colleenrn

What was your son's mycoplasma pneumonia level? I think zithromax or Biaxin are best to terat M.pneumo. Colleen

How great would it be for the NIMH to spend this "stimulus" money on our sick and suffering children. BUT no, the NIMH spent it on teaching men in Africa to properly cleanse their penises. I am all for HIV research and funding, but I am so mad that this is a priority over our children. It is disgraceful. http://projectreporter.nih.gov/project_info_details.cfm?aid=7814411&icde=5021426 Colleen

Yes, the faint pink line on the rapid test does mean it is positive. The culture should come back positive too, but I would treat based on the rapid. This has happened to us a few times. Colleen

I know we talked about this last flu season, but in case anyone is unaware of oscillococcinum, I thought I would mention it. Oscillococcinum is what has gotten us through so many flus. You give it at the very start of symptoms and end up giving 3 doses in all. It is a homeopathic remedy that works like Tamiflu in reducing the viral load. My doctor told me it can actually cut the viral load in half. Check with your own doctor, but it can be given to all ages. I also took it years ago when I was pregnant and had the flu. Colleen

None of my family will get any flu vaccines, nor have we ever. We do get the flu, but I have never seen a PANDAS flareup with the flu in my children. They also have had chicken pox and pertussis over the past two years with no flareups, so maybe we are lucky and don't respond much to viruses. I am not sure. A few of my children had both flus last Fall. I am very concerned, as I was last year, about my children being around people who just received the Flumist. Regardless of what most physicians will tell you, it is a live vaccine and it is shed by the person who receives it. I feel like our children are at risk being in close contact with children receiving the flu mist. My youngest child just started preschool and a few of his classmates received the Flu mist the last week of August (earliest I can ever remember flu vaccines being given). These children looked sick to me and some of them had go home sick. This was 3 days after receiving the flu mist. Their eyes were glassy, they had dark circles under their eyes, they were very fatigued, and sneezing. I am now watching my child for signs of the flu. He has been sneezing, but so far so good. It is a hard decision to make. Colleen

I am so sorry that you and your family are getting the run around from these drs. We did our testing through Dr. T. We did a phone consult and he emailed me the orders to have all the bloodwork done. I took the orders to a lab and they were able to do all of the tests. Why won't your family dr even swab you and your family? Given your history they should be swabbing you whenever you feel you may need to be tested. I can relate to the first few days in school and already there is strep. It was still August and kids at my youngest child's preschool had strep. Colleen

If it is going to Dr. Cunningham, I am ordering! Colleen

Amy- What antibiotic did they put you on? Maybe D., B would increase their Aug or add something else for just 10 days. Hope you get better soon! My 4 year old has just finished his 1st 3months on Augmentin. He was so ill in May and it all started with strep, but I was winging it when my doc asked me to come up with a good dose. He is only taking Augmentin 250mg, twice per day. Now I am wondering if he should be on Aug ES and at a higher dose. Colleen

I googled "pandas necklace green crystal" and it said $10 per necklace goes to PANDAS research, but WHO exactly does it go to?? Colleen

I have 4 children with PANDAS, but it is my oldest (age 14 who began at age 5) who has the most severe. She had the "classic" overnight onset of tics, OCD, anxiety. She continues to struggle )no where near as bad as years ago, but still not good) despite being on 2 years of Zithromax, with courses of other antibiotics added in. My next child (now age 9) started to show more "emotional", labile behavior at times and would test positive at those times for strep. I have seen very few tics with him ever, just mostly irritability, forgetfulness, sometimes defiance, easily crying, etc.. My 3rd son (age 7), same as my 2nd. My 4th child (age 4), pretty much the same, but began his PANDAS journey much younger, around age 1 or so. I think that there is a wide spectrum of symptoms and severity with PANDAS. I also wonder if my 3 younger children were treated more agresively (quicker to give antibiotics, longer courses of antibiotics) and that is why their symptoms are not as severe. My niece and nephew (my sister's children) have "classic" PANDAS, yet I am very suspicious that their youngest sister has a "milder" case of PANDAS, yet still has it although not yet diagnosed. My other set of niece and nephew (brother's children) make me very suspicious that they also have PANDAS. They get freuquent strep and ear infections. When they are sick they have behavior changes, with very occassional tics, night terrors, emotional behaviors. I think one sibling can have a more severe case of PANDAS, but I also beleive maybe some of that is b/c we "know" more b/c of the 1st child and jump quicker to treat the 2nd b/c of our increased knowledge. With all of that said, I know that things can always change for the worse, but I hope and pray my children with the "milder" form of PANDAS, do not worsen. Colleen

Can you get his titers checked? Chances are, if he had the first varicella vax, he will have enough immunity, but the titer will tell you for sure. If he has enough immunity to varicella, he does not need a booster. That is the vaccine I would be the most concerned about giving b/c it is a live vaccine ( I also had a bad experience with one of my children with it).

I think in the interest of helping our children it would be a great benefit to know, to get a heads up, on who would be an utter waste of time taking your child to see, whether it be an MD/RN/NP/facility/specialist/etc..... If we have had a teriible, useless experiences with a particular health care provider, is it not in the best interest of all of us and our children to know who these people are so we don't waste precious time with them?? If someone has seen a health care provider that doesn't even acknowledge the meer existence of PANDAS, should we not alert each other? I don't understand. I am not alking about slandering someone, just giving a fellow PANDAS parent a heads up. SPTC Mom- I agree with you. Colleen

One of my children tested postive for band 41 on the western blot done through Quest Lab. Does this mean I should have him retested through Igenex?? We live in a Lyme area- several neighbors have been diagnosed in the past 2 years. Colleen

For parents with elevated strep titers: When do you recheck your titers? Is one month on antibiotics enough or are parents taking antibiotics for more than a month and then rechecking? I have an appt. with my dr today and I am not sure if I should have my titers redrawn or if I should request one more month of antibiotics for myself, then retest the titers. I have been taking zithromax for one month (first 2 weeks I took 750mg/day and now I am taking 500mg/day) TIA! Colleen

I breastfed all 4 of my kids, all 4 are PANDAS. First two for 18 months, 2nd two for 3 years. No formula.

