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Everything posted by adkmom

  1. One visit so far with Dr. Bovenzi in Albany, trained under Dr. J briefly. But she's a ped.
  2. Susan, Was your child born with Lyme? Was the sensory processing more a symptom of Lyme or Pandas? Or maybe we don't know? My dd4 started too with sensory processing (forgot that one), then adhd, fears..and same course as your child. Diagnosed Pandas in Nov., 2 weeks later, diagnosed with Lyme. darlene
  3. Hi everyone, Am I alone or is it fairly common for children with Lyme to present with more cognitive or behavioral type symtoms? We never saw a rash, tick bite or even recall flu-like illness (maybe presented like an ear infection, since we had lots of those) and was treated but disappeared. Even dd4's fatigue was intermittent and mixed with high bursts of ADHD behavior. Instead, in order of how they presented: inability to focus, impulsivity, hyperactivity, difficulty following directions, oppositional, mild fears (OCD?)not wanting to sleep alone because of monsters, complaints about bugs being in his room.... (abrupt, jerky movements throughout the night even while asleep), THEN periodic fatigue, feet pain, several headaches. Am I alone...any others see more behaviorial, less "physical" symptoms initially??? I'm working on articles for several newspapers for May's Lyme Awareness Month. thanks guys... lovin these things. darlene
  4. Anyone know if there's any Lyme nonprofits, groups specifically geared towards children with Lyme? I'm mulling over whether to launch a Children's Lyme Foundation... I know there are large groups, ILADS and such but there seems to be such a need to promote education and awareness specifically for children. As we all know, we seem to face different challenges, questions, symptoms as moms of children with Lyme. It's always easier to generate awareness and anger to instigate change when children are at the forefront. It seems they've gotten forgotten, in a sense, with this disease. None of my peds offices ever "promoted" prevention of Lyme and we lived in endemic areas. Sorry...I'm in a fiesty, frustrated mood today...this is a long road. And we're only 3 months in! darlene
  5. Have been bouncing between Lyme and PANDAS boards. and am wondering if there is anyone from upstate NY on the forum? I know 2 moms whose children became infected while in NY but anyone live here? thanks. darlene
  6. Tantrums, It's such a new tic for "us" that when I'm watching tv and he does it, my instinct is to say "shhhh". How terrible is that. I've had to catch myself. He clearly doesn't even realize he's doing it. Lovin these faces.....
  7. We see a pediatric Lyme doc tomorrow afternoon. I'll keep you posted. thanks for asking.
  8. Everyone probably knows about this....but if your child has to have blood draw and really dislikes it (as mine did). You can get a script for the numbing med, rubs on their arm and 30 minutes later they won't feel the needle. (i've forgetten the name of the med.) But you can't get it at the blood lab..your doc has to write the order. Just fyi....
  9. Just wanted to pass along a reminder...Dr. Swedo's being interviewed tonight at 9. Here's the link. http://www.blogtalkradio.com/show.aspx?userurl=the-coffee-klatch&year=2011&month=02&day=10&url=dr-susan-swedo--nimh
  10. Just my 2 cents My ds4 tics and ocd got better after 2 week round of steroids. And contrary to what some may think, it didn't get worse even when he later tested positive for Lyme.
  11. Thanks everyone for responding. We're going on our 4 month since diagnosis. 4th week diagnosis of Lyme. Can't believe it! The past week has been really rough and he's going through so much. I've never had to deal with something where it was so cyclical. It has been such a roller coaster. Just when things start looking up, something new starts. I'm home with him all day (and very fortunate that way) but watching him constantly for any changes, signs, clues that something is either getting better or getting worse can be exhausting....as I'm sure you can all relate to. We're seeing a ped. LLMD doc tomorrow and hopefully she can give me some words of encouragement (although most of the encouragement has been coming from you ladies...and for that I really, really thank you )
  12. If anyone could provide some insight with these results, I'd really appreciate it! Lyme IgM WB (positive by Igenex; negative by CDC criteria) He was positive with 18 & 31 kDa bands and Indetermined on 41. He is negative on IgG WB. Does he have Lyme? Doesn't seem like he has many positive bands? What do those bands mean? Thanks to anyone who can clarify for me.
  13. So, what does it mean when your child tests positive for Lyme by Igenex criteria but not by CDC? Will he then be rejected for coverage by insurance companies? Does he still have Lyme? thanks.
