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Kayanne

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Everything posted by Kayanne

  1. I just wanted to post this link: http://noairtogo.tripod.com/prednisone.htm About a third of the way down, under "Administration Guidelines" it says this: "All oral dosage forms: Administer with meals to minimize indigestion or GI irritation. If given once daily or every other day, administer in the morning to coincide with the body's normal cortisol secretion." We wanted to extend my daughter's treatment, and we continued on her dose (only 5mg daily) for about 2 days until we heard back from the doctor. I am thinking that giving another day at 50mg is probably okay since Dr. B wanted to hear talk to you before you drop it....but I'm not a doctor. Good Luck.
  2. It's not useless. Susan Swedo found a lot of times, the family history was OCD and Rhuematic fever. The PANDAS Network has a family history chart that shows families have autoimmunity in their health history. My husband has very mild tics (we didn't realize they were tics until we learned about PANDAS). Sub-clinical OCD and anxiety are all over his family, he has a diagnosed panic disorder, and has to fight compulsions when he is stressed. My maternal grandmother and her son both had Rhuematic Fever. On both sides of the family there are some cases of autoimmune disorders. Go to www.pandasnetwork.org in the left margin, under TABLES Click on Family History Table. Also, under VIDEO LIBRARY Click on the first video and watch it when you get a chance. It is Susan Swedo and she discusses the OCD and RF family history in that speech.
  3. I agree with PhillyPA completely...especially the part about evaluating her improvement/backslide in in 30 days -- or even on a weekly basis...day by day is not going to do much except drive you crazy.
  4. Here is how my daughter was prescribed her steroid tapers by our PANDAS doc, so maybe it will help: First taper: Day one—20mg Week one—10mg 2X/day Week two—5mg 2X/day Week three—5mg 1X/day Week four—5mg 1X/day Second taper: Week 1- 15mg 2x/day Week 2- 15mg 1x/day Week 3- 7.5 mg 1x/day Weeks 4 & 5 - 7.5 mg every other day
  5. The first taper we gave 2x/day for the first 2 weeks. The second taper we gave 2x/day for only the first week. Dosing throughout the day, can be done. I know that I have read the morning dose should be given before 9 am...because that is when the adrenal gland releases the cortisone (I think), so you want to be sure the pred is in your system....I'm going by memory. Wilma, I just replied in JJMom's thread what our tapers actually were...in case you were curious.
  6. PANDAS doesn't heal consistently...so many parents have reported a sawtooth recovery. Listen, this is the brain healing - I don't think you can give a "tin can" answer for how someone's unique brain is going to heal. You can only go with what is generally observed. Don't be alarmed if after three days of calm, you suddenly have a bad rage about something. One of my worst memories of that whole time happened after a few days of calm, she screamed over and over "No mommy no!" and looked sick -- wide pupils, defensive posturing so that she looked like a wounded animal -- the only thing I could do was find a way to compartmentalized my feelings into a different place and go about giving her that bath that she was screaming about. I just kept telling her calmly over and over, "I love you, and your going to get better." But I was thinking to myself, "This child needs to be in a hospital." -- this was in either week 2 or 3 of the first steroid taper for her. Hang in there...I'm sending my prayers and positive vibes for all of our children!
  7. Oh Wilma, I'm sorry you are going through ###### right now... I would stick with the steroid, you're still early in the game. I remember my daughter sitting on the toilet for a loooooong time. She needed step-by-step intervention to do ANYTHING. She couldn't even remember if she had urinated one minute prior. It was so scary having my completely independent 6yr old change within weeks to someone who couldn't do anything at all. She would scream if she didn't want to do something, but in the beginning of being on the steroids...she looked BAD. A wild animal is an accurate description. Things did get quieter when she was dropped to the lower dose, but we still had some raging, and then on the second drop of meds, the raging stopped, she was more cooperative. She still had many symptoms, but the painic on my part subsided because she didn't look like a child that needed to be hospitalized any more.
