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-> Children's Health
seeker
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 Thu, Nov 12 2015, 9:25 pm
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It was absolutely not boring, very concise and clear and helpful! I like to know what's going on!
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seeker
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Thu, Nov 12 2015, 9:28 pm
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Can someone please PM me Dr. Schulman's email address? I am not seeing it online.
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amother
Lime
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Thu, Nov 12 2015, 11:26 pm
$250 for the private consult with dr schulman. Run blood work through her. She runs different tests than other Drs and picked up our pandas case when my regular ped didn't even though he had run bloodwork for pandas too.
Very thorough. Just call her office and set up a consult. Wait time may be 6 weeks til you get that appointment.
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seeker
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Thu, Nov 12 2015, 11:33 pm
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6 weeks is a long time when you have a little kid with developmental concerns. I wonder if she could tell me via email what blood tests she recommends and I could have my regular doctor order them. He is very helpful with things like that.
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amother
Peach
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Thu, Nov 12 2015, 11:50 pm
Lime, how long ago did you start with your initial consult at Dr. Schulman?
She charges $400 for initial consult. That covers 3 months of follow ups. It's $250 for next visit and next 3 months if needed.
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amother
Cerulean
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Fri, Nov 13 2015, 12:11 am
If PANDAS is an autoimmune condition, how does antibiotics work? Do the antibiotics cure it or just manage the condition?
Does anyone know if Dr. Shulman would treat facial and vocal tics in a child with slightly elevated titers but no real behavioral issues?... (BH... I have another child with behaviors that we are questioning pandas as well)
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amother
Lime
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Fri, Nov 13 2015, 7:03 am
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I'm lime amother. Your right this was my follow up visit. The reason dr schulman insists on azithrocycin as opposed to any other antibiotic is because it has an anti inflammatory component as well so the antibiotic component works on the strep and the anti inflammatory works on the brain where the tics or weird behaviors are coming from. My DD has sniffling facial tics. We've seen some benefit to the antibiotics but it's only been 6 weeks. We have ways to go. She'll be checking the blood again in another month and see. There is also an approach of removing tonsils and adenoids in case the source of strep is hiding back there. We may go that route if bloodwork still has high strep #s. All this and my DD ONKY HAD STREP 1 x last yr. so she thinks maybe it's hiding behind the tonsils. But for now we are staying the antibiotic course.
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ra_mom
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Fri, Nov 13 2015, 8:30 am
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Thanks lime amother for writing that out. There is actually research being done on isolating the anti-inflammatory part of azithromycin and introducing a "new" drug on the market which would be beneficial for many autoimmune conditions. I hope it takes years and not decades.
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amother
Lime
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Fri, Nov 13 2015, 10:09 am
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I'm lime another. You are correct ra-mom that's what dr schulman about separating out the anti inflammatory component that it's in research but I think it's years away.
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observer
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Fri, Nov 13 2015, 10:20 am
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Would love to have a pandas support group....past few months have been really difficult..
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goforit
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Fri, Nov 13 2015, 10:53 am
| observer wrote: | | Would love to have a pandas support group....past few months have been really difficult.. |
I would totally join. We can share and see what works. Great idea.
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pause
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Fri, Nov 13 2015, 1:05 pm
| seeker wrote: | | 6 weeks is a long time when you have a little kid with developmental concerns. I wonder if she could tell me via email what blood tests she recommends and I could have my regular doctor order them. He is very helpful with things like that. | I believe it's the regular CBC panel that picks up on the ASO.
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ra_mom
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Fri, Nov 13 2015, 1:15 pm
| pause wrote: | | I believe it's the regular CBC panel that picks up on the ASO. |
A blood test is the first test taken to check ASO/titer levels. If you have this done before your appointment with Schulman, diagnosis and treatment is done faster.
Edited for correction
Last edited by ra_mom on Fri, Nov 13 2015, 2:58 pm; edited 1 time in total
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seeker
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Fri, Nov 13 2015, 1:19 pm
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Just wanted to say that I emailed Dr Schulman last night (thanks for the address, those who pm'd me!) and she responded already this morning and told us which blood tests to ask our pediatrician for. Wow, that is some service for someone who isn't even a paying patient (yet)
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amother
Cerulean
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Fri, Nov 13 2015, 1:30 pm
| amother wrote: | | I'm lime amother. Your right this was my follow up visit. The reason dr schulman insists on azithrocycin as opposed to any other antibiotic is because it has an anti inflammatory component as well so the antibiotic component works on the strep and the anti inflammatory works on the brain where the tics or weird behaviors are coming from. My DD has sniffling facial tics. We've seen some benefit to the antibiotics but it's only been 6 weeks. We have ways to go. She'll be checking the blood again in another month and see. There is also an approach of removing tonsils and adenoids in case the source of strep is hiding back there. We may go that route if bloodwork still has high strep #s. All this and my DD ONKY HAD STREP 1 x last yr. so she thinks maybe it's hiding behind the tonsils. But for now we are staying the antibiotic course. |
Lime does your daughter have any other symptoms beside for the sniffling? Are you only treating that?
Anyone know of any natural anti inflamatory herbs or vitamins that would be beneficial? If the only reason why azirhromycon works is because of the anti inflammatory mechanism, I would love to try something else as she only has tics that dont really bother her. The only one that bothers her is when she gets eye blinking tics. She switches off between nose scrunching, throar clearing, sniffling, deep inhalation, or eye blinking... She is doing great in school BH. It is only the tics... she has had strep twice in the last 4 or 5 years.
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amother
Cerulean
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Fri, Nov 13 2015, 1:31 pm
| ra_mom wrote: | | Yes, this is the first test taken. ASO/titers. If you have this done before your appointment with Schulman, diagnosis and treatment is done faster. |
A CBC does not test ASO... it is a special blood test. Its many more vials. A cbc can be done from a finger prick.
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ra_mom
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Fri, Nov 13 2015, 2:56 pm
| amother wrote: | | A CBC does not test ASO... it is a special blood test. Its many more vials. A cbc can be done from a finger prick. |
Sorry, didn't catch the CBC part of the poster's post. Just saw ASO and wrote to confirm that that should be done first. Thanks for correcting me!
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ra_mom
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Fri, Nov 13 2015, 3:06 pm
Seeker, much hatzlacha and refuah!
Cerulean, you should do some more research on what happens when the strep antibodies attack the part of the brain that causes tics and behavior changes. Maybe you need specific anti-inflammatory properties for the brain as there are plenty of amazing anti-inflammatory drugs on the market that are used for many conditions but not for pandas. There is a specific property in Sandoz azithromycin that seems to work.
I once came across some website and YouTube clips from a couple who sells specific combinations of essential oils that they use for their son's pandas, but I am way to wary of random people selling items, I know essential oils can not be played around with, and I would rather deal with a doctor who has 20+ years of experience treating this serious brain issue and not play around. But it may be worth your while to look more into such approaches.
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observer
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Fri, Nov 13 2015, 3:08 pm
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Some people use a low dose of ibuprofen daily, due to the anti inflammatory properties. I am very wary of using ibuprofen daily, though.
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observer
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Fri, Nov 13 2015, 3:10 pm
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Is anyone having success with other drs as well? Or only dr. schulman?
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