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colleenrn

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Everything posted by colleenrn

  1. I need help understanding why my children with PANDAS will have dilated pupils one day, the next day they don't, then two days later they are dilated again. It seems so random to me. I have posted here a lot, so I am probably repeating our history. My 3 oldest children are definitely PANDAS- not absolutely sure about my 2 1/2 year old son, but it looks like he may. He has has strep 3 times in the past year with no physical symptoms, just behavioral. Last Tuesday he woke with 103.5 temp, headache, sore throat. Rapid culture negative. Had them send out a 72 hour upper respiratory culture. Came back negative for strep, "normal" respiratory flora with heavy growth (his cultures always read heavy growth, so if anyone can shed light on that??) Because of our strep history and my strong suspicion that he has strep based on behaviors and abrupt onset of sleep apea (sleep apnea occured in my 2 oldest children whenever they had strep until they had their tonsils and adenoids removed) that my wonderful Nurse Practitioner gave me a script for Zithromax. He is on day 7 of Zithromax (we are doing 10 days) and is doing better, but still has the apnea, although it has definitely improved. He periodically has dilated pupils, but tonight they are so dilated I can barely see his iris. They are huge. I just don't understand why they could be dilated one day and not he next, then dilated again. Can anyone explain this to me? I know giving Ibuprofen can help, but I don't understand what is going on. If his basal ganglia is inflamed, how could the pupils go from regular size, to dilated, back to normal, so quickly. My sister's daughter is also PANDAS and she says some days her pupils are huge, some days they are normal. It sems that they wouyld be huge, then slowly go back to normal size, not jump around. Thanks so much for any input!!! Colleen
  2. That is really scary, that our children ON Zithromax can have a ramp up of symptoms when just exposed to strep. I know if they are not on antibiotics and are just exposed to strep they can, but I ws feeling pretty safe that it would not happen while on Zith. EaMom- Did you increase your daughter's dose or just ait it out until your Augmentin kicked in? I am curious why they put you on Augmentin rather than Zith. Colleen
  3. The problem with relying on titers is that sometimes the titers are normal even in the midst of a PANDAS flareup and they still respond to antibiotics. This has happened with two of my children. Had my physician based prescribing antibiotics on these titers, who knows what would have happened with my children. Instead, we treated with antibiotics based on their PANDAS symptoms and they improved. We are taught in health care that you must have abnormal titers with strep and that is just not so in every case. We are told that the throat culture must be positive to have strep and that is not so. I am frustrated after so many years of trying to explain to multiple physicians how PANDAS works in my children. Strep is not cut and dry as it is taught. Colleen
  4. If the history and laboratory studies are negative, then no association can be identified and the patient does not have PANDAS. If they are positive, the patient should be followed over time. This is the problem I had with Dr. Fuhlbrigge's article. My children have had negative throat cultures during a flareup of PANDAS and when given antibiotics, they respond and their symptoms decrease. If the strep is elsewhere (sinuses, gut, skin) then the throat culture would be negative. I think statements like this increase the likelihood that some children will have untreated strep because physicians will be unwilling to treat based on the neg culture. Colleen
  5. Deanna- Maybe your doctor got the NIMH study confused, b/c it was Zith 500mg/week, not penicillin. I agree, penicillin once per week would be very ineffective. Lismom- My kids have been on Zith since October, and fingers crossed, doing well. My 6 (50#), 8(70#), and 12 (120#)year old are on Zith 250 mg/day. When I see an increase in symptoms (their schools are full of strep cases- worse then ever, so they are constantly exposed to it) I increase the dose to 500mg for my 12 yo. I agree that it can take a few weeks to see a big improvement. Five days, in my opinion, is usually never enough in PAndas KIDS. I question whether five days is enough in non-PANDAS kids. Colleen
  6. I wrote to Oprah show about two years ago, explaining PANDAS and pleading for them to consider doing a show, especially b/c it is still not widely known and kids are getting misdiagnosed. I never heard back and did not pursue it further. I would be glad to write to them again! Colleen
  7. Here is the contact info if anyone wants to email this doctor. I just sent him an email- we will see if he responds. Dr. Robert C. Fulbrigge, MD, PhD Primary Office Location Children's Hospital Boston Division of Immunology 300 Longwood Avenue Fegan 6 Boston, MA 02115 Colleen
  8. TMom- Yes. Ask for an upper respiratory culture and try to get them to run it for 72 hours. Some drs offices/labs say "we don't do 72 hours", but in reality they can and will if the physician orders it and you are assertive that you are paying for it and want it grown out that extra day. It was Dr. Swedo who told me to always insist it be grown out for 72 hours, but, of course, the NIMH web site does not reflect that. AmySLP, Thank you for the cardiac info! Colleen
  9. Once again, physicians putting out incorrect and damaging information. I don't understand why a physician can't comprehend that you can get a negative throat culture AND still have strep. It is basic knowledge that strep lives in many other areas of the body. I am in the process of sending that physician an email about this. I get so mad when I read this incorrect info that will cause a parent ot think their child does not have PANDAS when they really do and the family suffers greatly b/c of it. The way I deal with that anger is to send emails directly to the different physicians explaining why they are so very wrong and giving them the correct information. I will post if I get a response from him. I think it takes all of us calling these docotors on their ignorance when it comes to spewing out misinformation. Maybe, a little at a time, we will change their thinking! Colleen
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. My 8 yo severely grinds his teeth in his sleep. I was wondering if other children with PANDAS also do that. Thanks! Colleen
  17. 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
  18. 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.
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
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