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JAG10

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Everything posted by JAG10

  1. Wilma, I posted this on your pimples/bactrim thread on the lyme board, but here it is again just in case... My dd11 was on Bactrim for the past 4 weeks. There were no behavioral changes or stretch marks or rashes. She has had acne since taking different abx since 2/10. She uses a sodium sulfacetamide cleanser which has been very effective. However, since beginning the Bactrim she has had significant acne into her hairline on the scalp, I would say about 2-3 inches back from the hairline, where the babyhair is into the scalp. She has bangs so this area is not exposed to the sun. We have stopped all medications/abx as my dd's liver enzymes were insanely high, AST-346, ALT-729. I can't say whether it is the zith, the Bactrim or the ibuprofen or the combo that is responsible for this stress on her liver. Dr. B will monitor this in your dd via a chem panel which is the clinically responsible thing to do. I think it is important to share that my girl had no significant symptoms her liver was unhappy: some mild, fleeting nausea and simultaneous headaches, which is nothing compared to many of thecsymptoms being shared. So keeping up on these labs, especially when so many of the kids are taking 2, 3, 4 abx at a time...it's important. I genuinely believe my dd's next labs in a couple weeks will be much better; I'm so glad Dr. B checked. BTW, It has now been 6 days since dd11 stopped the Bactrim and her skin has cleared up beautifully. Jill
  2. My dd11 was on Bactrim for the past 4 weeks. There were no behavioral changes or stretch marks or rashes. She has had acne since taking different abx since 2/10. She uses a sodium sulfacetamide cleanser which has been very effective. However, since beginning the Bactrim she has had significant acne into her hairline on the scalp, I would say about 2-3 inches back from the hairline, where the babyhair is into the scalp. She has bangs so this area is not exposed to the sun. We have stopped all medications/abx as my dd's liver enzymes were insanely high, AST-346, ALT-729. I can't say whether it is the zith, the Bactrim or the ibuprofen or the combo that is responsible for this stress on her liver. Dr. B will monitor this in your dd via a chem panel which is the clinically responsible thing to do. I think it is important to share that my girl had no significant symptoms her liver was unhappy: some mild, fleeting nausea and simultaneous headaches, which is nothing compared to many of thecsymptoms being shared. So keeping up on these labs, especially when so many of the kids are taking 2, 3, 4 abx at a time...it's important. I genuinely believe my dd's next labs in a couple weeks will be much better; I'm so glad Dr. B checked.
  3. Thank you, Ladies, so much!. Kim, you summed it up much better than I did. I'm thinking of calling Monday, asking for lab work for dd7 for strep and perhaps mono, and then asking if we can switch her to Augmentin instead of Zith. MomofGirls; My dd11 now has 3 negative Western Blots; one before any ivig, and 2 from Igenex- one 6 months after ivig and one this month. The only band consistent on the 3 tests in 41 and this last one didn't even have the IND band the previous one did even after months, heck over a year on different HD abx. The dr said he and the director of the lab have confirmed the ivig does not impact the igenex results, he hands the igenex "kits" out in the office. DD11 also has two previous AST/ALT results in the past 18 months completely in the normal range. In order of likelihood the suspects are abx, ibprofen, hepatitis A, or possible EBV. We were doing detox (AbsorbToxins) last month with the zith and Bactrim plus tons of fluids and probiotics. No rashes, no behavioral changes, nothing....if it weren't for the lab results, I'd have no idea. Trudy-It's my younger dd7 who had an uptick in symptoms 2 days after stopping abx. My dd11, with the awful liver enzymes, hasn't taken anything...not one pill since Thursday and she's actually doing better. This time she only took 3 days of prednisone instead of the typical 6 prescribed and she's had NO headaches or nausea which she did have with the last ivig with the pred and ibuprofen for days following. I'm waiting to repeat the labs in another week or so. If they haven't dropped, I'll officially freak out. Did you know you can elevate your AST/ALT by drinking alcohol before the draw.....or taking meds that irritate the liver hours before the draw, which she did. All of her other liver markers on her chem panel were fine, she has no symptoms of liver distress at all.....she actually seems better, like better behaviorally and cognitively too.... I'm going to wait for repeat labs before making any other moves about my older girl. Sigh.....this life isn't for wimps!
