colleenrn

I completely agree with the lameness of the NIMH site. I think it is terrible that they continue to recommend Psych meds when we know they usually backfire on children with PANDAS. They also discourage tonsillectomies instead of recommending that an ENT evaluate the need for a tonsillectomy based on the status of the tonsils and adenoids. They are doing a great diservice to so many children. Back in February, Dr. Swedo answered my email to her and commented "we are updating our website to provide more information". Hopefully that "update" will come soon!! Colleen

I wanted to comment on getting a culture for Strep A and non A, as LisaM mentined. If you just get a regular throat culture, it usually just looks for strep A. If you get an upper respiratory culture, it tests for all strep AND other pathogens (one is mycoplasma pneumonia which can trigger PANDAS). I think it is a good idea to always do upper respiratory cultures on PANDAS children. The swab is done the same way, it is just grown out diffrently. It gives you a lot more information. Colleen

I have always been worried about rheumatic fever with my children b/c they have had strep SO many times. That is how I "discovered" PANDAS. After my daughter had strep 4 times in a few months when she was in Kindergarten, I was researching rheumatic fever and found PANDAS. I have also been told by a doctor that rheumatic fever no longer exists, which is completely false. It does exists and is even on the rise. To those who have seen Dr. Latimer and been advised to rule out any cardiac involvement, I am very curious what tests were done? An echo? I want to rule out any cardiac involvement, especially with my 12 year old who had long periods of untreated strep b/c we did not know about PANDAS at the time and she did not have physical symptoms to have me know to take her for cultures. ANY info about testing for cardiac involvemernt would be greatly appreciated. I am wondering how to get it covered by insurance. Do you think just based on number of strep episodes and a positive family history of rheumatic fever would be enough? She has had horrible joint pains from time to time when she has had strep. Thanks! Colleen http://emedicine.medscape.com/article/808945-overview Disease prevalence in the United States is a function of socioeconomic status, with higher frequency in areas of crowding. The United States had experienced a resurgence of rheumatic fever in the last 2 decades, with many of the reported cases involving persons in upper socioeconomic groups. The reason for this disparity is unclear but may be caused by the emergence of more virulent strains of group A streptococci. The overall incidence has been declining in developed nations but is still rampant in less developed ones. The incidence is low in most parts of the country but is variable. In a study published in 2006, Martin and Barbadora showed that the disease remains a problem in western Pennsylvania with 121 new cases from 1994-2003.1 Consistent with earlier reports, most patients were children and most had carditis. ARF is common among American Samoans in Hawaii.2

Melanie- If you have seen a big improvement in Dan while on the Zith, in my opinion I would keep him on it. The culture is negative b/c he is on the Zithromax. Colleen

Noelle, Yes, dogs can have strep. Someone on this forum recently had her dog tested and he was positive for strep A. A lot of vets and physicians think this is not possible, but it definitely is! A lot of times the strep after 10 days of antibiotics is still in the tonsils, but that is not your case if your child has had them removed. Did they remove the adenoids also? What antibiotics do you use for strep? I am running out the door, but would be happy to add more info later. Colleen

Lacy, I wish you the best of luck today! Let us know what happens. I am hopeful that my NP will give you Zith. Let me know how it goes. Colleen

My 8 yo severely grinds his teeth in his sleep. I was wondering if other children with PANDAS also do that. Thanks! Colleen

