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Iowadawn

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Everything posted by Iowadawn

  1. SAME as Dawn! My son was hospitalized for aggression on Citalopram after 4 weeks and his dose was raised within 10 days. That's when it got bad. Also, he had taken Abilify for a short time. Was started on a very small dose I want to say it was about 2mg and I noticed improvement. The Psych seemed perplexed that I was telling him this and told us he thought what we were noticing was a placebo effect because he's never heard of it making a difference at this dosage. He raised it to 5 mg and then 10 mg and I told him I didn't think it was working much anymore and if anything making him worse. This further made him believe his placebo theory that it was not helping at 2mg if it couldn't help at 5 or 10mg. However, I believe that my son is extremely sensitive to these meds and it may take the tiniest bit to help in a positive way. Anything more than that can have severe consequences. And, in our case, it did. Our son's response to a LAUNDRY list of psych meds has been a combination of disastrous paradoxical effects or little effect. Our psychiatrist, who dx'd the PANDAS (we found the Lyme later) told us that it is very difficult to find a drug that works when psychiatric behaviors have infectious etiologies. The one drug that has helped and no downside has always been Namenda. He said he has treated thousands of kids and Evan's ranks in the top 3 or so in complexity & difficulty in finding something that helps. Our dubious distinction. Ivig has been what has helped most as we treat the Lyme & co. He is on Geodon & Depakote, along with the Namenda right now. Dawn
  2. Run, don't walk to a PANDAS/PANS doc, and preferably, someone who will seriously rule in or out tick borne infections while their at it. Our journey with our now 13 yo son is so very similar. I can only imagine that you are in a "paralyzed-what should I do" feeling. Make a plan this weekend. Make the calls on Monday. With what we have been through & your son's age this is MHO. Give your aunt a big kiss! PM me if you would like. Prayers, Dawn
  3. Our experience with Lexapro & Zoloft was Dis-inhibition and over the top aggression/irritability---BUT the doc did not go low & slow. Dawn
  4. Angie-

    Just checking up on Joe?

    Dawn

  5. Yes, to the rapid cycling symptoms. We have never quite known what we will get after the ivig's, though, as we look back the rapid cycling (and we mean rapid) isn't near the problem with the ivig's now. He use to change into this obnoxious, drunken sailor, in-your-face and I'll just take you down and spit in your face type behavior. Bleck. He seems to come out of the IVIG's a little less bumpy than before. I did get the call from the principal a few days after the last ivig. He had bolted out of the class room to go to the principal's office. b/c a group member had cropped off the legs (so it would fit) to his addition to a poster the group was making (he's 13!) He got there and boiled and then got very aggressive with some teachers whom had followed him down the hall. He then went into a crying jag crying on the principal. From the time he bolted to the time he was able to get back in class on an even keel--about 10 minutes. We have had the weird, maniacal Jack Nicholson behavior or TiGGER bouncy---whoo--whoo-who-whoooo!!! Only to turn and be staring at him with a knife raised in his hand because we looked at him crooked. HAng in there. Sounds trite, but the alternative is to bail out on the rollercoaster ride--and that ain't pretty, either!! Dawn
  6. Please forgive me if this is already been posted on here. I just may have missed this info, but perhaps not. If not, I just caught a news story on the one Corinth girl with lyme disease. On a New station 13. I caught it on a Holistic News site, which did a worthy job ripping into the NYT's article that just came out. Maybe someone can post the link. Dawn
  7. They are well into phase III clinical trials for the use of IVIG for Alzheimer's. Very promising results.
  8. Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced Conversion Disorder. After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. ) Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times. And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud. Sorry you got dooped Corinthdad. First of all, I am so glad we are starting to hear on the forum from parents in New York. I think I could speak for most saying we have been screaming at our computer screens, praying for your children, and wishing that there was something we could do. Thank you for coming on and sharing the facts of the case. Many, like our family, have been at this a very long time. Years. My point about the statistics of families dealing with difficult situations may have been misunderstood--the point was--The Times had a slant they wanted to make, they found some girls and their stressful situations to back up their point (or more than likely what they were paid to run down) and they present it as "see it must be so". My main point is: What about all the other cases. Why did you leave them out of your story? A rhetorical question. Most of our PANDAS/PANS?Lyme families are laden with INCREDIBLE stress when the symptoms are flaring. Stress is everywhere. The New York cases are important. Thank you for coming on board--unfortunately.
  9. Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced Conversion Disorder. After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. ) Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times. And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud. Sorry you got dooped Corinthdad.
  10. Young--pre-puberty. Boy. Very suspicious. Start with a fear of choking? Sudden? Just what I have read. Dawn
  11. My one daughter had this one raised rash that made a trail up her forearm. Not itchy at all. After quite some time it went away. This occurred while treating. It looked like a light fungus/psoriasis type rash. Had it been itchy I would have been off to the doc.
  12. I am indebted, Thenmama, for the info you provided. I used portions of it along with our info to send along with the original Pre-auth for additional IVIG in an effort to head off a denial. I held some back in case we needed more to fight an appeal. And it WORKED!! We rec'd approval for a year again. DS (13 in a week!) had another IVIG 2 weeks ago. We are seeing some encouraging signs again.
  13. I wonder if the sxs are more problematic and disruptive in boys and more easily recognized or not easily ignored. I think some OCD mannerisms in girls could easily be overlooked or dismissed. Just more subtle. Certainly not in all the cases in girls. ADHD in girls is often overlooked because it usually isn't the "cant sit still and concentrate", rather a stare out the window or space out type stuff. My one 17 yo dd wasn't hit with PANDAS until 15. Very anxiety driven, stomach, headache, fear of throwing up in public, sleep disturbances, separation anxiety, moody, etc. Pretty much looked like Dr. K's website describes in an adolescent. In her case there were no tics. Just some thoughts.
  14. I am from Iowa. Dr. E ( a specialist in hematology) at Blanks seems to get the dxing correct. He is behind on treatment. Honestly, I would run & not walk to Dr. K in Chicago & nip this in the bud. Another doc that is a LLMD in Grinnell would possibly be another option. I have to run. PM me. I would like to help. I live near DM/Ames. Curious who your ped is. Dawn
  15. As I understand it, because they haven't "proven" the etiology (autoimmune) aspect of this disease or "proven" which bugs are the offenders, and because this has been a significant hangup in the medical community to diagnosing this they are sticking to what is known in PANS.I truly believe they know it isn't perfect. Cunningham is still at work, and significant blood/fluid investigation is being done on these new IVIG study cases at the NIMH. My humble opinion is that significant new info will be published when the IVIG study is complete, but this could still be a while out. Dawn
  16. My thoughts are a combination of T.mom and worrieddad. I think this paper is meant to appease the naysayers and shut them up. Notice the "CANS" paper was cited. "See, we really weren't so far apart. We thought of CANS , but we can go along with PANS. Boy, we will no longer look foolish ". I do think Swedo is being very careful and meticulous in the presentation of PANS and the IVIG study will be the capstone. The treatment protocol was purposely limited for a good reason. I think of this as a Kum Ba Ya paper. I do believe Swedo "let" the CANS paper be published first on purpose. There has been a method to the madness With All the frustrating delays and happenings this past year....IMHO.
  17. Hello-I am so interested in your visit to Dr. B. We see a LLMD who shadowed Dr. J. Our DS13 is a PANS/Lyme case. I have been really wondering if Dr. B would be helpful? We are able to get IVIG here in Iowa. What is he doing differently for you? How does long distance doctoring with him work? IVIG for your DS? Boy, would love learn more about your experience! Dawn