  4. I could really use your input friends. Some of you may have read the AST/ALT thread from Wed/Thursday. my dd11 was in CT having ivig. Her chem panel came back that her AST is 349 and ALT is 729, reallllllly bad. The month prior to this, doc had added Bactrim to Zith bcs dd11 had an unexplained uptick in symptoms (end of April) that made him suspect lyme/bartonella (recent labs totally clean, no more Bactrim); plus she was taking ibuprofen for headaches, but usually about 200mg/day. First week of May, my dd7 has an uptick as well which makes me now suspect strep. Increase her from every 3rd day zith to everyday and the symptoms are gone in 6 days but keep her at daily zith until we see doc last week. Fine. So, this Thursday is when these crazy liver numbers come to light, all meds, ALL are stopped for dd11 and she seems no worse for it. A couple mild headaches yesterday, but she just had ivig the day before. Now I'm thinking, jeez, if dd11's liver is stressed out, perhaps dd7 should go back to every 3rd day zith like before. SOoooooo, I don't give her the Zith for TWO days and the symptoms are back. She's got the lip-licking ring around her mouth right now. What is going on with my kids??? My girls don't get symptoms for strep except behavioral ones. The only way I'll know for sure is to run ASO/aDNAse B. Was the full dose zith holding off the infection, but not clearing it completely??? DD7 was fine on prophylactic dose before the beginning of May, now I can't take her back down??? DD7 could probably handle the daily zith since she isn't taking anything else.....but WHY is it now needed? I can call the office on Monday, but what am I asking for???
  5. Great job, Vickie!!! Wow, that was fast!!! I signed up too. I entered thanks for adding PANDAS in the comment box.
  6. Thank you, ladies for the support and brainstorming. Does anyone know if the comprehensive chem panel is supposed to be fasting? And there are other liver pieces to that chem panel, yes? But those two were the only ones out of range....outrageously so, but all others were in range. I wonder what that means?
  7. I suppose those ratios all refer to hepatitis bcs that's what the article was about. They'll need a new category for the kids who take tons of abx and Motrin chasing asymptomatic infections and brain inflammation. Sigh......
  8. What kind of side effects? It seemed like it didn't do a thing.....except for the possible liver of an alcoholic.
  9. Pulled from the article: An AST:ALT ratio equal to one (the level of ALT is higher or equal to AST), but the levels are very high, suggests acute viral hepatitis or drug-related hepatitis. An AST:ALT ratio higher than 2:1 (two times the level of AST to ALT) is very suggestive of alcoholic liver disease. An AST:ALT ratio higher than one (where the level of AST is higher than the ALT) could also indicate cirrhosis in a person that doesn't have alcoholic hepatitis .....hmm, they don't comment on ALT being twice AST. I guess viral hepatitis (would have to be Hep A, right?) can rise up near 1000. She had the Hep B vaccine, not that that would mean anything.
  10. I'm not sure. Currently, she isn't having any overt signs of liver distress; her urine looks fine, her coloring/eyes are not discolored, no abdominal pain. Her doc is at a conference today, so my husband met with the PA who was very good, thorough and accessible. I was on speaker phone. I asked her if they were higher than she had ever seen before and she said no. She said they were not alarmingly high, but definitely a cause for concern that needs to be addressed promptly. IDK, maybe she didn't want me to panic. Should I be panicking???
  11. Ok, scratch all that from before...we do not fit in the hypothesis. Here's our numbers: 12/09 AST-26 ALT-17 11/10 AST-27 ALT-22 5/11 AST-346 ALT-729 Yes, I did repeat those numbers to doc to make sure I heard them accurately. We are pulling her off everything until we figure this out. Long story as short as possible, prior to last IVIG, dd had an unexplained uptick in symptoms which made doc question an IND lyme band and Bartonella. Bactrim was added to the Zithromax. When we returned home from IVIG trip, dd7 was also having an uptick in symptoms....now I get it! Increase dd7 from prophylactic dose zith to daily, symptoms gone in 6 days. DD11, more complicated, just had IVIG, headaches and nausea...what do you do? Give ibupren. Suspected strep based on lil sis's reaction, increase her zith. By week 3, she's complaining of fleeting nausea and headaches; no rashes, no significant behavioral changes. Is something dieing??? Or are all these meds putting strain on her liver resulting in nausea? Her coloring has been fine. The good news; doc re-ran Igenex labs and everything came back completely clean, no INDs, just 41+igg which we are not concerned about at all. So there is no need for Bactrim, hopefully the med responsible for giving her liver a major attitude. Hopefully, we can soon re-introduce augmentin for protection since zith might be too much. We are re-running a chem panel and hep panel in two and 4 weeks. It's funny, although I support those of you who are pursuing lyme for your kids, my instincts and my dd's hx have never been strong about lyme. That being said, as a mom who erroneously kept my dd on the psych med rat wheel for almost 3 years being backed into all types of diagnosis, I think it is important to keep an open mind; I've been wrong before. I was surprised at last visit to be adding Bactrim, but thought, ah, it can't hurt. Well, I guess for my kid the abx combo is too much and it probably wasn't anything dieing, but organ distress. But this is why we run the labs. Sorry, Kelly. I know this wasn't the purpose of this thread.
