Haileymadison

Hello all, It was approximately 1 year ago that I began searching the internet for answers. August of 2010, my daughter had a sore throat and fever that lasted 1 day. Shortly thereafter, she developed crazy frequent urination. I took her to the doctor and she cultured negative for any type of urinary tract infection. Over the next couple of weeks, she developed separation anxiety to the point that I could not walk into a different room without her wrapped around my legs. She was terrified of being kidnapped!!! At the time, I just figured she was anxious about starting kindergarten. Soon after beginning kindergarten, she developed a severe fear of choking on food to the point of chewing yogart 100 times before she would swallow, which lead to a panic attacks. She started having night time meltdowns due to a fear of dying in her sleep. A couple of days later she would start frequent hand washing that would last a couple of days, only to be replaced with "I think, I just said a bad word" 100 times a day. The frequent urination continued with excessive wiping ( she never felt dry) and changed her underwear a dozen times a day. The list goes on and on. I spent several nights on the internet reading up on anxiety and OCD in children when I found this forum. I took her to the doctor for a culture and sure enough she cultured positive. She was placed on 10 days of Suprax and within 3 days, I had my daughter back. Over the course of the next couple of months she developed a couple of virus's and a severe sinus infection, but no more Pandas exacerbations. In March, I started giving her Olive Leaf Extract. She remained healthy for the rest of the spring and summer and up until 3 weeks ago, had not had as much as a sniffle. 3 weeks ago, she got off the bus, complaining that her throat hurt, and she was extremely thirsty. I gave her a home strep test and sure enough it was Positive. I freaked out, called her pediatrician and had her on antibiotics within the hour. Sooo.... here we are 3 weeks later with not as much as a blip in behavior. So...Does my daughter have Pandas? Is she cured? Did the Olive Leaf possibly clear her of some underlying virus that was taxing her immune system? Was this first exacerbation possibly caught early enough to stop the autoimmune process? I seriously don't know what to think. Any feedback would appreciated. I forgot to mention that her 6 year molars were coming in and causing quite a bit of pain during her exacerbation last fall. I was just wondering if that could have had an impact on her immune system at the time.

Have you thought about using Olive Leaf Extract? My non Pandas son came home from college this past summer with 2 warts on his elbow. I had heard that Olive Leaf would get rid of the warts, so he started taking 3 capsules daily. He noticed the warts started shrinking within a week and within 3 weeks they were gone!! Some people have said that the warts come back after discontinuing the Olive Leaf, but his never did. It would be a much safer alternative.

WOW Bulldog, I am in the same boat as you. My dd6 came home from school yesterday with a sore throat and extremely thirsty. I did a rapid and it too was positive. I had her on antibiotics within the hour. She was showing no sign of any behavior issues either. This was the first sore throat she has ever had with strep. She is usually asymptomatic to strep, so I will take that as a good sign. I have been giving her Olive Leaf 3 x a day for 7 months, so maybe that is doing something for her. I don't really know what to think. I am just praying that things remain calm. Hope things continue to go well for your son as well. Keep us posted.

You may also want to check into Candida/Yeast. I was just diagnosed as having a Candida infection on my skin, called tinea versicolor. I thought it was just sun damaged skin. I was having flair ups with hives as well. My doctor told me to use Selsum Blue shampoo as a body wash to kill the yeast. The hives and discoloration on my skin have completely cleared up. Maybe the long term use of antibiotics have caused a yeast flair opposed to an allergic reaction. It is worth checking into. I also started taking Olive Leaf extract to deal with my internal yeast issues and it has worked miracles for me.

Hey all, I was surfing Dr. K's web site and noticed that he has recently added this new Addenum. ADDENDUM: We have followed several patients in whom the initial antibiotic treatment resulted in a complete symptoms resolution for almost 6 years. Unfortunately, ALL of these patients eventually had a recurrence and had to be treated with the IVIG. Is IVIG in all of our childrens futures? If this is the case, I better start saving my money now! My Insurance stink!! UGH. I just found this statement very discouraging. My daughter is doing so well!!

With all the talk about mycoplasma on the boards, I have been doing a little bit of research on the topic. I ran into this very interesting video by Dr. Garth Nicholson on you tube and it really makes you stop and think. Deadly Mycoplasma in Vaccines - Garth Nicolson_ microbiologist.wmv

Hi, I ordered the tests from docsavings.com. The brand that I like is the Acon twist device/ or test cassette. It's not the strips. They are around $32 for 25 tests, and with shipping I think it comes to $40. Kbossman1 recommended this brand to me. She has used them several times and said they are reliable. I have only had to use it once, but it was relatively easy to use. My daughter does not get sore throats with strep infections or any other obvious signs for that matter. Behavior is her only symptom, usually urinary frequency is her first symptoms. The ones I ordered expire in 1.5 years, so I figure I can swab at any sign of odd behavior. It definitely gives me a piece of mind just knowing I have them. Hope this helps! Thank You! So when you notice the symptoms and you do the test do they usually come up positive? I have only used one and the results were negative, but I was just learning how to use the test kit, so I was expecting a negative. That is my plan to swab at first sign of ANY odd behavior and if I get a positive, I can call my SIL/pediatrician to order me some antibiotics. (her office is 40 minute drive for me and a 3 hour ordeal just to get swabbed.) I might want to mention that my daughter has only had one exacerbation with a positive strep culture. Her symptoms remitted after a 20 day course of antibiotics. We are not on prophylactic antibiotics. She is doing well, and hoping to catch the next strep infection much sooner.

