Haileymadison

Thanks everyone!! I took my son to the immediate care center and he does NOT have strep. Whew, that is a relief!! My daughter is acting Ok now! I think that I overreacted. She has been drama free for about 2 weeks, but today has been a bit on the moody side. She is having to share attention with her brother who has been away at school. At least I am hoping that is all it is. I can honestly say, she is a bit on the spoiled side. I have 2 kids in college and she was our SURPRISE. I was 41 when she was born. My 22 year old daughter has undiagnosed OCD. She is a clean freak and a total perfectionist. She had a 2 year episode of bulimia in high school. She was a cheerleader and class president. She is getting ready to start Dental School. Although she hates her OCD, she credits it to her successes. My 19 year old son is a math and science genius!! He is on a full scholarship at Indiana University. He is Pre-Med with 4.0 gpa. He has had a couple of mild tics for as long as I remember. He was an All-State football and baseball player and was being recruited to play football in the Ivy Leagues, until a knee injury his senior year of high school. He was Salutorian, Athlete of the Year, Homecoming King in high school. I just thought that I should give you all a little history of my other kids. Although my older kids were never diagnosed with any disorder, it now has me wondering if something as simple as strep could of triggered her OCD and his mild tics. My husbands family doctor is here in town. I think I will make an appointment with him and let him know our situation and hopefully get him to prescribe her some antibiotics. If that doesn't work, I will go to Chicago if I need to. I only live about 5 hours away. Vickie, my sister in law thinks Pandas is just a few symptoms to a specific strain of strep. She doesn't see it as an autoimmune disorder. She told me that she sees about 1 patient every couple of months that have these symptoms. Some never have anymore problems and others just take antibiotics when they get strep. Sarah Jane, I am anxious to hear about your sons IVIG. Where did you go? What Pandas doctor are you seeing? Peg, I have read all of your post about 20 times in the past 3 weeks. My heart aches for you. I can't imagine trying to tackle Pandas as well as Lyme. Thanks to all of you, I was able to diagnose my daughter very early in this process. I know that I may still have a long road a head of me, but for now she is happy. She is no longer urinating every 3 minutes, changing underwear 30 times a day or chewing yogart 100 times for fear of choking. She has had 3 weeks of peace and happiness!! Does anyone know where I can buy some rapid home strep test?

OK, I may of spoke to soon. My 19 year old son came home from college for Thanksgiving break. Sure enough, she is acting a little off today, (Drama Queen)!!! She also mentioned that she needed to go to the potty, but she just went. I may just be being paranoid. I don't know. I just checked my 19 year olds throat and it looks pretty yucky. It is really red, with just one piece of cottage cheese. He says that he does not feel bad. I called my Sil, and she refuses to give me any antibiotics without a culture. I read somewhere that you can buy home strep test. Does anyone know where I can buy them? I checked Rite Aid and they don't sell them. Vickie, I just read you post, and am starting to freak out a little. I seriously don't think my SIL will give me prophylactic antibiotics. She actually seems to be getting a little irritated at my paranoia. I don't think she really understands the whole "Pandas" and definitely don't want me trying to tell her how to be a doctor because of what I read on the internet. I can see where that might piss her off a little, but this is my kid and I can't help but freak out a bit. Where am I going to get antibiotics without changing doctors? It is a touchy situation when your husbands sister is your pediatrician. I love her to death and do NOT want to offend her in anyway. She has been my kids pediatrician for 20 years and have always trusted her.

Well, It has been a few weeks since my last update. I can honestly say that I was a little embarrassed to post. We finished our antibiotics on the morning of October 28th. She was at 95%. I walked in the office 100 percent certain that I was going to refuse her booster vaccinations, but after a lengthy debate with her pediatrician (My sister inlaw), I caved and we walked out with an MMR, Polio, and chicken pox booster, and no more antibiotics. I felt so defeated, I cried all the way home. I have been walking on pins and needles for over 3 weeks with no antibiotics, 3 new immunizations, 5 friends with strep, just waiting for a bomb to explode. I am very happy to report, that so far, no new symptoms. As a matter of fact, her remaining symptoms resolved as well. She is doing great. I realize her symptoms were more on the mild side of the Pandas spectrum, but I don't really know what I should be doing at this point. I hate to just sit around and wait for another strep infection and hope for the best. I feel like I need to be doing something to protect her. My Sil does not feel she needs prophylactic antibiotics, so what can I do?