  12. Sorry Kelly, pulling information from nurses via text through dh is no small fete!!!!! So far, I've got the AST was elevated but NOT ALT. Don't have a number yet. Do I not rub off on him in any way???? ASK MORE QUESTIONS!!! :wub: Last text to dh to ask PA in for doc today... Since ALT is more specific to liver than AST and her AST is elevated, but ALT normal, is it possible brain inflammation can be suspected as a cause for an elevation in AST when ALT is WNL??? Since it is not Dr. B, not sure they will know what to make of that question....but that is what we are getting at here, correct?
  13. So....if we were trying to aggravate her liver, 2 HD abxs, probiotics, and ibuprofen should do the trick, huh? Does the charcoal/clay make things better or worse? How about the fish oil? Does anyone know, if we back off to the bare minimum the docs determine, how quickly we can expect improvement? How often do we retest? monthly?
  14. Her old one says Complete Metabolic Profile. I thought the lab slip said CBC, but it's probably my mistake bcs most of the tests you mention Kelly, are on there. Does anything besides ABX elevate these tests....besides substance abuse? Any supplements suspected?
  15. Hi Kelly, 12/09; AST= 26, ALT= 17. Now I'm looking back 8 months ago; 11/10. dd11's AST= 27, ALT=22. DH has her up in CT today.....so this is all second hand (and of course driving me crazy to be out of the loop), but the ivig nurses said her labs came back elevated and not to give her anymore abx until he speaks with the doctor. Dr. B ordered a CBC and IgG on her, so I'm guessing it is the AST and/or the ALT that are elevated??? Is there anything else on the CBC that would indicate liver stress? I'm having him get a copy of the labs tomorrow. I'll post the current numbers tomorrow, but one thing I can say with certainty is dd's symptoms were definitely WORSE in 12/09 than in 11/10 or now. Jill
  16. Hang in there Tracie. There's a lot of stuff going around now and probably won't settle down for another 3 weeks. Grrrrr
  17. Good Lord, Eileen! My dd11 is going into 6th gr as well and I am sending the vaccination cards up for both girls, 7 and 11, with my dd and dh for Dr. B to sign this Thursday (she's scheduled for a treatment. We are in PA and I spoke to the school nurse in the elem where I work. She said it would not be a problem. In fact, the space just asks for a signature, no dx code or label. She just told me if there was an outbreak at their school, I would be required to withdraw them for a certain period of time.
  18. Anybody had strep in their house this spring where zith cleared one kid, but not the other?
  19. I think what he meant was .4-.8 g/kg for ASD and 1.5-2.0 g/kg for pandas...he threw you with the mg. Thank you for the link to the handouts!!!!
