Priscilla

Just a thought on this one, dogs do carry/ contract Lymes, Lymes causes autoimmune issues

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 nights of profuse sweating, but what has sparked my interest now is a rash like that periodically surfaces on my shoulder blades and back of my arms. It seems to be little scratch, scabs, and it does itch- does the bartonella rash itch? I have put off doing anything for myself, been very concentrated on dd, I can't afford the igenex testing for me now- but may need to do something. So again, does anyone know if the bartonella rash itches??

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.

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.

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!!)

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.

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 hurting herself with her compulsion, she does some kind of pressing in her mouth and she also showed me a huge ulcer under her tongue and said that is what she is doing to herself, so please don't say the word. So the question, can I really call that a nightmare??? since it is so OCD related... anyone else have these sort of "nightmares" as a herx??? Trying to possibly get her into an intensive outpatient OCD treatment program at UCLA, but I am afraid they will try to push the psych meds on us, and may not keep us there if we don't take them. I am not willing to add them to the equation at this point. I also saw her OCD worsening before starting the zith, and I am not sure that that low dose would spark such a herx so fast. Any thoughts???

if you know where you had the MRI done, you may be able to probe them for a copy

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.

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 an insensitve %$&^* (excuse me please) There is no room for you to consider the opinions of people like that in your life- just throw those comments out, hard as it is, just write her off as the most intellectually challenged person you have ever met!

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 mothering because of this horrific illness, and this just adds to it when friends say we just don't want them at your house, she seems ok here, other than her tics, anxiety at times (so they do see something!) Its just frustrating being judged, and it hurts me for my daughter that she is looked at as behaviorally challenged. She does have a very sweet side, and I wish her sickness (mainly OCD right now, tics not present for over 2 weeks) didn't rule her so badly.

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 face, or runs to the bathroom- may not seem to out of the ordinary to you UNTIL YOU SEE HER DO IT 24/7 EVERYTIME she hears the word. Maybe my chid has a harder time with me because she knows how much I love her, how I am trying desperately to get her well, yet she is still suffering- Doesn't a child look to the love and strength of their parents to help them feel better, should we be surprised if they have a little anger because we aren't able to fix them and stop the suffering? I feel like people just don't understand that I didn't CHOOSE to have a child that is sick, I don't choose, to have to spend my time researching, driving to doctors appt, restricting diets, I don't choose to spend our money on dr's, meds, co-pays, deductibles.... that money would be much better spent on a trip to Kauai (or a move to Kauai at this point), I don't choose to have my friends tell me my daughter is a bad influence on their children (very hurtful. None of us choose this, WHO THE ###### WOULD!!!!!!! Maybe that is the best response for all those "loved ones" that judge us. Ask them if they really believe this would be the life you would choose if given a choice????????

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. i plan to be conservative adding in other meds, will try to update.

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...)

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

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 as much as possible BEFORE even doing the test.... read cure unknown, did some research, found a reputable LLMD- well, we got a positive result. We are going in for our first appt post test results monday. This has been such a roller coaster so I am not sure what to expect. I will keep posting, and if lyme treatment proves to be the process we have been waiting for to see her get well, I will be shouting it from the roof tops. My point is, educate yourself about lyme and see if it makes sense. Going into the appt I was about 50/ 50 thinking she may or may not have it. Praying we are finally getting the right treatment!

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

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). After reading "cure unknown", it makes sense that an underlying lyme epidemic could be actually causing PANDAS, along with alot of other ills. I would be very curious to see what research could find on the link between lyme and PANDAS. So many of our children our being diagnosed with it, and like I said, the cluster is interesting to me.

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 response to abx. Even though she has improved after 4 ivig, she is still dependent on abx and not as well as she should be, so we dug a little deeper- and I got news she has a positive lyme test just this week. I am still processing that one, not sure which direction we will go with treatment yet. But I will keep posting about her progress. I have been very skeptical of lyme, but I have been educating myself, read "cure unknown" and I am suspicious of why so many PANDAS, kids are clustered on the east coast, where there is a much heavier wooded area. Seems we are so far behind in both diseases, but I am begining to wonder about the link.... Sorry for rambling.. I really just wanted to say that we share the screaming issue with you and understand how difficult it is. Prayers to you.

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 waiting. Depending on those results, we may go for another ivig. We suspect she has had this for several years, with the very severe exacerbation last April. I feel like even though the ivig hasn't taken away all the abnormal things, it has brought her personality back to normal between the tics and ocd. She is now the sweet little girl I knew at 3 yrs, It was subtle, but looking back, I can see that she was sicker than we knew for a long time- because she just wasn't herself. I truly feel the ivig has helped us/her regain alot of happiness, balance in our lives.

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

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 I do all the PANDAS stuff, and only involving her when necessary (to take abx or have labs drawn),she has really decreased her stress level and it helps her improve- she will even open up about her issues here and there (she explained last night that she is really going to start focusing on overcoming her fears- makes me so proud). So my point is, for us, a level of acceptance along with pure faith, has allowed us to actually turn a corner and still live a happy life. Best to you and your family.

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 wouldn't have seen without teachers input) Other things were surfacing at home that made me think something was going on. But these things weren't noticed by the teacher. My point is, the child has a better chance of getting caught early if someone at school can validate a change going on. May just give the parent that added confidence that they need to seek help. Thanks for doing this.

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

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.