My own thoughts on this is that post strep behavioral/physical symptoms are not that uncommon, but usually mild enough that its just attributed to not feeling well. Of course a sick child wants mommy more, of course a sick child is more irritable...etc. I think its the intensity and chronicity (did I just make a new word?) of symptoms that sets PANDAS apart. But, also, I think your SIL is really on the ball to have made that observation. Yes, my SIL is really on the ball. I actually was going in to get my daughters vaccinations on Oct, 7th, when I told her that we have been having a lot of anxiety issues with Hailey and we were really worried about her. I told her that I had done some research and thought my daughter was showing signs of Pandas. She immediately did a strep culture and sure enough it was positive. She refused to give the vaccinations and put her on 10 days of Suprax and told me to come back in 10 days for a repeat culture. I talked to her on day 8 and told her that she was 80 percent better already. She then put her on Augmentin for another 10 days. I go back tomorrow for a repeat culture. My daughter is pretty much back to normal. I would say 95 percent better. I had parent teacher conference today, and her teacher told me she is showing no signs of anxiety and appears perfectly happy and is one of the brighter children in her class. Should I request more Augmentin or would it be better to push for some Zithromax? One more question.... When you all talk about your children being in remission, what exactly does that mean? Does it mean that they are no longer having symptoms?

My sister inlaw actually graduated from UK and has season tickets to all the basketball games. Her daughter (my niece) is actually is premed at UK. I will definitely help her learn. Is there any Pandas docs anywhere in KY?

Thanks everyone for your quick responses. I had pretty much decided against the vaccinations anyway. My sister inlaw's office is Louisville, KY. I am not sure how familiar she is with Pandas. She did mention that she sees a lot of boys with urinary symptoms with strep, but never called it Pandas. I am going to ask a lot more questions tomorrow. I am just wondering why she is seeing so many children with urinary symptoms with strep. I have researched this, and can not find 1 website that list urinary frequency as a strep symptoms (except Pandas). Evidently Pandas is not as rare as these websites claim. I am not sure that my sister inlaw has even made the Pandas connection.

I was researching Lyme and saw a picture of a bullseye type rash that most people get. Did your children have that rash? My daughter has never had anything other than a mosquito bite. I have bathed her daily since birth and have never noticed anything odd. Do you all live in a state that Lyme is more common? I am definitely going to mention it to my sister inlaw, but wouldn't the antibiotic Augmentin treat most any infection that she could possibly have, including Lyme or Babesia? Yes, I have hit the jack pot with having a sister inlaw as my daughters pediatrician, but she was the one that originally thought to check for strep when she had urinary frequency at 3 years. She has had many patient's with strep with no signs other than urinary frequency. I am wondering if all those children are also showing signs of Panda's? We go back to the doctor tomorrow for a follow-up Strep test. Should I request more Augmentin? She is currently on 600 mg. XS and weighs 42 pounds. Do you consider that strong enough dose? Last question, what are your experiences with Pandas and vaccinations? My daughter is in need of MMR and polio boosters, but quite frankly, they scare the crap out of me. School is requesting her shot records, so I may need a doctors excuse to get a waiver. Sorry about all the questions, I want to get my case together before I see her tomorrow!

That's great. That symptom can also be a symptom of babesia. They call it air hunger. You feel like you can't get enough air. I had this symptom for one week straight years ago and years later realized it was the first sign of babesia. It was pretty terrifying to feel like you cannot breathe. You can have babesia and have no symptoms at all but if you have babesia and you get lyme, you can get very sick. When you start to treat the lyme the symptoms of coinfections start to come out. Just something to keep in mind. All these tests are pretty unreliable but if you get a positive result that will mean something. A negative doesn't mean anything though. Tests are very insensitive and do not test for all known types of coinfections and lyme disease. Other symptoms to watch for are thigh cramps, sweats, headaches, calf pain, sore soles of the feet, etc. All these can be clues to whether or not and which coinfections are involved. Babesia???? I have never heard of such a thing. I will will study up on that one. I didn't realize that I was going to have to get a P.H.D. to help my daughter. I guess in time, I will figure everything out. So many children on this site have Lyme also. I live in a state that had only 1 reported case in 2009. I was reading that some of the east coast states had as many as 5000 cases last year. My daughter seemed to be better tonight. She never mentioned the shortness of breath or the bad word thoughts, but I find myself on pins and needles just waiting for the next weird thing to come out of her mouth. She was very cranky tonight, but she was up way too late last night and has always been cranky when she is tired. I keep trying to remind myself, she was cranky at times before PANDAS, and has always been a drama queen, so antibiotics won't fix that, lol. How do you moms know what is normal crankiness and moodiness verses Pandas? I am just so paranoid about every little thing she does. Is this normal? Oh well, sorry about all the blabbing. My husband thinks I am over reacting and over analyzing every little thing she does, so I can't vent to him. Oh yeah, I forgot to mention, we were shopping at Target tonight and my daughter was running about 50 yards in front of me and testing the waters to see how far she could safely get a head of me. 2 weeks ago, she wouldn't of left my hip, so there is hope!!!!

