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DS' Blood Test Results & DD11's Well Visit...(sorry, long)


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I just returned from the pediatrician's office. I was there on Monday with ds9 who has had 'lyme-like' symptomology for two weeks now and presented with a suspicious bulls-eye 'kind-of' rash last weekend. We were there today for dd11's well visit but first we went over ds' blood test results.

 

Well, he tested positive for two bands of lyme's which according to the ped, means he does not have lyme disease. :banghead: His white count is LOW - indicating that his body is fighting a viral infection - really? But, apparently, not lyme's. :banghead: He tested negative for mono and he is not anemic. So, the fatigue is not from either of those things. BUT, ACCORDING TO CDC PARAMETERS, NO LYME'S. But, she did write for the doxy on Monday; I traded her blood work for a doxy scrip. Ridiculous in my mind.......I would have expected her to say something like: 'It's good he is already taking the doxy.' But, no.

 

He has his well visit next week. PED said we will re-assess his symptomology next week. WHY? I wanted to ask. He is on the doxy - we disagree as to what it is. What is there to re-assess? I brought him in with what any reasonable individual would say resembled a bulls-eye mark. She was not impressed with it. :confused:

 

With Lyme's, I tend to take anything the ped says with a grain of salt. We have a protocol with which I am comfortable. I do have LLMDs that we can see if need be, but right now, I am okay with what we are doing. We will most likely, however, make an appointment and try to see one down the road.

 

I have come to the conclusion that Lyme's has become just like everything else, i.e., education, nutrition, parenting.....you name it. Some 'group,' 'agency,' or whomever has decided WHEN an individual (that would be you or me) needs to take action. Until then, we are supposed to sit and do, well, nothing......unless, like a great number of people on this board, one decides to take matters into their own hands and do what she/he/they thinks or knows is best; I see homeschooling as an example of that. And, I do observe that at least where I live, many, many people are perfectly willing to abrogate whatever rights they have, and let some governing agency do the thinking for them.

 

The pediatrician also spent about 3-5 minutes questioning DD11 about 'social activities': 'who do you play with?' ANSWER: 'My brother and sister. I have play dates with my friends from private school. I play with kids at the pool. We have made friends with other families who homeschool and we have playdates with them. I am in two co-ops and I have friends in those. I am invited to birthday parties for all of those kids. Oh, I have friends in lacrosse, choir and handbells and I go to birthday parties for all of those friends too.' DOCTOR: 'What about the kids in your neighborhood?' dd11's ANSWER: 'We don't live in a neighborhood. There are a few kids on our road, but not near our house. We see them at the pool.....sometimes. They are in daycare from first thing in the morning till the evening in the summer. And at before and after care during school. My brother, sister and I are around. They are not.' DOCTOR: 'How much television do you watch in a day?' DD11's ANSWER: ' We don't watch tv. We don't have cable or satellite or FIOS. We haven't had tv in......how long now, mom?' ME: 'Six months tomorrow.' DD11: 'Yes - no television for six months. We don't miss it. Mommy and Daddy bought tons of games at the homeschool conference, and M and E and I play lots of games. And, we paint, and we read, and we walk the dog and play with the dog. Oh, and we have started knitting Christmas presents. And, we help make dinner. And we spend time at the library.' The pediatrician (who has been seeing us now for four years) looks at us like she doesn't know what to make of us.:001_huh:

 

Good grief! Are we THAT atypical? Really?

 

Last night DH and I went out to dinner for my birthday. It was nice - we laughed, we talked, we had fun. We also like to watch people. Our table at the restaurant was surrounded by four other tables. All families with at least two teens at each table (maybe 13 and older). EVERY TEEN at EVERY TABLE (and dh brought it to my attention) ate with their cell phone in their hand. And would put down his/her fork to text. IN THE MIDDLE OF DINNER. I am willing to allow (having raised two teenage daughters already) that one is willing to put up with just about anything to enjoy the privilege of having their teens join them for dinner, BUT what I observed was NOT families having dinner out and sharing and exhanging. It was 4 or 5 people sitting at a table eating food and the non-parental units were engaged in communication with someone on the other end of a device. They were disengaged......is that the word I want? Dh used a word or phrase and I cannot remember it. The parents did not appear to do much talking.

 

So today at the peds office, I wondered if the pediatrician questions the families I saw at dinner last night the way she questioned us (you know, that oddball family who homeschools in Fairfax County where the award winning schools are).