  8. I can't remember who or when, but someone posted on the forum that impetigo is one of the strep infections that don't show a titer rise -- I think because of the cholesterol in the skin neutralizes the strep toxins...I'm going by memory, though.
  9. Just to give everyone a heads up, it is my understanding that Dr. Schulman is a pediatrician who limits her practice to the local community. I am very grateful for her contribution to the video series and treatment protocol that Dr. MDK posted...many doctors won't even go that far. In case any of you missed his page, here it is again: http://www.drmdk.com/html/pandas.html
  10. The way I understand it is, the difference can be colonization vs. infection. I don't fully understand the actual concepts, but I will try -- colonization is when bacteria finds it's way into/onto a host (think of them as explorers starting new colonies). It is the beginning stages of an infection, and it is still precarious for the bacteria because the bacteria has to set up a settlement on hostile terrain--not only will they be up against the human immune system, they will also be competing with and making alliances with other bacteria and viruses and other pathogens/parasites. If the host has an immune memory of a strep infection, the body will responded quickly by mounting a response. With the aid of antibiotics, which slow bacteria growth so the immune system can take it out, that immune response will be quick and swift, resulting in a failure of the strep to create a permanent settlement -- which I would consider an active infection. ASO and DNase titers are only relevant because they are markers for a toxin produced by a previous strep infection. A whole army of different types of soldiers are released when your body mounts an immune response. What is not known is which type(s) of soldier(s) goes "bad" and starts attacking itself (think of it as friendly fire). So the question is, will you even get an ASO or DNase titer rise, if not enough bacteria has been allowed to live for a significant amount of time, thus creating "garbage and waste" or in other words, "strep toxins"? So, I think there is a very good chance that titers will not rise with just strep exposure. This is just how I look at it -- very simply, I don't have a medical background so I do struggle with this -- please anyone chime in to correct me. The whole idea of a ramping up of symptoms based only on exposure is really big....I could rant for hours on this.
  11. I don't think anyone really knows the answer to this, but it could very likely mean that there is another infection. ASO and DNase are strep titers. I was told the ASO is the short term one, it rises faster and drops faster. The DNase is the long-term titer it rises slower, and drops even slower -- so even though your son may be strep free, perhaps his DNase titer is just still on the rising side of the curve because it is slower? -- all of this is just purely speculation on my part. If you son is being treated for mycoplasma, have you been tracking myco p IgG and IgM? I ask about the myco p because biaxin is usually what is prescribed for myco. Also, I know very little about lyme, but some families that were having high titer results despite long courses of antibiotics have found that lyme is a factor.
  12. The first taper, she was not communicating with us before she started the pred so it was mostly just wide eyed screaming and huddling in a ball when she didn't want something. By the second week, she seemed better, but she still screamed a few times. We didn't see any significant improvements until the end of week 3--but she was still not fully back by a long shot. It took until the very end of the month to see almost full improvement. The second taper - during the first week, she was in her bedroom yelling, growling (if that is the right term), and banging on the walls. By the second week all that stopped, and her mood improved a lot. She was symptom free by approximately days 13-20. Her PANDAS was not nearly as bad as the first time because we ran to our PANDAS doc as soon as we were sure it was coming back--it was caught earlier.
  13. Both times my dd took pred, the first week at the highest dose was really difficult. Her moods improved the second week when the dose was cut in half. When are you giving the pred...morning or evening? Our PANDAS doctor told us that for the days when she is taking 2x/day, if she has difficultly sleeping, I could give most of the pred in the morning instead. But, thankfully, we never saw any sleeping issues with my daughter.
