philamom

I'm pulling up this thread from a year ago - it seems this hospital is still taking children away from their families, and not even open to the suggestion of Pandas/Pans/Mitochondria disorder. Beth Maloney recently released a link of Glenn Beck on the Blaze discussing the situation. Another child (age 15) was taken away from their parents and the hospital is trying to keep the child in the states custody until at least age 18. Horrendous! I'm not too tech savy. Can someone post the link to the interview? thx

Thinking of you...

Thank you. I was just thinking about this the other day, reminding myself to search for this post. Now I don't have to :-)

Thanks for sharing the links. Great info here!

My 12 y/o daughter who has PANDAS (or PANS - since we found out she is dealing with other infections besides strep) did this during her first major flair of symptoms. She was 5 at the time. She was licking everything. She was licking the bottom of her shoes, tables, under the chairs, doorknobs, etc. I took her to one of our pediatricians at the time, and he got down to her eye level and had a long talk with her about the importance of not licking objects and how her mommy was worried that she would get sick. He then asked her if she would stop licking things, which she responded yes. As he was leaving the examining room, she walked him to the door and licked the doorknob after he closed it. oh boy - I'll never forget that moment. At the time we thought it was tourettes, since she was also doing constant knee bends (sort of like lunges). When people asked her why she was doing them, she would answer "doing what". She also had some continuous hand movements, throat grunting, and eye blinking. This flair eventually led us to a dx of PANDAS and treatment. I think the licking may have been more ocd related. The behaviors mentioned resolved with antibiotics, except occasional eye blinking. Has there been any infections that you recall in the last few years? Just wanted to share. hang in there!

Yes, she was treated for bart previously and then tested negative. Her LLMD is located in CT.

You know, I forgot there were two antibiotics that start with "B". I'm not sure which one was prescribed - find out when I pick it up. I agree. I'll start the Doryx when she is feeling better, and then add the other one shortly after - depending on the herx. She is already taking Amoxicillin. S&S- we never stopped testing. After a year and half of testing positive, it started coming back negative - until now. I don't think she ever got rid of it though. Testing positive is difficult as you know, bart can be very elusive.

Thanks. Just sent you my email. DD has taken Doryx before- just this past spring for a few months, but never Bactrim. A little concerned.

My daughter was positive for Bartonella hensalae in 2010/2011. Since then her tests have been negative, until last week - positive again. Her llmd wants to add Doryx & Bactrim. DD is fighting a cold/fever right now. Would you suggest waiting until feeling better before starting meds? Also, should I separate them- few days in between?

If he will drink it, Alka Seltzer Gold is good for detox and upset stomach. My dd balked at the taste first, but it must have made her feel better since she then started asking for it. It needs to be the Gold. I like Klaire Ther-biotic Detox Probiotic. It needs to be refrigerated. And Culturelle & Florastor (which does not). Some people have noted issues with Florastor though.

mama- you know how so happy I am for you!!!!!

[[zealous]] :-)

Unfortunately, like lyme, a negative tick-borne co infection test doesn't necessarily rule it out. Bartonella is very elusive and very difficult to obtain a positive. We originally did the Igenex co-panel which came back normal. Our LLMD then ran bartonella through Specialty Lab (sub-division of quest), which was positive.

I didn't read the entire posts, but need to disagree. My 12 y/o had symptoms starting at 18 months. Age 5 had a major episode. Shortly after that learned of PANDAS. Few years later found out we were also dealing with lyme and bartonella. Not sure what actually came first. Anyway, if my daughter symptoms remained how they are today (and didn't get worse), I would be content. She is not 100% but sooo much better. We have done antibiotics and IVIGs. She used to flair with all illnesses, dental procedures, stress. These days her flairs are less intense and don't last as long. Except when she gets strep, and other major illness like flu...

Have a great time in Maui. Went there for my honeymoon - many years ago :-)

Is anyone attending the Ilads conference in San Diego this weekend? Hoping to hear some feedback on it. I see Madeleine Cunningham is a speaker for Sunday. Also, if anyone is interested, there will be live streaming on the 19th, I believe.

