JAG10

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.

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 sympathetic ear for. Points of kinship would be tenacity, bucking mainstream medicine and all its rules, doctorate of Google school of medicine (pre-google: he had to read the paper version of the Lancet) and the right to fight for your own health (or your kid's). It is provocative and Matthew McConaughey is terrific!

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 where they receive service. My experience with that slippery term "progress" is that a student can be making progress, but still behind their peers. The peers will be making progress at a quicker pace and the gap widens, but he might still be in that "normal range" for awhile. If the school is claiming your child is making progress, but you don't agree, ask to see the progress monitoring data. Examine it carefully. Just like most statistics, this can be easily manipulated if that is the intention. All of this technical, in the weeds jargon, but know this: if you make a big enough stink you will get your child an IEP even if all they can come up with is a time on task goal. A Due Process hearing costs $15k for a district and even if the arbitrator completely agrees with the school, they always throw the parent a bone of something. It's usually not until parents are asking for approved private school tuition or a One on one aide that a school will go to due process because those things cost more than $15K. The papers are only as good as those who are implementing them and how their style matches with your student. It is a gifted special educator who excels at both behavior management and academic instruction. They are golden!

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.

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 underlying medical etiology, all the alphabet soup of symptoms subside and the child functions neurotypically. That's what happened with my dd. I never blamed her school when she was sick and struggling and I didn't credit them with the miraculous gains she made when we got her well like when she went from the 10%ile in math in 3rd grade to the 93%ile in math in 6th. Neither were the school's fault nor glory; it was simply a reflection of her brain health. Teachers are not mental health providers; they are teachers. I don't even think mental health providers can help these kids when they are sick; there's too much static in their brains. They need medical intervention to make notable, meaningful, long-lasting gains. I was never denied any support for my child, but I didn't ask for my dd to have her own one on one teacher. I know you are not asking for that either, but that is what I provided my child every evening and that's what she would have needed if I didn't take on that burden. Otherwise, even with an aide she wouldn't have learned enough over all those years she was sick not to be academically devastated. Each kid is different. That might not be your child's circumstance. I don't know what to say about the disparity among school districts, money probably. The district where I work is in the Philadelphia suburbs, among the wealthiest in the country. Almost 20% of students have either an IEP or 504 plan...that's a lot. So much so, like I mentioned previously, we have been flagged by the state for identifying too many students with needs in the past. And we are not the only ones. This is why the RTI initiative was launched nationally dictating that schools MUST demonstrate a longitudinal series of general education interventions with documented responses and NO response before special education can be considered. Perhaps if you live in an area where the incidence rates are lower and less than 10% of students need spec ed, then they roll out the red carpet for you, I don't know. My district has close to 30 children per kindergarten class because we spend so much money on special education. You are damned if you do and damned if you don't. And there are always consequences to whatever decision is made.

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 dollars and a boatload of tenacity. With ALL of that comes so much frustration and anger that can be yet another drain on us parents. Let us make sure that we keep all of this in perspective in terms of what the schools are capable of doing for our children. Doctors can ignore us or shuffle us along or refuse to treat, but the schools can't do that. I just wonder if sometimes, maybe not you Joybop, but sometimes parents direct anger and frustration in the school's direction because they are the only ones who can't turn us away and by law have to manage the results of medicine's failure to do THEIR job.

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 without advocates, their are parameters to the special education system. If you have a child that is frequently fluctuating in executive functioning like our kids can do, and is an average to above average kid, you might be more likely to find yourself frustrated with the way the system operates. Every parent has to make their own decisions. I advocated when I thought it was necessary and when I thought it would yield meaningful change. The rest of my energy I put into working with my dd because I knew, bottom line, nobody cared about her education more than I did. Ok, I'm not looking to fight. Raw nerves struck I'm sensing. Remember, I'm one of you. I've been there too. I've seen this from both sides and I'm just saying you will save yourself much wear and tear on your soul if you have a tempered barometer of when to fight, when to advocate and when pour that energy into your child. I respect all of you and your decisions. And I wish this was easier for each of us. Schools have an obligation to partner with us. So do our doctors; please don't let them off the hook!

