Raising Hope for Families with Lyme

Kaden-and-LandonKaden and Landen – You Will Get Better

I can still recall the immense feeling of relief that I felt when I first opened the email from LymeLight Foundation, stating that my 2 little boys were the recipients of a grant for their chronic Lyme treatment. I remember reading it several times so it could sink in.

I cried tears of joy, because I no longer felt the fear and hopelessness that my children might never receive proper care and that they might continue to deteriorate. Our family can now breathe a sigh of relief and we have hope that our boys will get better.

My 2 boys, Kaden, age 8 and Landen, age 6, had very rough starts to life. Both boys suffered from severe GI problems, including acid reflux, allergic colitis, abdominal pain and food intolerances. Both of them were very prone to chronic ear infections, upper respiratory infections, joint pains that seemed far beyond typical “growing pains”, unexplained rashes, poor muscle tone and lack of energy.

Both boys went on to develop chronic strep infections and shortly after, they developed severe OCD, tics, ADHD, Sensory Processing disorder and anxiety. We sought the help of our pediatrician who recognized the symptoms, ran some test and diagnosed them with an autoimmune disorder known as P.A.N.D.A.S, which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

Like most families with chronically ill children, I eventually lost my job and we sold everything we had to stay afloat. This helped us adjust to living solely on my husband’s income. We eventually sought help from a world renowned P.A.N.D.A.S specialist who ran extensive testing on the boys to try to identify ALL of the possible triggers for this autoimmune disease.

I learned that some children develop psychiatric symptoms not only from strep, but from other infections. In the process, we found out that the boys were suffering from a chronic Lyme infection and suddenly, all of their past medical history, including my own, made sense. The boys had been suffering from congenital Lyme, passed on by me in utero & then re-infected in 2008 & 2009 on a property we rented that was very wooded with a lot of wildlife, including deer.

We never suspected a problem when we pulled the ticks off of the boys, because we were told by doctors that without a doubt, they would develop flu like symptoms and a very distinct bulls eye rash if they were infected. That never happened, and their health continued to go downhill.

In hindsight, my very rough pregnancies with migraines, chronic fatigue, joint pain and facial paralysis, known as Bell’s Palsy were actually symptoms of Lyme. I had been misdiagnosed repeatedly over the years and went on to have children who were infected by me.

The boys’ specialist recommended that we seek treatment from a Pediatric Lyme Literate Medical Doctor, but we simply lacked the funds to do so. We were just getting by paycheck to paycheck and we were already drowning in medical expenses. Then, a friend told me about the LymeLight Foundation and I had renewed hope. I would apply for this grant, and pray that it would pull through.

I cannot describe what an awful feeling it is to know your children are debilitated by an illness and that you might have to look at them and tell them their treatment must wait or that it may never happen.

After I applied for the grant, we were given more bad news. The chronic Lyme infection had gotten to Kaden’s heart and done enough damage to cause a life threatening heart problem, known as Long QT. This means that his heart has a longer than normal interval before it “recovers” T waves. As a precaution, there are many medications he is unable to take, including a long list of antibiotics. We now needed the guidance of an experienced LLMD more than ever.

Finding out that my boys were granted this money for their treatment has been the biggest blessing ever given to our family. We finally have an upcoming appointment with a Lyme Literate doctor and plan to use the funds to pay for the consult fees, medications, supplements, testing for co-infections, as well as the medical expenses we are now incurring for Kaden’s extensive testing for his heart with the Pediatric Cardiologist.

This grant also makes it possible for us to continue consulting with the PANDAS neurologist, since they are still greatly impacted by the neuropsychiatric symptoms whenever they are exposed to strep.

I cannot say thank-you enough to the generous people who are donating this money to the LymeLight Foundation. It has truly restored our hope of a recovery for our children. I believe wholeheartedly that this grant is going to change their future and their outcome. I can see the hope in my boy’s eyes now when I look at them and tell them “you will get better”.

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