Teeth Removal
Parent Testimonials on Teeth Removal for Children with Lesch-Nyhan
As parents, we all want to keep our children safe and free from harm. For families of children with Lesch-Nyhan, one of the hardest challenges is coping with the uncontrollable biting that can cause painful injuries. Many parents have found that teeth removal, while a difficult decision, was ultimately the kindest choice for their child. It has brought peace of mind, safety, and the chance for a better quality of life. The stories shared here come from parents who have walked this path, offering comfort, honesty, and hope to others who may be facing the same decision.
Testimonials
“Hugs. It’s hard to make the decision, but I don’t know anyone who regrets removal - only regrets not doing it sooner.
We also tried everything, and our “wake up call” to remove was one morning when we woke up to screaming and thought he had lost part of his lip or tongue due to the amount of blood. We realized we were keeping the teeth for us, not him. He was instantly a happier, calmer kid after removal and we felt awful to putting it off so long.
I don’t say that to diminish how gut wrenching it is to make the decision to remove. Just to assure you that it’s the right one
One thing that might help you.. I was so obsessed with how different his smile would be, I couldn’t imagine his face without the smile as I knew it. But honestly, within days of removal he was smiling so much and I didn’t even notice the missing teeth - just how genuinely happy he was for the first time in a long time.”
“My son was 12 when he was properly diagnosed with LNS. We’d spent 6 months trying to save his teeth while he was biting the insides of his cheeks & his lips and constantly crying from the pain. 3 weeks after his diagnosis we had all his teeth removed, including anything unerupted (wisdom teeth). Best decision ever. He woke up from the anesthesia saying “thank you for having my teeth removed.” He still eats everything by mouth and anything we eat except for super hard or crunchy foods. Absolutely no regrets. (He’s now 34 yrs old.)”
Family Stories
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If I could get back the time I would do this years ago! Now we are in the present, and thank God Aldo is better... In late February 2023, Aldo started hurting his tongue. I thought it was just another minor injury that I could manage, but unfortunately, that wasn't the case, and the wound on his tongue kept getting worse. At the hospital in our city, they unfortunately didn't know what to do for Aldo, which was a complete tooth extraction. If it was difficult for them as doctors, trained professionals, it was even more difficult for me as his mother. We were going through a very difficult time because Aldo wasn't sleeping, eating, or taking his bottle... By march, he was hospitalized, but the doctors hadn't offered a concrete solution... But Gaby Ponce was already moving heaven and earth to help Aldo and stop the wound on his tongue from getting bigger. It was a very complicated situation because even an emergency surgery, especially a private one, isn't cheap, but thanks to the Love Never Sinks Foundation, who didn't hesitate to help us get Aldo transferred to Mexico City for the tooth extraction…I requested a voluntary discharge from the hospital where Aldo was hospitalized in Veracruz, Mexico, and that same day we traveled to Mexico City. It was very difficult because we went by bus, and Aldo kept hurting himself. At times we could control him, but it was inevitable that he would hurt himself more and more.
The day we arrived in Mexico City, by 3 am Aldo was already going into surgery for his tooth extraction. Thank God, Aldo came out of surgery very calm; all he wanted was to be hungry, and it was a huge weight off his shoulders to realize he no longer had any teeth. From then on, Aldo has changed in every way: he's calmer, he eats very well, he's happier!
And I want to thank Love Never Sinks for being a part of Aldo's happiness!
Thanks to Gaby Ponce for always looking out for Aldo, and to Luis for also being a part of Aldo's great happiness!
-Teresa Zapata