Iowadawn
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Everything posted by Iowadawn
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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...
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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.
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Dr. T rx'd this test. I think I kind of know why....can others enlighten me a bit. Thanks. Dawn
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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
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Hoping for a summary of the PANDAS conference
Iowadawn replied to AmySLP's topic in PANS / PANDAS (Lyme included)
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. -
Hoping for a summary of the PANDAS conference
Iowadawn replied to AmySLP's topic in PANS / PANDAS (Lyme included)
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. -
OH. MY STARS, YES!!! It is awful! No help, just empathy.
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I certainly had no intention to hijack the topic. I so very much appreciate the encouragement. This is very hard. Dawn
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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.
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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
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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.
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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
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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.
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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.
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Dysfunctional Neuronal Circuits in ASD Reversible
Iowadawn replied to NancyD's topic in PANS / PANDAS (Lyme included)
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. -
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...
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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
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Good to see your post. How are you doing with the breast cancer? It has not been an easy ride here at all. I forget if you are going to Piccirillo as the LLMD. If not, whom, may I ask. There are a few of us old timer PANDAS parents around. Seems that most have turned out to be lyme. Ugh. We keep seeing rashes pop up and leave as we treat bart for nearly a year. PM when you can. Dawn
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Pandasmex-I perked up when I read that your son has been in Rogers. We went thru the screening. We were extremely disappointed--they said impulsivity/aggression was an issue and didn't believe Rogers was the place for him. He NEEDS intensive CBT. I would love to hear more about your Rogers experience if you feel comfortable sharing. Our 13 son is a PANDAS/Lyme . Dawn
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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
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I live in Huxley (south of Ames, north of Ankeny. Our son is a PANS/congenital Lyme & co. case. We see a Dr. Jeff Piccirillo in Grinnell. ILADS LLMD. Oh, I left a post. Was excited thinking you were in Iowa--nothing wrong with Minn! We saw Dr. Elliott. We abandoned Dr. Elliott. Got the PANDAS dx--no idea how to treat. Would not do IVIG. Did he still scoff at this tx?? PM me Dawn