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JAG10

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Posts 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 cluster of symptoms that used to have a firm age by which onset needed to occur. That has softened over time, maybe not by the DSM IV, but in practice physicians and psychologists are throwing that label around quite freely.

     

    I wonder if the target audience for the website is those not of new onset? Dr. Cunningham's 1000 subjects would be more skewed toward chronic, staler cases, don't you think? I'm only speaking of my own child's experience... that those ASD-like characteristics did not surface until she had been sick for quite some time. My other dd9, also pandas, was treated much younger, sooner and has never exhibited ASD characteristics.

     

    I think we can agree that the mentioning of ASD-like behaviors has its place within the PANS/pandas community as well as those things associated with it like Dr. Cunningham's research and test, but that it needs some context that the quote did not provide and that ASD characteristics are not of slogan prominence.

  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. I'm sorry you're in this spot. We too are back on the roller coaster with DS, but the only difference is that I expected it. He stopped abx over the summer because he'd been symptom free for lyme for awhile and conventional protocol is to then stop abx and see what happens. As expected, he tanked because lyme that had been in films/cysts came out. So now we're back to knocking it down.

     

    The way I've stopped myself from sliding into despair is that I see my son as a renovation. I think when he was little, he had an immune risk because he was zinc/B6 deficient (genetic - pyroluria). When he got sick, his immune system would misbehave a little. And a little worse each time. Then he contracted lyme that went undiagnosed. Then he got strep and it was the tipping point, crashing his system and letting the misbehaving immune system riot in the streets.

     

    From there, we've had to work backwards. First we had to discipline the immune system, which any parent knows, doesn't happen overnight. It's a long series of corrective actions. As we've done this, we've uncovered foundational issues - like the pyroluria and yesterday, an eye coordination problem. Talk about a money-suck and emotional energy suck. The poor kid feels like he's never going to get well. "Why me" has moved into the house big time this week. But each layer that gets fixed makes it easier to find the remaining problems and fix them.

     

    So back to the renovation analogy, it's like you walk into the basement and find a foot of water. Everything is ruined. So you have to drain the water, then remove the debris and ruined storage boxes, then you have to fix the most obvious leak. Then you wait until the next storm and then discover there's another leak that you didn't see the first time. But each time, the leaks are smaller, because you already addressed the bigger, more obvious leaks. And you're on alert, so you check the basement sooner and less water accumulates. This is a long haul. And each kid's root issues can be different. So it takes a long time. But finding the smaller leaks isn't a set back. It's actually another step forward, because it gives you the chance to make your repairs that much more complete.

     

    Probably sounds more rosey than you're in the mood for, but that's how I'm keeping myself going these days.

     

    I do so love my analogy queen!!! :wub:

     

    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 for example; then there is the dose...too much can be a problem too and....guess what? You're right, too much can look behaviorally identical to too little! So it is through much trial and error that these discovers are learned. There are no all-in-one PANS/PANDAS plumbers YET. There are copper specialist and PVC specialist and I'm running low on my plumber knowledge, but you get my point. Certainly, we can't go to Home Depot and pick-up a do-it-yourself plumbing manual. We are all tinkering the old fashion way with the most informed knowledge we can get our hands on and wrap our brains around.

     

    I said the other day.....I'm not sure if puberty helps "right the immune system" or if it just takes us each that long to figure out how to fix all of our kid's specific leaks.

  4. 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 evaluation, which kiddos I can really help and which kids are fighting a current so strong neurologically that only medical intervention will be their significant key and I'm just dancing as fast as I can to help keep them afloat.

     

    What I've heard is that vision therapy can show similar improvement to computerized programs like FastForward for focus or any of the other brain-based software. Some moderate gains are sustained with successive use. Stop the program or therapy and the gains vanish, but there is no corrective improvement.

  5. 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 strategy will become integrated.

     

    My personal opinion is that deducting points for spelling (outside of a final draft) is petty and is in no way reflective of quality learning. I would suggest that the teacher needs to provide your daughter with compensatory strategies for spelling to be freely utilized or, better yet, get over it outside of final drafts.

