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Everything posted by NVAmom

  1. My dd8's cam score is 139. She was not in exacerbation at the time of the draw. Her symptoms are very different than her brothers. She has sensory issues with clothes, shoes, noises, trouble sleeping ( that my son did/does have). We have an appt with dr L at the end of the month. My question is if this is PANDAS. My son who is definintly PANDAS had more classic symptoms such as seperation anxiety, rages, changes in hand writing, chorea movements of fingers and toes and a vocal tic. My dtr does not seem to have any chorea movements or tics. Do you have to have specific 'symptoms' before an elevated score is considered PANDAS? The reason I'm asking is the results said: "you will see that she falls in the lower half of kids that tested positive for pandas. She is above normal but below the median score. " So, since she is below the median and in the lower half of kids testing positive, does this mean it is not definitely PANDAS? I just want to prepare myself for whatever the answer might be before our appt with Dr L.
  2. We see this with our son. Exposure to any illness causes his body to increase antibody production which increases the attack on the basal ganglia which in turn increases the pandas symptoms. I've heard it explained like this. Someone on an airplane can have a life threatening reaction due to a peanut allergy from the particles in the air of the other passengers eating the peanuts. Even though the person with the allergy never actually ate a peanut their body still reacts.
  3. I did not get to read the rest of the posts but I can definitely tell you my son would have rages and meltdowns to a much higher degree with my husband . It seemed irrational. I could do or say the same thing as my husband but he was the one that would take the 'brunt' of the rage. So was my husband a '' trigger'? The answer is yes, but it was not his parenting for some irrational reason it was simply him as a human. Now that my son has shown improvement to antibiotics he no longer seems to react that way to his dad. Hope that helps and remember mist of us have been made to feel at some point that our child's difficulties are directly related to our bad parenting which we all know IS NOT THE CASE!!
  4. I actually asked our neurologist if treating our son with long term abx could put him at risk for acquiring an infection that would be abx resistant. The response I got was that new antibiotics are created all the time just like my son's brain was being attacked all the time. The way it was said made me laugh and I took the script for the long term abx.
  5. Unfortunately, I don't know of any specific articles but I can speak from our experience. After a 6 week steady decrease in rages, once we began treating with abx, my son woke up one AM and had one of the worst rages, period of separation anxiety and irrational thoughts that he had experienced before. The next day his sister woke up with pink eye. The dr felt the exacerbation was his body reacting to his sisters pink eye infection. On the subject of meeting a new doctor, I can tell you what I say. I tell them my son has an autoimmune disease. Sometimes they will ask for more info and sometimes not. If they do, I say that his body had an autoimmune reaction to strep that has caused post infectious encephalitis. All of which is true. I feel it is a shame that I can't call it PANDAS to all dr's BUT I don't care to take a chance of my son hearing a dr state that what makes his life so difficult does not really exsist. Sorry I don't have articles to cite but I hope it helps and most importantly that all goes well at the appt.
  6. NVAmom, I pray we are in your shoes this time next year! I am so glad to hear that your ds is making progress. This reply struck me because of the way you said, your entire family was held hostage. I am living that right now. As a matter of fact, I have an opportunity to go out with friends this evening with all the kids and i just want to hide all of us. I am ashamed to say that. We have not gone out at all, outside of school in over a month. I have another child that is older that i know is suffering by this too. I feel so guilty to say the least. I just said to my dh today that I wish we were normal and could just go out and have pizza with friends and not have a care in the world. I feel awful that I do not handle these times well. I think I might bite the bullet and go out this evening and just let my kids have fun like they deserve. thanks for your reply. It makes me feel better knowing that there are others out there coming into this late in the game and still seeing success. I am happy for you. I am so glad I could give you hope. I think that is what we all want for each other. There were plenty of times that I made up excuses as to why we could not join friends on social outings because I did not have the strength. My son would do everything he could to try to get us to cancel our plans and if it did not work we were usually sorry we made the attempt. It is hard not to feel guilty but we are all doing the best we can. I will join you in praying, but for you to see even more progress than I mentioned, within the next year. One tip I learned from Buster, that helps me see small ,is to chart the symptoms everyday. When I feel we are no longer making progress I can look at the chart with amazement and thankfulness for the little things....like my son going outside to play with friends. I hope you have a great evening out!
