LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

Searching for information

Our son (4 yrs) was diagnosed recently with LAL-D after 2 years of searching for answers. We are in Texas and they want to start treatment with Kanuba. Are there any families in TX that are currently undergoing treatments??

0 members like this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Rebecca Trendy on August 1, 2016 at 9:49pm

Well, I think I deal like everyone else. You do whatever you have to for your child(ren). My boys have each other, so they don't have to go through it alone. Yes, I have everything times 4, and they each have there own stories, issues, etc. It is hard to balance life with work, and still try to be "normal", but we manage. Some days it is hard, some days are easy. There are ups and downs. We are currently trying to find a balance with levels and meds right now, and Dakota is having some sort of issue with his incision from his port. I worry for him and how it will effect his health and life, especially as he starts the fall sports season in college. But honestly, I lean on my God, Husband, friends, and family. Fear and worries of what could happen only make things worse. They have to learn to live in this world regardless of what life throws at them. As my oldest said I have bad vision, so I wear glasses to correct it. I have no enzyme, so I need to have it replaced. Bottom line I love my boys, and I will do whatever it takes to make their lives as normal as I can.

▶ Reply

Permalink Reply by Donna Lee on January 11, 2017 at 11:40am

Hi Rebecca-

I just saw your post, so please forgive the delayed reply.

We've had patients with ports for years. They don't seem too bothersome.

As for the scheduling, some hospitals tend to be big, slow and inflexible, even when the insurance cooperates. The insurance shouldn't dictate the schedule, since they will cover the infusion every other week, it should be possible to hold onto the dose for a few days in one direction or another. I would try to avoid missing doses but moving the infusion date a few days or even a week should be doable on occasion. Maybe Onesource can help with the insurance issues- that's what they're there for!.

We often referred patients to a small, private hematology office, where they were able to be more accommodating to patients' schedules, and there was less wait time. Hematology nurses are used to giving infusions, so they may be more comfortable with enzyme replacement therapy than other specialists. If you have a genetic counselor he or she may be able to help locate a smaller doctor's office for the infusions until home infusions are an option...

Please feel free to message me if you have any questions about LAL-D or ERT. I see the messages!