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clickinmom

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Everything posted by clickinmom

  1. We waited over a month to get into an ID doc and she basically laughed in our faces. She said our daughter will "probably just be a sick kid who gets everything" and insinuated that we've done her a disservice by not putting her in daycare (I'm a SAHM). She said that her symptoms were caused by recurrent viral infections and refused to run any testing (of any kind - to rule out tickborne illness or anything else). She said there was no way a tick bite could have had anything to do with any of what our daughter has been going through. So that was a waste of time. :/
  2. We're in Nebraska. She was tested for Lyme a few weeks after the bite and was negative. She's had two rounds of antibiotics - 24 days total - with a couple weeks between courses.
  3. Is there someone who can PM me names of LLMDs in my area. I can't find that there are any in my state.
  4. When combing my daughter's hair tonight, I noticed a large bump on the top of her head. It's at least 2" in diameter and as hard as her skull. It's right in the vicinity of the tick we found attached two months ago. She's had multiple swollen lymph nodes and currently the most prominent is behind her ear. Her doctor looked at it a week and a half ago and put her on antibiotics. She finished the 10 day course yesterday. She has an appointment with an infectious disease specialist at the end of the month. It was the soonest they could get her in. With the lump on her scalp, I'm more convinced than ever that all her symptoms are related to the tick. But is there anything I can do in the meantime before the ID appointment? Are hard lumps like these common after tick bites? Her pediatrician is convinced the tick bite has nothing to do with what's been going on. :/
  5. No, she wasn't tested for co-infections. Her pedi is convinced none of her symptoms are related to the tick bite.
  6. I posted before, but here's the background again: DD, age 3, started having bone pain and low grade fevers in December/January. She's had X-rays that were negative and her bloodwork has been normal. At the beginning of May she had a tick bite on her scalp. We don't know how long it was there. A week or so later she started getting more sick - extremely fatigued, clingy, overly emotional, didn't want to play, just laid around, hardly ate, asked to take breaks from playing, had random rashes, had sores in her mouth, complained constantly of aches and pains, had notably swollen lymph nodes - just not herself at all. More bloodwork - everything was normal except for her ldh, which was elevated. She had an ultrasound of her abdomen and chest and leg X-rays - everything was clear. A few weeks later she developed an upper respiratory infection and was put on antibiotics - the UI symptoms resolved within a few days and then the other symptoms began improving. She finished the 14 day course two weeks ago and within three days the fatigue, clinginess, lack of energy, etc started to return and progressively got worse. In addition, she developed a stutter literally overnight and started sucking her thumb (which she's never done in her life). I took her back to the pedi last Thursday due to a large, hard lump behind her ear and it (along with several smaller lumps in the area) were determined to be lymph nodes and her doc put her back on the same antibiotic. She started that day. As of yesterday/today, she's back to her normal self again. It's amazing. Like night and day. Her doc wanted an update today and I told her about the improvement. My question is this: she wants to finish out the course of antibiotics and then wait to see if she declines again before seeing infectious diseases/looking into the source of whatever infection she seems to have. I'm not sure how I feel about that. I'd like to know what's causing the symptoms. And I kind of feel like it's a waste of time if 14 days on this dose of this antibiotic didn't fully kick it. Why not try something stronger? Or try to figure out the source/cause and then treat? Is her approach reasonable and I'm overreacting? Or am I valid in going over her and making an appointment with ID tomorrow? (And we'll probably have to wait a couple weeks to get in anyway). Also - she was tested for Lyme, which was negative. Also EBV and CMV, which she had antibodies for but they weren't high enough to be considered current infections/reinfections. TIA
  7. rowingmom - could you explain a bit more what you mean about her having the infections prior to the bite? I don't really understand how Lyme/tickborne illness and coinfections work. Like, could she have had a different infection that was then exacerbated by the tick bite? I took her to the pedi today to have the lumps behind her ear looked at. She thinks they're just lymph nodes, but doesn't know what is causing them to be enlarged. She put her back on antibiotics to see if they seem to make a different again and we'll reassess Monday. She thinks we should probably see an ENT as our next step (to rule out some sort of infection in her sinuses I guess? Though she's not having any cold/sinus/allergy symptoms other than the swollen nodes and some snoring) and maybe infectious diseases. I agree we need to have her seen by a specialist, but I don't know that an ENT is the answer. So I'll probably push for I.D. or immunology. Any insight? Thank you. I feel like it's time for a specialist, but
  8. Thank you for the responses. I'm hesitant to believe it's all related to the tick bite. The symptoms have been going on since January and she didn't get the tick bite until the beginning of May. The tick bite certainly seems to have possibly exacerbated her issues, though. Unfortunately there are no LLMDs in our area (Midwest). Would our next step be an immunologist in the meantime? There is a local doc on the PANS/PANDAS database. I looked up the bartonella rash and hers didn't look like that. It was red and non-raised, but not in a linear pattern. How would I go about getting igenex testing? I plan on taking her to the pediatrician tomorrow to have the lumps behind her ear examined. They've gotten bigger and she complains of them bothering her when she wears her hearing aid.