  14. Hard call... I'm thinking if my family were in a similar situation, I would probably try to find out what my PANDAS child wanted and expected (assuming she was at a point where she could really know and tell me) I would make sure she is aware of the realistic demands that being in an accelerated program has, and then I would probably follow her lead and let her have most of the power in this decision. I think it really would depend on a couple of factors about the program. If she started in accelerated classes, and found it too difficult, would they be willing to move her to regular classes? Is there only one shot in getting into the classes or is there a chance that she could join these classes at a later date? This is such a hard call...I would also talk to your family who have been helping her a lot. I'm sure they have some insight. Good Luck!
  15. It's not that they are not talking about it...they are only just now realizing that mild PANDAS is much more common than originally believed. Our PANDAS doctor just told us that she believes it is very common, but the symptoms are mild and manageable. I have 4 children. One has had 2 major PANDAS flares. My other 3 have all had a symptom here and there that I think I can attribute to immune flares, but it's just not enough to make me pull the trigger on getting cam K II or pursing antibiotics or prednisone. But I am watching carefully...
  16. Oh shoot!!! I had one more chapter to read, and I forgot all about it. Things have been busy here(the good kind of busy).
  17. I guess I should answer too. My side of the family, Type II (adult onset) - On my Mother's side it's far too many...herself, her Mother, Grandmother, Aunts, Cousins, Brothers, and my Brother. My husband's side, Type II - His Grandfather, and His Mother. Type I, My Husband's sister. We're just PANDAS here. Edited: My Husband's Mother was borderline for years...she watched her sugar before having to take medication.
  18. Could you all indulge me in answering a few questions, Please. What is the incidence of Diabetes in your family? Type I or Type II? Was anyone "insulin resistant" for a long time, but not need medication right away? Also, could you please indicate if you think you are dealing with PANDAS/PITAND or if you believe that Lyme is a factor too? This article and subsequent google searches have me thinking: http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html Thank you so much.
  19. Absolutely, my daughter didn't speak or when she did it was a real struggle for her.
  20. http://www.dailymail.co.uk/health/article-125160/Extra-vitamins-help-cut-youth-crime.html#ixzz1Kvhi9jT9
  21. Now I'm wondering if it is a commonly accepted fact that MVP can be caused by post infectious autoimmunity or just as a component to RF? A quick read about it on WebMD said nothing about it being triggered by infection. Although, in the comments section, some people mention RF at some point in their life....just one more thing I have to put on my "google list". Thanks for answering my question.
  22. We saw some very small improvements within a couple of days, but I would say the really noticeable improvements happened after the first week of prednisone, and the dose was cut in half--about by the end of week 2. Her PANDAS symptoms were much worse when she took the first monthly taper, so it really took a full month to see her return to about 97%. The second time, her symptoms were not as severe because we acted very quickly. That time by the end of week 2 or 3 she was 100%. I just wanted to point out that prednisone does not help your body clear infections. It actually suppresses the immune system, so that it makes it harder to for your body to clear an infection. However, it is anti-inflammatory so it will help with all the inflammation issues associated with infections. I don't have much experience with tics (we still are not sure if her coughing tic was really OCD or not), but I'm pretty sure that if you have TS and not PANDAS, then prednisone has been reported to make tics worse...I just wanted to point that out to you.
  23. Did a doctor make the connection between the sinus infection and the mitral valve prolapse? Or is it just a given in your mind considering what you know about strep? To me, it's a no-brainer. My husband's family is full of anxiety and mitral-valve issues. A psychiatrist recommended that he read The Anxiety Disease by David V. Sheehan, M.D. On page 82 it reads, "The Anxiety disease has also been shown to be strongly associated with the presence of a heart condition know as mitral valve prolapse. Among patients with panic attacks, approximately one in every three also has this disorder, which involves a floppy mitral valve in the heart." Obviously, that stood out to my husband when he read it. This was about three years before we ever heard of PANDAS, and when I began reading about strep and RF, it was an easy leap for me to think that possibly 1/3 of anxiety issues could be strep related. I think there is a low-spectrum of PANDAS that only includes panic attacks, depression and anxiety. I'm just wondering if a doctor made that connection for you.
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