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adkmom

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Posts posted by adkmom

  1. Thanks for sharing. Bizarre about the Guinnea Pig. I'll have to share your story with Dr. B, since he was just guessing that was triggering the tics...but of course, now the tic is staring and no pig in the house! what the heck?? He doesn't have sinus infections, always is okay on his checkups with Dr. B.

     

     

    Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds :) Wonder why.

     

    sorry, bit cynical tonight.

     

    Want to add to Julia's suggestion to look into mold. My daughter sounds a lot like yours. We had allergies with the hampster that we recently brought in. Tics went through the roof...back to a bad place I thought we'd never see again. Got rid of hampster, tics subsided. Also, my daughter too had bad horrible sinus infections...every year, with no "allergies" except for cats and dust mites also! Since moving out of moldy home, no more sinus infections. Although still dealing with tics and hyper sensitivity to mold, severity of all symptoms has diminished greatly.

  2. Hey there,

     

    We were using Tindamax but took a break for a while to figure out what other meds were doing. Still on all 3 antibiotics, Metadate for AdHD. We were having a good 2 weeks, ADHD much better, but now the darn tics are starting up...the throat clearing has begun again...you start to wonder, are we just suppose to ignore it??? It's only about 2 hrs day but usually other behaviors come with it, irritabilit, aggression, anger...he's grunting now! So, i'm guessing my day will be rough.

     

    Anyone notice, the tic preceding the behavioral symptoms?

     

    Darlene

     

     

    Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds :) Wonder why.

     

    sorry, bit cynical tonight.

     

    Yes, I was close to using valium a couple months ago! Is the tic the worst symptom right now? how are the other issues he was having. We were in a perpetual herx for over 16 weeks! Are you using something for cysts?

  3. I remember. Kathy and Liam, right? So glad he's doing better. Will he be going back to school? And any sports? Last time we talked, he was still spending most of his time on the couch :( I'm sorry, can't recall if I followed up with you about sharing Liam's story? Unfortnately, I couldn't get it into the Buffalo papers. Also can't recall if I shared info about the Children's Lyme Disease Network? (I'm brain dead lately) We're working on a website now and have several moms who want to be involved somehow. Please consider visiting and liking us (and Liam too) on our Facebook page, every family who's been impacted by this helps in furthering our cause...(Funders are watching how many Fans we have in deciding whether or not to support the Network)

     

    Anyways, allergy meds are stopped, cause it's making NO difference. The tic is still there.

     

    Keep in touch. Liam is lucky to have such a mom!

     

    Darlene

     

     

     

     

     

    Your so right. My son's tics are very minimal now but probably wouldn't have any if it weren't for allergies. Cats, dogs, grass, trees, weeds... The problem is with lyme and bart the immune system is effected so that it doesn't know how to use meds or shots. We have to wait untill lyme and bart are gone (well for the most part gone) to treat allergies. I was told the immune system is overtaxed and/or not functioning at a degree to know what to do correctly. But if meds work for you, which I hope they do, lets us know, would like to know your finding. Kathy

    p.s. I don't know if you remember talking, but my son is doing well at this time!

  4. We're a week into an ADHD med for our ds5, whose main symptom has been motot tic and ADHD symptoms, aggression. It's been a great improvement so far. FINALLY, able to play with his brother and play independently. Before, I was breaking up about 20 explosive fights a day. He's also able to wait his turn and LISTEN to his brother without having a fit and trying to talk over him...He seems happier but maybe because I'm not constantly saying QUIET!, stop fighting! Slow down! So, I've been there Wilma.

     

    DS5 has Lyme, Pandas and clinical dx of Bartonella. The docs approved his ped starting the ADHD med as long as we continue on the course of fighting the infections and dealing with the autoimmune issues since they're convinced that's triggering the AdHD behaviors. Either way, they said, go for it and we can wean him off as we get the other issues under control.

     

    That's where we're at. Cautious though because just as I'm thinking maybe NO pandas, just ADHD disorder??? His grunting tic re-emerges (not an ADHD symptom) but more Pandas.

     

    good luck.

