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peglem

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Everything posted by peglem

  1. What dose of zith is he on? and what does he weigh? Did you see any improvement with the zith? Any with the zoloft? Were both meds started at the same time? I would not want to stop the abx. Can you talk to the therapist about PANDAS (is this who rx'd zoloft?) and see what they think?
  2. I bolded the part I'm responding to. My daughter had this as well. Since she couldn't speak to explain, school assumed it was behavioral! (ODD)They gave her consequences for it. We thought later (after it went away) that perhaps they were atonic seizures. This was before we knew about PANDAS.
  3. It may have been the diflucan, but when we were on the diflucan and just the augmentin...the yeast didn't clear. She's doing better now on just the zith.
  4. Are you giving probiotics daily in between doses of Antibiotics? Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early. peg, sorry, could you clarify your above post. what did you mean by going off augmentin and the yeast cleared in two days? is that possible, just by being off antibiotics? or was it treatment with diflucan? is that what you meant? and what is rifampin and what does it do? thanks. EDIT: oh, I see by your above reply to Angela that you may be talking about vaginal yeast? oh, then I can see the symptoms can be monitored, but are you also talking of gut yeast? Also, when you went off the augmentin, did any symptoms come back, or stay the same, or did you go o another abx? Faith Rifampin is a bacteriocidal abx that works intracellularly, and is usually used for tuberculosis in combo w/ other abx. We were on the rifampin+875mg 2x/day of augmentin. This for 10 days, after which we stayed on the augmentin. The vag. yeast showed up @ day 8 into the combo, but had to wait til the rifampin was finished to do diflucan, as they cannot be taken together. So, did the diflucan and continued on augmentin. On days 9&10 of the combo, and the day after- despite the yeast, we had 3 very good days of low PANDAS symptoms. Then, still on the augmentin, PANDAS symptoms began to flare again and after a week, I was back in the doc's office begging for rifampin like an abx junkie! What the doctor decided to do (rifampin is dangerous to the liver) is 500mg/day of zith for 5 days, then switch to every other day, and continue the augmentin for another 7 days. I quit the augmentin after 5 days instead- after another dose of diflucan. Things simmered down after that. She's still on 500mg. zith every other day. The yeast is much improved, especially the yeasty behaviors.
  5. Okay, thanks. No further probing necessary.
  6. Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early. Are the antifungals you are using just topical that you buy at the grocery store? I've had dd put Monistat one day treatment that comes in an applicator tube (we just squeezed it out and applied it by hand) on the rash on her bottom. Is your child's rash vaginal or just on the external skin? I've read somewhere that on the skin you can also use althete's foot antifungal. Angela She's been on oral Nystatin for at least a year. Then I was giving her probiotics in between the abx dosing. Once the vaginal yeast showed up, I started giving probiotics @ every 2 hours. The vaginal swab came up positive for yeast (only, was neg for bacteria). Was prescribed monostat topically until rifampin was finished.(2 more days). Then a single dose of diflucan, plus continuing monostat. (diflucan is weekly dosing). The yeast still didn't clear up. Did another diflucan the following week....still did not clear up. Once I stopped the augmentin and did one more diflucan, it finally cleared.
  7. I was looking for somebody who has read the PANDAS: horse or zebra editorial, by DL Gilbert & R Kurlan... Is it saying that PANDAS is common or rare? Are these authors naysayers? I know the study you posted claims PANDAS is almost nonexistant.
  8. Did anybody read this editorial? I don't have access to the full text, but from the title, I'd sure like to know what it says! http://www.ncbi.nlm.nih.gov/pubmed/1979412...p;ordinalpos=40
  9. Are you giving probiotics daily in between doses of Antibiotics? Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.
  10. When I was pregnant with my youngest child (yes, the autistic/PANDAS one) about midway through the pregnancy, I started having this thing happen. Each morning when I got out of bed, I had excruciating pain in the arches of my feet. It was REALLY painful! After about 10 or 15 minutes of gingerly "walking" on them, it would go away. The other thing that would happen (and still very infrequently happens) is I would get "hot foot" at times throughout the day. This is like burning heat on the bottom of my feet- like a fever inside. I reported to the doctor at my preg. appointments- they said "hmmm, well there's no swelling there." And assured me this is normal for pregnancy. But this was my 4th pregnancy and it had never happened before. I think it continued for awhile after my daughter was born as well. I don't think it was normal and I never figured out what caused it.
