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Everything posted by Priscilla

  1. Just a thought on this one, dogs do carry/ contract Lymes, Lymes causes autoimmune issues
  2. Question about this rash, can you believe this, in the middle of all of this with my dd, I got bit by a tick in September!!! I went for a run, came home to shower and found a tick on my underarm/ back area. So this was before I had my dd tested for lyme, but it made me think again because you wouldn't think we are susceptible to tick bites here in southern ca but it happens! I just ran down a street, no woods!!! just some foilage over the wall from backyards. So anyway, dd tested + for lyme, I had a red bump at the bite site for about a week or two. I have kept track, since... I had about 3 ni
  3. along the lines of SF mom, co-infections can attach to red blood cells, causing anemia which would explain pale and lethargic. I would have the dr run a CBC or at least a quick hemoglobin/hematocrit. Most offices can run that inhouse very quickly.
  4. I am the one that got the Quest CD57 for my dd. As I did more digging, it seems not all Quest labs do it, but the one in San Juan Capistrano does (close to us, this is where ours was sent). Not sure exactly which others are though. So now I am confused if it really even matters, another post says children's results aren't significant???? I was hoping the fact that my dd had a + igenex igg WB AND a cd 57 less than 20 (from a separate lab!!)was a strong indicator that we are on the right path with lyme treatment.... so hard to process, hope we see results.
  5. there is also a story on her site about a little girl named Jani with schizophrenia- not responding well to meds... tried to contact family about the possibility of Lyme/PANDAS. Just breaks my heart to know how many more kids may be getting institutionalized. While we are not well, we have gotten a surprising new diagnosis of Lyme, started treatment, and hoping for more progress. I know for certain if I wouldn't have gotten my dd on antibiotics as soon as she exploded last year, she would be nearly be incapacitated- she was spiraling THAT fast (1 week!!)
  6. I am a Critical Care RN, I have been trying to educate co-workers as well. Now that we also have a Lyme diagnosis there is another area that needs to be DRILLED into the medical community. I took my dd to the ER for a bite with a bullseye rash in 2005- why wasn't the possibility of lyme explored at that time???? maybe we could have been spared some of this misery. I am willing to contribute any way possible.
  7. dd 8 has just tested + for lyme, all other co infection neg. She has been on AugmentinXR for a while (PANDAS), seems all tics have disappeared over the last couple weeks but OCD (certain words) seemed to intensify around the same time. We just added zith 250mg once a day on Monday. Every night since she has awoke in the middle of the night crying in torment for a few minutes, then back to bed. Well she just opened up a little to me last night (HUGE for her!) and said she has dreams of voices saying "the word", she has aversion to several words but "back" is by far the worst. She is actually h
  8. if you know where you had the MRI done, you may be able to probe them for a copy
  9. Sorry you are going through this on top of everything, I fear these things will come back to haunt us as well. I thinkg Wendy has a good idea to get an advocate. It also wouldn't hurt to do some research on the new health care bill and how it involves coverage for children because I know some changes were made that were pretty strict about how children are covered. I am sorry I don't have any details but you may be able to find something to back you up in the new laws if you look hard enough. Prayers to you.
  10. Little update, my friend sent me a text this am realizing (what I was thinking) that her daughter's are responsible for their OWN behavior! Wow what a thought- I feel if my daughter can't take credit for the good things they do, then she shouldn't take credit for the bad either. I did mention that good and bad influence is everywhere outside the home so maybe she thought on that a little. Still a little unsettled about the whole thing but I have to be fortunate that I even still have friends at this point, even if their are some bumps in the relationship Kengala- your teacher sounds like
  11. yeah, I am venting cause I had a well meaning friend tell me her daughters behavior changes after they spend too much time with my daughter. In all reality, I can't blame her, but I also feel I am dealing with so much trying to keep my daughter from losing her mind, that I don't want to feel responsible if her daughters are misbehaving. We are good friends, and our kids are such good friends- I need to set my pride aside but I am really having a hard time. I just want to tell her to stay away until my daughter is well so I don't have to feel responsible. I have already become insecure in my mo
  12. Just a little vent that I am sure so many of you can share. I want to share some thoughts on why others don't see what we see in our children- first of all THEY ARE OUR CHILDREN, WE ARE THEIR MOTHERS/FATHERS. Would I claim to be able to distinguish the cries of a friend/coworker/aquaintence (sp??) newborn??? NEVER- that's what moms can do. Does anyone else spend as much time with our children as us- no. For all the people that say I don't notice anything. Its because you don't know what to look for. You don't notice that everytime you say a certain word my daughter aches her back, wretches her
  13. my dd 8 did well on omnicef too at first, then the effect faded after about 2 mos. switched to zith, it hurt her stomach sooo bad she wouldn't take it, and she was getting worse too. didn't have a lyme test at the time, maybe it was herxing, dont' know. for now, she has been pretty good on augmentin xr 1000mg bid, but new lyme diagnosis. not sure if dr will add zith but I am a little afraid of using it because she doesn't tolerate it well. he said he would probably add something to augmentin. if your ds does well on omnicef like my dd did, then maybe augmentin will be better than zith for now.