     

    Darlene

  5. Hey everyone,

     

    I haven't been on the forum in a while. Just a quick update on our DS5 (logged into this at age 4) our ds5 has been diagnosed with Lyme, Pandas and clinically with Bartonella. (lots of aggression, anger, foot pain, ADHD stuff) He's been on Bactrim, Omnicef and Azithro for the past 5 months. We just increased the dose of Azith and Omnicef and also added in an ADHD med (reluctantly, but things were getting dangerous without it!.. with all his impulsivity) He's been improving but the ADHD symptoms were not letting up, lots of angry outbursts (calling me horrible names!) and an unrelenting motor tic. A few things we discovered on our last Lyme/Pandas doc visits:

     

    DS5 had tested negative on the allergy test (pricking in the arm). But recent blood test showed he had allergies..highest should be 50. He tested 780! Doc said the prick test is often not very accurate...not sure, why we did it at all. But okay. So, allergies can trigger any of the PANDAS symptoms (sorry, forgot I'm on the Lyme board!), allergies acting just like an infection would. So, ds5 started daily allergy meds to see if symptoms would improve. (can't tell yet)

     

    Also, we brought a Guinnea Pig into the house...and the motor tic soared! His behaviors went from 80% improvement to 10% improvement. Felt like we were back to square one! A long shot...our GREAT doc kept asking what was different in the house..new pet? I mentioned the GP. And he said, take it out. We did and within 1 day...ds5 tic had subsided...back in the house, it started up. Sooo, just FYI...those allergies DO impact their symtpoms.

     

    The GP is now on a farm!!

     

    Hope some of this rambling info. helps out.

     

    thanks guys.

     

    Darlene

  6. MJMama,

     

    I haven't been on the forum much lately but came across your post and can totally relate to what you're saying. Our ds5 (4 when we started on this journey) was diagnosed with PANDAS first but thankfully, tested for Lyme which came back clearly positive. And he'd had it for over a year. I mention this because he had lots of fatigue as well. Was your daughter tested for Lyme? Also, when the antibiotics cleared up some symptoms, the fatigue remained and our Pandas doc said that isn't a PANDAS symptom, so he couldn't figure out what was causing it...then the Lyme results came back and we had our answer.

     

    Also, my son had rage/aggression and I can relate with calling you names :) This weekend, he kept calling me "stupid" and...I hate to share this but..."i'll break your neck in half mom!" A shocking statment to come out of his mouth...all this anger over nothing really, something I refused to give him BUT the entire rest of the day he was an angel and 10 minutes after the nasty statement he was smiling and hugging me like nothing happened. It truly is a Jekyl and Hyde moment. Luckily, that doesn't happne too frequently anymore. Discipline for us...is going to his room to calm down, when I can tell its a PANDAS episode.

     

    Hope that helps. Also, the anger started subsiding once we put him on an antibiotic to treat Bartonella, a co=infection. It's so confusing..so many of the Pandas and Lyme symptoms are similar!

     

     

    Darlene

  7. Hi all,

     

    Just wondering if anyone has seen Judy Leventhal in NYC for neuropsych testing? My ds5 (ds4 when I signed onto this forum!) is still struggling with ADHD symptoms. He's diagnosed Pandas and Lyme and no one seems to agree on what is causing the ADHD behavior...Lyme, autoimmune stuff. We're trying to figure out the best possible treatment...

     

    Any feedback via PM would greatly appreciated!

     

    darlene

  8. Hi Laura,

     

    Can you believe a little tiny Guinea Pig seems to be what's caused all his backsliding! unbelievable! Went to Dr. B and after much prodding from him on what has changed in the home, I mentioned that we had gotten a new pet. Colin sleeps in the same room with it. Then discovered that my husband was allergic to guinea pigs when he was a child. We removed the gp and within 4 days, colin's symptoms started subsiding. So, the regression seems to be due to PANDAS, not Lyme according to Dr. B.

     

    It's amazing how such a small incident can cause an autoimmune reaction like that! I mean, within 2 days we were back to the Jeckell and Hyde, spitting and kicking tantrums and name calling. It seemed to happen overnight.

     

    So...another lesson learned. Even a little cuddly animal can set things off!!!

     

     

     

    Darlene-

    Meant to address your decline from 90% to 60% - it happened to us as well - twice. the first time was after pex. DS was getting visibly better in so many aspects and thru a strange set of coincidences, I had the chance to write an article about our experiences. At the end of the article, I brag about how well he's doing and how we're so hopeful...only to have him tank by the time the article was published 3 months later. Felt like I should have run to the grocery store to get some barbeque sauce for the crow I was eating.

     

    The second time happened this past April, after seeing DS get so much better at the start of bartonella treatment, then to see him slide backward when we started to focus on lyme. It really is a roller coaster. Try to hang in there (not that any of us have a choice). It means there's more to the disease, but every set back is a clue and another chance to kill stuff that's been lurking. I guess it's like earning your black belt in Karate. Each test gets harder and requires more practice, effort and energy. But each step also brings you closer to your goal. (not that I wouldn't jump at the chance to stop right at the belt we're at, skip the rest of what's ahead and go straight to good health).

