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Everything posted by JAG10

  1. I just wanted to comment that when I mentioned the quote (not sure if it's Dr. Cunningham's), I knew that this could result in some mixed feelings. I'm grateful to be part of a group that can discuss such highly emotional topics as this with a respectful and considerate tone. Although my dd12 was never diagnosed ASD, I have no doubt that at her worst and prior to proper medical treatment, I could have had her diagnosed with Asperger's. Due to my professional experience as an SLP, I knew she was not ASD and thus knew to keep looking, keep searching out medical opinions. ASD is simply a
  2. Does Dr. Cunningham make these types of statements in her presentations? I agree it muddies the waters. If a parent whose child fit pandas criteria w/o ASD characteristics sees that front and center, they will be very confused. Not to say the overlap of ASD characteristics and pandas for some children shouldn't be mentioned somewhere, but the marketing of that statement is striking. Maybe it has something to do with the start-up donations.
  3. Was anyone else surprised by the front and center quote "Compassionate testing for treatable forms of Autism Spectrum Disorders"? I'm stunned at the inference that PANDAS = a treatable form of ASD would be made so prominently.
  4. Teens are placed on long term abx for acne all the time, both systemic and topical abx. Hasn't Dr. T posted somewhere that "resistance" is only an issue of misuse when an entire community is placed on the same abx and overly so as in for viruses, ect. just to make patients happy. Maybe he said that on the radio show?
  5. I do so love my analogy queen!!! Akin to your basement one, Dr. T used a water-main break......steroids can shut down the water main supply in a major way, but that is no way to handle a leaky faucet. It works, but it's too crude. You need more sophisticated analysis to determine exactly what is needed to fix the small leak (which if left unattended, can still cause plenty of headaches....$$$, overflow, irksome noise you can't get away from~ aren't analogies just awesome?) Even after a long time and much investigation, even when you determine there is a vitamin or mineral deficiency f
  6. I agree with Amy. My dd12 received this diagnosis and therapy years ago, given glasses for focus which sit somewhere collecting dust. She skipped many of the little function words in reading like she didn't even see them. Heck, sometimes she forgot which direction she was to read in! It all went away with pandas treatment. I honestly felt at that time that there wasn't a diagnosis that we couldn't score for her if we wanted it. I don't know Laura. I'm starting to sound like the most anti-therapy therapist that every existed! Even in the schools, I know, pretty much upon evaluati
  7. If there is a next time I hear a doctor actually speak the words "I don't believe in pandas" ...without skipping a beat I'm going to reply "I don't believe in co-pays for ignorant professionals" and walk out. Really....at that point, what have you got to lose.
  8. Hi dcmom, Our dd's are very close in ages and remission. My 7th grader is a terrible speller, but always aced spelling tests; same with my 4th grader. Neither girl spells well in composition. It occurred to me in composition, both girls' "default position" is to spell phonetically words they do not know automatically. Whenever I cue them to visualize the word in print in their minds, their spelling improves tremendously. Both girls have strong visual memories, but for whatever reason, they default to phonetic spelling unless I cue them to visualize. I'm hoping with practice, this str
  9. Very interesting points highlighted in this thread to which I would like to add my two cents. I find "reference ranges of normal" curious......particularly those that show significant variability in tight age ranges. Let's stick with copper COPPER Dd9 = 74 with a normal range of (117-181) Dd12= 70 with a normal range of (87-182) You can see both girls have similar levels, but younger girl is farther 'out of range' than older girl. Both of my girls are big for their ages; tall, but lean. Dd9 is 5'1" (85lbs) and dd12 is 5'8" (142lbs). Does size play a larger role than chronolog
  10. Hi Landamom, Wow! You are the first parent I've every seen post about low copper besides me. Most folks, if they post about copper at all, post about high copper. I thought for sure both of my girls would be high copper, but nope. THey've been tested twice now and both my dd9 and dd12 are low copper. There is a compliment test that I'm drawing a blank on now that rules in or out Wilson's Disease. My girls do not have Wilson's disease, just low copper. I've been supplementing for a month or so with 1.5 mg of chelated copper, but neither Dr. B nor our family doctor seem to get too jaz
  11. There is definitely something to the cyclical illness theory. I remember before I got married I had the stomachs flu on Christmas Eve/Christmas day for 3 years in a row. My to-be MIL thought I was trying to avoid going to her house for the holiday and actually said....who gets the same illness on the same day 3 years straight? Well, wouldn't you know my MIL and all the in-laws who live in Baltimore have gotten the stomachs flu the week before Thanksgiving, this will be year #3.....and we bring it home with us after visiting them. Someone once told me getting a stomach virus 3 years in a r
  12. Mom MD, I have to admit your post gave me a chuckle. I mean, you're a doctor and if your husband gives YOU the skeptical hairy eyeball.....how do any of us stand a chance??? God bless the dads who fight for their pandas/pans kids. My husband is a great guy who trusts my instincts....especially when my instincts and his wallet do not intersect. But the pandas dads who take this fight head on are truly exceptional fathers. I thought of you when it was reported that Swedo said not to chase titers as we both have kids whose DNAseB titers had risen and fell with degree of behavior
  13. BTW, someone was so sweet to PM TBI is when you hit your head-hard, which I did know but appreciate anyway. Very interesting how this helps whether neuro dysfunction is stroke or TBI or dementia.......