  7. My son showed first signs at age 2. He was not diagnosed until he was 11. He started treatment last Oct(augmentin 875mg - 2x/daily since Oct 2009; 1 course of steroids after exacerbation from his sister having pink eye). He has made HUGE progress. He still has a ways to go but this time last year our entire family was held hostage by his symptoms but one short year later I feel like I'm getting a son back that I never knew I had.
  8. My dd (her brother has been daignosed with PANDAS and we are begining to suspect her) also becomes very aggresive with red dye. Carmel coloring also effects her but to a lesser degree. When she was a toddler she would reflux after having the colorings to the point she would vomit. We avoided them until she had some without us knowing and had no vomitting. It took us a while to realize that even though she was no longer vomitting they were effecting her behavior.
  9. Did Dr B recommend any changes to your daughters treatment? If so, were the changes because of the Clostridium or for over all PANDAS treatment. Thanks!!!
  10. ohhhh left this off - we have not done PEX
  11. We are doing antibiotics and an anti-viral daily(my son gets frequent canker sores that cause PANDAS exacerbations) and 1 course of steroids last fall.
  12. Forgive me if this posts twice. I was certain I hit 'Post topic' before but when I went to look I could not find my post. My ds was diagnosed by DR L in Oct and she has brought him a looooong way from where he was. When she first started treating him he was having severe rages, OCD, anxiety and tics. He is doing much better than when we started. Heowever, I started noticed a steady increase in symptoms in April and May. It seemed more than just the wax and wane. I was eagerly awaiting our follow up with DR L but it was scheduled for the week after she lost her son. Although, at this very moment he seems to be stable I am considering taking my son to see Dr B (8hr drive - insurance won't cover) just to make sure we are doing evertyhing we can. I think part of considering this is because my son brought home a portfolio on the last day of school that had writing samples for every year from K-5th grade. As I was reading through the portfolio, I realized even though he has very few rages now, the OCD is tolerable and the tics are minimal his academic skills are not even close to where they were. His 3rd grade samples were far better than anything he had done this entire year (5 th grade). I have nothing but respect and gratitude for DR L, but since our next appt is not until Aug (if she is able to come back then) I am wondering if I should take my son to see DR B. Have any of DR L's patients also seen Dr B?
  13. Reading this brought tears to my eyes! I am so happy for you and your family. I also feel your excitement that your daughter is wearing underpants! We struggle with this with my dtr as well. Thank you for pointing out how different symptoms were for each of your dds. I have beenn suspecting my dd might have PANDAS because of her sensory issues and oppositional behavior but because she presents so differently than my son, that has been diagnosed with PANDAS, I always dismiss it.
  14. I am so sorry to hear of this. We are just back from the meeting and my son was approved. According to the '504 cordinator' (not sure that was exactly what the title was) he qualified simply based on the fact that he has PANDAS....regardless of his current level of functioning because any exacerbations have the potetnial to impact his learning. I honestly was surprised it passed. The psychologist and the educational diagnostician were acknowledging he had PANDAS verbally but their actions indicated their doubt that this impacted him educationally. My husband had already drafted an appeal letter. Fortunately, the cordinator had actually researched PANDAS and was aware of the impact of future exposure to strep etc, effecting his learning. It might be beneficial for you to call your state ed dept and request clarification about the director's interpretation of the law. To me the director sounds as if they are trying to intimidate educators from providing and recommending what a child might need. The exact opposite of what the law stands for!
  15. What a wonderful idea! I have been trying to think of something to do for her and I think this is better than anything I had thought about. Please include me. I don't know where we would be without her. Thank you for doing this! Debby
  16. Thank you for your response. Another great reminder as to why an informal model won't work. Embarassingly enough I had the date wrong. I knew the meeting was June 2 but was thinking that was Tuesday. Thankfully, my husband caught the error. I'll let you know how it goes tomorrow.
