Top Menu

Mama Ashley’s Story – from Illinois

10300295_632868260162494_9201401920131601136_nWritten by Ashley – July 25, 2014
a mother in the Lead Safe America Foundation’s Private Facebook Group for Parents of Lead Poisoned Children
Shared with Permission

  • Lyrik – Age 4 (BLL 11 on June 17, 2014)
  • Landon – Age 8 (no blood test yet)
  • Veda – 22 months (tested today with a finger prick)

On June 17th, 2014 a fingerprick test calculated my son’s BLL as an 11. I received a call from the nurse to let me know what his levels were; she didn’t seem at all concerned, just instructed me to try to keep him from eating things he shouldn’t be eating – but that was part of the problem, he was always eating things he shouldn’t be eating. That was one of my main concerns at his check up.

I was in touch with the Lead Case Manager at the Health Department in our county, she advised me to have a venous lead test done to more accurately tell us what his lead level is, she said, “If the venous comes back at 10mcg/dl or above then the Health Department would come out on a home visit.”  So I scheduled an appointment at our doctor’s office for the venous test for Lyrik and I wanted to have my other two children’s BLL checked as well; they only had an appointment available for one other child so I chose my youngest, Veda.

At the appointment the doctor was dismissive of my concerns about my son’s behavior, and she wasn’t concerned at all about his lead level. She had said that:

• there isn’t really anything they can do at this point

• a BLL of 11 “wasn’t all that high”(!)

• she “doesn’t normally take any action until it’s 20 or higher“(!)

and that they would do another test to see where he’s at and that she anticipated it would be 2-3 points lower because a test done by finger poke can give an inaccurate reading if there was any lead on his finger at the time of the test.
I brought up my concerns about my son’s behavior again—there’s a long list of them—and she just dismissed them. I had told her that early on I thought he may be on the Autism Spectrum, there were few behaviors that he had that stuck out to me, like hand flapping, lining up his toys (cars, dinosaurs, blocks, tools, etc), even grouping them by color, eating non-foods, and his poor social skills, to name a few. She said she “wasn’t concerned about Autism” because he makes eye contact and he was playing on my phone(!) She told my husband and me that “Autistic kids don’t play with technology”, that they “don’t know how to work it”, that they “want nothing to do with it”.

He has other behavioral things that stick out to me, that I’ve wanted him to have an evaluations for, but have always been dismissed. He’s very aggressive, especially towards his siblings and peers—not many kids enjoy playing with them because he hits, pinches, pulls their hair, throws things at them, or chases them around to hit them with a toy. Sometimes he even hits himself, he will say, “Mom, watch” and he’ll punch himself in the face and laugh. He doesn’t like to wear clothes, he especially doesn’t like to wear shoes, and definitely hates to wear socks or underwear. He likes cold things, he will often put his blanket or his monkey in the fridge or even the freezer so they will get cold. He hates to have his hair brushed, and especially hates hair cuts, he doesn’t like if I touch him and my hands happen to be wet, or if I touch his toys and my hands are wet from doing dishes. Bath time is always a struggle, he doesn’t enjoy being washed up and is so ticklish I cannot wash his neck, he chews his fingernails and toenails – he doesn’t like having them clipped. He has a hard time listening and following our directions, he gets distracted easily. He can be really shy and not want to be talked to or looked at, he often tells people in the store not to look at him, and gets really upset if they continue to look at him. At his last check up, the one in June, the doctor undid his pants to check his genitals and he got really upset, he slapped her hand away and was in a pretty bad mood the rest of the visit – not that I blame him, its his body and he’s entitled to say who may or may not touch him. I could continue, but I’d be here a while!

As far as eating non-foods,  he eats anything from paper to sand, dirt, marker tips, lotions, deodorant, chalk, bubbles, candles, crayons, etc. [Editor’s note: the official term for this behavior is “pica”] He’s been doing that since he was about 12-15 months old, I brought it up to his pediatrician at his 15 month check up and was just told it was a normal behavior for his age, and that since I was still breastfeeding it wasn’t a concern because he was still getting the nutrition he needed. Almost 3 years later he’s still eating things he shouldn’t be.