Hi, I ordered the tests from docsavings.com. The brand that I like is the Acon twist device/ or test cassette. It's not the strips. They are around $32 for 25 tests, and with shipping I think it comes to $40. Kbossman1 recommended this brand to me. She has used them several times and said they are reliable. I have only had to use it once, but it was relatively easy to use. My daughter does not get sore throats with strep infections or any other obvious signs for that matter. Behavior is her only symptom, usually urinary frequency is her first symptoms. The ones I ordered expire in 1.5 years, so I figure I can swab at any sign of odd behavior. It definitely gives me a piece of mind just knowing I have them. Hope this helps!

I have wondered about this myself. We got my dd6 a kitten when she was 3 years old. She has had at least 1,000 cat scratches over the past 3 years. She has never had any symptoms of "Cat Scratch Fever". I seriously doubt she has Lyme. There has never been a reported case of Lyme in our county, but Bartonella caused by cats definitely concerns me.

I don't remember my daughter being sick, but my daughter have a pretty severe reaction to her 6 mo. DTap. She had seizures and what her doctor described as "chorea" which looked like violent neck jerks. She would have as many as 30 an hour. After 3 weeks, the chorea stopped. It was the most terrifying thing that I had ever lived through. She never received another one. I am convinced that this is somehow connected to my daughters Pandas.

My daughter on the other hand does not seem to react to exposure. I just found out my daughter's best friend has had recurrent strep infections for 4 months. Her mother does not know if she is not clearing them or they are separate infections. She has spent the night with us. They sit together on the bus and class. My daughter is not on prophylactic antibiotics, so shouldn't she be showing some signs of exposure?

EAMOM, You brought up a point that I have wondered about for months. My daughter had undetected strep with only symptoms being frequent urination,tantrums, moodiness for about a month. It wasn't until her 6 year molars started bothering her and Fall allergies started that she had her extreme exacerbation including anorexia (fear of choking), meltdowns, panic attacks, sensory issues, fear of dying in her sleep, etc. These symptoms lasted for about 2 weeks, but once the molars came through the gums and allergy symptoms subsided, so did her Pandas symptoms. I almost canceled her doctors appointment because these symptoms were resolving on their own. I went a head and kept the appointment and mentioned to my doctor that my daughter had just exhibited almost every symptom of Pandas. She did a throat culture and sure enough it was positive. Within 10 days on antibiotics most all symptoms were gone. Was it the combination of the 3 separate issues that sent her into a tail spin?

Doesn't Tourettes + ADHD + OCD pretty much = PANDAS too?

OMG, that kid definitely screamed Pandas to me too. I looked at my husband and he looked at me and said " I know, you think he has Panda's." Haha. I see Panda's everywhere. I am sitting here watching Discovery Health on television and there is a special about Tourettes, and there is a 16 year old boy on this that screams Panda's also.

Vickie, Did your son have frequent urination with all 3 of his exacerbations? The reason that I am asking, my daughter had obsessive urination when she was 3. She was found to have strep and was treated and recovered without exacerbation of Pandas. It wasn't until she was almost 6 that she began the obsessive urination again. I took her to ped for a strep test which came back negative, so this continued for a month and then BAM, she has her first Pandas exacerbation. Thanks to this site, within a couple of weeks, was able to get her diagnosed and treated for strep. Exacerbation was stopped within a week or two of antibiotics. She has had booster shots, stomach virus, sinus infection and lost two bottom teeth since and is doing well. I am HOPING that the obsessive urination will always be her warning sign that strep is involved. I had read on Dr. K's website that frequent urination is a Pre-cusor for Pandas, so does that mean that it's not actually part of an exacerbation, but more of a warning for Pandas?

Interesting thread. I had my tonsils removed in 8th grade and mono at age 16 as well. Looks like several of us had mono as teens. Wonder if there is a connection!!!

Thanks for the replies all!!! I know that I need to find a Panda's doc. ASAP. I was encouraged that these other illness's were not causing any new exacerbations and I guess hoping that this would all just go away!!! Peg, you may be on to something, maybe she was pre-pandas. Mom Love, You said that your daughter had total remission at 4. At what age did she have her second exacerbation and was it caused by another strep infection?

