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Everything posted by jdude

  1. What is the difference or benefit of Enhansa v. other curcuminoid products that are readily available at health food stores?
  2. Someone else had mentioned to me that MycoP was associated with raging. Then I checked my son's labs from last year, and it was high. He has been on Biaxin for the past 10 days for an ear infection and I swear his mood/tempermant has improved. Biaxin apparently is used for MycoP. I'm seeing his pediatrician tomorrow, so will discuss with him.
  3. Ditto what Heather said. First, it's great to hear you're studying to be an engineer. My son is almost 13, and his emotional issues have hindered his studies at some times to the point I wonder how college will be for him. He is extremely smart (cognitive scores are extremely high), but grades don't always reflect that. Would love to hear your awareness level at that time about what your brain was going through..did you recognize what was gonig on? My son doesn't have a lot of self awareness..he's had some quirky behaviors that are OCD (obsessive thoughts/compulions) related but I think for him, that's his normal. Thanks for joining and your willingness to share your story!
  4. I was checking his labwork from a year ago and the IgG was in the high range. IgM, low. If it's still high, what is usually recommended for that?
  5. Thanks everyone. I spoke with his psychologist and she agrees we should seek medical treatment (i.e. IVIG) first before going down the path of partial hospitalization(especially if symptoms are PANDAS related, she agreed psych meds wouldn't help). i think she was just getting exasperated with her lack of progress with him. I think perhaps she is not the best fit at this time...he's very good at diverting and getting off topic and he needs someone a little stronger to keep him on topic and recognizing his behavioral issues and working toward correcting them. Although he's always had some level of anxiety, the odd outbursts and behavioral issues are new this year, and he doesn't like to talk about what he doesn't want to talk about. Since she's also out-of-network, if she's not making progress, it's best for us to save our $$ toward what may be out-of-pocket for IVIG and find an in-network therapist (and I did get a recommendation, so we'll see how that goes) Regarding the pencil incident-that was pre-Clarithromycin. I actually think he's been better since he changed to that antibiotic. We've had a really good week. He's been cooperative. He's gotten off the XBox when I've asked him to, been ready for his various activities (piano, swimming, tutoring) and generally been in good spirits.
  6. He's on Augmentin now (actually, at the moment he's on Clarithromycin for 10 days for an ear infection), usually a prophuylactic dose of Augmentin. When initially diagnosed, strep titres were high. Last bloodwork done titres were within normal range. Not sure what other triggers he has, although I will say he has bad allergies..for last month has been extremely congested, have tried three different allergy medications to no avail.
  7. Brief background-DS, 12 diagnosed with PANDAS Sept 2010. Sudden onset of OCD/tics/separation anxiety, handwriting deteroration. ASO titres high, had success with antibiotics/steriod bursts. Symptoms wax and wane. Did not pursue IVIG initially as after first episode, tics went away after a few months, handwriting back to normal, symptoms mild (as compared to Sammy from Saving Sammy). This past year, however, has been horrible. He has been in trouble in school (impulse issues). Recently, he was in serious trouble for stabbing a classmate in the hand with a pencil after constant bullying (she was treating him like a leper, making a big production of using hand sanitizer before touching something he touched, refusing to work with him as a lab partner), apparently, when she pubicly announced her refusal to work with him on a lab as they were assigned to do, he finally had it and did something he shouldn't have done. He has had some rage episodes at home (hasn't had one in a while, but when he did he was like a different person-threatening, never actually did anything, but was out of control). He has been seeing a psychologist who is in the same practice as the neurologist who initially diagnosed PANDAS. I thought that by using one in that practice, there would be a greater undertanding of PANDAS. After the pencil incident, she recommended "partial hospitalization"-it's a day long program at a local hospital for a couple weeks. She felt like he needed to take therapy more seriously (he doesn't always recognize his issues, and will use humor to deflect actual work toward changing). Lately, his anxiety has increased...more handwashing, etc., although his mood has been better and he has been more compliant at home. I just got a note from her wanting to re-visit the partial hospitalization idea-not sure what brought this on. In the meantime, his pediatrician (also a PANDAS friendly doctor) feels like he needs IVIG. He has been trying to get it approved through insurance. Although I recognize my son needs help with anger management, anxiety, impulsive behavior, if the underlying cause is PANDAS, what good would the partial-hospitalization do? She (the pscyhologist) assures me that they won't put him on any meds without my consent, but I'm not sure how much I believe. I have read stories of kids being taken away if parents refuse meds that hospitals recommend. I'm just very leery of this approach, I feel like I should pursue IVIG first, as if PANDAS is the underlying cause, no psych meds or therapy is going to help. What would you do?