     

    Jill

  6. 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 chronological age? What about if a girl has begun menses? Both girls had normal/average zinc levels and were ruled out for Wilson's. I computed their ratios before, but can't recall at the moment.

     

    Also, anyone who has been at this for awhile.......have you noticed how the reference ranges for anti-DNAse B have changed over the past 3 years? The lower limit of normal with Quest used to be around 175, now it is about 375. I have no idea how these things are determined, but I wonder who else is running anti-DNAse B titers besides those who run in these circles and it seems odd to me 375 is the "new normal".......kinda like me convincing myself 42 is the new 28 ;)

    The reference ranges for C3D have also changed considerably. Used to be 0-8, now it is 0-25. My dd12 ran 27 I believe, which was clearly out of whack a few years ago and much closer by recent ranges. Did she improve? Who knows!

     

    There are so many variables. I read a post by P.Mom on the Pepsi FB page discussing her son's IgG which had improved from the 500s to the 900s. When I look at my two girls' IgG, lower normal for dd9 is upper 600's and she runs lower 600's but dd12's lower normal is lower 900's and she runs upper 800's with no IVIG in her system. So I could say my older dd's has improved a few hundred points with puberty, but both girls proportionately run 50-75 points below the normal limits for their age range. All that being said.....my older dd12 is responding to illness in a more typical fashion the further into puberty she is. Where she used to flare from many triggers, she seems to be closing the loop only reacting to strep if not protected by abx. (P.Mom- I hope you don't mind that I shared that from the other site, I'm thrilled your son is so healthy; my prayer for all of our kids!)

  7. 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 jazzed up about them being low in copper.

     

    Dr. T said something about copper and histamine before....I'd love to know his thoughts on low copper and if supplementing does any good. They haven't been tested since I started the copper supplement.

     

    Jill

  8. 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 row like that, to the day, is one long virus related to Malaria, but I don't know if that is true.

     

    I know my girls have both gotten strep 3 years now between the first and second weeks of August. We don't get strep all the time, so it sticks out in my mind. I think allergies do play a significant role as well. I've had friends complain about fuzzy thinking and poor word retrieval lately which could be related to the increased workload of "back to school" but could also be related to allergies.

    The thought of a virus hanging out in your body for 3 years just waiting for the right day to impose its will on you gives me the creeps.

  9. 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. :wub:

     

    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. My younger dd9 is mild and we have managed with abx and a steroid taper or two. Her IgG is on the low side, low 600's when the bottom of normal range should be high 600's. Dr. B said not to use her IgG level as a measure of her health.

     

    Jill

  10. 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 grandparents on both sides of family)
    • Stroke (gratefully spared)
    • Anorexia
    • PANDAS/PANS???????

    So, it's basically an antiviral and it can be combined with Zithromax to treat LYME. I'm totally intrigued and would like to hear any stories related to Amantadine. Are there any down sides to trying it? Trg girl....is your child still on it and is it still successful?

    Thanks-Jill

  11. 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.

  12. 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 measure it than darn it measuring is what we are going to do whether you want it or not!?!?!

     

    Kiss of death phrase...."clinical diagnosis."

     

    The mother came by this afternoon and told me the police and paramedics were going on and on about how I was going against medical advice while they were waiting for me to get there. Unfortunate for them, they didn't know I've been through pandas and that doesn't bother me in the least.....in fact, that's usually a good sign.

  13. I gotta go. I have bags under my eyes and a bit of sagging. I am calling the ambulance for the trauma team. Maybe I'll get some plastic surgery thrown in under the diagnostic code of PTSD.

     

    :lol: :lol: :lol: :lol:

     

    Well, I reckon we might as well have some "wrinkly" to go along with Jill's tale of "irony." :P

     

     

    I love you guys.....wrinkle...iron; teehee!!!!

  14. 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 platform onto the steps, she lost her footing and fell down 12 steps.....on her rear end. In the process, she got a cut between her 2nd and 3rd toe. Many of you may be thinking "aww, poor kid" at this point. What followed was UNBELIEVABLE.