Our PANDAS story started when my oldest (now almost 13) turned 5. She was fully vaccinated except I did not let her get the 5 year MMR booster b/c at that time I had been researching vaccines to decide if I would vaccinate my 2nd child that I was pregnant with at the time. When she got her 1 year MMR and varicella vaccine she got a high fever and rash. This made me concerned about further vaccines, but I gave her the 4 yr. DTaP (I had not started researching vaccines yet). I truly believe the vaccines played a big role in her PANDAS and I will not vaccinate her anymore (I signed a religious exemption so she would not have to get her varicella or DTaP booster prior to 6th grade). I did not vaccinate my other 3 children (except for polio). My 6 and 8 year olds have PANDAS, but it is nowhere nearly as bad as my oldest. I attribute this to the fact that their immune systems were not assaulted by vaccines. I also have been more vigilent in suspecting strep and treating it aggressively in my other three. The jury is still out as to whether my 2 1/2 yr. old son has PANDAS, but he has already tested positive for strep a few times with NO physical symptoms at all (just like my older three) and I had him cultured b/c his behavior was horrible (screaming all the time, waking up a lot at night, and being super clingy). This, IMO, points me towards the conclusion that he has PANDAS also. This is NOT to say that all siblings in a family will have PANDAS, but I think if one sibling has it, you need to be super vigilent about keeping your eyes open for the possibility. With all of this said, I am not advocating that people not vaccinate, but in my opinion it will make PANDAS worse. I was so afraid about the time when my kids would get pertussis and chicken pox b/c physicians/media/CDC made me so afraid of the complications with these two diseases, but last year my kids had pertussis and did fine. This year they had chicken pox and also did fine. Someone posted which vaccines do people think are the worst. I personally think the varicella(chicken pox), the MMR, and most definitely Hep B are the most dangerous. Gardasil is right up there with them also. Colleen

Amy- I am a nurse and I also am pretty sure I was a PANDAS child. Two of my sister's kids have PANDAS. My mom had rheumatic fever. I strongly believe there is a genetic connection. My child with the worst PANDAS was almost fully vaccinated, my other 3 were not. I believe one of the main triggers besides strep is the vaccines.

Lacy, I am so sorry to hear what you are going through. PANDAS is ######, but don't give up hope b/c things can and will get better. If she was doing pretty well until recently, my opinion is that she needs a much higher dose of Cephalexin OR another antibiotic asap. I think I remember you having trouble getting antibiotics??- have you ever had her on Azithromycin? 250mg of cephalexin is a really low dose and it is very possible that she has strep somewhere. I live in Charlottesville which is only about an hour from Richmond. I take my children to a family practice with nurse practitioners, one MD and one DO, who are all great. The NP that we see agreed back in October to put 3 of my children on daily Zithromax. I have bombarded her with every PANDAS article out there and have shared a lot of other PANDAS children's stories with her and she is most definitely a "believer". If you can't get any doc in Richmond to switch her to Zith or increase the cephalexin, I know my NP would be helpful if you could travel up to C'ville. Hang in there!! Colleen

ARMom, Yes, it definitely sounds to me like PANDAS. He needs to have a throat culture done asap and antibiotics if positive. That is terrible that your physician will not do a simple swab- in my opinion that is the epitome of medical negligence. I would insist they do a throat culture and be very, very assertive about it. If they still refuse, I would find another physician asap who will at least do a culture. If they do a rapid culture (Results in 10 minutes) and it is negative, make sure they do a longer culture (48-72 hrs.). Yes, anyone in your family could have passed strep to each other. It is not a coincidence that your husband has strep right now. Given that your husband tested positive for strep, your physician should be willing to test ANYONE in the house as strep is very contagious. A lot of PANDAS children do NOT show ANY physical symptoims of strep- just behavioral, so that is not unusual. All of the symptoms you desribed fit with PANDAS- the clinginess, frequent urination, rages, all of it. Check ou the webpediatrics site in the previous post. Good luck. Colleen

Judy, The info about using 500mg of Zithromax in cases of strep came from my sister's pediatrician. I have not been able to find it online and my sister has not gotten it from her doctor yet. Her pediatrician said that physicians are undermedicating in the cases of strep.. She said that with strep, the 500mg of Zithromax is needed and she puts my niece (age 8 and weighs 60 lb.) on 500mg of Zithromax when she has strep. She is an extremely cautious doctor. She won't even let my sister's children stay on longterm Zithromax, but insists that 500mg is needed to treat strep. Colleen