  8. I am near Cleveland and have not heard of this doctor. I don't think anyone in the OH PANDAS group has been to him. There is a Dr (features on the PANS video posted here a couple days ago) near Cleveland who does treat PANDAS and is looking to do IVIG here locally. PM me if you want the name/telephone #.
  9. She said she tried to post to youtube but couldn't? Anyway, it will be posted at some point on the Pandas Resource Network website (www.pandasresourcenetwork.com). I'll let you know when it's there.
  10. I was part of the video, I'll ask the person who coordinated it whether she can post on youtube or anywhere else (perhaps even the PANDAS Resource Network website). I'll let you know what I find out. Although you do not have to sign up to FB to view this video. If you click on the link, it is a public view.
  11. Was watching Dr. Phil while folding laundry...it turned out to be about Lyme. Veri interesting. One of the woman there talked about how regular Lyme tests are 60% inaccurate.
  12. Thanks for the recommendation! I also enjoyed "Look Me in the Eye" about Asperger's. Even though my son doesn't have Aspergers, I know kids who do, and it was great insight into how the Aspie mind works. I'll definitely pick up Triggered to read.
  13. Glad you found this forum, it is very helpful. I don't post much, but find the information here very helpful. It does sound like you're head down the right path. Some of the behaviors you mentioned so sound much like my child as well. Wishing you the best of luck for recovery.
  14. My PANDAS DS is 11 (diagnosed at 10). Lately,we've been having several behavioral issues (probably made worse by a steriod course he is on...both for his asthma and PANDAS), severe oppositional behavior, swearing at my DH (saying F-you, which if my DH had ever said to his dad would result in getting his ###### kicked, but thankfully he realizes this is due in part to his condition), repeated potty/body part talk. We're off from school this week, but when he is in school, he seems to be able to keep behaviors in check (thankfully). I noticed last night during a meltdown that his pupils were dilated. At times, he does have extreme sensisivity to light..he wants the blinds in the kitchen closed whenever he's eating. I mentioned the pupils to my husband and he thinks I'm nuts and everything is "PANDAS". I know other people have mentioned this with their kids. I was just curious what was up with this.
  15. Our ASO titer tests read <100 "normal range", test result "200", result "above normal range". HTH
  16. I haven't been here for a while, but after seeing aerials 2 yr review, I was thinking of our year and half review. Short history-DS (11-will be 12 in June) had sudden onset of OCD in May 2010, followed by tics (more like ritualized movements of head/arms), separation anxiety (had to touch me constantly). Diagnosed with PANDAS in Sept 2010, after antiobiotics and a steriod burst, symptoms went away. Since then has had exacerbations of other OCD (constantly touching things), that went away with another steriod burst, then handwriting issues, different OCD behaviors, decrease in math skills, and now the wonderful (insert saracastic tone here) rage episodes. His PANDAS doc, a local pediatric neurologist, hasn't recommended IVIG since his symptoms since the onset have been relatively mild (compared to say, Sammy from Saving Sammy). He is currently taking 1 250mg tab lg Pen VK. She also has kept him on Clonidine which was initially prescribed for the tics, although he hasn't really had many tics since the initial onset. She has recommended we take him to a Psychologist for CBT to manage the OCD when it's prevalent as well as the anger/rage issues. My husband questions how this can help if the cause is the PANDAS. My son's rages aren't constant, but can blossom out of nowhere, and often if we are reprimanding him. Last night's rage was due to TV privilages being taken away since he ignored my directive to not take food into the guest bedroom and he then told me "I sucked" and also used the F-word to his brother. I took him in for an initial consult, the psych recommended one of his groups for the rage/anger issues (which my son said he would refuse to go to...he's embarrassed and doesn't like to talk about things, so not sure how this is going to work...) So...my question is, should we consider IVIG even though symptoms are relatively mild? I realize this is a chronic condition ,but it just seems like he takes a few steps forward only to take those steps back. Also, what are your opinions on CBT and therapy for anger management/rage issues for PANDAS kids? Any advice/thoughts would be appreciated.
