Jump to content
ACN Latitudes Forums

qannie47

Members
  • Content Count

    867
  • Joined

  • Last visited

  • Days Won

    34

Reputation Activity

  1. Like
    qannie47 got a reaction from bhenry in Long Term PANS and IVIG treatment   
    I am lucky to have a resource at Childrens Memorial in Chicago. She is high up...very cautious, and probably one of the smartest doc's I have ever met. When I asked her about IVIG and risk, she said low risk. She said go for it, for my ds. If she says it is low risk, it is low risk.
  2. Like
    qannie47 got a reaction from bhenry in Long Term PANS and IVIG treatment   
    If you can afford it I say go for it. Pandas is not understood well enough by ANYONE to say that IVIG would be ineffective.
  3. Like
    qannie47 got a reaction from peglem in Long Term PANS and IVIG treatment   
    If you can afford it I say go for it. Pandas is not understood well enough by ANYONE to say that IVIG would be ineffective.
  4. Like
    qannie47 got a reaction from JuliaFaith in A message of thanks to all of you....   
    Once again, I found myself coming back to this forum. And it has occurred to me what all of you in this forum have come to mean to me. I have never met any of you. Yet, I know all of you. This strange connection/kinship, lending support...encouragement. I am struck with the realization of how thankful I am that on many days, most days, I have all of you to come to. I read your stories, contemplate your questions, find answers, and realize that I am not alone. That is such a blessing. All of you are so remarkable. Your strength, determination, faith. Your fortitude. The lengths to which all of you are willing to go to for your children, to not give up, to keep seeking when a dead end is encountered, is so inspiring. Truly, emotional nutrition when my day has not ended well. Then there are those of you whom are suffering personally. You have not given up. I am so thankful to you as well for the courage you have to share your journey. I confess that sometimes, I look around me and see ordinary people dealing with ordinary circumstances, and while I am not judgmental, or resentful, I find myself sighing....and think to myself....you have no idea. It with all of you, that I have found this odd cyberspace family connection that I am so grateful for. So I thought it was so important to acknowledge this. I have a feeling that my own feelings are not foreign to any of you. I sense that. Last, but not least, I end this rather emotional expression, by saying once again, Thank you to all of you. You all are quite extraordinary. Q
  5. Like
    qannie47 got a reaction from GraceUnderPressure in Leaving for Colorado - prayer request   
    Prayers for your family. Remember that God is with all of you. He is with you on this journey. He has and will provide for you guidance, strength, faith, and answered prayers. For myself, in my darkest hours, God in the end has never let me down....
  6. Like
    qannie47 got a reaction from Kathy4Him in Leaving for Colorado - prayer request   
    Prayers for your family. Remember that God is with all of you. He is with you on this journey. He has and will provide for you guidance, strength, faith, and answered prayers. For myself, in my darkest hours, God in the end has never let me down....
  7. Like
    qannie47 reacted to nicklemama in "Killing a Fly with a Nuclear Bomb!   
    She doesn't know what she's talking about. Amoxi is like swatting an elephant with a fly swatter. My son takes augmentin. Other kids take azithromycin or cefdnir or similar class of drugs. Clindamycin is the big gun.
  8. Like
    qannie47 got a reaction from JoyBop in Tonsillectomy questions   
    Prayers for your little one.
  9. Like
    qannie47 got a reaction from otksmama in What if abx don't work?   
    Otksma, just met with Dr. K. First, he said that after IVIG, it would be unusual for other illnesses to trip of Pandas in a major way, although, to be safe, he would still use higher dose of abx when he got sick with anything signifigant. Two, he does not actually feel that abx is enough to prevent strep, and if he gets it and if we are not vigilent, it could indeed trip off a bigger Pandas episode....so the trick is to catch it asap. Third, the idea of abx is used not only to ward off infections, but abx also is an anti-inflammatory as well so it could be considered a part of the healing process. Three, gut issues...my ds takes a probiotic daily and will continue, so I am not worried about gut issues (not at the same time of day as abx). Remember, the bigger picture of the IVIG is to MATURE up a glitch immune system...that takes time, hence the 1 to 2 years of antibiotics and vigilance for future infections...Fourth, these days I am happy if I remember to close the cabinet doors in my kitchen, but I will try and remember and reference some material for you...The collaborative study that I talked about was from the NIMH website. Go there, it is a study done on I believe 50 kids who were treated within the first year of 1st episode with IVIG and tonsillectomy...I am getting my ds's yanked out in December....he can eat all the ice cream he wants...
  10. Like
    qannie47 got a reaction from EAMom in What if abx don't work?   
    What number episode is this? I noticed by the fourth episode, my ds no longer showed great improvements. The research suggest this as well. According to Dr. K., when my son no longer responded well to abx it was time for IVIG. What did Dr. K. say about this? Also, how long was he sick with the last infection that tripped off recent episode? My son had tonsillitis for 6 weeks, and it took months to come out of that episode. I think it was because his brain took the hit for a long time, and that is why the episode lasted so long.
  11. Like
    qannie47 got a reaction from SSS in Visit w/DR. K...10wk IVIG update   
    As of week 10, my ds is still clear of any Pandas symptoms. Dr. K is thrilled. Follow up will include remaining on antibiotics and strong vigilance for a recurring strep infection. He said that the IVIG would not hold up to strep being in his body for any great length of time and could trip off an episode in the next couple of years. He said that he should be strong enough to fight off other forms of infections without recurring Pandas, however, we would still treat other infections with full dose antibiotics. We will remove his tonsils in the winter. He said that I should also see a big change in academics and social maturity as well. He said these changes should be witnessed over the next several months. Interestingly, I asked about using Ibuprophren with minor flairs, and he was adamant about not using them cause he had a concern about Liver damage. One thing to also note, I mentioned that I was giving probiotics at the same time as abx, and he said not too. He said that given at the same time, the probiotics would affect the absorption of the abx and to space it out during the day. I also asked him about the Turkey study, and he basically said that they have already found many other genetic mutations and that he was not all that excited about this recent one. He felt that the use of IVIG will remain the proper course of treatment for Pandas in the future.
  12. Like
    qannie47 got a reaction from LaurenK in Update on my ds7 IVIG outcome   
    We are in our 9th week post IVIG and things look good!!! OF these 9 weeks, my ds only had 5 bad days. Which mostly happened during week 7 or so....As of this moment, my ds has gone 14 straight days of NO Panda's symptoms AT ALL. One thing I did not expect to happen so fast was recover of short term memory. This has been a rather, "WHAT!", kind of moment for me. I have always just sort of thought of my son as a kindred "space cadet". But sure enough, recently he is remembering where he has put his things, able to better account for his day at camp, things like that...very interesting. The only thing that still is hanging around a bit is some bedwetting. However, I think at this point since it has gone on for so long now, his brain/body is no longer trained to wake-up. So I am going to buy him an alarm clock....if this is all we ever have to be concerned about...YIPEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
     