  20. His presentation is fantastic! A must see.
  21. http://www.sciencedaily.com/releases/2011/05/110525131701.htm Autism Changes Molecular Structure of the Brain: Discovery Points to a Common Cause for Multifaceted Disease For decades, autism researchers have faced a baffling riddle: how to unravel a disorder that leaves no known physical trace as it develops in the brain. Now a UCLA study is the first to reveal how the disorder makes its mark at the molecular level, resulting in an autistic brain that differs dramatically in structure from a healthy one. (Credit: © Tramper2 / Fotolia)ScienceDaily (May 25, 2011) — For decades, autism researchers have faced a baffling riddle: how to unravel a disorder that leaves no known physical trace as it develops in the brain. Now a UCLA study is the first to reveal how the disorder makes its mark at the molecular level, resulting in an autistic brain that differs dramatically in structure from a healthy one. Published May 25 in the advance online edition of Nature, the findings provide new insight into how genes and proteins go awry in autism to alter the mind. The discovery also identifies a new line of attack for researchers, who currently face a vast array of potential fronts for tackling the neurological disease and identifying its diverse causes. "If you randomly pick 20 people with autism, the cause of each person's disease will be unique," said principal investigator Dr. Daniel Geschwind, the Gordon and Virginia MacDonald Distinguished Chair in Human Genetics and a professor of neurology and psychiatry at the David Geffen School of Medicine at UCLA. "Yet when we examined how genes and proteins interact in autistic people's brains, we saw well-defined shared patterns. This common thread could hold the key to pinpointing the disorder's origins." The research team, led by Geschwind, included scientists from the University of Toronto and King's College London. They compared brain tissue samples obtained after death from 19 autism patients and 17 healthy volunteers. After profiling three brain areas previously linked to autism, the group zeroed in on the cerebral cortex, the most evolved part of the human brain. The researchers focused on gene expression -- how a gene's DNA sequence is copied into RNA, which directs the synthesis of cellular molecules called proteins. Each protein is assigned a specific task by the gene to perform in the cell. By measuring gene-expression levels in the cerebral cortex, the team uncovered consistent differences in how genes in autistic and healthy brains encode information. "We were surprised to see similar gene expression patterns in most of the autistic brains we studied," said first author Irina Voineagu, a UCLA postdoctoral fellow in neurology. "From a molecular perspective, half of these brains shared a common genetic signature. Given autism's numerous causes, this was an unexpected and exciting finding." The researchers' next step was to identify the common patterns. To do this, they looked at the cerebral cortex's frontal lobe, which plays a role in judgment, creativity, emotions and speech, and at its temporal lobes, which regulate hearing, language and the processing and interpreting of sounds. When the scientists compared the frontal and temporal lobes in the healthy brains, they saw that more than 500 genes were expressed at different levels in the two regions. In the autistic brains, these differences were virtually non-existent. "In a healthy brain, hundreds of genes behave differently from region to region, and the frontal and temporal lobes are easy to tell apart," Geschwind said. "We didn't see this in the autistic brain. Instead, the frontal lobe closely resembles the temporal lobe. Most of the features that normally distinguish the two regions had disappeared." Two other clear-cut patterns emerged when the scientists compared the autistic and healthy brains. First, the autistic brain showed a drop in the levels of genes responsible for neuron function and communication. Second, the autistic brain displayed a jump in the levels of genes involved in immune function and inflammatory response. "Several of the genes that cropped up in these shared patterns were previously linked to autism," said Geschwind. "By demonstrating that this pathology is passed from the genes to the RNA to the cellular proteins, we provide evidence that the common molecular changes in neuron function and communication are a cause, not an effect, of the disease." The next step will be for the research team to expand its search for the genetic and related causes of autism to other regions of the brain. Autism is a complex brain disorder that strikes in early childhood. The disease disrupts a child's ability to communicate and develop social relationships and is often accompanied by acute behavioral challenges. In the United States, autism spectrum disorders are diagnosed in one in 110 children -- and one in 70 boys. Diagnoses have expanded tenfold in the last decade. The study was funded by the National Institute of Mental Health, the Canadian Institutes of Health Research, and Genome Canada. Tissue samples were provided by the Autism Tissue Project, the Harvard Brain Bank and the Medical Research Council's London Brain Bank for Neurodegenerative Disease. Geschwind's and Voineagu's co-authors included Jennifer Lowe, Yuan Tian, Steve Horvath, Jonathan Mill and Rita Cantor of UCLA; Benjamin Blencowe and Xinchen Wang of the University of Toronto; and Patrick Johnston of King's College London.
  22. See PhillyPA's post #10 in this thread http://www.latitudes.org/forums/index.php?showtopic=12951&st=0&p=107743&hl=+joseph%20+dalmau&fromsearch=1entry107743
  23. I thought PhillyPA posted about this guy, Joseph Dalmau was the guru on NMDA, but out of U of Penn, not CHOP (they're kissing cousins.) I also thought I remembered he wanted nothing to do with pandas... I'll see if I can find that post.
  24. I read some articles referring to an NIMH study that identified a gene in kids with ADHD at age 8 who "outgrew" symptoms by age 16. The gene variant group outgrew symptoms when children identified with ADHD without the gene variant did not by 16. Hmm It is thought that many kids outgrow ADHD symptoms in their late teens, early 20s. Anyone wonder if this is related to Swedo/Cunningham's comments on the immune system "righting" itself around those same timelines?
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