colleenrn

TraceyRee, I know this may be easy for me to say and harder for you to do, but do not worry about stepping on your doctor's toes for suggesting what is best for your child. Penicillin for children with PANDAS is not the optimal choice and your son needs what he needs regardless of how you get it. I went along with my doctor for almost a year when he only wanted to use Penicillin and Amoxicillin and my daughter suffered for it. SOME kids do OK with pen/amox, but more do not. I would definitely suggest Augmentin or a cephalosporin (Omnicef, Keflex). You should see a big improvement within a few days. If not, there are others. My daughter used to test positive for strep a few days after completing a ten day course of Pen and Amoxicillin. Have you seen any improvement since he beagn the penicillin? Colleen

When my daughter's symptoms began , they were primarily tics, night terrors, and separation anxiety. It was not until we were a month-two months into it when she started any OCD behaviors. As far as the behaviors and/or tics changing, I saw that all the time. Even within one PANDAS episode, her tics would sometimes change daily. One day she was blinking her eyes, 2 days later the eye blinking stopped and it would be throat clearing, etc... There ia a wealth of misinformation and even more ignorance on the part of the medical community when it comes to PANDAS. Just keep educating yourself as much as you can about it so you will know if you are given the wrong info about it. You will soon be the expert, not your doctor .One of the many tricky things about PANDAS is the HUGE range of symptoms. BTW, I think you were very smart to test your dog for strep. When my daughter's symptoms started years ago, we had a Great Dane and we had him tested for strep as we were desparate to fing someone/anyone who may be reinfecting our daughter. He was negative, but I remember the vet saying that dogs can definitely be strep carriers. What antibiotic does your vet recommend? if your dog is a carrier, I would think a strong antibiotic would be needed and it would be best to keep your daughter away from him for a while until the antibiotics kick in. Good luck! Colleen

Browneyesmom, I live in central Virginia. Where in SW VA do you live? Something that has been essential for some of the parents on this forum is having their physician call Dr. James Leckman at Yale, who will set them staight as to treating PANDAS with antibiotics. I would highly encourage you to do this as antibiotics are so crucial in PANDAS. In fact, my sister's daughter was just diagnosed with PANDAS and the only thing that FINALLY got her to give them Zithromax, was calling Dr. Leckman. My sister's doctor has been aware of PANDAS for years b/c of my children (my sister let her doctor know about what my kids were going through) and she STILL would not completely "buy into" the fact that my niece has PANDAS. One short phone call with Dr. Leckamn changed all of that. Colleen

Joyfulshout, I am so sorry to hear what your family is going through. In my opinion, PANDAS must be ruled out as a cause b/c if it is PANDAS, it is crucial he be treated with antibiotics. You stated this all began around age 4-6, which is a very common time for PANDAS to manifest. I would make a list of specifically what you want the the doctor to do and march in with the list. Don't take no for an answer. You are paying for the doctor to provide you a service and if he/she won't provide that service, I would look elsewhere. I would most definitely have titers drawn (ASO and antiDNase . If the titers are normal, that still does NOT rule out PANDAS. I would also have a throat culture done (NOT rapid test- but insist they grow it out for 72 hours). If you meet any resistance, perhaps telling a small white lie such as "I have a good friend who is an MD out of state and that MD friend told me I needed to have these tests done on my child". I am a nurse and I have seen SO many doctors discount what a parent wants, BUT the second they hear that another doctor feels something should be done, they quickly begin to listen. Just a thought. Also, can you look back over the last several years, especially the first 1-2 years that you noticed symptoms, and look for other things that could help to either confirm or rule out PANDAS. There are many symptoms that these kids go through that at the time is not seen as a symptom of PANDAS. Some of these are any type of change in urinary patterns (feeling urgency to urinate, urinating more frequently, feeling like you stiil have to urinate after you have already emptied your bladder, wetting bed or having accidents), night time difficulties (night terrors, nightmares, separtation anxiety (not wanting to sleep alone), enlarged puils, red, fine, rough rashes on chest and cheeks, perhaps an exacerbation of symptoms after dental work (teeth cleaning, tooth extraction), hyperactivity, deterioration of math skills, deterioration of handwriting, fear of choking. This list may seem long, but it is not all inclusive- PANDAS kids have a huge range of symptoms. Good luck! Colleen

I was wondering what the best way is to start to figure out if my children have yeast overgrowth and/or leaky gut. My daughter has been on and off antibiotics for the 12 years of her life, as well as my 3 younger children. I research like crazy about strep, PANDAS, etc.. BUT I have completely fallen short of the yeast issue and it must be there based on the years of antibiotics. Is there any test I can do at home? I just don't know where to start in figuring this out. Any help would be so appreciated! Thanks! Colleen

That was hard to watch. I wanted to strangle that attorney. How dare they interrogate those parents like that. We have to fight for our rights as parents. Colleen