  14. I probably should have phrased it "tests"- we did the entire lyme and co-infection panel via Igenex. We also sent a CD 57 to another lab, along with various other tests (CBC, Chemistry, vitamin-D, thyroid, cholesterol, repeated aso, anti-dnase titers- which have now come down to normal range with some symptoms still present...)
  15. so glad to hear you see improvement!!! You have been so low. Please remember that even if she slips a little (it is such a roller coaster!), don't let one bad day drag you down. We are so much improved since last year, but there are awesome days (yesterday) followed by rough ones (this morning-ughhh). I pray so hard for you and your child that you continue to progress
  16. I have been down the vaccine school of thought myself, but there is really no way to know for sure. We have just decided no more vaccines. Two things other than the vaccine jump out at me though, chest pain, and leg pain. Both can be symptoms of lyme. Add behaviour changes, I think its worth ruling out before things get worse. I have been VERY skeptical of the lyme issue, so much so that I have put off testing since this started with my dd 8 last april. We had some improvement with abx, went through 4 high dose ivig with some success, but still alot of issues. Then I decided to educate myself
  17. does anyone know if you can count on the quest lab results. my dd was 28, seems pretty significant, I guess we will have to keep using them to measure progress
  18. well my dd has just tested positive for lyme (just missing cdc guidelines, but signficant enough for llmd and a pretty remarkably low cd57)While I am still processing this and deciding where to go with treatment, its got me wondering. I thought she was so textbook PANDAS, she has almost every criteria, and elevated titers, responded well to abx and ivig, but not enough. I have often wondered why there is such a cluster of PANDAS children in the east, where there is certainly a denser forest and higher population of tics (not that lyme is restricted to that area, probably a higher risk though).
  19. oh yes, we have blood curdling, piercing screams. The started at the begining of it all, not as frequent, but still present when she is set off by a trigger= she is triggered by certain words. The screams to me sound like she is being tormented in her mind, she used to want to die when she was going thru that, I don't hear her talk like that as much, but I think it is because she has been dealing with this since last April, and she now knows the moment will pass, can't console her when she is going through it though. We thought we were dealing with clearly PANDAS... elevated titers, good respo
  20. I'd say about the same for us. We have had 4 HD (2gm/kg) since July. Last one in Oct. Got way worse for 2 mos before getting better. I actually took her off abx for 2 mos she was doing so well- in retrospect, probably shouldn't have- got a fever and relapsed, but not as drastic. She is back on abx now, holding ok, still some OCD and tics but pretty manageable- rage is WAY down, and that was the worst for us. Doing well in school, and just signed up for softball. We just did ALOT of blood tests that weren't done at the start of this- been waiting to discuss with Dr for last 2 days...... still w
  21. PANDAS network reports a tentative 50 children for the ivig study, wasn't Swedo's study on about 30? Haven't we heard this was too small a study to be significant? Won't limiting it to 50 children give the naysaysers the same argument? Seems as though you wouldn't have to look to hard to find more than 50. uggh I guess its a start
  22. I am glad you are healing. We are still riding the roller coaster but the hills are not as dramatic (as long as we are on abx at least) I have found that I have entered another phase though. One of acceptance that we have had to change. Our lives will never be the same. There are no quick answers. Taking everyday one at a time, and testing/treatments one step at a time has really helped our whole family- including dd. While she is still sick, she lives a pretty normal life, with special differences- and a few more dr visits than most kids her age. I have found that letting her be a kid, while
  23. dont have whole lot to add except being aware of early signs. The nurse may not be in the best position to recognize these, but they may be able to educate teachers. My dd's teacher sent home several notes regarding a decline in my daughter's handwriting. Her math skills were also rapidly deteriorating. This was a retrospective "ah ha" moment months later. If teachers have the knowledge, they may be able to ask parents pertinent questions and help direct them to seek medical attention. Many parents have never heard of PANDAS. While the handwriting and math deteriorated at school (something I w
  24. forgot to mention, my dd's pain was mostly in the sinus area, if I put her in a dark room and massaged her sinus it really helped
  25. My dd's headache usually lasted 3-4 days, milder each day maybe very mild headache for a few days after that. Ibuprofen around the clock really helped. They are all different though.
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