Teri

Gosh...so lucky you saw it. Was it in the belly button? Glad to hear she is being treated - keep appt with the lyme doctor and occasionally check for a cancellation.

Hi folks, My DD 6 has PANDAS and has been on Azithromycin since March 2012. In May I pulled a deer tick off of her abdomen. From everything I read the chances of her getting Lyme from a tick that had been on her less than 24 hours was slim. 5-6 weeks later she was sick for about two weeks with a low grade fever, painful stomach cramps, and loss of appetite. Back then we just thought it was a stomach bug. By July We saw a big flare of OCD behaviors, anxiety, mood swings, and eventually the resurfacing of a facial / neck tick. She had labs done in August & PANDAS Dr. Added Cipro to the meds. Just found out last week she is positive for both Lyme & Bartonella. We have an appointment to see Lyme specialist in March. After consulting Lyme Dr. , PANDAS Dr. Is going to keep her on Azithromycin & Cipro to treat Lyme, Bartonella, & manage PANDAS. My question is how do we know she is healing? What else can we do to help her heal? What can we expect? It's been a roller coaster so far? We do probiotics & Lamisil for yeast if it's necessary.

Well we just had our most recent Dr. Appt with Dr.B. DD 6 was diagnosed with PANDAS in Feb. 12 - symptomatic since Sept.11. She has been struggling since late June right after a 2 week illness that involved a low grade fever, stomach cramps, and loss of appetite. We have seen over the past three months an increase in OCD, mood swings, malaise, anxiety, impulsiveness etc.. In August Dr. B rans labs including IGenex. DD is now also dealing with Lyme & Bartonella ( had a tick bite in mid May). Just wondering what we can expect, what else we can do. Dr. B consulted with Lyme Specialist Dr.J and they recommend she stay on the meds she is currently on - Cipro & Azithromycin. (she is allergic to amoxicillin, bactrim, & omniceef). Dr.B wants us to follow up with Dr. J. I am going to request copies of the labs as I don't remember what bands are involved. Any words of wisdom ??? Our heads are kind of spinning right now!

We routinely do races of all kinds to "help the medicine go down". She races us doing various things around the house. We also use timers to see if she can "beat the clock". We see Dr.B on Friday and will finally get the results of extensive labs from August. That appt. can't come soon enough but we are anxious to see what else we are dealing with.

That is really shocking ..... And depressing.

Thanks to all of you for your replies! DD (just turned 6) has actually been a trooper with the medications. However when she is in a flare (which she is in now), we have to work much harder to get her to take them. So when she is not feeling well we get the pushback - the whining, she tries to implement rules around taking the meds. Our best bet honestly is to be tough & no nonsense with regards to taking them. There is no negotiating whether or not she takes them! I think after 7 months on daily meds she understands that she has to take them to get better. This illness is so exhausting, depressing, and frustrating ...... For all of us.

As I read through the postings and read about all the supplements kids are taking .... I just wonder how folks get their kids to take the medications & supplements??? I feel like I spend so much time and energy trying to get DD who just turned 6 to take the medications she is currently on. Medications include : azithromycin 1x, Motrin 2x, Cipro 2x, Lamisil 1x, probiotic, Claritan 1x & Veramyst & asthma meds only as needed. Some days we practically have to stand on our heads to get her to take the medicine particularly if she is not feeling well. I have to give up trying to get her to take vitamins right now because it just feels like one more thing "she has to take". We aren't quite at the swallowing pill stage yet so most meds are liquid with the exception of the Lamisil which she can swallow. Is this a common thing for some of you out there? I feel bad for her always having to take meds ( 7 months of steady azithromycin & Cipro added 6 weeks ago). Her labs indicate something going on but we don't see Dr. B for another week so we need to figure out how to live with this. Any advice folks ?

Same doc is prescribing the meds and not sure if liver function has been tested although she had bloodwork (lots of it) at our last appt. Forgot to mention that dd has been on Cipro & Motrin (2x per day) since our last appt. on 8/16. She also takes .25 mg of melatonin @ night to help her fall asleep. Prior to the PANDas dx we really were against over medicating our kid. She has asthma & allergies that we always treated conservatively with meds. She had big behavioral reactions to the both allergy/asthma meds & food dyes/artificial additives. At this point though - we want whatever will help her function close to normally.