I know some of us parents have elevated ASO titers, but I was wondering if anyone has gotten an elevated DNase B or streptozyme. My antiDNase B titer is 85. My streptozyme is 400 (normal is below 100). My ASO is 396. None of my children had any elevated titers. My husband has not had his done yet, but I suspect he may be in the same boat as me. I am on Zithromax and will be retested soon. I have been taking zithromax for about 3 1/2 weeks. Colleen

The "whether to vaccinate or not" question is very difficult. I can only share my experience. I fully vaccinated my oldest child, except she did not get her last MMR booster at age 5, nor has she recieved any since (only was due for a DTap and Gardasil at age 11-12). She has hard the most severe of the PANDAS symtoms so far. My opinion is that vaccines played some part in that. My next 3 children have only received the polio vaccine b/c I was so afraid of what I had learned about vaccines and PANDAS. I researched it for years and came to the decision that not vaccinating my children was safer than vaccinating them. My 3 youngest children have all contracted pertussis (whooping cough) and chicken pox. All 3 children did fine with both illnesses and I did not see an exacerbation of PANDAS symptoms with the illnesses. I would be extremely hesitant to give any live vaccine to any child with PANDAS or a sibling of a child with PANDAS. I am very against the varicella vaccine (chicken pox) and the Gardasil vaccine (for HPV). I have seen it make children very sick before, but again, it is such a personal decision for your family. I know it is such a hard decision that we struggle with. Colleen

Thanks everyone. It sounds like we need to do the Igenex testing. Wendy- I am eager to hear what hapens at your meeting. Have you done any further testing for Lymes yet? Colleen

Thanks so much for the replies! I am still waiting to hear from Dr T, but I plan on further testing- Igenex, I guess is the route to go. I have been through so much with my kids with strep that I want to get a handle now on this if it could be Lymes. What I find kind of strange is that all my kids live at the same house and I have pulled multiple ticks off of all four of them over the past years. Plus, 3 of our neighbors have Lymes. Why does only one of my 4 kids test positive. It makes me paranoid that I should do the Igenex testing with all 4 in case my other 3 children got false negatives, but our medical bills are soaring... Colleen

What other conditions can make band 41 positive? It is the only band my son had positive. TIA. Colleen

Last month my 4 kids and I have lots of lab work done. I have not been able to talk with Dr. Trifiletti yet about his interpretation of the results, but I obtained all of our labs today. We did the Lyme Disease antibodies western blot (IgG, IgM) Only one of my children (9 year old son) tested positive, but only on the 41 band. All other bands (18,23,28,30,39,45,58,66,93) were negative or non-reactive. Does this mean he has Lyme's disease? I know that the CDC says 3 bands have to be positive, but I also know a lot of parents on this forum who say the CDC is incorrect. My ASO (which I already knew and am on zithromax daily now) was 396, but today I found out my anti DNase B is 85 and my streptozyme (on lab sheet it is called anti-strep exoenzyme) is 400. The normal should be less than 100. I am not sure if this means I also have myco plasma pneumo, but this is the result: M.pneumoniae Ab IgG HIGH 2.27 ISR (negative is less than 0.9 annd positive is over 1.1) I hope to God that I am not the one with strep and mycoplasma pneumo making my babies worse. Anyt thoughts on this would be greatly appreciated!! Colleen

If he cultures positive, you may want to think about trying azithromycin (zithromax). The penicillin 250mg 2x/day is a really low dose of antibiotics, so that may be why he was still positive for strep. I am not sure why your doctor would use such a low dose. Sometimes giving ibuprofen can help b/c it decreaeses brain inflammation. Have he ever been on a steroid burst or more extneded course of steroids (one month) to also aid in decreasing inflammation? That may help. I know with my children that they decline whenever they are not on antibiotics, so keeping your son on antibiotics may be needed. Colleen

Karen, He gave my 7 yo one refill, so he could take it for 10 days. I think I am going to see how they do on it, b/c maybe we could do a whole month of a tapered dose and this week could just bne their first week of it if he would extend it. My niece and nephew did the 5 day steroid burst without benefits. The next time they did it, it was for a month and they started seeing results in week 2. Can you do a 5 day steroid burst, stop and wait a week, then do a whole month of a tapered dose? Does Dr. T usually just do a 5 day burst? I know Dr. Latimer uses a longer course. I feel like I never know if what I am doing to try to help my kids is the right thing. Colleen

Just picked up the steroids and my 7 yo was prescribed 15mg/day for 5 days and my 14 yo 50mg/day for 5 days. Any thoughts? Colleen

I think your husband's dose of 250 2x/day of Ceftin is a low dose. He could be taking 500mg 2x/day. I would ask you dr about either increasing it to 500 or if it does not seem to be working, switch to Biaxin like you are on. Biaxin is more effective than ceftin in reaching any intracellular strep. I wonder if that is why Augmentin did not help your strep at all. Sometimes Augmentin is effective in reaching intracellualr strep, but other times it is not effective at all. Biaxin is effective in getting to the intracellular strep, so maybe your strep is/was intracellular. Colleen