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JAG10

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  1. Like
    JAG10 got a reaction from MissionMama in warning:vent! Horrified by school!   
    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.
  2. Like
    JAG10 got a reaction from MissionMama in warning:vent! Horrified by school!   
    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!
  3. Like
    JAG10 got a reaction from MissionMama in warning:vent! Horrified by school!   
    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.
  4. Like
    JAG10 got a reaction from mariamacko in Overgeneralizing ASD and CT tragedy   
    Diagnosing children has become so tricky in the past 10-15 years. All we thought we knew, well, we might not know after all. And some professionals are more willing to admit that than others. ASD has become the catch-all for anything neurologically atypical: ANYTHING. It really has become meaningless as a dx; except it gets you better coverage and services through insurance and schools. Ahhh, but now we shall add the stigma of the CT murderer into the mix. Oiye!
     
    ASD had become a palatable diagnosis for parents. I get this as this happens a lot with speech/language impairments as well. Young child, apprehensive parent....clearly more going on but we'll just go with speech for now because it isn't so intimidating; ok, whatever gets the parents on board so I can help this student. Often students are being diagnosed ASD very young and then that's it. Well, either ASD is a fluid diagnosis or was an incorrect diagnosis to begin with or some combination of both. I have no doubt when my dd13 was in the midst of the worst of PANDAS I could have gotten her diagnosed an Aspie. But as an SLP, I knew that was not what was going on and obtaining that diagnosis wasn't going to do anything for her, so she never had an ASD dx.
     
    Being a sociopath has nothing to do with ASD. Being more of a loner, difficulty expressing yourself under pressure, difficulty navigating the social landscape of life-yes, but not being a sociopath.
     
     
    Here's an article related to a fear simmering.....
     
    http://www.nationaljournal.com/politics/don-t-stigmatize-asperger-s-syndrome-in-wake-of-newtown-massacre-20121216
  5. Like
    JAG10 got a reaction from croatianmum in pandas can be cured only if it's treated early?   
    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.
  6. Like
    JAG10 got a reaction from Teri in Back from Children's Memorial...test results.   
    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.
  7. Like
    JAG10 got a reaction from philamom in Back from Children's Memorial...test results.   
    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.
  8. Like
    JAG10 reacted to peglem in My sweet boy is BREAKING MY HEART!   
    What I found over the years is that when a treatment began working, when healing began to take place, we started seeing SEs from medication we had been using to deal w/ symptoms. So, maybe this is a good sign?
  9. Like
    JAG10 reacted to beeskneesmommy in Ashwagandha   
    I have not given Ashwaganda to DS, but I have been using it myself, nightly, for a long time! It helps take the edge off for sleep. I have also tried GABA, at hlaf a dose in the morning, which made me uncomfortable and clammy to start, then mellowed me out, then cause extreme thirst and fatigue by the afternoon.
  10. Like
    JAG10 reacted to LNN in Ashwagandha   
    Dr M started DD on a supp a month ago to help with some insomnia and adrenal support and it contains ashwaganda as a significant ingredient. Her insomnia has improved a lot - but hard to say if it's the supplement or the fact that she learned to go to sleep without a night light and now that her eyes have nothing to look at, she gets bored and falls asleep quicker.
     
    I hope it works for you!
  11. Like
    JAG10 got a reaction from SSS in OCD/Glutamate/ Yasko fans   
    These are all on the list of recommendations from neuroscience. We tried the PharmaNac and I didn't notice a big difference. It was hard to get her to drink it, so I stopped. We will see if taking it in neuroscience's pill form combos for longer yeilds different results. We've never tried GABA or some of the other recommendations. We see O'Hara tomorrow for both girls' check-up and I'll let you know what she has to say!
  12. Like
    JAG10 got a reaction from JuliaFaith in Gotta share   
    I have a couple topics up about elevated titers and annual early Aug strep, but have to share good news that has me floating on a cloud.....
     
    My dd13 is at sleep away camp for the first time for 3 weeks, which is a miracle,I never could have imagined a few short years ago. For those of you who don't know the sleep away camp drill, no cell phones, only letters and my darling is not a fan of the written word. I did get a letter from her counselor that pointed out she is their model camper for tick protection which made me lol. These camps have photographers that post hundreds of pictures daily and that is your view into their world. Besides the posed cabin/group shots, my girl has been scarce!
     
    I've been writing her daily to try new things... Today I was elated to see pictures of my girl on a ZIPLINE!!!!! There were pictures of her climbing this tree that seemed to go up to the clouds, one with a big smile and green paint on her face from color day looking down over the platform and zoooooommmminnnnng down the ZIPLINE!!
     