Here is some more info from TBDA: Dear Friends, I'm biking across America to raise awareness about Lyme disease and all tick-borne diseases (TBDs)--illnesses that my family has suffered from and that I feel strongly about--and would like to meet with you along the way, if you're open to it. My name is John Donnally and I'm a 24-year-old Lyme disease advocate. I'm not a cyclist actually, or at least I wasn't until I started training for this ride 5 months ago. I picked up cycling because I thought a cross-country ride would be an excellent way to bring attention to TBDs and generate funding for new research. Ultimately, though, this type of journey is only as meaningful as the people with whom I share it. I'm biking in search of those affected by these diseases and their stories. TBDs can be illnesses of great controversies and divisions; listening to and sharing stories of patients across the country, I think, is a way to find resonance and create a sense of community. Here's my story in brief: I, both of my parents, my younger sister, and my aunt, have all suffered from Lyme disease. I dealt with a wide-range of health issues, everything from neck pain to chronic sinus infections to neurological problems, from as early as 9-years-old. Doctors couldn't figure out what was wrong with me. My family frankly knew almost nothing about Lyme, and I went undiagnosed and misdiagnosed for four years. It wasn't until half of my face went paralyzed when I was 13 that I was officially tested for and diagnosed with Lyme disease. During college, old symptoms returned, gradually at first, and after a year of trying to push through some bizarre and debilitating health issues and receiving misdiagnoses, I was diagnosed with late-stage Lyme. What happened to me isn't exceptional, I've learned. After speaking with other patients, I recognized just how many people go undiagnosed and how much we don't know about these diseases. I wanted to take on a project that would address some of the problems surrounding these diseases, and prevent others from going through what too many have already. I've partnered with the Tick-Borne Disease Alliance (TBD) in their campaign to Bite Back For A Cure. Raising awareness about these diseases and generating funding for new research are critically important goals of the campaign. This is a project that's been developing for several months, and we feel that we now have all of the makings of a really successful campaign. The only thing that's missing is You. If you're interested in being a part of this project by sharing your story, biking some miles, or offering a couch for me to crash on, please let me know! The success and reach of this trip depends on the support I receive from you. I hope you will join me as we ride across the country. Please view TBDA's interactive map http://trackleaders.com/tbdaxc13. I would like to engage with everyone I meet, I need a warm bed, home cooked meals, and most importantly SUPPORT! Please also follow my blog at http://www.tbdalliance.org/getinformed/tbdablog. Donations would be greatly appreciated! Thank you, John Donnally #CureLyme www.tbdalliance.org

Very nice SF Mom. Kudos! I also was considering extending an invitation.

My daughter was homebound part of the last two school years. Her tutor was one of her teachers, that came to our house after school. Her specialty was Math. We received 5 hours of home instruction a week. They allowed the teacher/us to set the schedule. Some days my daughter couldn't handle any work. We also hired someone for an hour (or two) a week. She was a young spec ed teacher that kept it fun and engaging. This was elementary though - little different than the upper grades.

bumping...show is today.

ENA - those are the antibodies that were checked when her ANA came back positive with a speckled pattern. Extractable Nuclear Antiigens. She was positive for RNP. So if you get a positive ANA= the lab should do further testing based on what the pattern of the postive ANA is; speckled, diffuse, I forget the others Also the anti-phospholipid is significant, per our rheumatologist. It was just checked the second time, to confirm presence and it was still there. powpow- in the last two years my daughter +ana has been associated with nucleolar, homogeneous, and speckled. Usually one or two at a time. Last time checked in June she was Homogeneous 1:160 and Speckled 1:160. Lupus Anticoagulant Reglex negative at this time. Has been positive in the past. Everything else has been negative: B2 Glycoprotein, Cardiolipin screen, SM, RNP, Anti-dsDNA (ds). Her anti-dsdna is positive through quest ana choice lab, but always negative through regular quest and labcorp. At one time you were seeing a doctor close to my area - still the same? Thanks!

replied to your pm.

Yes, I believe it can. Two years ago, on Halloween night, my daughter was out trick or treating with her older sister and boyfriend. As she was walking up to a house (my step daughter/ boyfriend stayed back) an adult jumped out from behind a tree in a scary costume w/ax and chased her - it scared the **** out of her. She dropped her candy and ran all the way home. She was terrified. She was already dealing with issues from a strep infection, but I believe the stress alone opened the bbb and allowed the antibodies to cross over. I remember posting the very same question the next day. The constant exposure of infections along with the daily stress could be the reason.

Yea, she had a good work-up. What is ENA? Glad you figured it out!

Not sure whom you are referring to? Dr. E at DuPont? Or is the ped in Yardley? Maybe post an initial or pm me.