 

Things seem to be so screwed up.:001_huh:

 

That is all.:glare: EXCEPt FOR THIS:

WAIt A MINUTE: I know why the peds questions 'bothered' me........I honestly (just realized this) do not EVER EVER EVER remember dc being asked those questions when all three kids were in private school. At a visit last year when we had started h-schooling, the ped asked questions that I thought odd and I DID ask her about the nature of the questions. She did respond that she was concerned that since we were now homeschooling, perhaps the kids would be lacking social interaction and contact with other kids. YES - THAT's WHAt HAPPENED! We were living in the hotel (had just moved in) and things were CRAZY, and I didn't give it more than 2 minutes thought. But THAT is why I thought it odd today.:svengo:

Edited by MariannNOVA
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Lyme story - Arrrrgh! :banghead:

 

Pediatrician Socialization story - :lol: Your family activities and social outlets sound lovely. (And why do pediatricians think that this is any of their business anyway?)

 

Dinner story - I'm glad that you had a nice birthday dinner actually socializing with your dh. I've noticed the same phenomena regarding family dynamics. I've even seen people walking side by side in the mall and each is talking on their own cell phones and not to each other!

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... I wondered if the pediatrician questions the families I saw at dinner last night the way she questioned us (you know, that oddball family who homeschools in Fairfax County where the award winning schools are)....

 

Honestly, probably so. Her questions seemed pretty standard. :) Perhaps your dd's answers were longer and more involved and perhaps different than the usual answers, but the questions were quite normal.

 

Our ped asks similar questions, though he always remembers what activities the kids are involved in or mentioned at a previous visit, so he asks specifically about them ("How did your team do at the Lego robotics competition?" "Did you enjoy your recital?" etc)... Part of it is just getting to know the kids and having a rapport with them -- and part of it is, indeed, making sure that they aren't showing signs of depression or isolation (things that he knows perfectly well are issues with kids in public or private school as well) or engaging in risky behaviors...

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Things ARE screwed up. Wolf and I eat with the kids 6 nights out of seven. Every now and the we'll order pizza and then we'll eat while watching a movie together...its a treat once in a while.

 

Apparently, we're weird. I read parenting articles, and there's always the suggestion of eating dinner as a family :001_huh: Obviously, its not happening 'normally' if it needs to be suggested.

 

On another board I used to frequent, I've been accused of making Diva my 'slave'...on the basis that she does dishes and helps make supper. :001_huh: She's 11. Is doing dishes and helping out THAT wrong? Oh, and she walks our dog too. *gasp*

 

I hope your ds recovers soon :grouphug:

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Lyme story - Arrrrgh! :banghead:

 

Pediatrician Socialization story - :lol: Your family activities and social outlets sound lovely. (And why do pediatricians think that this is any of their business anyway?)

 

Dinner story - I'm glad that you had a nice birthday dinner actually socializing with your dh. I've noticed the same phenomena regarding family dynamics. I've even seen people walking side by side in the mall and each is talking on their own cell phones and not to each other!

 

 

YES! Precisely! When we came out of the restaurant, it was pouring. We decided to sit in the vestibule of the restaurant and wait for it to let up. We were surrounded by couples and families and WE WERE the only people who were NOT TEXTING! AMAZING!

 

Oh, and I don't know why it is the peds business but I do know that even the amazing pediatricians I used for my older dds (30 years ago - when I would pay $40. for a well visit b/c why would anyone bother with insurance?) - well, their questions weren't as nit-picky and intrusive but they did ask. But they asked b/c they were always imparting good advice to the kids as part of asking: i.e., wearing seatbelts, not smoking, and as the girls got older (young teens) not drinking, not getting in a car EVER with anyone who had been drinking - went so far as to write down their home phone numbers and tell the girls that if they ever went anywhere and kids were drinking, they were to call either Dr. S or Dr. B (if they didn't want to call home) and Dr. S or Dr. B with their spouses would go get them and drive them home. The good old days.

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Honestly, probably so. Her questions seemed pretty standard. :) Perhaps your dd's answers were longer and more involved and perhaps different than the usual answers, but the questions were quite normal.

 

Our ped asks similar questions, though he always remembers what activities the kids are involved in or mentioned at a previous visit, so he asks specifically about them ("How did your team do at the Lego robotics competition?" "Did you enjoy your recital?" etc)... Part of it is just getting to know the kids and having a rapport with them -- and part of it is, indeed, making sure that they aren't showing signs of depression or isolation (things that he knows perfectly well are issues with kids in public or private school as well) or engaging in risky behaviors...

 

 

I agree with you --as to the nature of the questions -- and you make a good point: the questions should go beyond ritual to relationship (or rapport as you so aptly put it). Your ped clearly makes an effort - I guess my point is that I don't think mine does. Years ago, the peds I used did have a rapport, and the questions were conversational rather than rote. In defense of our ped, I do know that insurance nowadays give them like 9 minutes, 17 seconds per patient....so I do understand their dilemma. Your ped obviously makes notes in your dc's file......something my sister (who is an MD does) - and I appreciate that they take the time to do that sort of thing so from one visit to the next, it does not seem like they barely remember us.

