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colleenrn

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Everything posted by colleenrn

  1. I posted this by mistake on the Tourette's forum. Has anyone used Augmentin XR on a 10 year old or just regular augmentin? Colleen
  2. I was just wondering the youngest age of anyone using Augmentin XR on their children. TIA. Colleen
  3. I used to have a comprehensive list of PANDAS symptoms- I think a combination of info from Dr. K and Dr. T, but I had it saved on my desktop and my monitor just died so I cannot access it. My brother and SIL are realizing that their two children most likely have PANDAS too. I wanted to show them that list b/c I have thought they have had PANDAS for at least 2 years. With my nephew's recent post strep glomerulonephritis diagnosis, they are read to start looking into it. TIA. Colleen
  4. Chemar Yes. I posted it on the Lyme board by mistake, then posted it on PANDAS side. Thanks! Colleen
  5. This question relates to my nephew. My 4 kids have PANDAS and my sister's two kids have it (and I think her 3rd also). My brother has two children who get strep a lot, sometimes have night terrors with strep, once had very mild tics with strep, and I have observed extreme irritability with his two kids while my kids are in a flareup (I think his kids had strep and exposed my kids, causing their increase my kids to have an increase in PANDAS symptoms). SO, I am very suspicious that they will develop PANDAS possibly. My nephew was diagnosed with strep last Friday and put on Amoxicillin (UGH... it has not worked for my kids or sister's and I told him to go for bigger guns...) A week later, today, he is still so sick. Today he is diagnosed with post-streptococcal glomerulonephritis. After a conference call between myself, my brother, and his dr. (b/c dr wanted to just stay with amoxicillin), we convinced dr to switch to Biaxin. His 3 year old sister developed what sounds like a nasty perianal strep rash yesterday also (dr put her on Biaxin after agreing to switch brother to it). My question is, does this lend any evidence that these two children have PANDAS? I know non- PANDAS kids can get it, but it is not very common. My thought is that he had untreated strep for a long time and that is why he developed it (and the amox did not clear it). He tends to not get physical symptoms (fever, sore throat) with strep, so he may haver had it and they just did not know. Just wondering if anyone can shed light on this. TIA. Colleen
  6. This question relates to my nephew. My 4 kids have PANDAS and my sister's two kids have it (and I think her 3rd also). My brother has two children who get strep a lot, sometimes have night terrors with strep, once had very mild tics with strep, and I have observed extreme irritability with his two kids while my kids are in a flareup (I think his kids had strep and exposed my kids, causing their increase my kids to have an increase in PANDAS symptoms). SO, I am very suspicious that they will develop PANDAS possibly. My nephew was diagnosed with strep last Friday and put on Amoxicillin (UGH... it has not worked for my kids or sister's and I told him to go for bigger guns...) A week later, today, he is still so sick. Today he is diagnosed with post-streptococcal glomerulonephritis. After a conference call between myself, my brother, and his dr. (b/c dr wanted to just stay with amoxicillin), we convinced dr to switch to Biaxin. His 3 year old sister developed what sounds like a nasty perianal strep rash yesterday also (dr put her on Biaxin after agreing to switch brother to it). My question is, does this lend any evidence that these two children have PANDAS? I know non- PANDAS kids can get it, but it is not very common. My thought is that he had untreated strep for a long time and that is why he developed it (and the amox did not clear it). He tends to not get physical symptoms (fever, sore throat) with strep, so he may haver had it and they just did not know. Just wondering if anyone can shed light on this. TIA. Colleen
  7. My concern would be that she could have an active strep infection on only 100mg of zithromax and I would want to increase it to a treatment dose, if only for a few weeks and then drop back down to 100/day.
  8. Four children all with PANDAS. They present very differently though. Two nieces/ nephews have PANDAS. Also suspicious of three other cousins. IMO, I think if sibling has PANDAS, it is likely others will and drs should understand that, not think we are crazy. When talking to your Dr, remind them of rheumatic fever. If a sibling had RF, de would be keeping an eye on siblings
  9. They said to have her walk straight to bath room and give sample. Good luck at your appointment with Dr L.
  10. I would increase the Zithromax to 250 mg/day. For her weight, that is the treatment dose. You could decrease the dose in the future if needed.