     

    The foot was bleeding and there happened to be a doctor at the pool club, but he doesn't work there. He looks at her foot and says she will probably need stitches, call an ambulance. Really??? Call an ambulance? The lifeguards call the ambulance, the mother calls me. Nobody wants to be responsible for someone else's child when they get hurt, I try to reassure her. She called me around 5:45 with a calm but serious tone to explain what happened. She tells me they've called an ambulance. My main question is of course...Did she hit her head? Thankfully, no she did not. Once I had the answer to that question I was Mrs. Cucumber. BUT everyone else was not. I understand why four 9 year old girls overreact and cry. I understand why the mom in charge is freaked out, but that is not what I'm talking about. As I'm on the phone with the other mom, the ambulance arrives and the police. I tell the mom I don't want her to go in the ambulance. The police get on the phone with me and try to convince me. I still say NO, I'll be there in 20 minutes. The police are uneasy that in Friday traffic it will take me longer to get there. Okay....25 minutes, who cares?

     

    When we get to the pool, my dd is in the ambulance, strapped to a backboard with a neck brace. The little girls are in a circle sobbing by the entrance and the mother is in the ambulance with my dd and the paramedics. I can see my thought of throwing her in the car to go get stitches isn't going to happen. Now, I'll admit, my dd9 can be quite dramatic and her anxiety about injury can be intense, but adults should be able to weed that out. She did stand up and hobble to a chair after the fall on her butt after all. The paramedics tell me the backboard and neck brace are because she said her bottom hurt. Fine, overreaction, but fine. I hop in the ambulance and dh and dd12 follow in our van. The paramedic, who was very good with my dd, missed her calling as a comedian. She was very quick and witty, so I never knew when to take her seriously. She said when we got to the hospital not to get overwhelmed because there would be a lot of people in the room.....

     

    We arrive at the hospital and the paramedics wheel her gurney in......my jaw hit the floor. There were literally 20 doctors and nurses standing in a circle waiting for her....the trauma team. This man in a suit comes over to comfort me. I asked him....oh, is this a teaching exercise? No, mom this is the trauma team to which I put my hand over my mouth to hide my shock, then laughing. I can't even see her anymore there are so many people around her as they cut her bikini off her body....not really necessary since it's just strings, but whatever. Man in suit keeps following me around asking me if I'm okay or if I need anything. I keep thinking he's going to try and sell me furniture or something. He's a young CHAPLAIN!!!!

     

    I did have that uncomfortable feeling surface when the questions started coming from every specialty about current medications and conditions....okay, here we go. None of them led on they knew what PANS (the condition formally known as PANDAS) was, but they get strep and antibiotics and auto-immune/mild immune deficiency. Well, then they go to draw blood from dd9 (who up until this point was completely charming the pants off everyone she interacted with) and she SCREAMS so loud and so relentlessly as I stand there and look a little embarrassed. Then I turn to the group of doctors and say....you can see she has some anxiety at times and smile meekly. The only trauma in the trauma room was the drama coming from dd9 about the blood draw!

     

    Slowly our trauma team fades to a few nurses who transfer us to the regular ER suites. She gets 6 different x-rays, all negative. They do decide she needs two stitches in her foot. They've learned though and give her twilight meds through her IV to avoid the drama. They also give her IV antibiotics just to be safe since she has mild immune deficiencies/PANS, they don't want to take any chances which I appreciated. We left the hospital at midnight exhausted.

     

    I can't even imagine what last night cost. I have to follow-up with a plastic surgeon on the foot in 7 days. If I had been at the pool when it happened, I would have thrown her in the car and she would have gotten her couple of stitches, but I doubt all the x-rays, backboards, neck braces, oxygen..... or chaplain. They must have thought I was the most casual, nonchalant parent they had ever met. But all I kept thinking was about all of us......we've been to h*ll and back, dark moments when we've wondered if we would ever get our children back, if the madness would ever end. We've been laughed at, eye rolled at and our own mental health questioned AND we've had to wait months for the privilege. Where was the trauma team of specialists then? Where was the chaplain?? They were all on standby waiting for the girl with the stubbed toe :wacko:

     

    I should have felt grateful she received such a thorough examination, but I honestly felt twinges of resentment that something like this was taken so seriously with no regard for cost and we have all had to fight alone, with little support and pay out of pocket for true trauma that will not be healed in 10-14 days. And we get treated like crazy people!

