texascatholic

Speaking of this, does anyone know of a brand of yogurt that doesn't contain it? Thanks, Holly

I know that PANDAS kids are not supposed to use strep thermophilus probiotics, but what about everyone else in the family? Does is matter? Will is somehow affect your PANDAS child? Thanks again... Holly

It was sad that during a crying spell today my daughter said she wished she was happy like all of the other "bright, shiny" children she knows. Also not helpful that my husband is away right now, and she wants Daddy.

Hi All, My daughter was having loads of meltdowns today + OCD (but not many ticks). We couldn't bring her to Mass again. wondering if Zithromax may not be doing its job? We started it last Monday, and I was hoping that after a week would be up we'd see big differences. Any input? Maybe I have too high of expectations. God bless, Holly

Hi There... I am curious if the rust colored coating on the advil tablets is problematic for people. I just thought about it as I reached inside the container to give one to my daughter today. Thanks! God bless Holly

I spoke with her once by telephone and found her to be very gracious and down to earth. So glad she is coming to San Antonio!

To Arial95, Were you doing 500mg per day for 2.5 months and then 250 per day? I searched the forum for posts about Zith and PANDAS. Folks back then were saying that Zith was considered liver-damaging and that they were told to do 1 week on and 1 week off, or something like that. I wonder if ideas about Zithromax have changed? Thanks for the replies, everyone Holly

Hi There... Obviously my mom and dad are aware of the PANDAS (and have seen if first hand when they visited). My mom is part of a prayer chain group. Yesterday she called up and read to me a prayer request that came through her email stating that prayer was needed for an 8 year old boy who was just diagnosed with PANDAS and had problems with OCD. The prayer request went into greater detail than I am stating here, but I just wanted to share about this because it seems PANDAS is turning up a lot more these days. I will certainly pray for all of our PANDAS children. I think it's a good then whenever PANDAS gets more publicity and there is more awareness. Blessings, Holly

I look forward to reading the responses hear, too! We are on day 5 and no meltdowns yet as of 11:00am...phew!

Can't wait for our visit with him! Thanks again for the heads up. Holly

Thanks for your encouraging reply! Tonight was a tough one. Mega meltdown after I accidentally spilled a little water on her duvet cover. Oh well, day 4 is tomorrow. God Bless! Holly

I actually think I see some little differences after 2 large doses of zithromax. She actually started the night off in her own bed last night instead of demanding to sleep in ours. However, today there were some OCD behaviors, and few meltdowns (less than before). Wondering when most people see a big difference. Also, does anyone have a good probiotic recommendation??? Thanks in Advance... Holly

My DD8 was recently diagnosed with PANDAS. I give her 1.5mg of melatonin every night by breaking a 3 mg. tablet in half. It helps a lot! All the doctors I've mentioned this to have not shown concern about it. Dr. Rao (an immunologist) says 1-3mg is an acceptable dose. I would love to hear other's experiences as well! God bless, Holly

Thanks for the reply ladies. Also what puzzles me is that the dosage is to be taken all at once? I would have thought it would be better to have 250mg in the morning and 250mg at night. Hmmmmmm....

Anyone? Anybody? ;-) The pharmicist asked my DH what in the heck was this huge dose for!!! Makes me a bit nervous.... Holly

Thanks for the inspiration, Ladies! I too love the Divine Mercy chaplet and was recently enrolled in the Brown scapular. I attribute and success we've had with figuring out this whole thing to Our Lady's intercession. The rosary has been such a comfort to me lately (although PANDAS DD8 is not cooperating in the prayers lately, hoping for that to come after some treatment). What homeschool curriculum do you use? This year we are using Mother of Divine Grace and some Catholic Heritage stuff. God bless! Holly

We just got our first prescription for antibiotics. 500mg per day of Azithromax. Is this too much??? My DD8 only weighs 67 pounds. The plan is to try it for 2 months to see what happens. Hoping for serious improvements as she has been on the rampage today. God bless, Holly

Hi! No real advice to give being that we are new here, too. God bless you as you navigate these tough waters. We have been on a gluten free diet for a long time too due to celiac issues. If you need help with that, let me know. Holly

Hi there Isabel... Nice to meet another Catholic here (I'm sure there are many! :-) I'd be interested in hearing more about how your faith has sustained you through this difficult time. We are new Catholic converts ourselves. Thanks for the info about antibiotics and PEX v IVIG. Still trying to figure all of this out. I think I will have to get us all cultured for Strep even though this is a big hassle. Funny thing is my PANDAS DD has never had positive strep titres, so we're still kind of confused. Yes, Sadie10, would love to get together sometime since you are so close! Do you ever get down to San Antonio? I know you had thought about putting together a support group sometime. Let me know if this becomes a reality. God bless all of you, Holly

Does anyone ever do plasmapheresis first and then IVIG???? Wonder if that would make any sense. Holly

I went to Dr. Rao in Plano for the diagnosis. He's a very kind man and treats autism as well (not an issue we are dealing with). We are going to be working with two local immunologists Drs. Brooks and Infante here in San Antonio, Lord-willing, very soon. They just recently started treating PANDAS (I found that out from Sadie here on the forum - thanks!) and they take our insurance. Blessings to all of you moms...hang in there! Holly

Hi Again... We are in San Antonio. Thanks for the info about the plasmapheresis. Boy, today is a "ragey" morning already! We homeschool though, so it's nice to not have to send her somewhere else when she is in this state. Blessings, Holly

Hi All, Our DD8 was formally diagnosed last week with PANDAS. We are going to try antibiotics first. She does not have high strep titres, but scored in the PANDAS range on Dr. Cunningham's test. We are in the midst of another exacerbation rising up due to a flu-like illness that has been going through the family. Any recommendations on whether we should try Azithromax or Augmentin? He is also going to try advil as an anti-inflammatory. Our doc said Augmentin is the most highly recommended. He said we can do IVIG if the antibiotics don't help. I was also curious whether anyone has an opinion about plasmapheresis versus IVIG? Also, she is about 67lbs. Any idea about dosages would help. I know the dr. will have his own recommendations, but I'm curious what you all might have to say. Well, we are excited to finally get going on treatments. Yesterday was tough. Couldn' bring her to Mass due to rages. God bless, Holly

Yay! Keep us updated with the progress! We got out diagnosis last week (officially) and should begin treatment soon. God bless, Holly

Wow, this thread has been great for me. We are taking my daughter to Dr. Rao in Plano, TX to be evaluated next week. Her CamKinase was 139. I'm glad to know it's considered PANDAS level, and hopefully ABX will help. God bless, Holly