adkmom Posted June 13, 2011 Report Share Posted June 13, 2011 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 Link to comment Share on other sites More sharing options...
LNN Posted June 13, 2011 Report Share Posted June 13, 2011 Darlene, What I like about this article is the atypical presentation, the focus on behavioral changes - that alerts parents to not dismiss sudden changes. What kept us off the lyme trail for so long was that ours was so neuropsych in nature and while the muscle pain was there, the psych stuff was so dominant, that we dismissed the possibility of lyme for a long time (despite a known tick bite - we were stuck on Pandas due to known strep in the same time period). Sometimes I think the "sound bite" short lists of lyme symptoms does a disservice, because it can make some people dismiss lyme when they shouldn't. It's frustrating - the lack of literature and press on the neuropysch aspects. Thanks for being willing to put your family out there and keep the coverage going! Laura Link to comment Share on other sites More sharing options...
adkmom Posted June 13, 2011 Author Report Share Posted June 13, 2011 Thanks Laura. You're right. It's maddening how many people, including our peds up here, have no idea abut the neuropsych stuff. Actually, the reporters seem much more interested in covering these "stories" with that being the angle. Link to comment Share on other sites More sharing options...
rowingmom Posted June 13, 2011 Report Share Posted June 13, 2011 The behavioural changes you noted are the exact ones exibited by my dd9 - sound and light sensitivity, ADHD, social delays, hiding under desks at school. Motor tics began in the fall of 2009 after a bite of unknown origin which produced a single 1" diameter red rash. She was diagnosed high functioning AS Dec 2009. Tics increased with strep infection and she was diagnosed with PANDAS in Dec 2010. Muscle pain, headache, fatigue, cyclic digestive issues, night sweats, migrating long bone pain, sore feet began in Jan 2011. Our family doctor wanted to put her on anxiety and tic meds, saying her only problem was that she did not want to go to school - she loves school by the way, and that children on the AS often have these problems. Her pediatrician is investigating autoimmune bowel disease. It was the first article written on your son that brought it all together for me. Please don't consider that your news articles may be boring to anyone - information on clinical presentation in children needs to be emphasized. We are now seeing a LLMD in Buffalo (we are Canadian and fortunately living close to the US border). She is being treated for clinical symptoms of Lyme and bartonella while we await Igenex results. She has been taking biaxin, transfer factor, interfase and boluoke for 5 days now and started bactrim yesterday. Her tics and pain have resolved somewhat and she is less emotional, although the fatigue is still there. This forum is a wonderful resource for parents who are searching, searching... Link to comment Share on other sites More sharing options...
LNN Posted June 13, 2011 Report Share Posted June 13, 2011 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). Link to comment Share on other sites More sharing options...
lfran Posted June 13, 2011 Report Share Posted June 13, 2011 Yes -- my DS9 also hid under desks and tables at school and at home. Also sound and light sensitive. On current treatment for Lyme and Bartonella. The behavioural changes you noted are the exact ones exibited by my dd9 - sound and light sensitivity, ADHD, social delays, hiding under desks at school. Motor tics began in the fall of 2009 after a bite of unknown origin which produced a single 1" diameter red rash. She was diagnosed high functioning AS Dec 2009. Tics increased with strep infection and she was diagnosed with PANDAS in Dec 2010. Muscle pain, headache, fatigue, cyclic digestive issues, night sweats, migrating long bone pain, sore feet began in Jan 2011. Our family doctor wanted to put her on anxiety and tic meds, saying her only problem was that she did not want to go to school - she loves school by the way, and that children on the AS often have these problems. Her pediatrician is investigating autoimmune bowel disease. It was the first article written on your son that brought it all together for me. Please don't consider that your news articles may be boring to anyone - information on clinical presentation in children needs to be emphasized. We are now seeing a LLMD in Buffalo (we are Canadian and fortunately living close to the US border). She is being treated for clinical symptoms of Lyme and bartonella while we await Igenex results. She has been taking biaxin, transfer factor, interfase and boluoke for 5 days now and started bactrim yesterday. Her tics and pain have resolved somewhat and she is less emotional, although the fatigue is still there. This forum is a wonderful resource for parents who are searching, searching... Link to comment Share on other sites More sharing options...
adkmom Posted June 18, 2011 Author Report Share Posted June 18, 2011 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? Link to comment Share on other sites More sharing options...
adkmom Posted June 24, 2011 Author Report Share Posted June 24, 2011 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). Link to comment Share on other sites More sharing options...
LNN Posted June 24, 2011 Report Share Posted June 24, 2011 Glad it was such an "easy" fix! Don't you love those rare moments when doing something simple - and free - helps! Hope the improvements continue! Link to comment Share on other sites More sharing options...
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