    I'm so proud of her!!! I can only imagine the anxiety she had to overcome; she's very cautious, hates rollercoasters. God bless her soul! YAY!
  13. Like
    JAG10 reacted to Dedee in Not over: part 2   
    The first thing that jumps out at me is the low GABA and high Glutamate. This is a big issue for many PANS children and we have seen good results by working on getting this back in balance with our daughter. The following is an explanation on GABA / Glutamate balance and it's importance. Sorry it is so long. I did a cut and paste and didn't want to leave out any helpful parts:
     
    "Glutamate is the main excitatory neurotransmitter in the body. It is essential for learning and short and long-term memory. Glutamate is also the precursor to our primary inhibitory or calming neurotransmitter, GABA. GABA damps the propagation of sounds so that a distinction can be made between the onset of sound and a background noise. Many other physiologic processes require a balance between glutamate and GABA, which is usually easy to achieve as glutamate, glutamine, alpha-ketoglutarate, and GABA can be interconverted via the enzymes depicted above.
    Genomic defects, viral illness, and heavy metals will compromise this balance, leading to excess glutamate, insufficient GABA, excitotoxicity, and eventual neuron loss. Viral infection (individuals with Methyl Cycle defects cannot defend well against viral infection) can lead to antibodies against the vitamin B6 dependent enzyme glutamate decarboxylase (GAD), blocking GABA production (this is felt to occur in the pancreas in kids with juvenile onset diabetes). Aluminum poisons this enzyme as well. Excessive alpha-ketoglutarate generated due to the CBS up regulation can be converted into glutamate, but in the presence of lead and aluminum, the glutamate so created cannot be converted into GABA, glutamine, or back to alpha-ketoglutarate. The result is glutamate-GABA imbalance, agitated behavior, and eventually nerve loss.
    Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation. Glutamate excess does the same and also wastes glutathione and increases levels of TNF-alpha, an inflammatory mediator that can produce heart cell dysfunction and gut inflammation.
    You can restore glutamate-GABA balance by:
    1. Addressing CBS up regulation/BHMT down regulations to decrease alpha-ketoglutarate production.
    2. Decreasing intake of food precursors of glutamate
    3. Supplementing with GABA
    4. Copper inhibits conversion of glutamate to GABA by glutamate decarboxylase so avoid copper excess, or better stated, an imbalance between copper and zinc.
    5. Calcium is involved in glutamate toxicity, so supplement with magnesium to keep calcium in check."
     
    Hope this was helpful - Dedee
  14. Like
    JAG10 reacted to SSS in Not over: part 2   
    The vitamin C nearly always shows low on everyone- it is a water soluble vitamin that passes quickly through the body-
    nurse from Great Plains told me that once.
     
    Okay - this next bit, almost embarrassed to suggest, you are such a smart old timer, but when you keep saying the strep titers are so high, and keep staying high:
    You've had every member of your family checked, right?
    And do you remember the gal who came on here and said her DOG was carrying strep?
    Little .02 cents.
  15. Like
    JAG10 reacted to JoyBop in Gotta share   
    It sounds like she is in a wonderful place! So glad she is having such a successful and exciting time at camp! It gives us all hope.
  16. Like
    JAG10 reacted to peglem in Gotta share   
    Wow, what a wonderful, precious moment!
  17. Like
    JAG10 reacted to 3boysmom in Gotta share   
    Hi Jag, been hanging around this forum with you for a while now. We have always seemed to be in similar circumstances with our kids...
     
    DS13 just got back from a week of camp and did great (probably the only kid that packed 20 pairs of underwear and smuggled in a few rolls of toilet paper ... In case the camp ran out). BUT went and WANTED to go. I was a nervous wreck that whole week so you are braver than me doing 3!! It's been a long road....so happy for you both!
     
    Linda
  18. Like
    JAG10 reacted to lynn in Gotta share   
    DS17 just got back from 3 weeks of camp in South Dakota, a long and anxious (for me) way from NY. Usually when he is away for this long, the first week we get no communication except terse texts like, "Yes, I'm having fun. I can't talk, I'm busy." By the end of the 2nd week we start to see increasingly more complaints about others at the camp and by week three it is usually that he has some horrible malady (usually yeast related due to excessive ice cream consumption.) But this year it was different. Weekends were spent at a working, organic/holistic farm where he helped walk the goats (not clear exactly, but I'm just the reporter) and made scrambled eggs with eggs "right out from under the chicken's butt". DS (and his Mom) are city persons and DS has never lived anywhere out of the sound of the subway, so I think it was a revelation for him about other ways of living and other kinds of success. In any case, my point is that even though it is anxiety producing to send them away, they often come back with really good insights and helpful new experiences (and yeast infections!)
  19. Like
    JAG10 reacted to LNN in Gotta share   
    :) :) :)
    You rock, warrior mom - and so does your DD!
  20. Like
    JAG10 got a reaction from momcap in Gotta share   
    I have a couple topics up about elevated titers and annual early Aug strep, but have to share good news that has me floating on a cloud.....
     
