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Everything posted by Kayanne

  1. You chase it as far as you and your son are comfortable chasing it. It is a very personal decision based on how well the tic is being tolerated and if it is interfering with day-to-day life. I have a PANDAS daughter who mostly has OCD for her symptoms. But her siblings have gotten very mild and transient tics. I've tested for strep at those times and the swabs and titers have been negative. Then I ask them if they care about it, and usually they don't. So I don't pursue it anymore. The worst was last year, my son was blowing into his hands for about a month. It never escalated and gradually decreased. He didn't like getting his blood drawn for strep titers, and I think that was the worst thing about it for him. Their Father also has tics that we only came to be aware of when we learned of PANDAS.
  2. I've personally experienced a bit of this. When I consistently take 1000mg of tyrosine for a few days, I start to get waves of a painic feeling of a religious nature...thinking about going to eternal damnation (the other word was censored). It was a real light switch moment for me to realize how much our neurotransmitters contribute to our responses. I took the tyrosine because it pulls away the gauze curtain from my brain and doing daily tasks becomes easy...that's the best way I can explain it. I also want to point out, that I've been told by my doctor that exercise has been shown to balance neurotransmitters too...although I just took his word for it, and didn't research it. I just wanted to put that out there since the question of balance came up...exercise can be a piece of the puzzle that some may not have considered. Sending best wishes to everyone
  3. Great Idea! How about trying to ask the audience to recall the last time someone jumped out and scared them...and explain that someone with panic disorder can't shut that scared feeling off? I thought about actually scaring the audience, but I'm not sure that would be wise...
  4. :) Great news! I hope you see continued progress!
  5. I'm not a doctor, but wouldn't strep in the basal ganglia be a serious health emergency?
  6. My husband and I were 30 when I had my second child, who is diagnosed with PANDAS. We both have seasonal hay fever. So do all of our children. I believe that my other 3 children have had one or two PANDAS symptoms in the past, but they never seemed to get worse. My husband also has an anxiety/panic disorder, and tics very mildly (which we only realized were tics after learning about PANDAS), has tendencies for having obsessive thoughts and resulting compulsions (but for the most part keeps them in check). Many members of his family are similar. He also has a sister with Juvenile Diabetes. He and a few others in his family also have vitiligo. His father was recently diagnosed with pernicious anemia. Mitral valve regurgitation/prolapse is also common in his family. I believe I have undiagnosed ADD. My sister has diagnosed ADD. My maternal uncle and grandmother both had Rheumatic fever. My Sister's son was in the hospital this summer with myocarditis (he did have elevated strep titers). His sister also had Post-streptococcal glomerulonephritis and has had some intense fears and school refusal as a child (she leans OCDish). My Maternal Aunt has had a couple of episodes of viral infections that caused a real change in her personality. Adult onset diabetes is rampant in my family - My Mother and Brother (definitely-poor lifestyle choices contribute to this). Another Maternal aunt has had colitis that nearly killed her - she was told it was autoimmune. My cousin also has Rheumatic Arthritis. One of my maternal great Aunts has had a few "nervous breakdowns" and needed to be admitted to a psych hospital a couple of times. Whew...it's been a while since I put up family history. I know I've reported all this to Dr. Cunningham (with the exception of the mycarditis and pernicious anemia--which I think is significant, but just haven't had the time to wrap my brain around it.) So, our family history falls right in line with what Dr. Swedo reported - OCD on one side and RF on the other.
  7. It depends on what type of liquid. The concentrated prednisone can't be flavored, but if you read the instructions, you can mix it with a liquid. The only thing that my daughter would take it with was soda. I used sprite or a caffeine free one. Mixing it with apple juice was nasty. Prednisolone, is usually not concentrated and you can add flavorings. My sons have had it a few times for allergy reasons, and they like it. Pedia-pred can also be flavored. This last time, my daughter took the pills, and hated that she could taste them before swallowing. I would suggest asking about getting a switch to a flavored liquid at the pharmacy.
  8. My PANDAS daughter is also thriving. She's not 100%...but the OCD we see would most certainly be considered sub-clinical. She continues to do great in school, is in the gifted program, has friends, and is just an overall amazing girl. She's had 3 exercerbations, each time treated with a monthly taper of prednisone and returned to 100% within about 2 months from stopping the pred (there is a time element here that healing needs) Since 2009, she has continuously been on antibiotics either full-strength or prophylaxis. Sept 2012 was the last time she tested positive for strep with no physical symptoms at all. I took her in to see if I could get titers ordered because the night before we just knew her symptoms were returning. I didn't think she would test positive since she was on 150mg of Omnicef daily. I was very shocked when the doctor said she was positive. Since she's had 2 exacerbations while on prophylaxis, we don't feel it has been effective. In December, in consultation with her pediatrician, we decided to take her off of the antibiotics. She was 100%, but after taking her off, some worry and anxiety came back...but not enough to make us feel she's backsliding. Also, we are finding that keeping with the good vitamins, fish oil and occasional L-tryptophan at night is really helpful. Over the holiday, she started to read "What to do when your brain get stuck," and I think she's really liking the intellectual approach to keeping her OCD in check. I cannot tell you how proud I am that she goes into that school building every day even though she is worried about being sick or someone else getting sick. I agree with Dcmom, treat each exercerbation quickly and aggressively. This is manageable. For some silver lining--my daughter will have skills and empathy that many adults never acquire.
