colleendonny

DD5 has been on 600mg Augmentin 2x per day since December. We have also in between done about 3 months total of Azithromycin and 2 steroid tapers. We see Dr. B, and while we do love him, sometimes I feel like we have ask for tests without him mentioning them. We just went last week, and did some blood work. (Which by the way, the kids blood was left out allnight, because no one picked it up. So now, we have to get lab orders, and get the kids blood taken yet again.) We ran her ehrlichia titers, along with C3D immune complex and a CBC and her asialo gangliosides. What else should we be testing for to make sure the abx are not doing any damage? And tests for yeast? Thanks

Thanks all for your input. She was on 10 days of liquid amoxicillin. It didn't resolve, so they added more. She thinks teh tics started soon after the rx was up. I also have a hard time in believeing in transient tics.... There has got to be a reason behind it! I am pushing her to question her pedi, and to put in a call to Dr.B (I wish I could take her along with us on Tuesday!!)

She is 7 and started an eye roll and blinking tic. Started after pneumonia. Do you all think tics are from PANS. Could it just be transient? I'm so skeptical of everything lately. Surely there is a reason behind the ticcing.

My DD5 has not had a choking experience, but I do remember her saying on occasion that she couldn't stop swallowing. Sounds like it is related.

Good to hear. i know OCD is one of your son's biggest issues. I hope this is one of the keys towards healing for him!

I am going to send you a private message

Which brand do you use? How do we know which is right for our kids? Before PANS happened, my kids just took Target brand gummies. After DD's levels of vitamin B12 were almost doubled, we were told to discontinue. We do take Juice Plus, but it really isn't a substitution. Thanks for any suggestions

Personally I wouldn't do it. Period. I would be too concerned of it being a trigger. Is this one of the vaccines where his titers could be checked beforehand?

We see Dr. Bouboulis in Darien, CT. He is pretty aggressive in treatment. He also takes many insurance plans. Some other PANDAS docs do not. Others will give names. You may be better of starting with Dr. Trifiletti, as he will do a phone consult, and he may? Prescribe abx in the meantime.

There were some names at the Pandas Parents meeting for docs, (PANDAS friendly) who do T&A. Do you need the names?

I PM'd you

Have you tried Dr. Gellar or.Dr. jenike?

Hmmm, interesting Melissa. I wonder why Omnicef, then back to Aug? I'm not ready for an SSRI yet, but my options are open to go down that road if necessary. Maybe I will see you at Dr. B's next month! Thanks everyone. I just feel as if DD isn't 100%. I find myself wondering if her behaviors are just her, or if is attributed to the PANS. Some days I wonder if maybe an IVIG would be the best, but it honestly makes me nervous. I have heard wonderful, wonderful stories, but also a few where kids got worse or no improvement.

Is this pretty common with PANS kids? Hers were high in December and still high in May. Also her absolute Neutrophils are low. Another question. My mother babysat her and my 2 yr old on Thursday. I had no idea she was sick, but my mom was diagnosed with double pneumonia on Friday! Titers were not done, just an x-ray. DD has not had a major flare since then, but she has been having bad thoughts on and off, but that was even before the babysitting. And actually yesterday, she was doing this mouth thing... She is on Augmentin 600mg right now. Should I ask for another abx? Or maybe just wait and see if she flares more?

Hi, I am sorry to hear about your daughter. My daughter was 4 when it hit us last October. It took us longer to diagnos, because her rapid andculture were negative and her titers were not elevated. What I am trying to say, strep is not the only culprit for PANS flare- ups. Have you gotten her rechecked for a strep infection? I would have you pedi or neurologist do a rapid and culture. ALso run an ASO or DnaseB titer on her. Also there are other things that can cause it. I would check her for Mycoplasma, Lyme, and other tick borne diseases. Even a sinus infection or a virus could trigger it. Has she had any vaccinations recently? They can also trigger PANS. Also, I would have the household checked for strep. It could be in the house even if nobody is symptomatic. As you know, it is a controversial diagnosis. Many do not believe in it. And some who do, don't know how to treat it. At the top of the forum, you can find a thread of doctors who may help, listed by state. There are really only 5 "specialists"; one in NJ, MD, FL, CT and Chicago. They all treat PANS, in different ways. If you pedi will not check her, try bringing her to a CVS clinic or something for a sinus, strep check... Also, you can try Ibuprofen, to try to reduce inflammation. Many people have seen relief from that. try a Childrens Advil. Others will chime in with advice. Let me know if you have any more questions.