 

WAIt A MINUTE: I know why the peds questions 'bothered' me........I honestly (just realized this) do not EVER EVER EVER remember dc being asked those questions when all three kids were in private school. At a visit last year when we had started h-schooling, the ped asked questions that I thought odd and I DID ask her about the nature of the questions. She did respond that she was concerned that since we were now homeschooling, perhaps the kids would be lacking social interaction and contact with other kids. YES - THAT's WHAt HAPPENED! We were living in the hotel (had just moved in) and things were CRAZY, and I didn't give it more than 2 minutes thought. But THAT is why I thought it odd.

Edited by MariannNOVA
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Just wanted to add my own dismay at your dr's dismissal of apparent Lyme symptoms. I had Lyme about 20 years ago--back when Lyme was first really being talked about. Info was not nearly as widespread as it is now. I had just moved to a new state, so had to see a brand new doc. I had the bullseye. It wasn't quite so exactly a bullseye, so the doc grabbed another doc to look at it. They agreed to test me and put me on doxy. I tested negative but like your ds, it had only been a couple weeks. IIRC the test won't give accurate results if you've been infected for less than 6 weeks (?). Anyway, it's a fairly long time before you'll test positive because your body hasn't developed the titers that the test detects. (If I'm misspeaking I hope someone will correct me as I'm recalling this from many years ago. Tests may have improved since; I haven't kept up with the developments in Lyme.)

 

You'd think that with all we've learned about Lyme the doc would be a little more forward-thinking in your ds's treatment.

 

Between poor treatment and intrusive questions, I think I'd be looking around for a new doc.

 

Cinder

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Just wanted to add my own dismay at your dr's dismissal of apparent Lyme symptoms. I had Lyme about 20 years ago--back when Lyme was first really being talked about. Info was not nearly as widespread as it is now. I had just moved to a new state, so had to see a brand new doc. I had the bullseye. It wasn't quite so exactly a bullseye, so the doc grabbed another doc to look at it. They agreed to test me and put me on doxy. I tested negative but like your ds, it had only been a couple weeks. IIRC the test won't give accurate results if you've been infected for less than 6 weeks (?). Anyway, it's a fairly long time before you'll test positive because your body hasn't developed the titers that the test detects. (If I'm misspeaking I hope someone will correct me as I'm recalling this from many years ago. Tests may have improved since; I haven't kept up with the developments in Lyme.)

 

You'd think that with all we've learned about Lyme the doc would be a little more forward-thinking in your ds's treatment.

 

Between poor treatment and intrusive questions, I think I'd be looking around for a new doc.

 

Cinder

 

Thank you for writing. Based on what I know from dealing with chronic lyme's with my dd30, everything you say rings true with me.

And, as another poster also said, yes, I think I must begin looking for a new ped's office.

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Oh, Mariann. :grouphug: First of all, belated happy birthday. I'm glad you enjoyed your dinner and your actual, physical, present interaction with your DH. My priest talked about the texting thing recently, mentioning the need to be "connected" with the world at large while being disconnected from actual breathing people in the same room. I honestly feel sometimes like checking email and all can become incredibly addictive (I don't text, except occasionally with DH, but I do sometimes have to remind myself that no earth-shattering news will arrive by email at that. exact. moment, so I know that tendency). Scary stuff. Okay, I'll stop there before I get onto a soap box.

 

Now, I really thought 2 out of 3 bands was positive for Lyme. Maybe I'm rusty. That's quite possible. But as I've said before, as you've said before, a flat-out negative blood test does NOT mean there isn't Lyme disease. I've also heard, as Cinder mentioned, that it needs to build in the system, making a test before 6 weeks useless. Furthermore, the symptoms can and do appear before that 6 week period. So, you do what you need to do--continue the Rx. Perhaps start looking for a new ped (preferably one a little more educated regarding homeschooling :glare:).

 

I'm sure it all struck you as even worse at this visit, simply because of your fear and frustration with the whole situation. So, more :grouphug:. Congrats to you on valuing the relationships within your family and on having a son who can answer questions like your doctor's with honesty and grace. Keep hanging in there.

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Banging my head on the keyboard for you with regard to the lyme. I'm glad you are knowledgeable about it and can do the right thing for your son.

