Jump to content
ACN Latitudes Forums

amy s

  • Posts

  • Joined

  • Last visited

Everything posted by amy s

  1. Not sure if you guys have seen this yet. The article is good if you can get your hands on it. Here is the abstract: Mycoplasma pneumoniae may cause acute encephalitis, resulting in severe neurologic complications despite antibiotic therapy. We report the case of a 12-year-old patient who presented with acute onset of orofacial tics, motor restlessness, compulsive behavior, and cerebellar symptoms. Cerebrospinal fluid examination demonstrated lymphocytic meningitis. Polymerase chain reaction for M. pneumoniae was strongly positive in the cerebrospinal fluid. Blood and cerebrospinal fluid were negative for M. pneumoniae antibodies (immunoglobulin M and immunoglobulin G). The child was administered intravenous gamma-globulin, which led to a dramatic improvement of her clinical condition and disappearance of the symptoms within 72 hours. This novel case points to the potential value of gamma-globulin in M. pneumoniae encephalitis confirmed with polymerase chain reaction and suggests that immediate administration of intravenous gamma-globulin in suspected mycoplasma encephalitis should be investigated in a larger patient cohort.
  2. Quoting from "What to do when your child has OCD" by Aureen Pinto Wagner, PhD., pp. 285-286 "....Sometimes she had the urge to poke her eyes out with a fork or stick her finger in a plug, to stab her mother with a knife or to kill her dog..." The book goes on to explain we all have unwanted thoughts, which we dismiss, but "OCD sufferers experience them as a constant assault of horrific and loathsome thoughts; they can neither be dismissed nor controlled. Sufferers need to learn that thought is not equivalent to action...People with true OCD don't actually carry out their malicious thoughts, even though that is their worst fear." Please. Have the child checked for strep or anything else related to a possible pandas issue. Get it documented in any way possible. My dd... shockingly announced things like this and I am not kidding.....just as often as the sneezing girl sneezes. And I am not kidding, when I watch Lauren on video it brings back painful memories of how often I heard this from a beautiful formally gifted kindergartner...and my own child. There is relief from pandas.... it is called IVIg and full-high strength antibiotics. It may not be a cure all....but it will bring hope. Good luck to that family. regards, amy s
  3. This sounds like good news to me! Thank you for updating us and I hope things continue to improve. Things DID continue to improve post IVIg for my dd, even after 3 and even after 6 months! Regards, amy s
  4. Yes we have been through this before too...(we also checked thyroid) .and still sometimes now, post IVIg.... I see her face pink and she feels 'warm' (like I know she MUST have a fever,....but she doesn't according to the thermometer). She does seem to do better with a cooler temp outside and I have even advocated for her at school that 'if she says she is hot, do not make her wear her coat (but a jacket!). Regards, amy s
  5. Yes, early on... my dd had this type of issue many times, but it was off and on...AND before we knew anything about pandas. One time she was playing on the play ground and ran into a (at school) beam; head on. I had her optic nerve checked out because of it. In the end... all those type symptoms are gone... she is a year out from IVIg and doing good. She was also on risperadal at the time.... I really don't want to comment on that medication; but I don't think it is appropriate for children with the symptoms our kids have. I wish your family the best! Regards, amy s
  6. This topic is fascinating to read. It is amazing how many parts of their lives that PANDAS is involved with. My dd really does not have any food issues whatsoever. As well, she is overweight for her age. I don't know what percentile she falls in. But the weight gain, we believe, was caused from the psych meds that she was on for a year. I have heard of several others who have overweight children and they attribute be overweight to the psychiatric medications, as well.
  7. Oh gosh, I totally feel for you. Your son sounds very much like my dd was when she used to rage. We know the feeling of walking on eggshells just to keep everyone safe and free from serious injury. It is a terrible way to live. And of course, needless to say, it was completely the opposite of who she was! For a year my dd's rages were crippling...along with the horrendous OCD. In my dd's case, IVIg SAVED HER LIFE. After IVIg she had about 3 or 4 more rages in the following weeks AND THAT WAS IT. NO MORE. Even the ones she had after IVIg were noticably different in quality. I hope your child has the same result. I am so glad you are getting IVIg soon. Is he aware of the procedure? My dd was raging both days during the IVIg. Some hospital staff tried to get her transferred elsewhere. She had to be put in restraints just to get the IVIg started. Gosh, I could go on and on...but basically what I want you to know is that there is hope that he will get better. Yesterday was 11 months post IVIg for my dd. Yesterday she went to her friend's birthday party. Wow. Do you know I cried about that? I was thinking back to one year ago and how I never thought my dd was going to be able to EVER do anything like that.... a simple, joyous thing like a child's birthday party! It is a miracle to me, how far she has came. I will be thinking of your family and hope you have great success with the procedure. Regards, amy s