I was wondering if anyone of the PANDAS parents here would mind sharing their protocol for exacerbations and antibiotic/ supplements. DD5 had overnight onset back in October when she was 4. We got in to see Dr. B just 7 weeks after onset, with no medical intervention in the meantime. Since early December, her meds are as followed: Started off on Augmentin 600 mg, 2x per day. (She is 52 pounds). And started off with a Prednisone taper for 15 days. By the time we saw Dr. B, her symptoms did subside quite a bit, and I cannot say I saw much improvement with the start of prednisone or Augmentin. It had me questioning PANDAS. Then at our second visit we got back our blood work. She was IgG positive for Ehrlichiosis, low vitam D, high B12, High C3D immune Complex and high Asialo Gangliosides. In addition to the Augmentin, we added in Azithromycin. We did see more improvement. She was on that until April. We did another steroid taper in March for a throat clearing tic. The tic stopped after a few days, but we had also discontinued her flouride tablets. The tic started after a dental cleaning. In April, we also added A-bart. Her LLMD suspected Bartonella. She was pretty much symptom free when we saw him except for intrusive words and thoughts. They seemed to die off after starting the A-bart. She is on 2 drops, 1x per day. She has had a few flare ups since then, while on the treatment dosage of Augmentin. She strated with a flare up again in June, mostly with intrsive thoughts and confessing, after a virus. We saw Dr. B in mid June and we added in yet again more Azithromycin, which helped. She is doing okay now, but not baseline. She is definitely manegable. She has some intrusive thoughts and some bedtime fears of things like shadows and bad people in her room. Last night, she said it felt like ants were crawling all over her, which was something new. She is now a few days off of Azithromycin. So, we are still relatively "new" to PANDAS, being less than 1 year. I was feeling annoyed that she was flaring while on a treatment dose of abx, so I made an appointment for a homeopath, which isn't until August. I'm debating on cancelling our appointment. I just feel like we are still new to battling this, and I do want to stick with our PANDAS specialist and LLMD, especially since on Inside Edition Dr. B said there is a high rate of "cure" if you catch it early. (Which I think we caught relatively early.) I think we should just delay the homeopathic appointment, at least for a while. I would like to try a prophylactic dosage for a while, then eventually try to move to no abx, except for flare- ups. So, my question to you all is,if you will share, are you on prophylactic abx? If so, which one? How often? Or do you remain off abx and just treat with flare- ups? Do you supplement with things to boost the immune system? I would love to hear what others are doing. While I would love to get her off of the abx eventually, I do not see a rush in it yet, because I have faith that Dr. B will keep trying his best. I'm wondering if my other kids could be making her flare? Or us? My husband and I both have a high IgG for mycoP. And my DS, almost 3, has bloodwork that looks like PANS. He is not symptomatic, except for some emotional lability, which could not be related, and he goes in flares of stuttering, which could also be typical for a 2 yr old. I have have a daughter who just turned 1. She does this eye blinking thing, which I thought may have been seizures, but her EEG was normal. We will also do a brain MRI on her. DR. B thinks it may be PANDAS, but we haven't done blood work on her. We did a 4 week trial of azithromycin on her, but the blinks continued. Strangely enough, they have now lessened while she is now off of the abx. Thanks all.

If anyone finds a clip, please post it! I missed the segment tonight.

I have not seen Dr. T. We see Dr. B and really like him. I think he is the most aggressive with treatments, so that is something you may want to consider. To have follow ups with him, you pay for a phone consult, which is $125 for 15 minutes, not covered by insurance. Or you could see him, which would obviously be difficult for you to do so. You could always add in a doc in your area to work with as well. Maybe a DAN or an integrative physician. Good luck in your decision.

Wow, that made the paper fast :-)

Happy to hear!! BTW, was wondering if you had any lab results back from Dr. B yet? Do you see him again or have a phone consult scheduled?

And as for the Motrin. I can say I see some improvements on it. Last night I used Kids Calm, and she didn't come downstairs in the middle of the night once!!

Aimee, glad you found the forum. I read you blog :-)

I did try it today before I had her nap. She did nap, but not sure if it was the Kids Calm that did it, or pure exhaustion from being up since 3 AM, with the nightmares. She was in a flare since the beginning to end of June, but I thought it had resoved when we added in Zith. Actually, she was pretty much baseline. I think she is reacting to her brother who had vomiting and diahrea on Monday and now the baby has had a fever since yesterday afternoon. Anyway, I gave her another dose tonight. I guess we will have to see how the overnight goes. Thanks for your input. Hope all is well

Anyone use it? For what symptoms? I just got some delivered from amazon yesterday. DD is currently on the couch right now after waking a few times with bad dreams/ thoughts. Her brother vomited last night and now it is 3am here and I am in bed with my 1 yr old who has a high fever I wonder if DD is responding to what they have. Her thoughts, or dreams, are of a stranger pushing her, a green guy peeking into her shower and him coming into her room. She is on augmentin and azithromycin, which we just added in 2 weeks ago, due to a flair. I gave her Advil an hour ago as well. So, does anyone use the kids calm? Any stories to share: positive or negative?

Hi we meet the second Monday of every month. PM me and I can give you the details.