  17. I am so sorry to hear about your experience. Are you appealing the decision. I worked on documenation until midnight last night. Before bed my husband asked me to recheck the date of the meeting.....I told him I was sure the meeting was Tuesday June 2.....Well the meeting is June 2...which is Wednesday. I will let you know how it goes tomorrow. I think I could use some accomdations myself
  18. Hi, We have a meeting to determine if my son 'qualifies' for a 504 plan tomorrow. The school is pushing an informal list of strategies to help my son instead of a 504 because standardized testing shows he is within normal limits. My issue with that is that the testing was not done during an exacerbation. Also, It was done in a quiet, non-distracting room which does not reflect his ability in the classroom. They did not test attettion or memory. He is moving up to middle school next year and I feel we need something in place before he starts to fail. How do I convince them that he has a disability regardless of what the standardized test says and that his ability will fluctuate during exacerbations. Any suggestions would be greatly appreciated! Thanks, Debby
  19. Could it be that the OCD causes them to be able to tune in to details and how things work more than non-OCD kids? Just a thought.
  20. My son started seeing Dr Latimer last Oct. He is doing very well. Rages, irrational thoughts and tics are 90% less than before we started seeing her. He still has chorea movements affecting fine and gross motor as well as executive functioning deficits but these are also improved from before she started treating him. I don't know where we would be without her.
  21. I had been charting my sons PANDAS symptoms daily after a post by Buster. I tried making some graphs and charts on the computer but I am tech impaired soI have been charting in a notebook. However,recently I found a free ap for those that use an I-phone. It is called symptom minder. It comes with pre programmed symptoms to track but it is completely customizable. Just wanted to pass this along for anyone looking for an easy way to track the small subtle changes.
  22. It took a week or two to notice small changes for our 11ds. We saw significant decreases in rages after 4 months. Buster had a post that helped us start daily charting. It really helped us notice the subtle changes in the PANDAS symptoms. Hope this helps.
  23. He started Augmentin 9/23/2009 at 500 mg 2x/day for a sinus infection and we were just learning about PANDAS. We saw some improvements in PANDAS symptoms and begged the pediatrician to continue the dose until we saw the neurologist. The neurologist increased the dose on 10/22/2009 to 875 mg Augmentin 2x/day. He was 11 years and 2 months when we started the treatment. He also takes acyclivir (an anti-viral)400 mg once per day because he was having frequent mouth sores (not thrush) which were resulting in exacerbations. The acyclivir is increased to 4x/day when he has mouth sores. He started that around March 3, 2010. Hope that helps. Thank you and T.mom for your 'cheers'
  24. I have an 11 year old son and he is outside playing right now!!! Not just playing.... but he went to a neighbor's house to invite them to play. Most parents would not think much about that statement but I know the parents that are on this forum are not like most parents. These everyday events for most parents -are huge accomplishments for our families and give us hope for the future. As I was feeling an overwhelming joy watching my son outside I thought back over the last year. Wow, have we come a loooong way. I realized last year at this time we were simply trying to survive a daily living nightmare. I realized I needed to post this to bring some encouragement to those that are still living the daily nightmare. I will summarize our experience with PANDAS. (my earlier posts may have had a different timeline- I realized after reviewing MD record some of the ages were wrong) When he was 3 he developed a vocal tic. Over the years the medical chart showed chronic strep (plus frequent pharyngitis), chronic croup, frequent pink eye, reflux, viral rashes, sleep problems, and sinus infections. Interestingly, they were usually followed by a 'behavior consultation' about a month after infections due to increase in separation anxiety, rages, and OCD - which always resulted in a re-referral to psych. He was diagnosed with TS at the age of 7 and then after that all the symptoms were explained as co-morbid conditions to TS. April 2009 he had an exacerbation. All the symptoms were magnified what seemed to be 1000x's greater than ever before after a strep and sinus infection. Our daily life changed. Rages, crying spells, irrational fears ( I know you all know) consumed our life. There was little sleep for my husband and I and the days seemed to be never-ending. We began medicating him for the mood swings and rages. They medications seemed more to 'numb' him then help. Then last fall everything changed Last fall we finally found an answer. PANDAS. He began augmentin 2x/day with 1 course of steroids. It has not been an overnight change...but gradually our son is returning. He is off of 2 of the 3 'psych' drugs that he was taking. He is being weaned from the third medication (he is at 25% of the original dose). The executive functioning deficits (difficulty attending in school, short term memory difficulties, difficulties starting and completing assignments without help, etc) and fine motor difficulties remain but the neurologist says this will get better in time. He still has fear of germs and irrational anger outbursts but nothing like before...they are manageable. We still have a long road ahead but on this beautiful Spring day I wanted to bring comfort to those of you that are exhausted from the battle that even though this is a horrible illness there is hope.
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