  8. My dd uses Zyrtec and has no problems with it.
  9. Check with your pharmacist before crushing any pills! A quick google check of crushing Augmentin revealed results "Do not crush Augmentin XR"
  10. Hi there bmom- I believe our children had IVIg around the same time last year. I have a question for both you and EAMOM- regarding symptom exacerbation related to flu. How long did it take for pandas symptom exacerbation after onset of flu symptoms? I ask because on Friday my dd came down with flu symptoms. So far she has not had any pandas symptoms but I am scared to peices that she will. Thanks! Regards, amy s
  11. My dd takes the following supplements daily: Mastica 1 tablet daily Immudyne- Macro Force Plus IP6- 1 tablet daily Then off and on but rarely, I give probiotics, right now she uses Health Trinity brand but she used to use Klaire Labs. Right now she is taking Transfer Factors, but only because she got sick Friday with flu-like symptoms. She is 11 months post IVIg and doing really great with no PANDAS symptoms.
  12. Hi, I wanted to respond regarding photographs. We felt the same way with my child. She was so ill looking in all her photos in 1st and 2nd grade. She really wasn't healthy appearing until several months post IVIg (probably 5-6 months or so). Just last month we took her in and while getting family photos taken, we got her individual photo done as well and when I saw the photo I sobbed. It looked like my little girl with a genuine human being look on her face. Her eyes were CLEAR (pupils still a bit large, though!) and bright and she didn't look completely... well, ....sick. THERE IS HOPE!!!
  13. I remember feeling like you describe. I was in a horrible state when my dd was really bad and it has taken me a long time to feel better. But my dd IS BETTER now. It's been almost a year since her IVIg and she REALLY IS better...and had gotten steadily better since IVIg. It doesn't mean that I am not still living in absolute fear that it could come back, because I do. But it won't ever get that bad again, because I am armed with knowledge this time. THERE IS HOPE!
  14. My dd had IVIg (Dr. K's protocol) in November, so it has only been just over 10 months for her but I will go ahead and post an update now. My dd was 5, and we were living in Italy at the time when pandas symptoms exploded August 12, 2007. My husband was deployed to Afghanistan for 15 months. My dd's symptoms were enuresis, strange urinary issues (constantly thinking she'd wet her pants but didn't...stuff like that), separation anxiety (we had to do everything together), suicidal statements, no longer played or was able to do really anything independently (the only activity she did was line up toys and tie straps and ropes into long strings). She had hand tremors which eventually included her entire upper body and head and she began walking strange. She had motion sickness which she had not had before. She told on herself for things she did not do. She ate rocks and trash. She had severe OCD which consisted of: statements over and over (like a good day was 3 times every 5 minutes) "my head says I am going to kill you" and "when you coughed (or when 'they coughed' didn't matter who), I smiled" and "I just said a bad word" (of course these things never happened in actuality --she just had to say it) and she had severe skin picking issues...at times 20 wounds on her body from it. She had horrible rages which would come from nowhere and were completely crippling, leaving us stranded in various places in Europe....her rages have lasted as long as 5 hours long and required extreme physical restraint techniques. We struggled with doctors for a year with this going on with only one period that she went back to normal-ish in April and May and it came back June 6th. Of course the whole time we were trying to figure out what was wrong, just like I'm sure the rest of you guys did....we did lots of testing...I knew it had to be something organic causing this because it really was out of the blue. I had finally started to hear about pandas, knew it was that but could not convince anyone. I emailed Dr. K and he emailed back with his advice. There was a period of time that school was not an option and even when it was, she was only able to go maybe 2 days per week and I had to be on stand by for a phone call and rush in there to get her out of there due to rages. We got moved back to the states in August (my husband's deployment ended in July) and went through the steps and hoops we needed to, in order to get the IVIG and she had it in November 08. She was a little better within days and a lot better in weeks and every month continued to get even better. She had a small set back in July 09 but full strength antibiotics helped right away. Her set back symptoms were: began wetting the bed at night again, got motion sickness again, and got uncharacteristically irritable. And she told on herself one time for something (I can't remember what right now but something about it was very similar to the types of things she told on herself for before). Other than that she has really been doing great. She is so happy and smart again and enjoys playing and just enjoys life! She is a completely amazing kid that makes us laugh and smile. Our family is still trying to heal from the ordeal. It was very traumatic at times, physically and emotionally, I am sure you all know. I've said it on here before, in other places, but the statement "my head says that I'm going to kill you" being the first thing you hear every morning and the last thing you hear every night and hearing it thousands of times per day started to hack away at my own mental health. Anyway, I'm so proud of her and our family is doing ok now. Just getting on with life step by step. She's back in school and I'm back to work full time and my husband's deployed yet again, but this time to Iraq and only 12 months. I am always wishing all the children from here all the best.