  11. Thanks for all the responses. Good news!!!! Her first morning urine was negative for protein so our NP thinks it is orthostatic proteinuria and wants to check her again next year. I think I will have her rechecked sooner than that, but I am so relieved! Colleen
  12. We have had good success with Keflex and Omnicef, both cephalosporins and similiar to ceftin. Colleen
  13. I posted on the PANDAS board about this earlier. I am wondering if protein in the urine has been a common finding in people with Lyme? TIA. Colleen
  14. Just took my 14 year old daughter with PANDAS to the dr's for a sports physical. Everything was fine except she had protein in her urine. My NP said it could be orthostatic proteinuria which is not really uncommon in teens. Of course, my worried mommy brain goes straight to thinking I am causing kidney damage b/c of all the antibiotics. She is curently on Augmentin and zithromax and two weeks ago finished a month long steroid taper. We are to do a first morning urine which I will try to get tomorrow so I can find out asap. If the first morning urine has protein in it, my NP said she would want my daughter seen by urology. I am wondering if anyone has any thoughts? Anyone have a child with proteinuria? TIA. Colleen
  15. My kids have been on zithromax since October 2008. When they began their weights were 40 # to 110 lb. The lowest dose was 250 mg per day. My son who was 40# now is 50 #. I increase him to 375 with flareups . My oldest child takes 500 with flareups. Treatment dose should be no less than 12 mg/kg/day.
  16. I am in Cville and would love to talk to you. I actually am the person that Martha talked to you about. You are on the right track. Just need to get him antibiotics asap. Colleen
  17. Can you scan the lab results and post? Or can yo just post the CAM for now?
  18. kcdc3- Is your daughter on antibiotics now? Was she on antibiotics pre-op or post-op? If not, my opinion is she needs to be on the asap. Three of my 4 PANDAS kids have had their tonsils and adenoids out. One of my kids had a flareup post-op day 2-3, then settled down. He was on antibiotics pre and post op, but I increased them the 1st few days. It seems like the trend with ENT's is to not use Antibiotics pre or intra or post op and this is really concerning for PANDAS children. IF your child is on treatment dose of a good antibiotic and having an increase of symptoms it could be temporary, but I would err on the side of caution. IMO and experience, children with PANDAS absolutely need antibiotics, full strength pre and post tonsillectomy and adenoidectomy. Colleen
  19. I had this exact conversation with my husband last night. I am the one in the trenches and he supports it but knows very little about it. Last night, in an attempt to make him realize just how serious this is and how I am the one who lives in fear that the next infection (whatever it be) could put any of our 4 kids into a place that he can't even imagine. I said, "what if I die tomorrow? You will be the one in charge of this". His answer was, "Well, I'll just have to get onto latitudes" (meaning after i am gone, not now)..... Two of my sister's children have PANDAS, so I remind her from time to time that if evr needed, she may have to step in to help. It is scary to think or talk about. I completely hear what you are saying. Colleen
  20. Yay!!!!!!!!!!!!!!!!!! Thanks for posting. Let the skeptics dispute these findings. Soon they won't be able to. Colleen
  21. My children do tend to get very high fevers with illnesses (103-103.5), but I have not noticed a decrease in tics. Could he have strep right now? I would be concerned that with the high fever and the ramp up in symptoms, that it is strep. You can get strep while on Augmentin, especially if the dose is on the lower side. How much does he weigh and what dose of augmentin? Colleen
  22. The strep titers are elevated. You can have PANDAS and have normal titers, however, so you cannot rule it out based on titers. How much does he weigh and what is the dose of Augmentin. One important thing about Augmentin is that it must be given every 12 hours or every 8 hours to be effective. Based on what you have described, it sounds like it could be PANDAS. Adding ibuprofen in the short term can help b/c it decreases the inflammation in the brain. Colleen
  23. My 14 yo PANDAS daughter apparently has influenza B. Several of her friends have tested postive for the flu, with the same exact symptoms as my daughter. It does not seem to be respiratory related at all. It started yesterday with extremely bad abdominal pain, chills, head ache, and intense dizziness. I had to hold her head while she was trying to vomit b/c she kept blacking out. Her last day of prednisone was Monday and the flu symptoms started Friday. Does anyone know how long it takes for the steroids to completely get out of her system? She was on 32 days of prednisone (60, 40, 20, 10). My concern is that her immune system is still suppressed from the steroid, but maybe it is out of her system by now. TIA Colleen
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