Myrose, THe optimal dose for Zithromax is 12mg/kg/day. If your daughter weighs 45 lb. (20.5 kg), then her dose would be 245 mg/day, so I think it is perfectly fine for her to take 250mg per day. Good luick! Colleen

Hi Browneyesmom: I am sorry to hear what you and your daughter are going through. I just wanted to comment after reading your posts. What you have described with your daughter definitely sounds like PANDAS and very similiar to my daughter, who is now 12 1/2, but diagnosed at age 5 with PANDAS. Amoxicillin was extremely ineffective for strep in my daughter's case. I would get a throat culture on her a few days after completing ten days of Amoxicillin and she would still be positive. We then switched to Augmentin, which was effective for a while. She had a T & A when she was 6, after which time she did not get strep for 1 1/2 years. Since then we have found Keflex to be effective , but Azithromycin more effective. I think alot of PANDAS kids have intracellular strep and that is why Zith works better. There are lots of supplements that can help alot, BUT the bottom line is doing whatever you can to keep them from getting strep, which means prophylactic antibiotics. I read that you said you are an RN- I am also. I think it is shamefully disgusting what some parents (a lot of PANDAS parents) have to go through to get antibiotics for their children. Maybe the fact that you are an RN will help you in your quest, it has defintiely helped me to get doctors to listen. I made the mistake about not being agressive enough about her antibiotics. We did not do prophylactic antibiotics for a long time and I am really afraid she may have some lasting damage from that. My doctor at the time would give me antibiotics when she had strep, but that was just not enough. Colleen

Sarah, I found that when my kids first started Zithromax, they had on and off abdominal pain, especially my 12 yo, BUT after they had been on it a week or two, they did not have the abd. pain. I figured their GI tract got used to it? Colleen

The cleaning went OK- so far I have not noticed an increase in behaviors. I ended up not giving them extra zithromax. I am worried that my 6 yo is not responding to the Zithromax as he did the first time we used it. Not sure if I should switch him to a cephalosporin. Colleen

Michele, My sister lives in Brunswick, Ohio (just south of Cleveland) and FINALLY got her doctor to "believe" in PANDAS after talking to Dr. Leckman (Yale study- THANKS DIANA!) Her doctor has given her 30 days of Zithromax and they will "re-visit) it afetr 30 days. Do you live anywhere near Brunswick? Maybe her doctor will help you. Let me know if you want more info. Colleen

My kids don't get canker sores, but they do get very, very frequent chapped lips and it has never seemed to be related to a lip licking tic. I have always wondered if it has anything to do with the strep.

My three PANDAS children are having a dental cleaning this afternoon. They are all currently taking Zithromax 250mg/day, but I am still very worried the cleaning may cause a flareup. They were off the Zithromax for almost 3 weeks in December when they had chickenpox and two of them are not responding as well to the Zithromax as they have seemed to in the past (still very labile, but no tics). I am wondering if I should give them extra Zithromax before their appointment today? EAMom, I saw where you posted giving your daughter Amoxicillin on the day of her dental cleaning. Any thoughts on adding extra Zith? Thanks, Colleen

My daughter was taking Augmentin daily to try to prevent strep when she was about 9 or 10. After taking it for about 4 months, she broke out in head to toe hives. We (me and doctor)believed that she had developed an allergy to it. I stopped it right away and she began to clear. I took her a few weeks later to an allergist who did skin tets on a bunch of differnet antibiotics. Her tests showed she was NOT allergic to Augmentin and we could safely use it again, but I have not ever given it to her. Based on her allergy test, though, I could. Maybe that is what is going on with your son? Or could it be some type of viral rash? Those can be hives/patchy and itchy.

SMZ/TMP is a combination of two sulfa drugs, sulfamethoxazole and trimethoprim which is used to treat infections, such as bronchitis, middle ear infection, urinary tract infection, and traveler's diarrhea. It is also used for the prevention and treatment of Pneumocystis carinii pneumonia (PCP). It is commonly known as Bactrim or Septra. It is active in vitro against many gram-positive and gram-negative aerobic organisms. They have minimal activity against anaerobic bacteria. Susceptible gram-positive organisms include many Staphylococcus aureus , including some methicillin-resistant strains, S. saprophyticus , some group A beta-hemolytic streptococci, Streptococcus agalactiae , and most but not all strains of S. pneumoniae . Gram-negative organisms that are susceptible include Escherichia coli, many Klebsiella species, Citrobacter diversus and C. fruendii , Enterobacter species, Salmonella species, Shigella species, Haemophilus influenzae , including some ampicillin-resistant strains, H. ducreyi , Morganella morganii , Proteus vulgaris and P. mirabilis , and some Serratia species. {104} Sulfonamide and trimethoprim combinations also have activity against Acinetobacter species, Pneumocystis carinii, Providencia rettgeri , P. stuarti , Aeromonas , Brucella , and Yersinia species. They are also usually active against Neisseria meningitidis , Branhamella (Moraxella) catarrhalis , and some, but not all, N. gonorrhoeae . Pseudomonas aeruginosa is usually resistant, but P. cepacia and P. maltophilia may be sensitive. It is a pretty heavy duty antibiotic, so I would definitely give a probiotic. It does have a lot of side effects, including making you very sensitive to the sun so you can burn easily. Sulfamethoxazole and trimethoprim combination should not be used in the treatment of group A beta-hemolytic streptococcal tonsillopharyngitis since it may not eradicate streptococci and therefore may not prevent sequelae such as rheumatic fever. Dr. Kaplan (strep expert) says: sulfonamides do not eliminate strep from the throat (although they can be used to help prevent recurrent rheumatic fever).