  15. I haven't read the responses to your post but I wanted to tell you that you are on the right track. The sooner you get the IVIg, the better. My dd eventually got suspended from school multiple times that I just kept her home until she was well. She would have 4-5-6 hour rages on a regular basis and nobody and nothing was safe. We had to hold her down for that entire time. Ask for homebound school services so she doesn't get too far behind while she is getting better. Get IVig as soon as you can and if Dr. K wants her off psych meds do everything in your power to get her off them. Hang in there. It is horrible and I know you are going through a terrible time right now. I am hoping that your child and family will get back to some sort of normalcy as soon as possible.
  16. Hi all, Just wanted to post an update regarding my dd who had IVIg after a very severe bout with PANDAS lasting about a year or so. You can go back and read my other posts to hear about her symptoms, but I'm guessing most of you on here are familiar with our story. She is doing great, back in school, literally, back in school, daycare, everything is back to normal.....almost. In early July we took a family vacation and just before we left we believe she was exposed to strep. For about a week these are the things we saw....which even though extremely mild...we knew it was NOT her usual self. motion sickness out of the blue urinary issues hyperfocus on things she likes hand tremors return one day after daycare the first day back from our vacation and she started 'telling on herself' again. Well, that was it-- for sure I knew it was back. I asked her pediatrician to give her full strength antibiotics and a full dose of steroid burst. Currently she is on 250mg Augmentin and the full dose for her was 1700 daily for 10 days. I decided to wait on the steriod burst to see if that would help and sure enough, the antibiotics alone helped so we will save steroid bursts for the ace in the hole when upping the antibiotics doesn't help, if/when there is a next time. She has had NO OCD no RAGES no psychatric issues at all. She is really doing so good and I can't believe how much of her came back to us after IVIg. I want to wish you all good luck with your children and families. We are still working through our issues here, after the horrors of dealing with pandas. Luckily she seems fine from it all....but it's the rest of us who have to move on. Take care all. regards, amy s ps. I see they have postponed the release of "The Boy Who Caught OCD", by about a week or so. I had preordered it from Amazon and they sent me a notice.
  17. Buster, as always, thank you for a great answer and please continue to enlighten us all.
  18. Sam, This is an excellent post. Thank you for your insight! Regards, amy s
  19. Whoa, Kelly, great post. I just wanted to say that of course we all want to know what the risks are...(and every doc that has given this understands that they wouldn't write the orders if it weren't justified...it is safe when necessary)...but agree....in our case the risks were MINIMAL compared to life as we knew it and there is not a doubt in my mind that it completely saved my child's life. And if she didn't have IVIg they would have institutionalized her for sure. I am glad you posted this. I don't know what mild pandas looks like...I have a feeling that some on here do not understand the severity of this when it is not a mild case. I firmly believe that I have PTSD from dealing with this illness. Anyone else? Curious. It was the hardest time of my life, since August 12, 2007 (and even though things are great with her since IVIg in November 08...our family is not over it)....and we as a family live in fear every day that it may come back. IVIg was a little over 6 months ago for my dd. She is still doing great. She's not completely the same as she was before pandas (maybe some hyperactivity-mild- that she didn't have prior?), but our life is liveable and she has a future! She is loveable and a hilarious, great kid. We'd do IVIg again in a heartbeat if we needed to and could scrape up the dough. Prior to IVIg, birthday parties, public outings, even grocery shopping at times was not possible. I knew docs who had worked in child psychiatric hospitals and said they had never seen anything like my dd. (they happened to be a witness to one of her milder RAGE attacks and I had to beg to keep her out of an institution). And the thing is? They didn't even see the OCD which was really what was so debilitating and outrageous. I am sorry for rambling. I seem to do that anytime I think about pandas anymore. I am always thinking of all of you guys and your little ones. Hang in there. Kelly, if you want to chat, send me a pm and I'd love to give you a call. Regards, amy s
  20. I am thrilled to hear this news! I hope your child does great and please keep us posted on the progress! Regards, amy s