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 continues like this, eventually he will be and he will qualify for academic services. The psychoeducational testing is one on one; it's not done in a group setting obviously. So if he can perform one on one, he likely won't qualify. The psych may make note of how often she had to redirect him or how many breaks he needed. You can see where this is going, right? The psych then makes recommendations for frequent breaks, redirect student to task, ect. as part of the 504 service agreement. But if he comes out within the average range, which does not mean ON grade level because it's a range, he will have an OHI diagnosis and a 504 plan. Students are not given special education based on what's going to happen. They have to have a discrepancy....not just behaviors that are eventually going to lead to a discrepancy. This is why I chimed in with my specific experience because this was my dd: bright, got concepts and completed tasks with one on one help to stay on task, but couldn't complete work independently, follow group directions, sit still, ect. I remember when she was in the worst of it, she would get distracted within a math problem, forget about doing one problem after another! Like Joybop's ds, she was not an overt behavior problem like raging or panic attacks, but wasn't able to complete one task after another like her peers. And this does result in social difficulties too:( Parents and teachers become very frustrated because a student actually has to BE years behind to qualify for special education services: an IEP with specially designed instruction and goals. 504 plans say yes there is a disability, but the student does not meet criteria for specially designed instruction. But everyone can see the writing on the wall.....if he doesn't get help NOW, he WILL be years behind! They will see if he qualifies for general education supports first, like the reading specialist or Title 1 Math support (don't need an IEP for those-they're general ed) Yep. I share your frustration which is why I did the work with my dd every night even after helping other people's children all day long. I'm just saying, I know the system inside out, know my child's rights, she does not attend school where I work, and I knew- either I help her nightly or hire someone to do that, or wait and watch her tank and then get her academic services through school. Joybop, I'm not here to upset you. Your beginning post expressed frustration in not getting services WHILE the testing is occurring, the next 60 days, but that could just be the beginning of it. That's why I said I've seen families have more success with obtaining a TSS through Medicaid because it is behaviorally/medically related service. Chemar, we have many, many parents that are very pleased with their children's education and services. Your son's circumstances and Joybop's are not the same though which is why comparing outcomes is problematic. One piece of advice I would give parents of young children... It is MUCH easier to transition into school-age services with an IEP established through early intervention. Do not let those services expire or think I'll wait until K. I'm so upset, I have two cases now where the children received early intervention for 3 years and let the IEPs expire thinking they would just start hem up again in K. I was able to lobby for speech/Lang support, but no academic support because "we haven't given them enough time." Ugh! If your language is that of a 3yo after receiving 3 years of intervention, what do you think will happen academically? I know, more writing on the wall. Grrr.

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 because those are the very people imposing the pressure they get from on high down on the building-level people conducting the evaluations and determining what resources are appropriate. So by making your name and child's situation known to those special ed supervisors and directors, you take the pressure off the psychologist who is the frontline gatekeeper. I will also mention respectfully, falling 2-3 months behind is not what special education is for. The rule of thumb is two years below grade level is eligibility criteria for specially designed instruction. Most districts are also under enormous financial pressure. They don't just have a team of aides hanging around waiting to assign when a student is having trouble. Having a 1:1 aide for a student is very difficult to obtain and is considered very restrictive. You would likely have more luck and control getting a TSS 1:1 for your child through Medicaid. If your child is deemed needy enough, they might also give you TSS hours outside of school. Mind you, none of these aides are academic aides. They are there to redirect the child to stay on task, more executive functioning help than cognitive. I read about parents who are hurt and shocked all too frequently with regards to getting help for their children. You have to do what is in your child's best interest. I'm on both sides of this situation. I'm part of the IEP evaluation team and delivery speech/Lang services. I also have a daughter who when she was sick with pandas, got very little out of school because her executive functioning was so impaired. 2nd through 5th grade, she went to school during the day while I went to work with children with disabilities. Then we came home late afternoon and I basically homeschooled her utilizing whatever work she didn't complete that day plus her homework. It was the only way I could be sure she was learning. It was completely exhausting. We utilized summers to make up ground as well. From my point of view, I was keeping her afloat until I could get her well which took until the end of 6th grade. My daughter did get some resource help at school, but it was nothing compared to what we did at home. Special education is generally considered for students who are two years below grade level. I did everything I could to keep that from happening, not because of stigma, but because that's a lot of ground to make up and it only gets harder and harder. My daughter is now an 8th grader. She receives no accommodations. Last year, she took double math so she could be in Algebra. She loves the STEM subjects. Writing organization and mechanics, grammar and editing are still challenging, but improving. I know this is so hard! Fight for your child, work with the school and do what you can at home.

Anyone use this on a regular basis?

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

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 children need to be healthy.

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.

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 clear, her vocabulary so robust, her behavior so...typical. How could I not notice and ask myself...what is this all about and how do I get more of it???? The reason I mention this to some parents of children with autism is because I want them to think about it (and perhaps get chills like 3bmom) and ask themselves, now why would that happen and not just shrug it off. Some people speculate that ALL autism is some combination of assault on the immune system and resulting degrees of dysfunction. I hope they are right. If it was my kid and I saw anything that resulted in my child speaking for the first time or a marked improvement in their behavior, anything at all that let me know better was possible....I'd keep looking until I was convinced otherwise. That's why I mentioned rolling them in poison ivy so they would be prescribed steroids.....how do they respond?

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.

Good luck tomorrow. It just burns my butt this has to be so hard on families just trying to get healthy!

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! Don't we all? We've spent a ton of money and that has probably been the hardest for him to swallow, but he knows me and my mama bear side well enough to know nothing was going to get in my way. And I'm ok with that and we respect each other. He doesn't have to be as committed or convinced, but stand down when push comes to shove.

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.

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.

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, staring out my side window with a feeling of disgust inside, but i said nothing. Then I hear my younger girl behind me say "I hate CHOP." How dare they be so committed to everyone else's children but ours!!!!!!! How dare they!?!? I am so grateful and thankful to the Lord for my girls' health! We tried it "their" way, conventional medicine, dutifully trying one drug after another. IT DOESN'T WORK! If it did, we wouldn't be here. I thank God for the tenacity to keep pursuing effective treatment solutions and the handful of docs who are bold, brilliant and helpful.

Terrific!! Best wishes on the T&A!!

Any news?

Hi Karen, I emptied out. Catch me up! Jill

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

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.