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Iowadawn

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Everything posted by Iowadawn

  1. Iowadawn

    Yeah--the yucky sexual misconduct with a female patient is not going to go over well, especially with his past hx before the board. The added a bunch of "treating chronic Lyme" junk, that others say is the way they go after the docs. Using IV abx, not reporting lyme to state, CDC stds, record keeping...The behavior crap ticks me off. Trying to stay thru the end of the year. Then IL on...

  2. Iowadawn
    Ceftin & azith here, too. Boy, I was on some ceftin here recently---I really had stomach issues. Don't take that stuff anywhere near late evening hours, even with food--violently ill (vomiting). It happened more than once, and I noticed even in the daytime I felt nauseous at times.
  3. Iowadawn
    Dr. T rx'd this test. I think I kind of know why....can others enlighten me a bit. Thanks. Dawn
  4. Iowadawn
    Hello all! Iowa is about to lose their one & only LLMD--a messy case coming before the Iowa board, that just also happens to also include treating "chronic lyme". I am wondering about DR. C in Columbia, MO and treatment style. Or anything you can tell me or PM. I'll start with this. Thanks so much. Dawn
  5. Iowadawn
    Chandy's research sounds strikenly similar to Dr. Karen Newell-Rogers at Viral Genetics. I think it is something like Targeted Peptide Platform. Her work is very exciting.
  6. Iowadawn
    All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented.
  7. Iowadawn
    OH. MY STARS, YES!!! It is awful! No help, just empathy.
  8. Iowadawn
    I certainly had no intention to hijack the topic. I so very much appreciate the encouragement. This is very hard. Dawn
  9. Iowadawn
    Our LLMD ran the VEGF on our son, who has battled bart. It came back extremely low. We will consider running the bart test from Galaxy Labs. He said that this would tell us for sure. Right now we took him off all abx so we can run the Bb culture.
  10. Iowadawn
    I'm happy to hear your child is doing well enough that you've never considered this an option. For some of us, things are so bad that we feel we cannot take care of our children or keep them safe at home. Its really an individual decision as we all are doing the best we can for our kids. This is our situation. Impulsivity/rage/dangerous to property and others--- 13 yo hopping in the car in a rage grabbing the car keys, getting it in gear--luckily we had pulled the van directly behind. Police popped window-----Aaaa lastest of a long string. We have no choice. We have had to hire retain an attorney. $$$$. There is a lot more to the story that I will share via PM only. Our son's case has been very complicated. It has been a lonnnnggg haul, and seeking placement has not been taken lightly. He will be behind bars if we don't. This place will continue medical treatments. It is probably a year or so stay. This place isn't your grandma's dude ranch. Dawn
  11. Iowadawn
    We did an intake with Rogers, which we were very excited about finding. The docs there said his impulsive/aggressive/anxiety mixture was not for Rogers. Gave us another suggestion.
  12. Iowadawn

    The program is at Meridell Achievement Center in Liberty Hill, TX. They have psychiatric programming and separate neuropsychiatric housing and programming. We have been told we can address the medical there. We have heap-big court/state issues. Check out their website. Right now we are haggling w/ insurance. We have ours; he will also have medicaid. We have serious/dangerous behaviors. Dawn

  13. Iowadawn
    We are currently working to get our ds13 into a neuropsychiatric residential program a longggg :-( way from home--the one drug they speak about to help settle down the limbic system and help the frontal lobe work better is Amantadine. The anxiety/impulsivity/aggression continues to be a nasty mix here. It is a mild glutamate antagonist, too.
  14. Iowadawn
    Vistaril here too as Rx for anxiety. Our ds13 does not get sleepy from it; never did. Just an FYI--Zyrtec is the second generation antihistamine that comes from hydroxazine (Vistaril)just no anti-anxiety properties.
  15. Iowadawn
    Many child psychiatrists in Central Iowa have been using Namenda for some time in the autism community with some good success, overall. I am about ready to ask our psychiatrist to put our son on it again.
  16. Iowadawn
    No antipsychotics in use with your child? The mouth movement stuff can come with those. Wanted to make sure, it would need addressed by the psychiatrist. Dawn
  17. Iowadawn
    We have a phone consult with Dr. T coming up in the next week---this certainly will be an object of discussion. Thanks for all the input. We are working to keep the state's hands off our son--ain't looking too good right now. Keep us in your thoughts & prayers. Dawn
  18. Iowadawn

    Angie-

    I lost the last note I wrote. We have to put Evan in Orchard Place. What did Dr. T have to day or add to your PANDAS journey. Was going to fly out, but for a variety of reasons opted for the phone consult now. What might we expect in the consults? Great to hear the improvement with Joe. We have a more classical presenting (now 18) dd. 15 at the time. ASO's still up -me,her,Ev...

  19. Iowadawn
    no dog. or creatures.
  20. Iowadawn
    The various times we have tried to go after teh biofilms with varying amounts of flagyl or GSE--nasty. We are in the trouble we are in now after a flagyl. We have to place Evan in a residential treatment center here in Iowa (PMIC). We are attempting to keep him on our leash and not the state's. Not sure if they will bite with our offer. We have to keep it out of the delinquency side. The risk is too great because of the charge. We do NOT want to see him start getting in the JvJustice web. Pray they take our counter to their offer. We are headed out east to Dr. T to see if there is some component we are missing or just what to do. It has been a verrrry challenging week.
  21. Iowadawn
    We all have our tonsils. No one wants to take them out. dawn
  22. Iowadawn
    Hello all. It has continued to be a haul for us. I have been on the forum for some time. I need to throw this out there and see what is new or recommended in Strep in the house. Our Ds13 is a PANDAS/Lyme case. He has had a number of ivig and been on abx since sept 2010. The bartonella (vegf) factor is very low, as is babesia. Strep ASO still above normal after all the abx. I ran my ASO....386. I ran my daughter's.....386. Now, for those who remember...we were a strep family with titters in the 1000's....5000 and above. So these are great. But I still think he is reacting. What is the latest and greatest thoughts from those treating in he trenches....what to do with family members. Thanks. Dawn
  23. Iowadawn

    IVIG a couple weeks ago. JUST saw your post when I logged in. Sorry for the delay in responding. Evan is back in the hospital after a dangerous incident this weekend. How is Joe?? Iwill write more at a better hour!!

    dawn

  24. Iowadawn
    I have a script for a variety of blood tests, among them are the strep titers. We are treating bart & lyme, also. They were not "normal" the last we checked, either.
  25. Iowadawn
    Hello Kerry, The first generation are H1 antihistamines and cross the BBB. Vistaril (hydroxazine) is unique among the first gens H1's in it's anti-anxiety abilities. We haven't found it to be sedating. It is still used as a calmer-downer drug pre-surgery or dental procedures. The nice thing about it is the ability to layer additional anxiety/sedating drugs on top should more be needed because there is little (if any) interaction. I only speak from our experience with this drug and do NOT say it is best. The earlier posts with all the links gave me a better understanding, also. I am curious on Swedo's take on the H2 antihistamines. My two cents. -Dawn
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