 

Thank you - you are very kind and right now I need a little kindness. :)

 

Oh, Mariann. :grouphug: First of all, belated happy birthday. I'm glad you enjoyed your dinner and your actual, physical, present interaction with your DH. My priest talked about the texting thing recently, mentioning the need to be "connected" with the world at large while being disconnected from actual breathing people in the same room. I honestly feel sometimes like checking email and all can become incredibly addictive (I don't text, except occasionally with DH, but I do sometimes have to remind myself that no earth-shattering news will arrive by email at that. exact. moment, so I know that tendency). Scary stuff. Okay, I'll stop there before I get onto a soap box.

 

THAT is the word my dh used - and he may have used it as part of a phrase - but it was something like the 'compulsion to be connected to someone who is not there' - or something like that. I've read alot about present moment awareness and trying to get better at it over the past 16 months and I'm confused as to 'present moment awareness' (which I think is a healthy concept) and this issue of being disconnected with whom we are present can be a good thing or an acceptable thing or something which clearly is going on and perhaps needs to be curtailed.

 

Now, I really thought 2 out of 3 bands was positive for Lyme. Maybe I'm rusty. That's quite possible. But as I've said before, as you've said before, a flat-out negative blood test does NOT mean there isn't Lyme disease. I've also heard, as Cinder mentioned, that it needs to build in the system, making a test before 6 weeks useless. Furthermore, the symptoms can and do appear before that 6 week period. So, you do what you need to do--continue the Rx. Perhaps start looking for a new ped (preferably one a little more educated regarding homeschooling :glare:).

 

I've spent the past hour going over the results line by line (I have a copy of the results) with my dd who is in medical school. Right now, i would like to call the pediatrician and have them put Dr. who we saw today on the line, and I would like to know what the $%$$##@@# she thinks she is doing. The papers I am holding in my hand tell me clearly which bands DS tested positive in (I am so sorry to bother you with this - but writing it helps me think it out more clearly). The papers states clearly that a positive result in two of the following bands (band numbers are 23, 39, or 41) and ds has a positive result in two of those bands. The paper says it. I know poo about reading test results, but even I can see what the paper says -- when I shared this with my dd, she went ballistic. The pediatrician sat there and said she doesn't know much about reading 'these things' - and proceeded to ignore it, clearly not look at the second page, and that was it. My dd is on the phone with her LLMD right now getting an appointment set up and confirming with them that the supporting naturopathic supplements that he is taking (per my dd) along with the doxy are what he needs to be taking. We will see the LLMD at the end of September. Thanks for listening.

 

I'm sure it all struck you as even worse at this visit, simply because of your fear and frustration with the whole situation. So, more :grouphug:. Congrats to you on valuing the relationships within your family and on having a son who can answer questions like your doctor's with honesty and grace. Keep hanging in there.

 

Thank you! Thank you!:)

 

I agree with finding a doctor who has dealt with many cases of Lyme disease. From what I've read, it can be tricky to diagnose accurately. Hope you get some definitive answers soon.

 

Thank you -- we have an appointment with my dd's LLMD for the end of September. In the meantime, ds' will take his antibiotics and his little body will be supported as it should be. I will have time, also, to find a new pediatrician.:)

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Thanks for reminding me how much I love our pediatrician. The fact that they homeschool their 7 kids helps. :D He's also very observant and looks at symptoms besides blood work. Hope you get it all figured out.

 

 

So, the first thing I do is look to see where you live b/c I am hoping you live in northern virginia, but, alas, you don't. :glare:

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I, personally, think the doctor did a GREAT job asking all those questions. It's important to know these things for an accurate LYME'S diagnosis, isn't it?

:cursing:

 

I really hope your son recovers quickly and fully, Mariann. I'm really sorry.

 

ETA: Your son's "bullseye" sounded just like my ds's. It was weird, very dark purple, white in the middle, black speck in the middle of the white. My ped was alarmed and even had another come see it. Neither had seen such a thing before and like I said earlier, they called for weeks to check up on my son.

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I agree with those who said that the lyme disease diagnosis can be tricky. You have to have it for a while for it to show up in a blood test. My neighbor was told she did NOT have it this spring but a couple of weeks later when she was not feeling better another blood test proved it was positive after all. We live in an area with a lot of tics and last summer I had a painful red, swollen area on my upper thigh which did not look like a bull's eye but it happened a couple of days after sitting outside watching the kids swim. When I went to the doctor she told me she didn't think it was lyme disease and was trying to call it a hair follicle infection. She left the room and was gone for a long time and then came back and told me she was treating me for lyme disease???!!! I caught the bite early on and it was too early to develop the typical bullseye rash (that takes at least a week). And it did have that black spot in the middle...I took one course of the doxy and now wonder if that was enough. I still get really achy, tired, etc. I would push for another test or find another doctor. I also agree that the doctors questions are getting too intrusive. And once they are older I don't like when they ask me to leave the room....my kids want me there. Go with your gut...mom knows best!

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