Raising Hope for Families with Lyme

LymeLight Foundation Grant Recipient, Amanda

Amanda – Growing Stronger and Gaining Confidence

Amanda faced quite a few challenges early in life. She was born with a cleft palate and diagnosed with infantile spasm seizures.

After cleft palate repair surgery and finding seizure medication to help control seizures, we thought Amanda would catch up on her development. Unfortunately, during the following years of her life, new diagnoses were piling up on a long list of challenges for her to overcome: apraxia of speech, cortical vision impairments, convergence insufficiency, sensory integration disorder. The list kept getting longer and the symptoms were getting more complicated.

Amanda was vomiting regularly and developed tremors. Later, when she developed speech, we realized she also had vertigo episodes. We were thankful the seizure medication was still working and controlling her seizures until one day, she had a generalized tonic-clonic seizure that landed us in the emergency room. After this big seizure, she developed episodes of strange behavior. It was heartbreaking to see my child enduring all that pain, but now I see it as a blessing in disguise. It was that big seizure and regression which caused our neurologist to refer us to a Lyme specialist. Since finding out she has Lyme disease, Amanda’s life has changed for the best.

Lyme treatment was not an easy road. Amanda reacted badly to prescription medications. These meds made her symptoms worse and gave her additional side effects. With the help of our Lyme specialist, we were able to substitute those prescriptions for more gentle and natural ways to treat Amanda’s Lyme and coinfections. Amanda’s long list of diagnoses kept getting smaller. She was no longer having seizures and was able to take her off seizure medication. She had no tremors, no vertigo, no vomiting anymore, and her development started to take off. She started improving academically.

All these improvements took a lot of time, effort, and financial stress. None of Amanda’s Lyme medical expenses, with the exemption of the neurologist appointments, were covered by insurance.

The LymeLight grant she received made it possible to continue her treatments and allowed us to work on solutions to strengthen her immune system by seeing specialists, run more testing, and provide treatment without interruptions.

Amanda is now enjoying being a healthy kid and working hard on developing the skills that she could not develop before Lyme treatment. She still has lots to catch up on, but she keeps getting stronger, her balance and vision continue to improve, and most importantly, her self-confidence is now growing. She can do so many things she could not do before! We are forever grateful to LymeLight Foundation.

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