Judy- I am so sorry to hear what you and yor son are going through. I only have a minute this morning for a quick response, but will add more later. What dose of Zithromax is your son on? It sounded like he had a great initial response. Most physicians put children on Zithromax 250mg per day. I have my children on that dose. I recently found out that in cases of strep, the best treatment dose is 500mg for even a child of 11. My sister's pediatrician says that research shows that in cases of strep, 250mg is not enough (250 is OK for OTHER illnesses). I KNOW some will think this is too much- I am wondering the same, but this pediatrician stays very curent on research and insists this is the case. I am trying to find out what research she has read and I will post it as soon as I get it. Bottom line is- could you get your physician to increase him to 500mg of Zithromax, at least for a 10 day course. I would hold off on the probiotics just for a little while and see if that makes any difference. There is a PANDAS doctor named Dr.Kovacevic who you can email or have a phone consult with. His web site: http://www.webpediatrics.com/pandas.html Other things to consider trying : Inositol powder (a B vitamin) helps with OCD, 5HTP helps with anxiety- both can be purchased at a health food store. Does he still have impetigo? If so get a prescription for mupericon (Bactroban). It is a topical ointment that kills strep. Even though he is on an oral antibiotic, the mupericon can still help with the strep on the skin. Hang in there! Colleen

Judy- I am so sorry to hear what you and yor son are going through. I only have a minute this morning for a quick response, but will add more later. What dose of Zithromax is your son on? It sounded like he had a great initial response. Most physicians put children on Zithromax 250mg per day. I have my children on that dose. I recently found out that in cases of strep, the best treatment dose is 500mg for even a child of 11. My sister's pediatrician says that research shows that in cases of strep, 250mg is not enough (250 is OK for OTHER illnesses). I KNOW some will think this is too much- I am wondering the same, but this pediatrician stays very curent on research and insists this is the case. I am trying to find out what research she has read and I will post it as soon as I get it. Bottom line is- could you get your physician to increase him to 500mg of Zithromax, at least for a 10 day course. I would hold off on the probiotics just for a little while and see if that makes any difference. There is a PANDAS doctor named Dr.Kovacevic who you can email or have a phone consult with. His web site: http://www.webpediatrics.com/pandas.html Other things to consider trying : Inositol powder (a B vitamin) helps with OCD, 5HTP helps with anxiety- both can be purchased at a health food store. Does he still have impetigo? If so get a prescription for mupericon (Bactroban). It is a topical ointment that kills strep. Even though he is on an oral antibiotic, the mupericon can still help with the strep on the skin. Hang in there! Colleen

Thank you everyone for your responses. I never even thought about the potential for a flareup with losing baby teeth, BUT it makes perfect sense! I will watch my 3 younger children for potential flareups as they lose their teeth. My gut tells me to add the Keflex (which I have) even if it is just a short course. If she were having only 1 pulled, maybe I would think diferently, but 8 seems to really open her up to possible release of any strep that may be lingering. Do any PANDAS families notice problems with getting teeth very late, and losing them very late? My two oldest children did not get their first tooth until 18 months. My 12 1/2 yo still has 8 baby teeth. My 8 yo has only lost 2 teeth. When they lose a baby tooth, it literally takes months for the adult tooth to come in. Just wondering if this has anything at all to do with PANDAS. Thanks, Colleen

Caryn, Thanks for your response. The 8 teeth being pulled are baby teeth. I just realized that I did not put that in my original post. She had the allergy food testing (I think it was ELISA?) about 4 years ago and they tersted for about 600 things- she was only sensitive to four of those tested. Does that include celiac screening? I have never tested her for leaky gut. How is that done? Thanks, Colleen

I was wondering if anyone has any advice. My PANDAS daughter (12) has to have 8 teeth extracted tomorrow. She has been on Zithromax 250mg since October (with a few breaks due to vomiting virus- she recently got an ear infection despite the Zithromax which worries me). Yesterday I gave her Zith 250mg, but today plan on giving her 250mg twice. I am so worried that despite the Zithromax she will have a flare up of symptoms b/c she has to have so many pulled. EAMOM, I remember you saying that your daughter had the worst flareup after having a tooth extracted. Do you think it would be overkill to add a few days of Keflex? Any suggestions would be appreciated! Thanks! Colleen

