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Everything posted by colleenrn

  1. 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
  2. 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
  3. Mati's mom- We live in VA too. I have 3 kids on Zith and one kid on Augmentin. What dose of Biaxin are you currently taking? I ask b/c my ASO was 396 last month and I am taking 750mg of Zith for a month. I am going to have my ASO rechecked soon and if it is not normal I plan to switch to Biaxin. Colleen
  4. Thank you for your responses! Yes, I have 4 children with PANDAS. None of my children have ever taken any steroids, so I am excited but nervous to see how it helps. Dr. Trifiletti said we could start with a shorter course and just see how it goes. My children were exposed to strep over a month ago and even though we increased their Zithromax, two of them are still having problems. My 7 yo will just do the 5 day steroid burst, but my 14 year old will do the larger dose. I will pick it up today, so I am not sure of the doses for my 14 yo. Emuls- Zithromax 250mg/day is a low dose for your children's weight. A treatment dose for that weight is 500mg/day. Were your children ever on a higher dose? If not and you are thinking it is not enough, you may want to talk to your doctor about increasing it. My niece weighs 65 lb. and her very conservative pediatrician doses her at 500mg/day as a treatment dose. My 14 yo weighs 130 and she has taken up to 750mg/day, as have I (I weigh a lot more than 130 Even my 80 lb. son takes 500mg/day as a treatment dose and between 250-375 as a prophylactic dose. Colleen
  5. That is great that he is eating today! It sounds like the Aug and steroid are starting to work. With his weight, he could be taking 500mg twice per day, so if you don't think the Aug is working, you may want to ask your dr about increasing it to 500, but 400mg twice per day is a pretty good dose for that weight. Colleen
  6. IIt is going to be a medrol dose pack for my 14 DD and a regular 5 day prednisone burst for my 7 DS. Did your older children do the medrol dose pack? Colleen
  7. I am familiar with the 5 day steroid burst. My 7 year old son is going to do the 5 day burst for the first time ever. We are also going to try it with my 14 year old daughter, but Dr. T is using a higher dose b/c she is an adult weight (130 #). I was wondering if anyone has used this higher dose with an older child and what the results, good and/or bad, were. TIA. Colleen
  8. We recently did a lot of bloodwork with Dr. T and all four of my kids have normal ASO titers, BUT I have an ASO of 396. I am curently on a month of Zithromax 750mg and I will have myself retested- not sure when I should though. My husband still needs to have his titers done. Colleen
  9. I just posted this on the Saving Sammy FB discussion of titers. I am a little perturbed about all of this talk on titers, to say the least. I have 4 children with PANDAS who do not have elevated titers. My oldset, diagnosed by Dr. Swedo, did not have elevated titers at the time we saw Dr. Swedo, yet was diagnosed with PANDAS. I am not trying to pick any fights with Beth M. or anyone who still believes you must have an elevated titer to have PANDAS, but after 9 long painful years and four kids with it, my patience with "issues" like this is gone. This is an autoimmune disorder. The immune system is screwed up, plain and simple. Couldn't that be the simple answer to why some kids don't have elevated titers? Sorry for my rant, but enough is enough. We have enough battles to fight in finding help for our suffering children. We do not need to add to the battle with having to "convince" some people that not every child with PANDAS has a titer rise. FB post: You do not need elevated strep titers in order to be diagnosed with PANDAS and quite frankly, I don't understand why some people cannot accept this. To those who believe an elevated strep titer is required, how would you explain a child having a positive throat culture with a flareup of PANDAS symptoms while having a normal strep titer? Some people do not get elevated strep titers when they have strep. Perhaps it is because this is an autoimmune disortder, therefore the immune system does not respond as it should or would in a person without an autoimmune disorder. By continuing to assert that a child does not have PANDAS due to non elevated titers, there continues to be a huge number of misdiagnosed children. Whether or not impetigo causes a rise in strep titers, impetigo most definitely can cause a flareup in PANDAS symptoms. Why couldn't it? It is strep on the skin. With a PANDAS child, it does not matter where the strep is, it just matters that it is.