  18. This video is heart-wrenching! Is Rodeogirl a patient at DENT? Dr. T? I'm sorry, but this is not CD. Is she any better? Is the Mom taking the bull by the horns and looking for help? I want to scream!!
  19. All I can think is that Dr. Cunningham can't get her lab up & running fast enough!! This could be very telling. What will be interesting to see is if the girls' symptoms settle down and in a few months---POW---bigger symptoms. This all started happening right around the front end of the strep season--if there really is such a thing. Just a thought off the top of my head today--don't we spend our lives "converting stress & anxiety & big issues?? We over eat, we bite our nails, we get depressed & lay in bed, we twist our hair, we scream & yell & get easily upset, on & on" Just a thought that crossed my mind.something. Just seems like too big of a dx.
  20. My two cents on What Swedo is saying. Overall, I think you wants to be VERY careful about what she puts out there to the general public so it doesn't jeopardize any ongoing research she is doing. WHat she is saying is lining up to a T with what is on the books--right now. Say the wrong thing and she'll find yourself backpedaling. I think she is being very very careful so not to mess up the work they are doing. Kind of like her recently stating that they knew back in the late 90's that it wasn't just strep, but they kept this quiet in hopes that the disorder would catch on. I would guess that they are keeping some information tight to the vest until the right time. All MHO. Dawn
  21. My two cents on What Swedo is saying. Overall, I think you wants to be VERY careful about what she puts out there to the general public so it doesn't jeopardize any ongoing research she is doing. WHat she is saying is lining up to a T with what is on the books--right now. Say the wrong thing and she'll find yourself backpedaling. I think she is being very very careful so not to mess up the work they are doing. Kind of like her recently stating that they knew back in the late 90's that it wasn't just strep, but they kept this quiet in hopes that the disorder would catch on. I would guess that they are keeping some information tight to the vest until the right time. All MHO. Dawn
  22. Run, don't walk to a doctor skilled to address your son's needs. Welcome.
  23. Kind of a similar thing here. He cries more now when upset/frustrated than he used to. He is nearly 13 now. His reaction is much like Nicklemama's DS.
  24. I've seen reports of anxiety, sleep disturbances, tics, and something else.
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