  9. We just gave our daughter 3 doses of Diflucan (150mg) every other day. I don't really think she has any evident yeast issues, but her pediatrician felt it was just better to prescribe it than actually using a scope to check for yeast. It's really just to follow up on the years of anitbiotics...which we also stopped last week. However, we have not done more than tell her to take a few more of her chewable probiotics. So, would you mind sharing your prebiotic and probiotic regimen? I'd like to hear what you did. I think she has a bit of ADD going on right now, but I couldn't tell you if it was from yeast or not...I strongly believe that ADD is in my family.
  10. Was she on a lower prophylactic dose of Keflex? My daughter was taking a lower dose of Omnicef (150mg daily) and she tested positive on the rapid test in September. The ped put her on full strength Omnicef, and when we saw Dr. L again she kept her on that. That did clear her strep. I think Omnicef is a good antibiotic, but be ready to jump if she continues to test positive because - like you already know - it's the same class as keflex. A better option than zithromax is clindamycin. Zithromax has documented strep resistance, but I know many see good results with it. Clindamycin is one of the "go-to" antibiotics for clearing a strep carrier...just wanted to throw that out as an option. Good Luck...crossing my fingers that your daughter doesn't flare!
  11. I like this Therapist's website, although I haven't contacted him: http://overcomeocd.net/rx.html
  12. Personally, I think it's more a case of misdiagnosed autism and not that PANDAS is a treatable form of autism. Is there mention of autism throughout the literature of PANDAS? I know the Hornig paper mentions autism behaviors briefly, but I'm pretty sure most of it has been limited to OCD, TS and the other common co-morbidities. I would love to see the numbers of "autistic" children who participated in the study (I put that in quotes because I believe it is a mis-diagnosis in these cases), and know the numbers of how many are no longer on the spectrum. I hope with all of my heart that all autistic families find relief. I firmly believe that a PANDAS child can look autistic. I saw my daughter go from a perfectly normal, independent 6 year old to a child who couldn't do anything for herself-she even stopped talking. I was afraid to say it at the time (because I'm not an expert and self-diagnosing is not my thing), but later after she recovered, I asked the school if they thought she looked autistic, and her teacher said yes. I'm eternally grateful that this didn't happen at 15mos or 18mos...who knows what would have been her diagnosis? But to classify PANDAS as a treatable form of autism is just not supported in the literature, and crossing that line is going to cause a lot of physicians who are already sitting on the fence waiting for more "evidence" to pull back and have more reservations about PANDAS/PANS. I'm just a lay person, and by no means an expert in medical ethics, but this feels wrong. Especially if you put it in the context of how many autistic families are preyed upon by practitioners of unproven therapies. Publish the proof before you make the claims, or put in on another page (not prominently displayed on the front) that many families anecdotally have found that their children were mis-diagnosed with autism but there have been no studies to prove it yet. I have no problems with that. PANDAS/PANS has come so far, and making claims that are too broad of what it encompasses without the proof, I'm afraid, may derail it.
  13. I'm really confused about that! I asked about that on facebook under the thread that Dr. T started. No response or thoughts from anyone. I absolutely believe that PANDAS/PANS can look like ASD, but personally, I feel it muddies the water on what PANDAS/PANS really is. Also, I'm worried that being too closely aligned or thought of as a "biomedical" treatment for Autism is going to just marginalize PANDAS/PANS even more or just be outright dismissed by a large segment of mainstream doctors. It feels like a marketing ploy. I would just love clarification on it.
  14. I would just like to point out that going to one of the recognized PANDAS specialists does not mean you are going to get the "big expensive treatments" such as IVIG or plasmapheresis. Going to a recognized PANDAS specialists means that your child will be evaluated by that doctor, with strong consideration of a PANDAS/PANS diagnosis. That doctor will hopefully be able to give a reasonable diagnosis and treatment plan based on an exam, patient history, and if needed ordered tests. Missmom, I know that the jist of what you were saying, is that if a parent feels that a more aggressive treatment plan is needed, you are more likely to get that type of support from one of the doctors who routinely sees and recognized PANDAS/PANS, and I know that you have zero intentions of making this sound bad. However, in a way it does. It marginalizes these doctors and characterizes them as automatically willing to perform these treatments...which is not true.