Thank you all for the quick reply. My sister inlaw happens to be my daughters pediatrician, so I am pretty sure I can swindle some more antibiotics out of her. I will ask her to check her for Lyme disease too. I want to nip this in the bud now, and not regret anything later. I am having trouble knowing for sure, if some of her residual symptoms are actually Pandas or just a 6 year old being a 6 year old. I find myself picking apart everything she says and trying to blame all her actions on the Pandas. She occassionally mentions that she keeps getting bad words in her head and can't get them out of her head. She never says bad words, just thinks about them. For the past 3 or 4 days, she will occassionally say that she feels like she can't breath. She doesn't appear to be anxious about anything when she mentions it. It always passes and she never appears to be out of breath. I am not sure if it is actually anxiety or Pandas or something entirely different. After I assure her that she is breathing fine, she seems ok and goes on with playing. She is very active with cheerleading and gymnastics and can run forever without getting out of breath. I am definitely going to mention it to her doc. Could this be a side effect of the Augmentin? I know one of the side effects is difficulty breath, but I don't think she is having any difficulty breathing, so thats why I am assuming it has to be anxiety. Those are the only 2 really strange things that she continues to say. What do you guys think?

Hey all, Just looking for some advice from others who have been down this road before. My daughter started having frequent urination at the age of 3. I took her to her pediatrician to check for a urinary tract infection. The culture was negative, but her doctors told me that she sees a lot of strep infections with urinary symptoms. I thought that was odd, but sure enough she was positive for strep. She was placed on 10 days of antibiotics and recovered completely. I never gave this another thought and just assumed frequent urination was a common symptom of strep throat. My daughter is now almost 6 years old. At the beginning of August, my daughter came down with a sore throat and fever that resolved within a couple of days. She soon started showing signs of frequent urination and changing her underwear at least 10 times a day. She would complain of constantly feeling like she needed to "PEE" but she had just went. I took her to the doctor and did another urine culture which came back negative. I asked her doctor to do a strep test to rule out strep and at that time it came back negative. I soon started noticing that she was very hyper. She was doing cartwheels and round-offs all day long. She started showing signs of separation anxiety. She refused to play in the backyard alone or with friends, unless I was out there to watch her. She just kept telling me that a stranger might take her. She followed me around the house. I could not even go to the bathroom by myself. By the end of August she started all day kindergarten. She soon became extremely irritable and moody. I assumed she was just exhausted and not getting enough sleep. A week later, she was eating a bedtime snack and started complaining that a piece of food was stuck in her throat and within minutes she was screaming that she was choking and she thought she was dying. She wanted us to take her to the hospital. This episode went into a panic attack and it took at least an hour or so to calm her down. Over the next couple of weeks, she refused to eat solid foods and would need constant reassurance that she was not going to choke. Bedtime became difficult and she was in constant fear of dying in her sleep. A couple of days later, we noticed that her hands were red, raw, and dry. She was constantly complaining that her hands felt sticky and washing her hands multiple times a day. It was at that point, that I google searched her symptoms and came up with possible Pandas. I took her to her pediatrician for a strep test and sure enough it was positive. She must of had this infection for 2 months or so. She was given Suprax for 10 days. After that course of antibiotics she was at least 80 percent better. I asked her doctor for another 10 days of antibiotics and she was placed on Augmentin. She is now maybe 90 percent herself. She has a doctors appointment on Thursday for another strep test. Should I request additional antibiotics until she is 100 percent or will she continue to improve now that the strep infection is gone? I am so confused on where to go from here. I feel lucky that we found this within 2 months of her first symptoms and that she has responded so well to antibiotics, but she is still not 100 percent. Any Advice?