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JAG10

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Everything posted by JAG10

  1. My dd14 had a spect scan in 2007 at Amen clinic in VA. My understanding at the time was it shows activity and her whole brain was over active at that time.
  2. Not a movie for the easily offended....or the children. It's about a boozing, drugging, womanizing Dallas electrician, a hustler by nature, who comes up HIV+ with 30 days to live in the mid-late 80's. He gets his hands on some AZT that is being used for trial but he doesn't improve. Oh, you know it's Matthew McConaughey, right? Anyway, he finds a doc off the beaten path who teaches him mainstream medicine is going to kill him and he needs to strengthen his immune system. He does WHATEVER it takes to make that happen and that is the part of the story we here would have a very sympatheti
  3. It's true that you won't find a government website that states you need to be 2 years below grade level. It has to do with the diagnosed disability and the related needs that require specially designed instruction. 2 years below grade level in at least one area, not all, is a barometer that parents and teachers can understand. It has to do with standard deviations below the mean as well as discrepancy between cognitive ability and achievement. A student can most definitely display uneven development being above grade levels in some areas while significant below grade level in the areas whe
  4. No desire to attack anyone. My points are not being articulated in a way that makes sense to you. Best wishes for your son's health and education.
  5. The connection is that if the typical pediatrician was as apt to diagnose and treat pandas as they are to say, push vaccines, my dd would have never skipped a beat! It is the medical community's failure to get to the root cause of this generation's epidemic of neurologically symptomatic children that has schools across the country scrambling. Joybop listed 6 mental health diagnosis and one medical. Isn't it the medical diagnosis that is causing the preceding 6 mental health symptom clusters? Isn't that why you are here? Isn't that why most of us are here? If you take care of the underly
  6. I understand your frustration. But let us all not forget this....education is being forced to deal with/fix the result of what our medical community is largely choosing to ignore. All my professional expertise, therapeutic strategies, commitment and determination on a daily basis to teach my daughter paled in comparison to the gains she exhibited with proper medical intervention. And I knew that from the very first steroid burst. I was doing what I could to keep her afloat while we got her healthy. And that took 3 years, traveling up and down the east coast, tens of thousands of dolla
  7. I see my comment about "the county" came off flip--- not my intention! Depending on where you live the structure of the school system can look very different. Some are set up by counties and the special education administrators are housed there. Some states have many independent townships within a larger county. Each township has its own superintendent, spec ed administration ect., but the county has an overseeing unit that coordinates with the state level. Everyone's situation and circumstances are obviously different. Some families do need and benefit from advocates. But with or
  8. 504 plans provide accommodations, which it sounds like joypop's teacher is unable or too rigid to implement (30 minutes to pack-up doesnt sound like she was doing anything but observing and nagging.) They can also provide medical nursing services. Home bound instruction has its own specific qualifiers not in play here. It sounds like Chemar was satisfied because accommodations worked. Joybop's son is in between- what I mean by this is his executive functioning has (I'm guessing) recently fallen apart, and he cannot accomplish tasks. He is not yet two years below grade level. If he cont
  9. I always feel so torn when I read posts that rip special education. I'm not sure who exactly is meant by "the county" but I can tell you there is local and federal pressure placed on districts if the number/% of students identified with disabilities and IEPs/504 plans is deemed too high; like sanctions and action plans pressure. Not to mention the financial pressure on every level. Getting an aide for a student is hiring a person just for them and it is not something that will come quick or easy. The only reason it is helpful to take your pleas to special education administration is bec
  10. Oh thank God! I had such agita wondering if it was going to be a frustrating flop. Validation and treatment! And it should be so. Rest up, friends. Health to you both
  11. Yes, cost can be an obstacle. There is a great thread on that too here, I think Vickie started it? Maybe someone else remembers. About ACA, I was listening to Rand Paul the other day. He said the number one thing you can do to survive ACA is to find an in-network provider who will be your advocate. I feel very fortunate that Dr. M is our family physician in our town. My dd13 is currently on antibiotics (doxy) for her acne. There is much anxiety about the ACA. We will need to stay focused, work individual obstacles to the best of our ability and use our creativity to obtain what our
  12. HA!!!! I completely agree with you! I am a speech-language pathologist, therefore my dd13 LIVES with an SLP and steroids as well as IVIG resulted in improvements that far exceeded anything else.
  13. I don't know exactly. Dr. T has an alternate fever response theory you can search here so I suppose it is somehow related. The point is this....it's a clue, a sign that they can be better. My dd13 was never diagnosed ASD, but ADHD and lots of word retrieval issues. Once pandas was in motion, she NEVER got fevers-which is NOT normal! So rare, I remember in 3rd grade she spiked a fever from a bad UTI (that ironically came from bathroom behavioral issues and urinary frequency!). Anyways, from that fever and subsequent antibiotic prescription that followed, her conversation was so easy and cl
  14. Hrosen- those are the kids you want to tell to go play in the poison ivy and see how they respond to prednisone. When I speak with parents of children with ASD and I'm comfortable with them, I ask them this.....how is your child different with a fever? Some have said that is the only time their child ever spoke. One mom cried saying her child was so normal that she would feel guilty how much she enjoyed their illness. Huh? Sounds like something to ponder to me.
  15. Good luck tomorrow. It just burns my butt this has to be so hard on families just trying to get healthy!
  16. We went through years of psych meds before pandas dx in early 2010. My dd13 is soooo much better now after the pandas treatment. My dh never saw things the way I did and that was hard because it was not fulfilling to discuss it with him. That void was filled by friendships like made here. Here is the bottom line...he never got in my way of obtaining treatment for her. He wasn't doing research or anything like that but he didn't get in my way. And when I asked for $15k for IVIG in Chicago in 2010, he sat in on the phone consult and said ok. Did he want more of a guarantee? Of course!
  17. This doctor's comments are RIDICULOUS!! Parents should not be discouraged because this board is not littered daily with success stories. This is where parents and adults come for help. PANS is not a quick or easy fix. Parents move on from this place because their kids are well and managing life. You can search success or victory if you need reinforcement of your resolve. Keep searching and fighting until YOU are satisfied your child is the best they can be.
  18. http://www.newswise.com/articles/children-s-hospital-of-philadelphia-becomes-first-in-nation-to-disallow-use-of-dietary-supplements Here's the link about their stand on supplements. Jerks.
  19. Folks really need to stay away from hospitals if at all possible. They won't help you. If your child ends up in the hospital for a non-pans reason, use your judgment to keep from sharing as much pans related info as possible. I read on one of the FB pages that Lovely CHOP is coming out as the first hospital in the country formally against all vitamins and supplements because they are not FDA regulated. Thanks for nothing, once again CHOP! We pulled up next to a van last week with a CHOP sticker on the side of it with the motto "Give the gift of childhood". I was driving, starin
  20. Hi Karen, I emptied out. Catch me up! Jill
  21. Hi Nick12, You can definitely see improvements after 6 weeks. It is not uncommon to see a worsening of symptoms before improving. Dr. K refers to this as "flipping back of pages" like you are seeing the symptoms of the course of the child's illness in reverse like flipping the pages of their story. This can go on for up to 12 weeks. You should checkout his website at www.webpediatrics.com This is a tough journey. Perhaps if you feel comfortable sharing more of your child's story, folks can offer more comfort? Hang in there! Jill
  22. BTW, we recently did a neuroadrenal test through neuroscience and the findings have resulted in us trying GABA which seems to be getting us that last 5% that has been do elusive. Dr O ordered it for us.
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