  9. Thank you for adding me to the group. This will be long, so bear with me. My daughter has been exhibiting a whole host of strange and troublesome symptoms for many months now. It started with intermittent pain (mostly in one of her legs, but also in her back, buttocks and arms). Around the same time she started insisting on smelling everything she'd come into contact with and licking inanimate objects and having a low-grade fever (99.3 - 100). Her pediatrician ordered bloodwork and x-rays of her leg and everything came back normal. The issues persisted and she was referred to a pediatric orthopedic specialist. He reviewed the x-rays and recommended two weeks of round-the-clock ibuprofen to rule out an inflammation issue. We saw no change. In the meantime, she continued to get more sick. She was lethargic and just wanted to lie around, which isn't like her at all. She asked to be carried all the time. She was extremely emotional. She started waking up completely soaked in sweat. The low-grade fevers persisted. Her lymph nodes were visibly swollen. She began to have issues sleeping at night and was scared to sleep alone. She suddenly became terrified of bugs and would scream and shake at the sight of a fly. I took her in and the doc ordered more bloodwork. Again, it was normal (save for her LDH, which was 626, but the doctor said that wasn't extraordinarily high?). She developed some cold symptoms and began gasping and wheezing in the middle of the night. She wasn't getting better from that after several days, so her doctor put her on a two week course antibiotics for an respiratory infection. The respiratory symptoms resolved and we saw a notable difference in her behavior/well-being as well. She's now been off of the antibiotics for a week and things are getting progressively worse again. In addition to what I mentioned above, here is a list of some of the other things we've noted: -abnormally clingy -sudden onset of irrational fears -sleeplessness/frequent night waking -pimply rash (on face, legs, arms) -non-raised streaky red rash -unexplained hives -bathroom accidents -strange outbursts of growling, squealing -"bipolar" behavior - giddy one minute, crabby the next -dizziness -complaints of mouth and throat pain -easily fatigued when walking -repeatedly sticking tongue out/scraping on teeth -sores in mouth -irrational meltdowns (over doing things out of regular order, not getting to both hug and kiss people leaving the house, her spot at the table) -occasional limping/abnormal running gait -hard lumps behind one ear -strong urine odor -very dark circles under eyes/dark eyelids -pale appearance -lack of coordination -sudden onset of stuttering and regression of speech (she does have a speech delay and hearing loss and has bi-weekly speech therapy, so we're especially conscious of changes to her communication) She's had blood drawn to test the following: ANA, uric acid, CMV, EBV, CRP, ESR, chem panel. Everything came back normal. (she has antibodies for CMV, which she had congenitally and also EBV). She had a tick bite in early May (though many of the symptoms started prior to that, she did get more ill after the bite) and she was tested for Lyme, which was negative. We've been focused on her swollen lymph nodes, fatigue and bone/joint pain and the doctors seem to be looking for an infection, but her white count has been normal with each CBC and is actually reducing and there's no indication of an area of infection. She had an MRI this week to rule out osteomyelitis and we don't yet have the results back, but my gut says that's not the issue. My cousin, whose daughter has an autoimmune disease, asked if we'd seen a rheumatologist. When we were chatting about my daughter's symptoms she suggested perhaps there was an autoimmune issue/component. I've been doing some googling and it does sound like maybe we've been barking up the wrong tree, so to speak, and we should have her seen by a rheumatologist. Her dad and I "just know" something isn't right, but with all the tests coming back normal we're starting to feel a bit crazy. So my question for you all is, does this array of symptoms sound like something that should be pursued with an specialist in autoimmune disorders? We just want our little girl to feel better and feel like we're hitting our heads against the wall. Thank you for your time in reading all that and any insight you can offer and experiences you can share.
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