  11. Oh, sorry, not a dumb question- I had to go look it up because I've been using the acronym so long, I couldn't remember what it stands for. AED- Anti-Epilectic Drug.
  12. So good to hear your experience was so positive! Zith stops the bacteria from multiplying- it also will get to any strep that is intracellular. Augmentin kills bacteria at higher doses.
  13. We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.
  14. I don't know of any studies, but I'll tell you my doctors rational in doing rifampin+augmentin. Once we figured out that she probably had intracellular strep- he made the comparison to TB, which he says goes intracellular as well. So, we tried the rifampin which goes intracellular, but he said doesn't kill the bacteria and then used bacteriacidal doses of augmentin.
  15. Actually, a pediatrician is likely to have more expertise in antibiotics than a neurologist would, and you can get in to the ped more often, so I think that makes a certain amount of sense. By the same token, a pediatrician is probably not the right person to decide which AED your child may or may not need.
  16. No recovery tale here...YET. Just wanted to congratulate you for taking such quick action! Wow, within weeks of the 1st episode...great work! And you had the good sense to live close to an experienced doctor! Welcome!
  17. Oops! I answered on the "how much abuse" thread!
  18. Applied Behavior Analysis. It worked for things Allie actually had control over, but didn't help at all with ragey meltdowns/aggression/obsessions. Her school 2007-last spring was an ABA school...by the end of last year, the behavior specialist informed me that ABA is not working for my child-they've been "through the book"-twice, so I should take her to the psychiatrist to get some help with that (actually the school hires a non staff "consultant" for that, since its not legal for them to do it). They wanted to talk with her psychiatrist- but I would not allow it. We had tried several psych meds during those 2 years, even the holy risperdal. She's at a different school this year. :( Anyway, what I've heard from others in the autism community is that when the kids are very young, 3-6 years old, it seems somewhat effective...but older than that seems to be mixed results. Many adult autistics are very critical of it and report that they felt demeaned and manipulated by it. But, if you are seeing positive results- and since you are post IVIG, it may just be a matter of restoring regular expectations and consequences again- they can help you be systematic about that. But I think when kids are in exacerbation it can make things worse as you insist they get control of things they just can't.
  19. Speaking of hyperactivity, just this evening...after a few ragey episodes...Allie suddenly turned happy....TOO happy, manic happy-screeches and wild. insane laughter/giggling. Running frantically from the computer, down the hallway, jumping on my bed-then back to the computer (like her tail is on fire) and she's been doing this for 2 hours straight and it doesn't look like its going to end anytime soon. I'm so exhausted...I'm just letting her. I don't think I could stop her anyhow. At least its the happy type mania. Praying she sleeps tonight.
  20. Nodding my head and smiling! Anything to get a few moments of peace!
  21. Mine sure does!
  22. The flash would make it smaller than it was at the time- check it out on yourself in the mirror with a flash light. In dim light your pupils will be fairly large (to collect more light so you can still see) but when you shine the flashlight, you should see a very rapid reduction in pupil size.
  23. Did you use a flash to take the pictures? There will be some pupil closing due to that. In exacerbation my daughter's pupils get so big, you can hardly see the iris at all.
  24. Very intriguing, Kim. My personal opinion is that the HepB vaccine on the day she was born (1994) has a LOT to do with my daughter's health problems, ie...autism via PANDAS.
  25. It can be a sign of brain inflammation, or a sign of hyper-alert, on the verge of fight or flight reaction. One of the things that happens when you are frightened is an autonomic reaction, that dilates the eyes (so highten vision so you can defend yourself), dilates blood vessels so your muscles and sensory organs get more oxygen (again to increase defensive capabilities), and increases clotting factor in case you get injured. And, of course, adrenaline surges for strength.
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