Engorged tick on 7 yr old DD - panicking!

[citymama]

I feel like a horrible mother. How could I have missed finding it earlier? This morning when doing DD2s (age 7) hair before school, I found an engorged tick on her scalp. The kid has never even had lice (even when her sister did) but she has long hair down to her butt, and we have a dog, so I should have been more vigilant. We do a thorough body check when returning from hikes but not on other days. I totally panicked. Called a doctor friend who walked me through how to remove it, which I did. (Pediatrician couldn't see us till end of the day). I've saved the hideous tick in a ziploc - it's still alive! Eek. We are in California, where Lyme isn't that prevalent, but does exist. I checked the TickEncounter website and submitted a photo. Based on the site, it looks like a 4 day old deer tick. DD has been home sick with a cold and I didn't do as much brushing and braiding her hair as I usually do each day, and didn't wash her hair these days so as not to aggravate the cold. Feeling terrible to have had this happen. There was a large raised lump on her scalp which we disinfected and it started to subside almost immediately.

So now what? Does she still need to see the pediatrician? How to test the &@$# tick? Please advise (and talk me down from this ledge of panic). Thanks. 😥

[JBaxter]

Personally I'd call your doctor and run a course of antibiotics. I wouldn't chance it.

[Melbel]

I would absolutely start a 4-6 week course of antibiotics especially considering (1) long duration of attachment; (2) type of tick; and (3) attachment site that puts her at greater risk of central nervous system infection. This is longer than IDSA guidelines suggest, but based upon high incidence of relapse and slow replication cycle of Lyme bacteria.

https://www.lymedisease.org/tick-bite-no-symptoms/

For tick testing https://www.tickreport.com/ has quickest results.

Note that ticks can carry co-infections in addition to Lyme. www.lymedisease.org is based out of CA.

[Snow mom]

We are in a high endemic Lyme area (about 50% of deer ticks test positive for Lyme) and our pedi absolutely won't do prophylactic antibiotics. We had a similar experience with DS and ended up sending the tick for testing, but even with the tick testing positive and level of engorgement the pedi insisted on waiting on antibiotics. Here is where we sent our tick for testing: http://www.tickdiseases.org/tick-testing/

[citymama]

With 1-2% of deer ticks here carrying Lyme, and given the long-term impacts of overuse of antibiotics, I'm hesitant to go this route without further info. I'm waiting for a call-back from the pediatrician.

[123LuckyMom]

We live in a very high Lyme area, and no doctor here will do prophylactic antibiotics, nor will they test ticks. They do nothing unless a patient exhibits symptoms of Lyme. If they tested every tick, they’d be testing hundreds a day or something ridiculous like that. I would definitely call the pediatrician to find out what they want you to do. It may be that they will test where you are because they don’t have to test often. Also, the fact that it was in her hair and that she has a cold might be complicating factors to noticing symptoms of Lyme, which are flu-like symptoms and a bulls-eye rash, which will be hard to see under hair or assess if she has a cold, though a cold is different from the fever and aches of flu-like symptoms. Don’t panic, though. Follow the pediatrician’s instructions. If you want to, I believe you can have the tick tested yourself and pay for the test out-of-pocket. I’m not sure how to do that, though.


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[squimp]

I didn't see where you indicated how long it had been attached.

I live in a low Lyme area and they gave us prophylactic abx when my DD had a tick. She picked it up from a visit to a highly endemic area. It was attached >24 hours (at least 48) and was an engorged deer tick. We took her to urgent care. I was armed with all kinds of documents to make sure my kid got the abx, but the urgent care physician followed the recommendations I was reading on line. DD was on abx for 4 weeks, and had no problems. Our ped later showed me the recommendations in the Pediatrics red book which says if it's a deer tick, engorged for >24 hours and from a Lyme endemic area, the standard of care is to treat with abx - the type varies with age.