  9. Rowingmom - Thanks for your encouragement. I read your email just when I was starting to feel frustrated. Does truly all this awareness make any difference? (feeling a bit sorry for myself at that moment I guess because our ds4 was having a terrible regression...motor tic and dozen symptoms that had disappeared were back overnight) so, your email lifted my spirits. How is your child doing with treatment?

  10. So, another article on Children and Lyme. But really gotta get the reporters to drop the focus on my child. (don't mean to be boring everyone with my child's story but wanted to share the link just FYI)

    We're hoping some children in GA and PA are up next for profiling and creating awareness.

     

    Also, ironically as the article is released .... our 90% better has now slipped back to about 60%. Very discouraged!

     

    Link is also on Facebook.

     

    http://pressrepublican.com/0808_health/x1678755182/Lyme-disease-awareness-important-for-parents

  11. Hey Melinda,

     

    Sorry I missed your message. Would have been happy to help out. I think I cleared up the PM box issue. Would you mind trying to PM again to see if it works? I did post a mention on our Facebook page but that's still limited audience :(

     

    Darlene

     

     

     

    Nice going!

    Who organized this?

    I'll paste on Children's Lyme Disease Network Facebook page.

     

     

    Darlene

     

     

    There will be a Lyme Light Fashion Show on June 11th (4-6:30) sponsered by Jefferson University's Myrna Brind Center of Integrative Medicine. This event is designed to shine a light on the youth impacted by Chronic Lyme disease. For details see www.montcolyme.org

     

    There will be a TV feature tomorrow, 6/2 (5:30), on NBC Healthwatch with Renee Chenault-Fattah who will interview some teens with Lyme about their experiences with Lyme disease.

     

    Thanks! I'll pm you. She's looking for any media help.

    Darlene- your mailbox is full. I was unable to send you a message. Melinda

  12. I know someone who's little boy who had a tick bite (didn't see the tick attached) but red bump, then 1 week later a circular rash with ONLY 1 ring. Low grade fever but everything cleared up within a few days. Ped said would have seen the ring right away (I believe that's wrong), AND would have seen the tick attached (wrong!) and there would have been several rings if it was Lyme induced. Anyone have any experience with this???? Ped (from NYC) refuses to give any antibiotics. The bite happened in endemic area outside NYC.

     

    She would love some guidance. Thanks much.

     

    darlene

  13. Hi everyone,

     

    Just wondering if anyone has experienced a worsening of symptoms the day following taking Melatonin? I've been giving my ds4 Melatonin to sleep sporadically and it appears (though, I may be imagining it!) that he's more hyped and aggressive the next day. ????

     

    thanks!

     

    darlene

  14. If any parents are interested, you can follow the children's lyme disease network (CLDN) on Facebook. Our website is just a holding page. We're truly in our infancy but getting much interest from the press regarding children and Lyme Disease....like they never knew kids get this infection!!!

     

    http://www.facebook.com/home.php#!/pages/Childrens-Lyme-Disease-Network/152988478090696

     

    Please if you "like us", feel free to Like Us. :)

     

    I also welcome anyone interested in volunteering their skills in developing an organization focused solely on children with Lyme and co-infections.

     

    Thanks.

     

    Darlene

    ds4, lyme, bartonell, pandas

  15. Nice going!

    Who organized this?

    I'll paste on Children's Lyme Disease Network Facebook page.

     

     

    Darlene

     

     

    There will be a Lyme Light Fashion Show on June 11th (4-6:30) sponsered by Jefferson University's Myrna Brind Center of Integrative Medicine. This event is designed to shine a light on the youth impacted by Chronic Lyme disease. For details see www.montcolyme.org

     

    There will be a TV feature tomorrow, 6/2 (5:30), on NBC Healthwatch with Renee Chenault-Fattah who will interview some teens with Lyme about their experiences with Lyme disease.

  16. Laura,

     

    I'm soooo sorry! I've been thinking about you since reading your post. (haven't been on here much lately) I feel so bad for all of you. I'm sure you're counting the minutes to seeing Dr. B again. Wish I had some knowledge to share but sending hugs your way. I imagine he'll be discussing the IVIG route again???.

     

    You have my number (518-802-0134) if you ever need to vent.

     

    Darlene

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