FYI for anyone who may have a child with perianal strep: This study shows that Ceftin (cefuroximine) is much more effective with perianal strep- much better than penicillin. http://www.druglib.com/abstract/me/meury-s...r_20081200.html Strep on the skin, whether it is perianal or impetigo, can cause PANDAS symtoms. If you are exposed to impetigo, you can get strep throat. If a child ever has impetigo, I would be extremely suspicious that they could also have strep throat. Perianal strep is often misdiagnosed as a yeast infection. If a yeast infection does not go away pretty quickly with treatment, suspect strep and do cultures. The skin can be cultured just like the throat. Colleen

Those symptoms are very suspicios for strep (headache, vomiting, sore throat, behavioral changes). The strep test could have been negative b/c he had only been off Augmentin for four days. Hopefully if it is strep, the test will be positive today. Are they culturing it out for 72 hours? Don't ever rely on the rapid strep test UNLESS it is positive. What COULD have happened is that the Augmentin got rid of enough of the strep to lessen symptoms, BUT upon stopping the Augmentin, your child was either re-exposed to strep, OR there was still strep in his tonsils that just recolonized. This has happened SO many times with my children. Does your child have large tonsils or has any doctor ever mentioned they look cryptic (this makes them more likely to harbor streo in the tonsils AND adenoids and it EASILY recolonizes itself upon stopping antibiotics). They can't give you Augmentin again b/c he was just on it. I would push for either a cephalosporin (Keflex, Omnicef) OR Zithromax. Good luck! Colleen

Melanie, Given your son's age and weight, I agree with EAMom's suggestion of increasing the Zithromax to 500mg/day, even if it is just for a 10 day course. You could then re- evaluate switching to a dose of 250mg. My niece who is 8 and weighs about 65 lb. was put on a ten day course of 500mg/day of Zithromax by her pediatrician. This pediatrician is very cautious with antibiotics, but told my sister that in the case of strep throat, and given that my niece was in a bad episode of PANDAS, the 10 day course of 500mg was warranted. My daughter weighs about 125 and is 12 1/2. She is taking Zith 250mg/day, but when I see a big flare up of PANDAS symptoms, I bump her up to 500mg, usually for 5 days. Talk to your doctor about it. Certainly a short course of Zith 500mg is not going overboard at all, IMO. Colleen

Bronxmom, Does your son have bad reactions to red dyes? I am pretty sure the tylenol with codeine liquid has red#33 and red#40 in it. My kids went berserk (for lack of a better word) once when they were taking Keflex liquid with red dye. Maybe that is a possibility? If that is not it, I would agree with seeing about switching him to Azithromycin, even if it is for a few weeks, and then rethink putting him back on a cephalosporin or keeping him on Zithromax. Is his pain any better? Colleen

Hi Bronxmom, It looks like your son is getting the treatment dose. If he is taking 3.5ml/twice a day, he is getting 175ml twice a day, which is the treatment dose. Hope he is doing a little better. Colleen

Michele, I think it could be perianal strep. I know the doctor said it was not red enough, but it could still be strep. They can swab his anus and culture it just like they do a throat culture. If it turned out to be perianal strep, they would almost have to give you Zithromax. It it were worms, it would be better by now. Colleen

Bronxmom- Is he on a treatment dose of cefdinir? The anger could be irritability b/c of pain, but I agree that it sounds PANDA-ish to me, also along with the cartoon and crowding statements. I think that when you remove infected tonsils and adenoids, some strep does get "released", so just make sure he is getting a full dose of Cefdinir and not a porphylactic dose (7mg/kg twice per day OR 14mg/kg once per day). Did he get any IV antibiotics during surgery? Colleen

There is nothing wrong at all with giving ibuprofen along with the tyelenol with codeine and I did that with my kids. The reason I didi not suggest it to Bronxmom was b/c it can slightly increase the risk of bleeding and I did not want to suggest it b/c of that. I think if he is in a lot of pain six days postop, which it sounds like he is, the temporary use of Tyelenol with codeine is needed. Colleen