Does this sound reasonable or no?

[clickinmom]

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

[qannie47]

Sometimes it can take several weeks/does of the same medication before you see results. Although, you have already seen results...just not lasting. This tells me that you are on the right track. I would continue with same abx, maybe for up to 6 weeks, (which can be standard for Pandas). The abx does three things, wipes out the infection, works as an anti-inflammatory in the brain, and can shut down the immune system, which is the problem in the first place.

 

Good medicine takes it slowly. You need to let less stronger meds try their thing first. By doing so, you are building a history. Finding out what works and what does not. Going to the big dogs right off the bat is not going to garnish you any information. Medicine does not want to go to go to stronger meds if they do not have to. Perhaps even cloudy the results.

 

As a parent, this was a difficult thing for me to wrap my brain around, "The wait and see approach". But it is necessary in order for you to fully understand your child.

 

You are pointing to a tick bite. That seems to be the root cause.

 

That being said, I see no harm in running test that are not affected: false neg/pos by the medications the child is on.

 

I do no see any thing wrong with your doctors approach. Just good medicine.

 

Best of luck

[chubbermommy]

You mention that she was tested for Lyme, and EBV and CMV - what about other co-infections associated with Lyme?

[rowingmom]

Our daughter's bone pain and PANS symptoms (including Tourette's-like motor/vocal ticcing and Asperger's-like behaviours) were the direct result of her Bartonella hensalae infection. Bartonella has an affinity for endothelial tissue and bone marrow.

 

Infectious Disease doctors will treat by CDC guidelines. No more than approx. 1 month of probably a single antibiotic. Not at all useful for these types of infections. When the child is not cured by the short dosage they will claim that the problem is psychosomatic. They are so wrong.

 

We had the same good response with a 10 day dosage of PenVK for strep throat. All symptoms, including bone pain, IBS, and Tourette's resolved, only to return within 4 days of abx withdrawl. A second prescription of PenVK was only effective for the first 5 days, after that symptoms returned even though DD was still taking the antibiotic.

[clickinmom]

No, she wasn't tested for co-infections. Her pedi is convinced none of her symptoms are related to the tick bite.

[nicklemama]

As a mom who has Lyme and a PANS son with Lyme, I think her symptoms are directly related to the tick bite. Standard lab testing for Lyme is notoriously inaccurate. I would also repeat everything rowingmom says.

[rowingmom]

"Her pedi is convinced none of her symptoms are related to the tick bite."

 

As was ours. The response of our PCP was that symptoms were psych related because there were no obviously abnormal values revealed in the routine blood tests. He refused to test for infection claiming that I had been "researching too much", and that my questioning of possible bacterial infection was ludicrous. Headache, pain at the base of the skull, light and sound sensitivity, behavioural changes are all text book symptoms of encephalitis - you would think a doctor would know this, ours didn't. I requested a referral to a pediatrician.

 

Our pedi found positive ANA titer's (indicative of connective tissue autoimmunity) but other tests for lupus, crohn's etc. were negative. She was stumped. I was told our daughter's symptoms of encephalitis were psych related because she didn't want to attend school and we were offered clonipin and Ritalin for ticcing and ADHD. It was also suggested that I use spanking whenever symptoms arose.

 

When I returned to both doctors with positive test results for bartonella hensalae through the Igenex lab I was told that the test was a false positive and that the lab was not reputable. They refused to help. Not even to retest for bartonella themselves through a "reputable" lab. I was scorned for "researching" because, after all not being a medical doctor, I was incapable of understanding any of this myself.

 

I will never return to either of these two doctors. Just because they have a whole lot of post graduate education does not make doctors infallible. Two doctors completely missing symptoms of encephalitis; this was a game changer for me.

 

Why could your daughter not have become infected before the tick bite? She has been outdoors, exposed to animals and biting flies, has she not? She wasn't aseptic before the tick bite, no one is.

 

Perhaps her infection(s) happened previously and her immune system was able to handle it/them for some time.

 

If something happened - the bacterial/parasitic load increased through successive exposures, her immune system was impacted by a vaccination, exposure to pesticides, exposure to other organisms, or (as in our case) a traumatic incident - that decreased her immune competence, symptoms would then manifest.

 

Many people carry the infections I mention and do not show symptoms of illness. Exposure to bacteria is not the main reason for infection and symptoms. If it was, there would be no one left on earth because we are all exposed daily.

 

A poorly functioning immune system and an inability of the body to detoxify in a timely manner results in an overload of both bacteria and their metabolites that we see as symptoms.

 

This is a hard one to wrap your head around, because we have been conditioned to believe that mainstream allopathic medicine is the only politically correct type of medicine practicing at the moment (the rest are deemed quacks). That nutrition (I'm talking evolutionarily appropriate and chemical free) is not as important as pharmaceutical drugs, that the immune system isn't capable of handling infection without abx, vaccinations and other medical interventions. That if you are asymptomatic, you are aseptic and not carrying bacterial/viral/parasitic loads.

 

There are other paradigms out there.

Edited July 1, 2014 by rowingmom