lulu4

Pandakid11, is your ds currently on abx? My dd12 had a lot of nausea for several months before we got a diagnosis. She also had anorexic tendencies but part of her OCD was that she had to eat, so she choked it down. During a 90 day treatment of abx is when I noticed the nausea got better. For 3 months now she has been on both a homeopathic anti-strep med and an herbal antibiotic. A stool test one month ago showed she still has strep (2 kinds) plus staph in her gut. She still sometimes has what she calls the "hunger pains", but not that awful nausea. Now we need to get blood titers, then she will go back on abx. Sorry to hear your son is so miserable. I hope you find some helpful treatment soon. Hang in there.

Our 1 year anniversary is 13 days from now. Although, looking back, we can see that our DD, now 12, had symptoms from about 2 years old. I am sorry for your journey, ah, with all 3 kids. Since you're diagnosing while they're so young, I am hopeful you can treat it and soon be done with it. Here's hoping that your worst year is forever behind you! May it get easier from here.

ptcgirl, I'm sorry the latest ivig hasn't been effective. We might be looking at the treatment sometime soon. However, my dd12 is terrified of the thought of it(needles! and side effects). What is it about the treatment that your daughter kind of enjoys? Any positive thing about it could be a plus to pass along to my girl when the time comes to consider the treatment. Thanks! and Good luck.

My dd12 has started self injurious behaviors of clawing and picking at herself. Thanks for the info here. Hoping starting CBT therapy this week and getting her back on abx will help.

Wish I could be there, but too far away. Thank you for being there and representing PANDAS/PANS families!

So happy for you and your ds. Here's to continued recovery and good health!

Also have federal health insurance. Am 2 hours from DC. (I am a relative newbie; don't know how to p.m. you! Will when I figure it out.)

Kleek3, at our initial visit with Dr. L. recently, she confirmed pandas in our dd12, and asked about frequent urination as if it were one of her routine questions. So I was thinking, oh, I didn't know this was pandas related but I guess maybe it is. I'm learning so much, including all the body parts that strep can affect, including the kidneys. So if your doc thinks it is related to diabetes, ok I'm wondering if it has something to do with strep and the kidneys, at least for us. We'll be following up on that with our docs. So glad to hear your results with the second opinion and that you and dh are on board together. All the best!

I see the Murphy paper was published in 2006. Does anyone know of any other studies done on this topic in the past 6 years? Thanks.

DD12 has first psych eval coming up on Tues. I just got on forum to ask same questions, so thank you all for chiming in. Will def look at Murphy paper. Thank you so much for the resourced! Sosudden, when your child was taking prozac and zoloft, would you know if those were "standard of care" doses, or low doses for pandas and your child still didn't react well to them? Am scared to experiment with these ssris, but really need something to help.

Found out here in VA we can't get lidocaine otc. But pharmacist suggested benzocaine 20% instead. Found it at a chain pharmacy under the store logo and called "Boil Relief".

I so identify with what you just went through. We are going through a really tough time too. So glad you found some help with homeopathic doc. Wondering if you would be willing to let me know (pm me?) where that doc is? Name and town. Thx. Also, how old is your DD? Mine is 12.

Thank you so much for asking this question and for all who have replied. We've been sitting on a lab order for 2 weeks now because DD's fear has escalated so high over needles. We too have been wracking our brains for how to make it happen with as little trauma to her (and us) as possible. So along with the bribe that we do (she's 12 and loves money!), I am going to go call our dr. for a one time prescrip and also go by the lydocaine today. Thank you, thank you; hopefully we can make some progress now.

Thinking of you! I understand when they follow you around and scream and rant and nothing is right. So sorry she is sick and flaring. I hope your weekend was not so bad. If you can call in any reinforcements, try to find a little time for yourself to "recharge" to aid you in weathering the storms. So hard, I know. We're living it too. Sending positive energy to you today.

Thanks, Stephanie, Actually, reading your posts has given me so much hope, because when we lived out west we used naturopathics and homeopathics, but since moving east, we haven't had much luck finding that. Now that our dd has pandas, the traditional medicine route seems daunting to me. We are giving it a try, but as we plan further along, I am quite interested in trying a homeopath. So happy to hear your news. All the best to you and your family. And the other 2 responses here really hit the nail on the head. It's important to hear of successes and the paths that have been taken to reach them.

My dd11's symptoms for pandas have long included the nausea. She's been on abx only 29 days and some of it has improved. She was eating better too. Yesterday she awoke with a sore throat, and by suppertime had no appetite. However, one of her compulsions is she has to eat, so although she doesn't want to, she makes herself do. This has saved her from losing weight these whole 6 months. I have increased her B vitamins and perhaps this is one of the things that has helped her appetitite in the last month. I will check what dose of zinc she is getting. Sorry about your son. I read about the anorexia component when I learned of pandas and have been so grateful that although my dd has some of those symptoms and has greatly restricted her diet, she is still eating. I hope you see some improvement soon.

So happy you have a dx; so sorry it took so long! I know the ###### we've been through for sick months and how tired I am and I am just sitting here in tears for you. Thanks so much for doing all you can. I'm so happy you found Dr. L. (we meet her in Sept.) I am hoping you see improvement soon and I am wishing the very best for you and your son. Cyber hugs.

Chase23, my dd is on daily augmentin (the first abx we've tried) and shows only minimal, if any, improvement. So your experience is of interest to me. How much does your dd weigh and what was the initial dose and what is the increased dose that has helped her? Thanks!

Hi, I'm new to the forum. My dd11 got sick in Nov. and was diagnosed in April with pandas. For the first 3 months of illness, her main physical complaint was stomach pain, similar to hunger pains. In Jan. she suffered a sinus infection and began daily headaches. The infection cleared (maybe not 100%?)yet she still has daily headaches. Do others of you have experience with your kids having frequent headaches? Have you found anything that works? Unfortunately, the pain of either head or stomach is a trigger for her ocd behaviors, so she's anxious pretty much all the time.

I don't allow my daughter, almost 12, on fb either, but I would consider the private group, as she has no one to talk to about her pandas. She is starting to feel very isolated.