Hey all, My soon to be 6 year old daughter has always been somewhat of a drama queen and at times I would even call her a spoiled brat. This past August, she presented with frequent urination and separation anxiety (fear of being kidnapped). In September, she developed an extreme fear of choking and dying. It was then, that I found this website and had her cultured for strep. She cultured positive and was placed on 10 days of Suprax. Within a couple of days, symptoms were 80% resolved. She was placed on another 10 days of Augmentin. At the end of this cycle of antibiotics, symptoms were 90% resolved. The only remaining symptoms would be some separation anxiety ( afraid to go upstairs to her bedroom and toy room alone). Since this time, she was given MMR, Polio and Chicken Pox vaccines with no new symptoms of Pandas. Last month, she developed a stomach virus and am happy to report, she had no increase in symptoms. 2 weeks ago, she started running a fever (102). I took her to the doctor the following Monday morning and strep test was negative and was told it was viral and to let it run its course. Within a 3 or 4 days, she was getting worse. I noticed her breath was horrible and and her eyes were extremely dilated. She was not showing any odd behavior, as a matter a fact, she was extremely sweet and loving. I took her back to her doctor and they did a finger stick, which did show she was fighting some kind of infection. Her doctor thought it was a sinus infection and placed her on 200 mg. of Azithromycin for 5 days. This is where it gets interesting. After only one dose of the Azithromycin, her bad breath is gone. She says "Mommy, Can I eat my breakfast upstairs in my toy room. I am not afraid to go upstairs by myself anymore." I was floored. I took her cereal to her toy room and she played upstairs by herself for hours. I had to check on her several times just to make sure she was OK. This is a kid that has not walked upstairs alone for 5 months. Not only has her last bit of Pandas symptoms disappeared, I kid you not, she is absolutely the most loving and sweetest kid that I have ever seen. She was never this sweet, pre pandas. I keep pinching myself to see if this is just a dream. What are the odds that one course of Azithromycin would have that effect on my daughter? Is this just a coincidence, or is Azithromycin a miracle drug? I forgot to mention that the dilated pupils resolved after a couple of days on antibiotics.

Smarty, What did you mean by "butt talk"? I am asking, because my almost 6 year old daughter felt the need to tell me every time she touched her butt or private. She would just randomly say " Mommy, I just touched my butt, am I gonna die?" She would be taking a bath and inform me that she just stuck her finger in her butt!!! It drove me crazy. That was actually one of her last symptoms to go away. I was too embarrassed to tell people, even her doctor.

That is awesome news Peg!!!!! I am keeping you guys in my prayers!!!

I would like to know the answer to this question too!!! This was my daughters only symptom for about a month and then bamb, she has her first exacerbation of Pandas. I have wondered if the urinary frequency was actually OCD or if there was a physical component. The urinary frequency is a hard symptom to deal with. My daughter also felt the need to change her underwear everytime she went to the bathroom. She always claimed she dribbled, although they felt dry to me.

I wonder if she's seen the PANDAS Mouse Model paper? It pretty clearly demonstrates autoimmunity, as the mice developed PANDAS only from antibody infusions from other PANDAS mice (who got it from strep). Can't find the whole study right now (I'll look later if you want) but here is the abstract: http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html Thanks Peg, I will print the information off and give it to her on Thanksgiving. When I mentioned to her that Pandas was caused by strep antibodies attacking the brain, she gave me the GET OFF THE INTERNET look. I then realized even though she knew what Pandas stood for and even agreed that strep could cause OCD symptoms, she didn't realize the specific cause.

Vickie, Thanks for the info! I just ordered a box of the strep test. They will definitely come in handy. I also want to use them on my son when he is home from school. I am finding myself picking apart every little thing my daughter does and says. I am so paranoid that I don't even know what is normal and what is not!! If she crinkles her nose, I am like OMG she has a tic, or if she ask me something more than once, I am like OMG her OCD is coming back. I really need to chill out. I am driving everyone in this house crazy. What do you know about OLE? I have read some really good things about it, but can't remember where I read it. I would like to get her on some kind of natural antibiotic until I can find a doctor willing to give me a prescription. Also, I would really like to hear your story. I know he has been in remission since Sept. 09, but I have not been able to find how your story began!! I have read so much over the past few weeks that my brain is turning to mashed potoates. PM when you get a chance. It sounds like our cases are pretty similar.

Hi all, I have read so much over the past few weeks that I have forgotten where I read what. I was reading some really good things about Olive Leaf Extract and was wondering whether or not to give it a try. I have yet to find a doctor willing to give my daughter prophylactic antibiotics and would like to get her on something in the meantime. Could anyone that has used this product give me some feedback on how to use and whether or not this might be worth giving a try. Would I need to use a probiotic with OLE? I am so new to all of this and I feel so overwhelmed by all of the post. I have so much to learn and don't want to waste anymore time. Thanks!