  10. PhillyPA- How much Augmentin is your son currently taking? That is good that he just started steroids- that will hopefully kick in soon and really help. Just make sure that he is getting enough Augmentin and that if you don't see marked improvement, you switch to Zithromax. I don't have any experience with my children experiencing anorexia as part of their PANDAS, but it is something I keep on the look out for. I was a PANDAS child and I remember very well going through a period of anorexia at a pretty young age. I was somewhere between 4-6 years old and refused to eat for fear of choking. Our pediatrician told my mom that I would eat when I got hungry enough and eventually i did start eating, but that is not always the case. Nine years ago when my daughter was diagnosed with PANDAS, I tried to obtain my medical records from that time of anorexia, but they were already destroyed. I was very interested in seeing if I was put on an antibiotic at the time for an ear infection or strep, b/c I beleive that is most likely why I started to eat again. My guess is that I was given an antibiotic for something and it got rid of strep I most likely had and did not know. Colleen
  11. Only one of my four kids has ever had elevated strep titers, and that was only one time. I recently has an ASO of 396 though. Colleen
  12. Dawn- My daughter was diagnosed at age 5 and she will be 14 next month. We have had LOTS of ups and downs, but since beginning daily Zithromax, she has been doing really well. She was exposed to two kids with strep about 2 weeks ago and started with a flareup tweo days after the exposure. A few days later the anxiety began. I just read Dr K's piece on the adolescent variant of PANDAS and it definitely fits her. I have increased her Zithromax to 750mg/day and have added ibuprofen. Last night was a tiny bit better than the night before, so maybe it is working? I reently didi a phone consult with Dr T and I emailed him yesterday about trying a steroid burst or a few weeks of a tapered steroid dose, but have not heard back from him yet. We have never tried steroids with her before. Her last big flareup was 3 years ago and at thast time I did not know about using steroids to help with inflammation. I am hoping Dr T gets back to us soon. It breaks my heart to see my independent confident daughter cry her eyes out b/c she is so scared. I am terrified of anorexia also. She has shown zero signs of it, but when I was working as a psych nurse, I took care of many young ladies who were so immaciated from anorexia, they were in danger of dying. Just when I think I have a handle on PANDAS, it seems like everything blows up. In one month we are supposed to spend a week at thge beach with family who have the two children who excposed my daugter to strep a few weeks ago. I think my niece and nephew (kids with strep) may have PANDAS, but my brother does not hink so. It is so hard to make him understand that I believe his kids still have strep based on my daughter's big flareup after spending time with them. I am like the crazy lady saying, "but I know your kids must have strep. How do I know? "... Colleen
  13. I left my NP a message at 8 this morning as soon as they opened, asking her for a high dose of Zithromax (750mg) for a month. They called back an hour later saying they had already faxed it to the pharmacy! ! I guess I will take it for a month and then see about getting the ASO redone. I also am awaiting my anti dnase B and streptozyme, and mycoplasma results. Can't wait to see what those are... Colleen
  14. As far as symptoms, I don't have any typical strep symptoms (no sore throat etc..), but I have been very tired and have had some skin problems that i wonder if it could be related to strep or be strep. For example, recently any cut I get or little pimple, seems to get infected. My oldest child has had a big flareup of PANDAS symptoms lately and I attributed it to the strep she was exposed to a ferw weeks ago when she was around her cousins who were being treated for strep, but maybe it is from me... I feel terrible that i could be causing this in my daughter. My daughter is almost 14 and has been doing really well now for the past year and a half on daily Zithromax. Now she is having what seems to be panic attacks at bedtime. He pulse satrts to race very fast, she gets very scared/nervous/crying. This occured for a few weeks 5 years ago and never again until this past week. So frustrating and heartbreaking. Colleen
  15. Thanks for the replies. I am going to call my dr this morning and ask her to treat me b/c of my ASO being 396. I am wondering if I should be treated with zithromax or augmentin. Any thoughts? Colleen
  16. We recently did a boat load of lab work (per Dr. T) on my four children and also ASO, ADB, and streptozyme on me. So far just a few results have returned (ASO). The ASO is normal in all of my children but mine is 396. The lab that did the test has 0-200 as the normal. With mine being 396, I think I need to be treated, but I am looking for input from all of you! TIA! Colleen
  17. Sweet Cheks, When it says 200mg/5ml it means that is the dose once it is reconstituted, which just means has the water added to the powder. When you measure out 7.5 ml you are giving him 300 mg of Zithromax (200mg in 5ml and another 100mg in the 2.5 ml). For his weight, he is getting almost 13mg/kg/day, whicch is a good dose. Colleen
  18. If he is taking the 200mg/5ml zithromax suspension at 7.5 ml/day, he is getting 300mg/day, which is a pretty good dose. How much does he weigh? Colleen
  19. What a relief! That is great!! Colleen
  20. Here are some links that talk about xylitol. It can kill certain bacteria that lives in your mouth, nose, throat. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC90255/ http://aac.asm.org/cgi/reprint/39/8/1820.pdf http://www.xylitol.org/drmakinen.asp
  21. I will pray for you that everything goes OK. Haver you ever added xylitol products? You can get xylitol nasal spray, mouth wash and gum. Maybe you can get your kids to chew the gum, gargle, and even use the nasal spray. It just helps to kill any strep in the nose/mouth and it is harmless. If you injest too much xylitol (the sugar crystal type) it can give you some diarrhea, but I have never had that happen with the gum or mouthwash. My 3 yo son even tolerates the gum fine. Good luck! Colleen
  22. Yes, we either increae dose or add another antibiotic for 1-2 days prior and after. This includes teeth cleaning. My niece had a bad excacerbation with teeth cleaning and my 3 yo became extremely ill after his first teeth cleaning. Neither were on prophylactic antibiotics at the time. Colleen
  23. That is a good dose of penicillin as long as the bottle reads 250mg/5ml and not only 125mg/5ml. The range is 25-50mg/kg/day, so she would be getting almost 45mg/kg/day with hat dose (as long as it is the 250mg/kg concentration). Colleen
  24. You may want to consider trying a different antibiotic as Amoxicillin can have up to a 25% failure rate with strep. A cephalosporin (keflex, omnicef) or Zithromax could be more effective. I would be careful about having her tonsils out with erradicating the strep first. Amoxicillin has a hard time erradicating strep sometimes. If her tonsils are cryptic and swollen it will be very beneficail to have them removed. Colleen
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