  17. I have been e-mailing our local news station's health reporter. I first sent one over the summer, then just e-mailed her again with the links to the Washington Post article. She just called me and is coming to our house next week to interview me and my son (I have to speak with him today and hope he's okay with it, I think he will be, he's been pretty open with his friends). She said the station really wants to promote this during "sweeps month", so will probably air first week of November! I'll post the link once it airs (and will tell my local NE Ohio folks when to watch).
  18. We all get the flu vaccine every year. PANDAS son also has asthma. Breathing trumps PANDAS symptoms. He didn't have any reaction last year to it (he had first symptoms of PANDAS May 2010). Shot, not mist (can't get mist with asthma anyway).
  19. He does take a prophylactic dose of Pen vK 1/day (250 MG), prior to that he was on Zithro. He increases dose if known strep exposure. My DH also questioned the PANDAS diagnosis last night since "he isn't getting better". That isn't exactly true. He is much better than last year, and he has had periods of no symptoms. He seems to think he should be "cured" and doesn't get that this is a chronic thing. He isn't reading forums, talking with other PANDAS parents, etc, because as the main breadwinner, he doesn't have as much time to devote to this as me. I am forcing him to go to his next doctors appointment with me so she can explain some of this to him.
  20. Bit of background...DS, 11, started symptoms May 2010 (hand rinsing, followed by lots of tics starting in July, separation anxiety, age regression), finally diagnosed w/PANDAS in Sept. His symptoms have waxed and waned, with periods of absolutely no symptoms (after one steroid burst, then after he was on another round of steriods for an asthma attack). His symptoms come and go, and seem to change. He had a noticable change in handwriting after a strep exposure, that is better. Math skills went down (he was in the "accerated" range on state tests last year, recent test was "proficient", with one area being below proficient. Based on a recommendation from someone on this board, we have started Kumon for math refresher. Latest OCD symptom is having to have the door between the laundry room and family room shut. If he sees it open, he will stop what he is doing and shut it. It drives my DH crazy as sometimes he is walking in and going back out and doesn't want the door shut. DS also seems to have a preoccupation with sexual topics (ever since he had "family life" class), although he does manage to keep this within the house and not in public. He does drive his older brother nuts with his talk though. Other than those two things, he is pretty typical. He plays with friends and does typical things. If you met him you may not even notice anything different about him. My husband thinks every time a symptom comes up, no matter how mild, I need to "get it fixed". My son is not incapcitated and compared to some of the children i have read about on this board, I feel pretty fortunate his symptoms aren't worse. My husband is the one driving me nuts. Last night in a fit of frustration over the door issue he made an offhand remark about "doing something about this or have him committed". My son overheard this. I was FURIOUS!!! My DH knows he was way out of line and has apologized (after I had to calm my upset son down who was crying and saying he didn't want to go to a mental institution. I'm struggling about whether to go the IVIG route to knock lingering antibodies out of his symptoms. It seems like such an invasive procedure for someone with what I consider to be mild symptoms at this time. But if i knew it would get him back to 100%, it may be worth it for my whole families sake. Any thoughts or advice?
  21. We just got the state standardized testing scores back yesterday. Last year (test taken before PANDAS symptoms started) DS was in the "Advanced" range...well above state and school average. This year, he scored in "proficient", and scores were below state average. I have to believe based on what I've read that his PANDAS played a role in this dramatic decline. Has anyone else experience this and if so, have you sought tutoring? I thought perhaps some one on one tutoring may help. He's starting middle school this fall and don't want him to fall behind. I know it's frustrating for him as he was once one of the best in his class at math and now he is struggling.
  22. Two distinct things that can co-exist. My son is not on the autism spectrum at all. He is what some call "classic" PANDAS. A typical child who suddenly "exploded" with symptoms (OCD, tics, separation anxiety). With treatment, he is doing much better, symptoms wax and wane with strep exposure. If you met him you would have no idea anything was different with him, unless he was in an exacerbation period.
  23. We see Dr. Reed-highly recommend. I sent you a PM...check your messages! Oh and for the insurance questions, she would be considered an "out of network" doctor. Their office is helpful with completing necessary forms to turn in to your insurance, you have to pay up front, then submit. It was well worth the cost for us (although our out-of-network deductible isn't too bad.).
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