any thoughts on these specific "tests"?

[sste]

Melbel, thank you! A few follow up questions. If the testing is based on antibody response, how does it distinguish between someone whose immune system successfully fought off the lyme and someone who has an active lyme infection?

Relatedly, after treatment can you tell if the infection is gone? Aren't there still antibodies hanging around?

Last, if you don't mind sharing, what did your family do for treatment? I don't mind pursuing a few weeks of antibiotics but perhaps more than that is required. I ask because if they are looking at each band, well the more you look the more you find in medicine IME so I would have to approach testing with an eye to treatment.

Thanks for your help and I am glad your family is recovering!

[Melbel]

Melbel, thank you! A few follow up questions. If the testing is based on antibody response, how does it distinguish between someone whose immune system successfully fought off the lyme and someone who has an active lyme infection?

Relatedly, after treatment can you tell if the infection is gone? Aren't there still antibodies hanging around?

Last, if you don't mind sharing, what did your family do for treatment? I don't mind pursuing a few weeks of antibiotics but perhaps more than that is required. I ask because if they are looking at each band, well the more you look the more you find in medicine IME so I would have to approach testing with an eye to treatment.

Thanks for your help and I am glad your family is recovering!

We desperately need more reliable Lyme testing both to detect new infections, as well as to tell when an infection is cleared. IgM bands tend to suggest a more recent or ongoing infection; IgG bands tend to suggest chronic infection or past exposure. Children born with Lyme are more complex because they are less likely to have a robust antibody response to a pathogen that has always been there. There can be a lag in when bands disappear after successful treatment (weeks to months) so a Western Blot is not a reliable tool as to when you should end treatment.

We treated with a combination of herbals and antibiotics, along with a clean, low inflammation diet, treatment of secondary issues (mito dysfunction, autonomic dysfunction, vitamin/mineral deficiencies), sleep and exercise. IDSA takes the position that you are "cured" from a Lyme infection after a few weeks of antibiotics regardless of duration of infection, immune health of the patient, presence of co-infections and genetics. A few weeks of treatment is more likely to be effective with an acute infection with prompt treatment. There is a growing body of credible, peer reviewed research showing persistent infection after antibiotic treatment. ILADS gauges treatment on clinical presentation and considers co-infections (which tend to be the rule, not the exception). Our son had a total of 7 infections, so we rotated his protocol to cover his infections. Some Lyme doctors like to treat for a month or two after symptoms end. Others use immune markers as a gauge.

There are a variety of protocols and approaches available (antibiotics, antiparasitics, herbal, homeopathic, essential oils, etc.).

[lmh2402]

thanks, guys. Beth, I took your advice and reached out the psychologist to ask about anxiety and attention issues. here's her reply.

"Anxiety and ADD/ADHD are best assessed by observation and report of individuals involved with the child (teachers, parents). I'll be paying attention to (DS') behaviors during the assessment to get a sense of his level of attention and distraction. There are also a couple questionnaires that I often ask parents to complete that address both of those areas. Even though the interview we completed together is autism focused, it also gives lots of information about areas of anxiety. There are ADHD "tests", but they aren't highly accurate, especially in younger children. We still rely more on reports by parents/teachers and, when the child is old enough, their report as well.

As for the other assessments, I've used all of them, and they are equally reputable. The DAS-II is nice because it includes domains to assess spatial reasoning, as well as verbal and nonverbal reasoning. Sometimes I opt for the WPPSI because I want to add some extra verbal reasoning tasks. The choices are guided a bit on (DS') behavior in session; depending on how well he sits at a table, and how long he can answer questions. I may shift gears to get the best out of him. In the end, many of the assessments guide us to the same place, but they have various strengths and weaknesses and my goal is to get the truest and most accurate picture of DS during the time we are working together.

Does that make sense? I'll explain more once we review everything, and I can explain why I chose a particular test over another..."

I'm just so worried that we're really not going to get any answers from all this. DS is like the car that is constantly banging and then you bring it into the mechanic and the noise magically stops.

ugh. we'll see.

anyway, thank you all.

[sste]

lmh, sorry if I derailed this a bit. Good luck with your testing!

Melbel, thank you so much. I am going to look into testing. In our case I think it is unlikely (DS's issues seem to be track issues DH and I had as children -- poor kid got both my bad genes for hand-eye-ball/coordination and DS's for handwriting, not sure about the speech). I def. think Lyme is underdiagnosed, the testing opens such a quagmire of uncertainty too unfortunately. But still think it is worth ruling out where I had this bite during pregnancy, right on my stomach actually, it was horrifying at the time!

[egoldber]

I wondered if there were any anxiety screening tools for kids that young. But I would absolutely make sure that she is aware of the depth of his fears and how they interfere with every day life. Also, many kids with anxiety test and perform very well in 1-1 circumstances with a trained tester. So she is right that parental and teacher reports should carry a lot of weight.

[hillview]

Following on to Beth's comment, DS2 was cited as anxious in his neuropsych eval. They didn't do a specific test on anxiety but did note that he was very anxious at several points in the evaluation. It ended up being helpful as a proxy for a 504 plan for him in private school (not an actual 504 since it was private but accommodations they made for him, not timing any work etc).