Hi folks Just wondering if anyone has or is using any anxiety meds with their kids. My dd (6 next week) has PANDAS. We have had a pretty challenging summer. Right now she is on azithromycin , Cipro , Lamisil, probiotics, & Claritan. We are 6 days into the new school year and it is exhausting us. She is now in full day Kindergarten which she seems to love. However since late June when she came down with some kind of tummy bug we seem to be fighting to keep our heads above water. Dd has been battling OCD, resurfacing of facial/ head tics, and extreme anxiety. For example she woke up the other morning, crawled under our bed, cried, and said she wasn't going to school because she doesn't want to go to gym. It took lots of tricks on my part to get her out from under the bed,eat, and go to school. We emailed the teacher and contacted the school counselor to give them a heads up. We have several incidences like this one. Just spoke to my Ped. who said she would probably benefit from anti- anxiety meds. Anyone else using medications to take the edge off the crushing anxiety? So heart breaking to watch your child fight this sickness! Looking for some wisdom ..... Teri

Hi folks Just wondering if anyone has or is using any anxiety meds with their kids. My dd (6 next week) has PANDAS. We have had a pretty challenging summer. Right now she is on azithromycin , Cipro , Lamisil, probiotics, & Claritan. We are 6 days into the new school year and it is exhausting us. She is now in full day Kindergarten which she seems to love. However since late June when she came down with some kind of tummy bug we seem to be fighting to keep our heads above water. Dd has been battling OCD, resurfacing of facial/ head tics, and extreme anxiety. For example she woke up the other morning, crawled under our bed, cried, and said she wasn't going to school because she doesn't want to go to gym. It took lots of tricks on my part to get her out from under the bed,eat, and go to school. We emailed the teacher and contacted the school counselor to give them a heads up. We have several incidences like this one. Just spoke to my Ped. who said she would probably benefit from anti- anxiety meds. Anyone else using medications to take the edge off the crushing anxiety? So heart breaking to watch your child fight this sickness! Looking for some wisdom ..... Teri

We don't have the results of the Lymes testing yet .... Hoping to get it at our next appt. Dd is allergic to many abx (amoxicillin , bacterium, omnicef) so we are limited to what she can take. How do you go about clearing the toxins? I feel like we have tried so many different things with her and the battle to take the meds is exhausting.

Hi all ... My first post - have so many burning questions but will try to keep to my topic. A little background - Dd age 5 almost 6 diagnosed officially with PANDAS in Feb. by Dr. Elia. In Sept. of 2011 she had what Ped. thought was an illness caused by a big allergy flare - had a fever, everything was swollen but it didn't look like an infection. Took her to the ENT bc she was doing a strange thing with her neck which we thought was perhaps a sign that her adenoids were again swollen. Treated her with allergy/asthma meds, Veramyst, etc... And she seemed to improve. Five days later she had her 5 year well visit which included DPT booster & combination flu vac. (h1n1/regular). Soon after that she developed a full blown tic involving head/neck/mouth/eyes. We learned that she had a kid in her class with strep but she had no symptoms. We saw a neurologist (told us some kids have tics and some don't) - clearly not helpful. Ped did strep test & ran ASO titres - negative strep test - sky high titres. She treated with abx conservatively but tics immediately disappeared after a few days on abx. Every time she went off abx behavioral symptoms returned (hyper, regression, finger sucking, anxiety, restlessness, bed wetting etc..). Nearly a year later we have a supportive Ped. and she sees Dr. B. Dd has been on azithromycin for almost 6 months. She was treated with Diflucan for 30 days in the summer for a yeast infection. In August Dr. B did bloodwork to check titres,mycoplasma, & for various Lymes infections. She had a tic bite in May. We were seeing a resurfacing of symptoms so he added Cipro 2x a day for 30 days. On Day 7 of the Cipro her tics have come back full force - just in time for her to start Kindergarten. Tics have now been here for nearly 2 weeks. Cipro has also seemed to flare up the yeast infection again so she is now on day 7 of Lamisil. PA @ Dr. B's told us that new antibiotic can sometimes cause tics. We are puzzled - is it the yeast infection? We are really concerned / confused because previously the tics disappeared on antibiotic.?? Wow what a roller coaster this ! It is so exhausting ! Any words of wisdom from those of you that have btdt. Teri