What age should my child be tested?

Hi Sniogra

I hope some of the awesome parents here will come along soon to help answer your questions.

In the interim, I'll suggest that generally, there is no bad or better time to test your baby, and waiting until he's "five and able to handle treatment" to test him makes absolutely no sense. But there is a specific approach for testing, which will help you obtain the most accurate results for a very inaccurate test.

LLMD
Also, I would start searching for a good Lyme Literate MD (LLMD) in/near your area. You can start a new thread titled, "Looking for an LLMD in XXXX" and indicate your geographical area. We have great moderators here and they have access to current sources for practitioners.

IGeneX
While you're waiting, you or YOUR MD (skip the ped for now) can order an IGeneX test yourself (appx $200) and have blood drawn for "Lyme Western Blot for IgG and IgM" at your nearest Labcorp (appx $100), and have Labcorp send the IGeneX test ONLY to the Palo Alto, CA lab to be processed (other labs do not do as comprehensive a panel analysis as Palo Alto).
www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf.

For adults, "provoking" a better immune response before testing has worked well. Current testing is very unreliable (you can read more about it on the "New to Lyme?" thread at the top of the page) and most are serology tests, meaning they are looking for antibodies to the infection created by a very well functioning immune system. If your baby seems symptom free, you may not have an issue. But for people who are very sick, their immune systems are compromised and ironically, they are the ones who usually test negative because their immune system isn't strong enough to create the volume of antibodies required by these very weak and insufficient serology tests.

But to help produce the best results possible, many people still "provoke" by taking abx or herbs to target the infection and/or support your immune system response over the life cycle of the infection (6 wks to be safe) and wait to test until then. Others will have to speak specifically to how well and how this works w/ a baby.

I'm not equipped like the parents here are to talk about possible tx for your baby, either, but there are nuances that are different from adults. And it's never too late to do a few things that increase health overall, which helps our immune systems stay dominant over these types of infections.

p

Post Edited (Pirouette) : 5/25/2015 11:44:37 AM (GMT-6)

I forgot to mention, my LLMD didn't test my son at first. He made a clinical diagnosis based on my son's symptoms and my history.

Pirouette said that Labcorp would draw the blood and send it to Igenex, but just recently I tried to do that and they said unless Labcorp was running the tests they would not do the draw. I called the local hospital and asked for the lab. They said they would do the draw, package the tubes and have it express shipped. They asked if it had to be frozen or needed any special handling. If this was necessary, I would need to make an appointment but otherwise I could just come in.

Here's a link to a thread I started a few weeks ago. It doesn't answer your questions specifically, but when I read the replies I was dumbfounded and so was my husband. In people's description we saw behaviors that we never understood, especially the rage. The only disclaimer I have is that I have not been tested yet, but my symptoms all fit Lyme and co-infections better than Fibromyalgia.

https://www.healingwell.com/community/default.aspx?f=30&m=3400509

As for your Pediatrician, I think you need to consider that they will always be the most conservative doctors out there. I've been through a lot with my Pediatrician. We've had two kids with chronic ear infections, chronic strep, ADHD, not enough weight gain, falling off the growth chart, one appendix, one with low thyroid hormone, one with low growth hormone, one autism spectrum disorder and fine motor deficits.

This does not include my son's very many Fibromyalgia symptoms. My Pediatrician referred us to the leading Pediatric Rhuematologist in our area which boasts two of the best medical schools in the country. He told me my son's symptoms were all in my head. I was taking an over the counter treatment and wanted to try it with him. She asked that we see the Peds Rheum first. He ran all the tests that I wanted run and this eliminated the major diseases that mimic Fibro.

At our next Peds visit, she said "Oh, I see you saw Dr X and there aren't any problems. Great" I told her I would not ever recommend him to anyone. He was rude and condescending and told me that all the symptoms were in my head. I said I would be starting him on the medication. She said, I can't recommend but you need to look for a scientific paper with a specific title. I did and it didn't apply but I do appreciate her help. In the end I needed to do what was best for my child.

My son is now 15 and no symptoms. Much has happened including my son's growth chart. He's no longer below zero, but is now the size of an average 16 year old boy.

There are many variables and personally I wouldn't have been able to do anything without my pediatrician. She was someone I can trust and she respected me as well. I was also her patient.

We are at two different ends of the spectrum. I have a teenager who seems to have no symptoms, but it's possible that they are mild enough (or have been around long enough that we think its normal) to not be noticed. You have a toddler. I still will have to work through my pediatrician because some one needs to sign the order for the blood tests.

One way to approach it could be that the test is a simple blood draw. Treatment comes later. You only want to have the baby tested, then you can decide where you go from there if the test is positive.

That's how I'm approaching my testing. My Rheumatologist said my file didn't indicate Lyme. I agreed that there was nothing in there about a rash, my research indicated that my symptoms all fit. After going back and forth a few times, he agreed to sign the order. He told me that he can't treat me, it's not his bailiwick. I said I wouldn't expect him to treat me, because of the controversy I wouldn't ever jeopardize his license. The last thing he said is you are going to have to find a doctor to treat you. I said I was already on it.

So I have the order for the test. While I'm waiting for the test results, i'm doing research and learning.

Doctors today don't have time to do our research. Generally, with these kind of illnesses, patients have to go out and find out new information and alternative treatments. We network, ask questions and pass on new information. This means a lot of times we are better educated about our disease, but some doctors don't deal well with that. Sometimes we need to be delicate in how we handle doctors.

After i get the results, I'll decide what I'm going to do for treatment. I'll also ask my Pediatrician to sign the order for the testing for my son. I have the advantage that my son is essentially an adult and if he tests positive he can use the same doctor as I do.

Pirouette is right that there are many parents who have asked the same questions. As you can see from my post linked above people will chime in and offer their experience. Ask questions.

Lastly, do worry like crazy. I know you feel like you have to have the answer immediately, but driving yourself crazy will only impede your own recovery. Slow down take a breathe. Get better. You know the safety briefing when flying on a plane: Should the oxygen mask drop, place your own mask on then if you are traveling with others who need help, help them on with their masks. Your baby needs you. Take care of you, then take care of your baby.

Thanks all for the wonderful advice. I know I need to be proactive about this...greenblue- at what age did you start noticing things were off? Were they physical, cognitive, or psychological issues that presented themself?

Very interesting.... My son also had many sleep issues for the first year of his life along w/ food allergies. He is also a little delayed in speech and has a hard time articulating words. I don't really notice any other symptoms...unless I'm being super paranoid about the fact he isn't running yet and at times it seems his legs are stiff when he walks. I'm going to continue watching him and talk to my doctor next week. I will definitely be in contact if anything turns up. Great to hear your son is responding to treatment and doing much better greenblue...and thanks to all you other moms for the input.