  15. My daughter takes 150mg of Omnicef as a prophylaxis. But we were sure her strep was cleared before we dropped her down to that 1/2 dose. In 2009, clindamycin stopped her recurrent strep.
  16. That's pretty disgusting...but when my daughter had thrush as an infant, the pediatrician told me to put her pacifier in my mouth before putting it into her's because then I could help her mouth colonate with good bacteria. He told me that within the family unit it's practically impossible to not be sharing germs. I try to tell my kids that it's probably okay to share a sip with a sibling if their not sick, but no one else. I also try to remember that there are probably much more benign/neutral germs in our environment. I have become so much more aware of germs just from living with my husband...his family is more OCDish about them. Chemar has a great quote in her signature: "the microbe is nothing; the terrain is everything." by Louis Pasteur. Remember, that if a bad germ falls on a clean surface, there is no competition to keep it in check. We need bacteria, and I believe they may someday think that there are beneficial parasites too--humanity didn't evolve in a vacuum. We're more like PMom in our house...but I take things as situational.
  17. My daughter's change was more subtle. I can't pinpoint the day or hour, but I can certainly pinpoint the approximate time frame (give or take a week). Then one day in May 2009 when I was writing an email to her teachers describing how we are helping her at home, it hit me like a ton of bricks, she was a completely changed child from March. It was indeed a very scary moment.
  18. I'm glad Dr. M's office is keeping your son moving forward. It must be driving you crazy to have him test positive so much. Has your son ever been on a protocol for clearing a carrier state? I know in 2009, we just couldn't get rid of the strep...but with each positive rapid, the pediatrician stepped up the antibiotics. Three of my children were treated with a combination of (augmentin or duricef) and rifampin added in on days 7-10. That cleared two of them, and my PANDAS daughter still tested positive after that. They then prescribed 10 days of clindamycin at 300mg 3 times a day--the adult dosage. I really think that the pediatric practice being aggressive with her strep was key to her recovery. By the time she receive steroids, she was finally testing negative on rapids and 72 hour cultures. My PANDAS daughter's immune workup looks beautiful. Good Luck!
  19. You know my husband has anxiety, panic attacks, and mild tics--although I couldn't say if it's the same beast as PANDAS--but he LOVED LOVED valium. It was prescribed for him to take prior to a procedure four years ago and he still says how awesome it made him feel (very relaxed and mellow)...LOL. He was taking zoloft at the time too. I'm wondering if you could use valium and then just go to the numbing shots--skipping the nitrous oxide? Perhaps those medications don't mix?
  20. Is there only that page? I couldn't see "next" buttons and it didn't seem complete. Did I miss it how to get to the second page?
  21. What is core? Can you link it please? I would like to find a good multi with P-5-P. I'm so glad that you are seeing improvements. When my husband was pretty bad, he found relief in a couple of days too. I just wanted to give you a heads up on my understanding of L-Tryptophan because it may give you more flexibility. I don't think it matters when you take it. The few people who I know who have benefited from it, take it at night and it has replaced their SSRIs. Everything that I have read, states that the conversion process goes from Tryptophan to 5HTP to Serotonin to Melatonin. So if the conversion process is getting as far as Melatonin, then you've already had conversion to serotonin. Tryptophan is also used in digestion, and what I took from Dr. Slagle's book was that if you don't have enough in your diet AND you don't have the other vitamins/co-factors present then the body doesn't go so far as converting it to neurotransmitters -- it uses it for the more essential function of digestion--but that is a layman's understanding of it, so I could have misunderstood. I have read that taking it during the day will be helpful in suppressing urges so it can help with dieting and with trying to quit smoking. But overall, I just wanted to say that I'm happy your seeing improvements. Anxiety Sticks horribly!!
  22. When do you give the l-tryptophan and how much? Usually 500 mg for adults, and I'll cut the capsule for approx 250 for my 9 year old because she's not yet in the adult weight range. Although, when we found this protocol online, my husband was having regular panic attacks, and he took 10000mg at night at first. When things calmed down for him he dropped it to 500...and now we all only take it as needed. We take it at night before bed, and try make sure that a protein has NOT be eaten within the hour or 45mim. If you must eat with it, a carb is better. Having the P-5-P already in your system is really key. Without that co-factor, the amino acid won't convert as easily into the needed neurotransmitters. We like to take that because it is the first step in the metabolic process, and if you have all the right vitamins, minerals and cofactors already in your system ,then your body coverts what it really needs into 5htp then to serotonin then to melatonin. L-Tyrosine is the nutritional pre-cursor to dopamine then to norepinephrine then to epinephrine. I like to take 1000mg of this in the morning...it helps me stay more focused during the day...(I suspect I have ADD). If you google "the way up from down by priscilla slagle" then you'll find the protocol that has helped my husband tremendously.
  23. We use L-tryptophan in our house, and have never seen any side effects. We make sure that we are taking P-5-P sometime during the day too.
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