    Anyway, I just wanted to share our experience so far with you all, since I know when I was researching I was very interested in any info I could get about IVIG experiences..
     
    Thoughts and Prayers for all....
  13. Like
    qannie47 got a reaction from SSS in Update on my ds7 IVIG outcome   
    We are in our 9th week post IVIG and things look good!!! OF these 9 weeks, my ds only had 5 bad days. Which mostly happened during week 7 or so....As of this moment, my ds has gone 14 straight days of NO Panda's symptoms AT ALL. One thing I did not expect to happen so fast was recover of short term memory. This has been a rather, "WHAT!", kind of moment for me. I have always just sort of thought of my son as a kindred "space cadet". But sure enough, recently he is remembering where he has put his things, able to better account for his day at camp, things like that...very interesting. The only thing that still is hanging around a bit is some bedwetting. However, I think at this point since it has gone on for so long now, his brain/body is no longer trained to wake-up. So I am going to buy him an alarm clock....if this is all we ever have to be concerned about...YIPEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
     
    Anyway, I just wanted to share our experience so far with you all, since I know when I was researching I was very interested in any info I could get about IVIG experiences..
     
    Thoughts and Prayers for all....
  14. Like
    qannie47 got a reaction from EAMom in Does my child have PANDAS?   
    I was going to respond to this post. But as usual, with this forum, you are dealing with highly informed people who know what they are talking about. So, DITTO, to what they all said.
×
×
  • Create New...