At today’s visit when we got back to the lab they did a fingerprick test for my daughter, I’m not sure if that was just typical because it was her first BLL testing, or if they simply didn’t order the venous testing for her. I say that because when it came time for Lyrik, the nurse was only going to do another fingerprick, I told her it was supposed to be a blood draw because the last visit was a fingerprick with an elevated BLL of an 11, that we needed a more accurate reading to provide the Lead Case Manager. The nurse was frustrated that it wasn’t sent back in her orders to do a blood draw, but she did comply. I’m thinking the doctor just didn’t listen to my concerns and just sent back for a repeat fingerprick.  I don’t know why she didn’t seem to be at all concerned about his BLL, or why she’s not concerned about his behaviors, especially considering it is well-documented that many of these behaviors can be seen in children with lead poisoning.

I’m not at all happy with today’s visit, and I feel like I don’t have many places to turn to. Our children are on state insurance, so finding a doctor who accepts that has been difficult. Right now we are seeing a doctor who was assigned to us through the state insurance program. Additionally we choose not to vaccinate our children, and have been dismissed from a doctor’s office as we were on our way to our appointment for that choice. A lot of offices here aren’t taking new Medicaid patients and/or they don’t accept families who choose not to vaccinate. I feel like we’re at a loss here and just hope to get this all sorted out, and to find out where the lead is coming from so we can fix it. He’s such a sweet boy, and we love him so much. We just want him to be happy and healthy! All of these behavior concerns aside, he can be a very loving boy, and very sweet to his family and friends when he wants to be; he can be very helpful with things around the house and he does like to do things to please others, but he struggles with being able to control his impulses to do the wrong things. We want to get our son the help he needs to be the best him he can be.
~ ~ ~ ~ ~ ~ ~

NOTE FROM TAMARA:  I asked Ashley if we could share this with you because this story is so typical – and so frustrating! I hear stories exactly like this every day in my conversations with parents of lead poisoned children. Feel free to comment and offer support below, Ashley will be looking at this post. I think it’s outrageous that a doctor in 2014 was dismissive of a BLL 11… simply outrageous! The federal level of concern which acknowledges a child to be “poisoned”—with intervention recommended—was lowered to BLL 5 (more than TWO YEARS AGO ALREADY)—which many of the top researchers maintain is still not low enough (their current thinking is that the science would suggest it should probably be “2“.) Waiting for a BLL “20”  to take action is just preposterously out of touch with modern / mainstream understanding and practice.

How can we work together to educate our pediatricians in a polite/congenial yet effective way? —To help them understand the many common and well-documented symptoms and valid concerns of low-level lead exposure in young children? They are on the front lines of this issue and for them to be misinforming parents and dismissive of parents’ concerns is simply unacceptable with all that is currently known about this issue.

Thank you for reading.

3 Responses to Mama Ashley’s Story – from Illinois

  1. Kristi Sakai July 30, 2014 at 11:11 pm #

    Please let this mom know I’m available for help in connecting her to autism resources. Her concern are valid! I should be surprised that a doctor is so ill-informed, sadly I am not. All three of my children, now teens/young adults have an autism diagnosis & I faced similar challenges in getting professionals on board years ago. Parents are often much better informed than pediatricians! (& many teachers, administrators, therapists, etc…). But not all! It’s important to find supportive knowledgable professionals to help families.
    Thanks for sharing.

    • Ashley July 31, 2014 at 6:10 pm #

      Kristi – the hardest part is being dismissed. Test my son. Get him seen and screened to verify he doesn’t have a diagnosis. Don’t sweep him under the rug and say he’s a normal child. I’m no medical professional, but I’ve been a mother for 8 years, I’ve been around plenty of kids, and have worked in a daycare with kids ages 6 weeks to 12 years old. I can assure you my son’s behaviors stood out from about 15 months on. Always in the back of my mind, wondering if he was on the spectrum, but never knowing where to turn or what to do. And when I finally do bring it up, I’m turned down because he makes eye contact and knows how to work an iPhone.

  2. Cyn Slingsby July 31, 2014 at 1:09 pm #

    This is so very sad and frustrating. My love goes to this and all families in this situation! Med school–Tamara, this is where we need to focus–REeducate the people who should be the advocates! Thanks for ALL your work!

Leave a Reply

Designed by Clever Kiwi Web Design