won't hurt her and ---despite old wives tales --- won't make her sick. Pick your battles I say....whatever gets you through the trip. Good luck!!

Our first PANDAS doc had my son taking VSL#3 450 billion CFU daily. IMO it was way too much for his system. We've been playing around with different brands and strains since Dec. and I think we finally found a good match for my son. Once I stopped VSL#3 I saw an improvement in his tics & behavior. I know not all kids react, but my son seems to...might have been b/c VSL contains S. thermophilus. Also, no matter how slowly I titrate or how long I try to push through, my son seems to regress on doses of probiotics higher than 25 billion, even with no S. thermophilus. At first I figured it was die-off from yeast, but even after weeks on higher doses he never improved, but as soon as i lower the dose of probiotic, his regression goes away. Now we use florastor twice daily and Klaire ther-biotic children's chewable tablets (25 billion CFU) once daily. I also sometimes substitute Custom Probiotics 11 strain probiotic powder but no higher than 25 billion CFU. I give the florastor twice daily with his Augmentin and the ther-biotic mid-day.

Thanks for the tips LLM! I'm going to read up on pyroluria. I thought Omega 3 was universally tolerated, but I guess with this group, they can be sensitive to anything. My son can't take too high a dose of probiotic. I've tried a few times to bump it up and he gets irritable and overlly silly.

Which flavor Barleans do you use? We have the lime and my son spits it. The other flavors seemed to contain omega 6 and 9 but lime and one other (forget which) did not. Of course, this is the 7th omega 3 supplement we've tried that he hates.... I buy the Omega Swirl Mango Peach to go packets. It has only Omega 3. For some reason that flavor in a bottle has Omega 6&9 but the to go packets do not.

Omg I've tried to reply three times and keep getting erased. If I post multiple times, please forgive me. Your supplement list looks relatively safe and you should have no adverse effects from what you are giving. What multivitamin are you using? Two comments....first I would consider adding an omega 3 supplement. Very good to counteract inflammation. Stick with a high quality brand that has little to no Omega 6 or 9. We use Barleans omega swirl (tastes great..honestly! My son is picky as ###### and drinks this straight. ) Also my son has had lifelong GI/constipation issues. We have been trying to wean him off Rx meds and recently started Natural Calm, which is Magnesium Citrate. It has worked wonders for his constipation. Just a suggestion...my son's constipation was severe but he's doing so much better now. I hope this was helpful!

Is it this one? I found this on pandas network website and it really helped my son's OT when he started school this year. http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf

Heather, I would love to know the NP you now see. If you wouldn't mind, please DM her name? Thanks.

lulu4 I can answer that. Yes solumedrol is a steroid. IV push means the nurse/doctor injects the medication into the IV via a syringe. My son recently went through IVIG. If you want to DM me, feel free to ask any specific questions about the process etc.

No script required for Enhansa. I use it with my son.

Welcome Joshua. Good luck to your daughter and I hope the IVIG brings healing. My son had IVIG last month. He doesn't like to drink a lot, so we gave him lots of popsicles and jello and fruits like watermelon, canteloupe and grapes. We started giving him extra fluids 2 days before and during and also for a few days after. We kept him out of school the week after, to give him time to rest and heal and to keep him away from other sick children as much as possible. Bring along snacks and drinks, as well as diversions like iPad, video games, coloring pads & books etc. Different doctors have different protocols for pre-medications etc. My son sees Dr. L. PM me if you want to discuss any specific details about the IVIG process itself or if you have any questions.

Not a lot of people talk about her on this forum but you might be able to start with Dr Jyonouchi in Newark NJ. She doesnt have a terribly long waiting list. She's an immunologist and knowledgable on PANS. And she works for a medical center so she does accept insurance. Her approach is a little different than most but she's brilliant & a believer so she's a good start. She's doing a clinical study on PANS and immune dysfunction. She does a lot of immune testing & typically will test strep titers, but usually doesn't do a screen for Lyme, mycoplasma etc.. She treated my son for about four months with Azithromycin and pulse steroids and got him to a better place. Please DM me if you like and I can share more details and advice. Edited to add...she uses IVIG in some children also.

I posted this elsewhere but found it important enough to share. While reading up on BCH I found this lawyer's blog. I think it's important to all have our eyes open when accessing care for our children. http://jmilaw.net/blog/?p=70

Rheumatic fever is a clinical diagnosis based on signs & symptoms and supported by lab work. If you google "Jones criteria" you can see the criteria for diagnosis. You need at least two major criteria, or one major and two minor criteria. Anemia is not associated with rheumatic fever, that I know of. Yes H pylori could definitely cause nausea due to stomach irritation (gastritis) or even an ulcer. I hope you get to the bottom of things and she is feeling better soon.

If they are open-minded, this might be a good place to start-- http://www.ocfoundation.org/PANDAS/ Maybe you can print it and bring it along to the visit?

Thanks for sharing your experience w IVIG Nickelmama. The waiting is so hard, especially after so many months of this flare. Mayzoo we've done some off-the-wall things for our son's well-being and peace of mind. Bathing in a pool is the least of it. Probably the only people who would understand are all of you. ;-).