[Aishe]

I feel like a horrible mother. How could I have missed finding it earlier? This morning when doing DD2s (age 7) hair before school, I found an engorged tick on her scalp. The kid has never even had lice (even when her sister did) but she has long hair down to her butt, and we have a dog, so I should have been more vigilant. We do a thorough body check when returning from hikes but not on other days. I totally panicked. Called a doctor friend who walked me through how to remove it, which I did. (Pediatrician couldn't see us till end of the day). I've saved the hideous tick in a ziploc - it's still alive! Eek. We are in California, where Lyme isn't that prevalent, but does exist. I checked the TickEncounter website and submitted a photo. Based on the site, it looks like a 4 day old deer tick. DD has been home sick with a cold and I didn't do as much brushing and braiding her hair as I usually do each day, and didn't wash her hair these days so as not to aggravate the cold. Feeling terrible to have had this happen. There was a large raised lump on her scalp which we disinfected and it started to subside almost immediately.

So now what? Does she still need to see the pediatrician? How to test the &@$# tick? Please advise (and talk me down from this ledge of panic). Thanks. 😥

I don’t have good advice for you, but if it’s any reassurance my in-laws live in the North Bay and have been bitten by ticks countless times. Neither has ever gotten Lyme. I was bitten last time we were there. It wasn’t engorged yet, but it still completely freaked me out so I understand the worry.

[ezcc]

We live in an area with lots and lots of Lyme. I have had it and DS has had it. We also have tons of deer and ticks around our house. I find ticks on us with some regularity particularly in the spring. DS who was 5 at the time had a rash about a week after I found a tick last summer so was given a 2 week course of antibiotics- he is fine now. I would just watch for fever and keep checking for a rash. I had it 10 years or so ago, and my main symptom was high fever- I am also fine after a course of antibiotics. I wouldn't panic!

[citymama]

Thank you all for the replies and advice. I've become a one-day tick expert in the wake of my panic attack.

So what I do know for sure: it's a western blacklegged deer tick (could be eastern but one of those hasn't been found out west as yet). It was on DD likely 4 days (sob) based on the size and shape. I know this by looking at the helpful day-by-day images on http://www.tickencounter.org/ - a super helpful resource - AND because I submitted a photo to them and got an amazingly detailed and helpful reply.

I have now sent the tick in for testing to Tick Report at UMass Amherst https://www.tickreport.com/. While there are local labs that will test for Lyme, the folks at Tick Encounter listed off a few other tick-borne diseases of concern in CA that the Umass folks will test for, so I chose to send in there rather than a local county lab that would test for just Lyme.

My pediatrician does not advise administering abx prophylactically unless the results from the tick test come back positive. She says in all the years their practice has been around they've never had a single confirmed case of Lyme, but plenty of parents asking for prophylactic treatment or bringing in other conditions with a Lyme concern. I will be observing DD's scalp closely and obviously keeping an eye out for symptoms of anaplasma or Lyme. Statistically speaking, there's a low likelihood of her having contracted either, but I will feel better once I hear back from the lab.

[Melbel]

A few final words of caution based on lessons learned the hard way ...

When trying to find out why my son was suddenly suffering from debilitating clusters of symptoms, I researched Lyme several times. I live in FL, supposedly a "low risk" state where the majority of cases are presumed to "imported" from other areas, a presumption I later learned was deeply flawed/not based on facts. We did not see a tick/rash (80% of patients see a rash per CDC, less than 1/2 recall a tick or rash according to ILADS). I now know that standard labs were designed to detect a single strain prevalent in the NE. Locations outside of the NE are more likely to have divergent strains (there are many) that do not show up on lab testing and will therefore not be counted in surveillance numbers. Also, when doctors are told Lyme is rare in ______, they are less likely to look for Lyme, or dismiss labs as false positives, again leading to undercounting of cases. Only states in the NE/Upper MW receive federal funding for Lyme surveillance, again skewing the reported cases.

We were absolutely misled on the risk of Lyme disease, which caused many months of needless, excruciating suffering and a much harder recovery (along with some permanent damage). My son had swelling of his brain, lost the ability to walk many days, presented like a Alzheimer's patient at times (confused as to time/date/place), lost his cognitive skills among 40 other symptoms. I admin a parents group with thousands of parents of severely impacted children (with countless families in CA). While my son thankfully responded to long term treatment, many children do not. Those who are not timely treated, have a much greater risk of relapse with many needing antibiotics for YEARS (on maintenance dosages) to even function. A few weeks of antibiotics early on when the infection is most treatable is a risk I would have much preferred.