  14. I read the article Nancy posted on reversing ASD and something sent me search which led to something else and I landed on an old Trg girl post about Amantadine which EAMom added some valuable input on AN. I'm so curious about this drug. It's an old flu drug from the 1960's. I was fascinated by the conditions this drug is being used to treat and how close they hit my family. Parkinson's (dh's aunt) MS (dh's dad, brother of aunt above) ADHD (dh and both dd's all display to some degree) Livedo Reticularis (both dd's) Traumatic Brain injury (do I really need to go there?) Dementia (old gr
  15. I think all ER kids with stitches are referred to this plastic surgeon who consulted with the doc who did the stitching Friday night. He might be looking from a properly healing point of view. My older dd12 had a nasty gash under her chin from falling out of a wagon 2 years ago and we saw this same doc, so I already know him. He will be the one who removes the stitches. I had to have doc fax script to school for ibuprofen.....more over the top CYA.
  16. It is shameful, IMO. Some people I've talked to have said....well at least you've got insurance to pay for that. True that I'm grateful for the Benjamin co-pay, but what should have been a $2000 ER visit will likely be....IDK, $20,000??? That's sickening. How many of you really need that $18K in treatment for your kids that would make a meaningful difference in their lives??? What is wrong with people? If it's not bleeding or broken bone, if it cannot be objectively measured than it's not an emergency? And if subjectively we can determine everything looks ok, but we can objectively meas
  17. :lol: :lol: Well, I reckon we might as well have some "wrinkly" to go along with Jill's tale of "irony." I love you guys.....wrinkle...iron; teehee!!!!
  18. Most of my posts are about my older dd12 whose symptoms have been far more severe/significant than my younger ones. Well this post is about my younger dd9. Fortunately, this is not a story about my dd9 going crazy from PANS. After school yesterday, she went to a swim club with her best friend, her mother and 3 other girls. There is an awesome slide where there are a bunch of steps and a platforms to reach the top. Only one person on the platform at a time is the rule. When my dd joined her friend on the platform, the lifeguard promptly blew the whistle at her. As she stepped off the
  19. Peg, you are deserving of a one way ticket to heaven in my book. I have no specific words of wisdom, but a two-prong strategy I utilize during times of crisis. Prong one is specific, systematic planning of what will be done next (which it sounds like you are doing.). Prong two is a method of distraction and periodic escape from the relentless emotional drainage of prong one. If you are a reader, fiction (not related to research). I just finished Gone Girl which was a captivating escape. Perhaps you have different hobbies, but you need to schedule time to give your brain a rest from
  20. I listened to this in its entirety as I did my chores yesterday. I found it a little depressing.....like nobody really has any idea what they are doing with this condition. The problem is not bad or faulty antibodies......but then it's not understood why iVIG helps? And the BBB breach involvement he also finds suspect as it is being described? Does anyone know if Dr. T is still in process of offering iVIG in his office? He didn't seem that enthusiastic about iVIG. I find the alternate fever response theory very interesting. We are all over the "does it exist" question (insert eye roll
  21. You are making a good point there! This year, I'm getting one of my former elem students back as a 9th grader. She is non-verbal and uses an iPad as a communication device. Writing is extremely laborious for her beyond 20-30 words fill-in-the-blank style. It will be interesting to see what they say to her. She has a diagnosis of orthopedic impairment since school age. She is one fantastic young lady and they better not mess with her. Grrrr
  22. This is frustrating. I filled out these applications for two of my students last year; both diagnosed with speech/Language impairment. One boy stutters and received 1.5 time for all sections. He's had an IEP since 2nd grade. The other girl has a 504 plan for artic and word retrieval and she also received 1.5 time for all sections. She had had an IEP until 9th gr when I switched her to 504 plan. Both my school psychologist and counselor told me my students didn't have a snowballs chance in Miami because both students score advanced on PSSA (state assess) and take AP courses, but both
  23. Lisa, Awhile back Dr B tried adding Bactirm to my dd12's abx for "possible Bart." I don't remember if it started right away, but she had some headaches and stomache aches yet NO behavioral changes-nothing. We had labs drawn 3 weeks later and her liver enzymes were crazy high; ALT and AST in the 700's and 300's when they should both be around 20! We immediately stopped EVERYTHING. 6 weeks later her liver enzymes were down to 50's and 60's, no headaches or stomache aches. After that, her ALT and AST have always measured back in the low 20's despite the many other abx and supplements.
  24. fyi for future mosquito bites, put scotch tape on them (and leave it there) as soon as you notice them (don't wait until they are big). It really helps with the itching and keeps them from getting big We have never tried that! Definitely going to give it a try. Thanks!
  25. fyi for future mosquito bites, put scotch tape on them (and leave it there) as soon as you notice them (don't wait until they are big). It really helps with the itching and keeps them from getting big We have never tried that! Definitely going to give it a try. Thanks!
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