  21. OMG, Buster this is amazing...this (your work!) will help so many kiddos out there (here!). This must have taken so much time and I am so grateful to you for doing it!!! Outstanding. These docs just do not have time to keep researching this stuff in the detail that you did. The docs are generally scheduled so back-to-back with appointments and then their extra time is ridden with patients in crisis (ours ARE!!!) but ---easier fixes than this... if there is not really easily acsessible evidence on how to treat...they just defer to a higher level...and then it continues...(but they have to do this!) Kudos to you Buster for this work....From me....for my family's sake...thank you for this hard work and for sharing! My advice to new comers to pandas .... start printing out any evidenced based- peer reviewed literature ...even if you don't understand it (NOT FORUM CHAT---docs will discount that in a heartbeat) and try to understand this stuff as much as you can to help direct your pediatrician in the right direction so you can obtain referrals and treatment as necessary. I've been a nurse for 18 years now and I still don't understand it all. It takes more than hands on care...heavy analysis is involved. You and EAMom (and other mainstays) are doing so much to help support this forum... It is much appreciated. I wish I could contribute more than I do. But I honestly believe I am suffering from PTSD after the stuff we've been through in the past almost 2 years and I'm still trying to recover. I'm sure that others have had similiar feelings... I think about you all. Best regards, amy s
  22. Hi Michelle, Sorry to hear your ds is dealing with this. My dd did have this strange phenomenon at the height of her most recent exacerbation. It lasted right along with all the rest of the symptoms for about 5 months and vanished the day after IVIg. I don't know what else to tell you about this. My child does take a supplement "Mastic" and that seems to kept her gut problems under control?? I don't know. She doesn't seem to need a probiotic much at all anymore despite Augmentin 250mg daily. It (Mastic) was recommended by a lyme disease specialist that she saw once who is also knowledgeable on PANDAS. I did read that it was not tested for use past 30 days but we were given a 90 day supply and have had no problems. At this point I'm deathly afraid to change anything in our regimen. Also have you checked for parasites? Just a thought. We had checked but there were none. We got special 'wet' wipes for the bathroom. It seemed to happen for my dd even when she would sneeze she would be incontinent of stool. And she was completely paranoid of other people being able to 'smell her butt' and always in the bathroom to try to clean herself up but would inevitably make more of a mess. Good luck to you. It is simply amazing how many parts of their precious little lives that PANDAS infiltrates. It's sickening. Keep us posted. Regards, amy s
  23. Sam-- This is the first time I have heard of another pandas kiddo possibly having glomerulonephritis. My dd had it at age 3 and I have often wondered about the correlation, especially since both glomerulonephritis and pandas are autoimmune responses. What symptoms did your dd have which made the doc think glomerulonephritis? My dd's symptoms were FRANK blood in urine (I mean, pure tomato juice looking urine, which later turned to looking like red kool aid and eventually cleared up over a period of 6 weeks---- all occuring just days after a fever and gastro symtpoms (negative titers for strep!). My dd also had a murmer and an abnormal EKG (left ventricular hypertrophy, and more) with negative findings with an ECHO of the heart?? As far as the answers to your questions go...my dd's MRIs did not find anything at all. My dd did have a spect scan which showed inflammation in the basal ganglia indicative of OCD, but then we already knew she had OCD. As far as antibiotics go, my child had IVIg in November 08 and I expect her to continue to have antibiotics prophylactically for a very long time, probably past high school. At least that is what I am going to push for. My child rarely needs probotics, oddly enough. At first she did but now it doesn't really seem like she needs them. I might give a dose every few weeks and occasional yogurt. Good luck to your family. Regards, Amy S
  24. This is a great article...I am forwarding it to all the teachers, principals, and school nurses that I know. I only wish there was something more recent that also speaks of IVIg. Over the past two school years...and many many contacts with school employees.... I have yet to have contact with anyone in the school district that has ever heard of PANDAS. Also...how do you know that PANDAS diagnosis warrants an OHI IEP? Is there anything legal that is out there stating such? My dd does not have an IEP any longer since she is symptom free since IVIg (in November) ...however, when she needed one they refused to give her OHI regardles of my protests. Again, great article...thanks for posting it!
  • Create New...