  14. Elizabeth, Did they have the tic all along? (I would think that the original tic would resurface but this is a new one for Colin) He also started blinking a lot. He's doing it almost continually (every 5 minutes throughout the day). Thanks for your encouragement. darlene
  15. My DS4 just started what is another type of tic I think. It's a grunting sound (almost like he's trying to go the bathroom...sorry for the crudeness or lifting too many weights) it's not throat clearing exactly...Anyone ever have this? He's been diagnosed with Lyme and Pandas. thanks for your input
  16. So, today he's now throat clearing. Has never done that before. In addition to a lot of eye blinking. He moved non-stop!, abrupt, aggressive, moves allll day and finally collapsed at 9:30! He also developed a rash around his mouth and rosy cheeks. I'm waiting to see if it's from something he ate. Dr. B is suppose to be suggesting our next move. Will keep you posted ;( Thanks for all the support. I'm starting to think of everyone here as my FFs (forum friends )) God, never thought I'd be here!! But glad I found you all.
  17. Hi SF Mom, My guys are fraternal. both boys! Challenge is 1 has pandas/lyme and gets away with some stuff , his twin brother sees that and copies him! Uhhhh! My guys are always on the go, so it's been exhausting...as I'm sure you know. thanks for all your advice.
  18. Kmom, Thanks for all your advice. I'll make an appt with an LLMD today. I always thought the bug sensation thing was related to Pandas (some sort of sensation tic). It's scary to think we could have easily missed Lyme all together without the right testing. many, many thanks again. adkmom
  19. Thanks so much Laure and Wendy. Laure has passed on one doc's name. I'm in upstate NY (Plattsburgh). What is herxing? He went to bed tonight and had started complaining about the bug sensation on him He hasn't said that in weeks. He actually seemed to be doing better when he was on Omnicef. thanks again soooo much.
  20. I'm so new to this I'm getting completely confused and exhausted. I would appreciate anyones knowledge! This is what I'm trying to figure out: My ds4 pandas/lyme started omnicef was doing well, then switched to Zithro. 250mg since Lyme diagnosis. It's been 2 weeks and he seems to be backsliding. Since the Zithro (and stopping Omnicef), he's become aggressive again, hyper, unable to focus, whiny, some tics returning and extremely impulsive (he actually jumped into a garbage man's truck when the driver door was opened!) I feel I need to keep my hands on him at all times in public because I don't know what he'll do next. He can't focus enought to get dressed alone or even complete his meal. Not sure what to think. Is this a typical Lyme protocol? What are the cysts busters? Why are some of your kids on 2 antibiotics? How do I know this is Lyme symptoms or is it PANDAS symptoms? I was feeling hopeful and am now getting confused on what to do next. We haven't yet seen a LLMD, but a Pandas doc. Thanks so much for any insight. adkmom
  21. My DS4 tested negative 2 times with Quest labs. Positive with Igenex. I would encourage you to look carefully at the lab that's testing. If we had not persued the more thorough lab test, we would be lost and our son would be growing up with Lyme progressing. It's kind of scary.
  22. Hi everyone, Totally new to this board and everyone probably knows about this. But, a new documentary Under Our Skin is out and is a fabulous...although enraging and sad...to watch. It features patients struggles, political battles and many of the docs we have all talked about and visited. I rented through local cable company, but i'm sure it's in blockbuster as well. adkmom
  23. Kara, Our ds4 recently finished 2 week prednisone taper (40mg daily to start). The hyperactivity went up and there was still some aggression and meltdowns but the OCD and tics disappeared within days. It's been 2 weeks since we stopped and he's still doing well. (All this despite the fact we later found out he is positive for Lyme, so steroids should have made things worse...but they didn't) His OCD was mild though. But he was very fearful and that has cleared 98%.
  24. Hi Sarah, Glad you found everyone here. I'm fairly new, ds4 diagnosed about 2 months ago but I have learned so much from the parents on this board and gotten some great direction. (this was where we found our Pandas doc) Anyways, my sons tics was what we first noticed. He had very mild OCD. In fact, my hubby, a psychiatrist picked up on the tic before the OCD. And his OCD was very specific for a toddler, so couldn't tell it...for example...believe it or not...Bob the Builder HAD to be the only movie we'd play, that lasted for 2 straight months! Nothing else, or a total meltdown. Once he completed his round of steroids, Bob the Builder was done! :)He wasn't at all interested in it. He'd also have irrational fears, have to turn the lights off in the house (but only when a movie was on, go figure!). After Igenex testing, we discovered past episode of Mycroplasma pneumonia and now positive for Lyme. After a round of steroid and 2 months on high dose antibiotics, his tic, which was constant (touching his head) is gone and OCD is down substantially. We're still new to treatment and only 1 week into Lyme treatment, so we'll see what happens. Hope that helps. and good luck.
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