  15. 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 your full plate. There is no shortage of hysterical movies that deal with women moving on beyond relationships. It's okay to laugh and give yourself a break from the seriousness of it all. Remember what we are told in airplanes.... You must first secure your own mask before assisting others.

     

    Prayers said for many opening windows to follow these closing doors.

  16. 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 here) but to not even be able to explain what is happening in a rudimentary way that is agreed upon by all left me feeling deflated.

  17. 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

  18. 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 utilize extended time consistently.

     

     

    I think the key is to have an educational paper trail of accommodation use tagged to one of the educationally defined disability categories. There are 14 and one is OHI; other health impaired (commonly used for ADHD) This info isn't going to help those of you on top of taking the SAT, but those with younger children need to think in terms of working the system as it exists now and try to avoid introducing the diagnosis of cause of symptoms, but rather the diagnosis reflective of symptoms.

  19. 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. Sooooo, in my girl's case, it was definitely the Bactrim. Lots of folks here have had great, great success with Bactrim. I think it's worth trying. And like I mentioned, her liver quickly recovered from its poor reaction to Bactrim. But, especially if these headaches persist, be sure to check his liver in 3-4 weeks, I wouldn't let it go much longer than that without running liver labs to be sure.

     

    Best of luck!Jill

  20. 1344797298[/url]' post='144458']
    1343992915[/url]' post='143957']

    Nancy,

    So grateful to you for sharing your notes and knowledge!

    My girls have been doing well behaviorally. DD12 is now 14 weeks past her last IVIG. This histamine conversation caught my eye. Both girls and myself- we are covered in bug bites again. I don't think it's just Mosquitos either; some result in wide, flat reactions while others are more focal and intense. We are not out at dusk yet we are covered. My older girl who had the OCD with scratching then picking has been very responsible and diligent about taking care of each bite early so they don't get to a point where they scab. Sorry, kinda gross info.

    Alright, so bug bites are a histaminic response and all 3 of us respond to a much greater degree than normal. Does anybody know where this whole H1/H2 receptor conversation fits in with focal, cutaneous reactions? As far as I can tell, we do not suffer from systemic allergies; maybe a little when the pollen count is really high, like over 10 but that is really nothing compared to so many sufferers. I just really think the way we respond to insect bites is weird. And dousing them in deet everyday for months is not an option. Any ideas if this fits in anywhere??? Anyone?

    Can't wait to read more info on the conference as well. Any news about Dr. Cunningham's lab?

    Jill

     

    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!

  21. 1344797298[/url]' post='144458']
    1343992915[/url]' post='143957']

    Nancy,

    So grateful to you for sharing your notes and knowledge!

    My girls have been doing well behaviorally. DD12 is now 14 weeks past her last IVIG. This histamine conversation caught my eye. Both girls and myself- we are covered in bug bites again. I don't think it's just Mosquitos either; some result in wide, flat reactions while others are more focal and intense. We are not out at dusk yet we are covered. My older girl who had the OCD with scratching then picking has been very responsible and diligent about taking care of each bite early so they don't get to a point where they scab. Sorry, kinda gross info.

    Alright, so bug bites are a histaminic response and all 3 of us respond to a much greater degree than normal. Does anybody know where this whole H1/H2 receptor conversation fits in with focal, cutaneous reactions? As far as I can tell, we do not suffer from systemic allergies; maybe a little when the pollen count is really high, like over 10 but that is really nothing compared to so many sufferers. I just really think the way we respond to insect bites is weird. And dousing them in deet everyday for months is not an option. Any ideas if this fits in anywhere??? Anyone?

    Can't wait to read more info on the conference as well. Any news about Dr. Cunningham's lab?

    Jill

     

    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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