    My dd13 is at sleep away camp for the first time for 3 weeks, which is a miracle,I never could have imagined a few short years ago. For those of you who don't know the sleep away camp drill, no cell phones, only letters and my darling is not a fan of the written word. I did get a letter from her counselor that pointed out she is their model camper for tick protection which made me lol. These camps have photographers that post hundreds of pictures daily and that is your view into their world. Besides the posed cabin/group shots, my girl has been scarce!
     
    I've been writing her daily to try new things... Today I was elated to see pictures of my girl on a ZIPLINE!!!!! There were pictures of her climbing this tree that seemed to go up to the clouds, one with a big smile and green paint on her face from color day looking down over the platform and zoooooommmminnnnng down the ZIPLINE!!
     
    I'm so proud of her!!! I can only imagine the anxiety she had to overcome; she's very cautious, hates rollercoasters. God bless her soul! YAY!
  21. Like
    JAG10 got a reaction from SSS in Gotta share   
    I have a couple topics up about elevated titers and annual early Aug strep, but have to share good news that has me floating on a cloud.....
     
    My dd13 is at sleep away camp for the first time for 3 weeks, which is a miracle,I never could have imagined a few short years ago. For those of you who don't know the sleep away camp drill, no cell phones, only letters and my darling is not a fan of the written word. I did get a letter from her counselor that pointed out she is their model camper for tick protection which made me lol. These camps have photographers that post hundreds of pictures daily and that is your view into their world. Besides the posed cabin/group shots, my girl has been scarce!
     
    I've been writing her daily to try new things... Today I was elated to see pictures of my girl on a ZIPLINE!!!!! There were pictures of her climbing this tree that seemed to go up to the clouds, one with a big smile and green paint on her face from color day looking down over the platform and zoooooommmminnnnng down the ZIPLINE!!
     
    I'm so proud of her!!! I can only imagine the anxiety she had to overcome; she's very cautious, hates rollercoasters. God bless her soul! YAY!
  22. Like
    JAG10 got a reaction from Kathy4Him in Dr. Elia   
    Christian Mom, that is a horrible experience and you paid top coin for the privilege.
     
    I have very mixed feelings about Dr. Elia. After many years on psych meds., I took my dd13 who was 9 at the time, to her for a second opinion. I had heard of and read the sound bites about pandas, but my girl had no history of strep. After evaluating her, Elia made a list of recommendations, last on the list (after get her an H1N1 vaccine) was ASO and anti-DNAse B titers. She raised (but minimized) the possibility of a "bug involvement" so much, I waited 3 months to do the blood work. Her titers came back over the lab's ceiling they were so high.
     
    In the meantime, we were trying the SSRI "low and slow" approach with one of her fellows and CBT across the street at UPenn....neither of which helped a fig. I was so hopeful and excited to show Elia the lab results....she brushed it off and said she had been sick too long. Part of me says...What the heck did you order the test for then, but the rational part of me is so grateful she did. Once I knew what I was dealing with, I ran people over getting my girl to doctors who would be willing to help her and those doctors saved her life and my family's collective well being-after years of treatment.
     
    I have since twice emailed Dr. Elia about my daughter's recovery and how these children with long standing, misdiagnosed pandas can recover, get off all psychmeds and lead the lives God intended them to lead. I thought, perhaps I could encourage Elia to take more risks, after all...I wasn't asking her for anything. She never responded, not even a smiley face. I know she was at the pandas pow-wow in 2010, perhaps invited in hopes to make headway with CHOP. When I mention Dr. Cunningham's research panel/study, she had never heard of it or Dr. Cunningham and said you don't have to "pay" to be part of a research study, so it wasn't legitimate. At that time, she was definitely not completely "in the know." I didn't find her to be a leading "expert" (many, many parents here had her way beat in that regard) but she knew some and the some she did know helped us get on the right track. I'm very conflicted, but probably more peaved than grateful. If we didn't have the resources to plow past CHOP, her lack of action would have been devastating to my daughter's life.
     
    I'm resentful of these doctors who portray themselves as "treating pandas" and then end up harming the child with erroneous information that is out of date or self-serving. I truly think it is a sin that they will some day have to answer for.
     
    Kerry- You have a pandas friendly team in place. I think you would be barking up the wrong tree with Elia.
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