My children's PANDAS began with OCD. The tics did not come until a few episodes into PANDAS. I think one reason PANDAS is so tricky is b/c our children have a wide range of presentations.

Hi Gibster, I was wondering if you could comment more on the doctor wanting to get an ultrasound on your child's heart to look for strep. There have been many times I KNOW my children had strep, but thoat cultures were negative. I have always thought that the strep could be hiding in their adenoids or sinuses, but never heard of it being in their heart. Is this in relation to how strep antibodies attack the cardiac valves such as with rheumatic fever? Anything you could add about that I would REALLY appreciate as I am constantly trying to find liitle pieces to this very confusing disorder, as we all are. Thanks! Colleen

I personally believe that Gardasil will turn out to be one of the most dangerous vaccines we have ever seen. I tell everyone I know with young girls how dangerous it is. I live in VA and we have an "opt out" clause, but the majority of parents don't realize that and almost everyday my 12 year old daughter comes home and says anopther friend got the Gardasil vaccine. I recently was at my yearly GYN appointment and had the Gardasil discussion with my Certified nurse midwife. She says that she and the MD she practices with, not only do they not promote the vaccine, they refuse to give it b/c of it's uselessness and dangerous side effects.

I was wondering if anyone has any thoughts on whether our children are more susceptible to diseases such as meningitis b/c their blood- brain barrier is already altered? I always understood that the strep antibodies attacked the basal ganglia, deep in the brain, but I did not grasp until now that it is b/c that barrier is actually altered. I find that very scary. Colleen

I buy mom from keycompany.com. It is a derivative of coconut oil. It comes in 300 mg and 600 mg. I use 600mg. I first gave it to her when she was about 9 and I gave 600 mg 2x/day. We rate her PANDAS on a scale from 1 to 10 (10 being the worst). After taking it for 2 weeks, she went from an 8 to a one. We continued that for about a year and stopped for awhile (honestly I don't rememberr why we stopped but it was not due to any side effects). I recently have her back on it, but with 4 kids and so many health issues, have not given it consistently. I plan on upping it to twice a day and trying to be consistent about giving it to her. It is a capsule with powder. I need to find out if it is safe to open the capsule and dump the powder into a liquid as I really want to tey it with my 5 and 7 year old sons (almost 6 and 8). Colleen

Peggy, Have you tried monolaurin? It has anti viral and anti bacterial properties. I had great success when I used it with my daughter. Colleen

Darla, I am sorry, I should have been more clear. My daughter was diagnosed at 5 1/2 with PANDAS and she is now 12. We did Penicillin prophylactically for a while, then Augmentin for about 6 months, a few years ago she took Keflex (a cephalosporin) for almost a year, and now she is taking Zithromax daily. It was trial and error with her b/c I was basically trying to figure this out on my own. Until I joined this forum, I had never had contact with anyone dealing with PANDAS, except for the one time we took her to see Swedo and that was in the very beginning. Knowing what I know now, and if I could rewind 6 years, I would have put her on antibiotics prophylactically, no doubt whatsoever. I am going that route now with my younger children. Colleen

Darla, Have you ever tried a cephalosporin for your child? They are effective against strep and can be taken prophylactically. My daughter took Keflex for about a year. Colleen

Pmoreno, In the case of my two oldest children, before they had their tonsils and adenoids removed, the antibiotics would kill enough strep to decrease their symptoms, but not fully eradicate it. The "leftover" strep would then recolonize and we would see an increase in symptoms. That lessened after the T & A. Colleen

EAMom, Only my 12 year old got the varicella vaccine when she was one and got shingles at age ten. My three sons have not been vacicnated. I hope I am not jumping the gun in saying it is a mild case, but we first saw spots last Thurs., so today is day 5 of getting spots. The weird thing is a ot of them are just red bumps and not turning into blisters. There is another girl in his class diagnosed the same day with chicken pox. So far, we don't know where they got it though. Thanks, Colleen