Once a Lyme infection is disseminated, it can lay dormant, only to flare symptoms once the immune system is weakened through other illness, injury, major life stressor, hormonal fluctuations, etc. Some people's immune systems are strong enough to beat back the infection early on. The Lyme spirochete is a cork screw shape that can literally drill into organs and other locations where antibiotics cannot reach. Years after my own Lyme diagnosis and treatment, I developed a second degree heart block and myocarditis leading to early heart failure due to Lyme relapse. You do not want to mess around with Lyme. Every day of delayed treatment could make a difference in prognosis.

https://www.lymedisease.org/lymepolicywonk-cdc-count-lyme-cases-south/

https://www.lymedisease.org/touched-by-lyme-california/

Canine cases are also insightful as to incidence of Lyme (noting again the tests cover limited strain; testing is also done as a matter of course which means the incidence rate is lower than if only symptomatic dogs were tested): http://www.dogsandticks.com/map/2012/

A possible option would be to start antibiotics pending the lab result. If the tick comes back negative, then you could discontinue (noting that the tick testing is not completely reliable either due to strain variation).

[citymama]

Thank you, Melbel. I'm now wishing I had sent the tick in to a local lab which might test for different strains of Lyme. I appreciate the caution and wisdom based on your harrowing experience. I'm not going to take it lightly and will be extremely vigilant. I'll definitely take note of your advice and discuss with my pediatrician again.

How is your son doing now? I've read some of your posts over the years but did not fully grasp how terrifying his symptoms were. I do hope he's completely recovered. And I'm so sorry to hear about your relapse and heart condition. Completely mind boggling that these tiny creatures can carry such long lasting and scary diseases.

[Melbel]

Thank you for your kind words. I would not wish our journey on anyone. We are now almost 7 years out from his initial crash; 6 years out from his diagnosis and start of treatment. He is a high school senior, captain of swim team, and taking 5 AP classes. He is 4/4 on college acceptances/scholarships so far. We consider this a huge blessing considering we feared at some points that he would not be able to lead an independent life. We are also proud of his resilience and hard work. It has taken literally years of treatment and therapies to get him close to baseline. He still suffers damage to his thyroid, mitochondria, and autonomic nervous system. With illness, there can be flares. We also live somewhat in a shadow of feared relapses (which happens far too often in the Lyme community). I continue to research daily and advocate for more reliable testing and more effective treatments, especially for those with late stage, disseminated infection. I started IVIG to attempt to repair my battered immune system and require maintenance IV antibiotics to keep my heart rhythm in check (you should see my EKGs 12 days off treatment). I think we had underlying infection for a long time, but gradually, our immune systems became overwhelmed by repeated insults (mycoplasma pneumonia seemed to push me over the edge; 11 year vaccines for my son). Our own pediatrician completely downplayed the risk of Lyme and the children's hospital would only test after many requests. There is an incredible degree of misinformation with respect to Lyme Disease. Doctors receive very little training, which generally consists of outdated dogmatic viewpoints. It is an area where you truly need to educate yourself on the divide in the standard of care, and be prepared to advocate for your child. I personally would error on the side of over treating early vs. risking the nightmare of neurological Lyme.

[Melbel]

A cautionary tale out of California that happened to be published today:

A painless bite was all it took to turn San Clemente dancer’s life around



Symptoms lay mostly dormant within Natalie until she was 20, then escalated and grew painful. It took two years to properly diagnose a multitude of symptoms. Life remains a constant struggle but has improved since the port was inserted in September 2016.




Natalie has good days and bad. Symptoms can include extreme nausea, brain fog, an inner sensation of creepy-crawly skin, ear hallucinations, extreme nerve pain, joint pain, headaches and extreme sensitivity to sound and light.




https://www.ocregister.com/2018/01/24/a-painless-bite-was-all-it-took-to-turn-san-clemente-dancers-life-around/

[citymama]

Update: Tickreport.com sent back the results which were negative for everything - many varieties of Lyme, Babeiosis, Anaplasma, etc. The site of the bite has returned to normal color and there's just a small bump remaining. I talked to her pediatrician and she recommended that I monitor the site but not treat for antibiotics right now. Thank you all for your advice and help.

[petesgirl]

Good news!! Thanks for the update.