LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
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Permalink Reply by Rebecca Trendy on
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I am from Michigan, but I have 4 boys with LAL-D, and they are all receiving treatment.I can try to help you.
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Permalink Reply by Lisa Diaz on
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How are they doing? How long have they been on treatment? Were you scared to death in the beginning? Has it gotten easier? Does this affect them in school? Lol, I have tons of questions!
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They are all doing well. Ast/alt and cholesterol levels are all basically normal now. They have been on the treatment since October. I fear this will effect them in many ways, but not always in a bad. My oldest son just graduated and plans to be a doctor. Yes, their grades have seriously suffered, but we set up 504 plans just recently to help. So hopefully as the new normal sets in they will do better next year. For me, the hardest part through the whole thing was not knowing. It got a ton easier for us when we knew what we were up against. It took 9 years for us to get a diagnosis. I think the worst part now is, being owned by the insurance company. We have no flexibility when it comes to our schedule, or they won't pay. Already had one month, BCBS decided they would skip it saying they didn't have the correct paper work, when we are approved through 2021. So I spent a day in the phone with them. I have to make up the time I lose at work, so I can take the boys every other week to Detroit. It is an hour drive both ways. They have not yet been released for home infusions. They just had ports put in their chest, to make the infusions better. I asked how long they last, and the doctor said he had never had kids need them for life, so it is new ground for him. In theory they should last so many uses, but he usually deals with cancer patients. My fears are for their future. Their spirits are good now, but I am sure there will be a point when they will hate this. So far, they have missed field trips, assemblies, fun days, etc. But someday they may not get the job they worked hard for, or as we see now, the college they want. It can be hard at times and very overwhelming! People don't understand, and I get frustrated when I have to explain the treatment doesn't end. Then we just hear I'm so sorry, and they walk away. It has changed our lives. Some days are harder than others. Then there are those days it is just normal to spend the day at the hospital. We will miss the nurses when we move to home infusions. Ask away, I love sharing!
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Permalink Reply by Nicole on
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My son is 4 and has been on Kanuma since January. He has a port and receives the treatment every other wednesday. We are from Indiana so we did 6 months in indy at the children's hospital, but now have just been cleared for home health. We call our infusions Port Party day. The first 2 months I made it a party and had balloons, presents and cake for him while he was receiving his infusion. I did not want him to dread it, and it be a fight to go since it is a life long thing. Now we don't make it a big party but he does have toys that he can only play with during port party. We requested that he had the same nurse at each infusion, and that seemed to help him feel very comfortable. Talk with the infusion room before you start and ask what you can expect or what your allowed to do (how many people can be with you, if you can have a private room to start, etc). It is extremely scary at first but soon it will become a regular part of your life. Good luck!
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We just had an appt in June and met with the dr. We hope to begin treatment before the end of this month. Do they put a port in right away? I think I'm more scared than anything!
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When you chose to do the ports, that is up to you. It is a ton easier. We waited due to the older two boys being in competitive swim. They didn't want to sit out. We did it toward the end of the school that way they have plenty of time to heal.
I understand it is scary, but it will become a new normal rather quickly. It is better for your son of it seems like it is no big deal. All of my boys have taken to the treatments like champs! But I say things like today is the day we go save your life!
We have all been through what you are feeling right now. Stay strong! You got this!
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That's awesome! Will you be heading to a cancer center or having home infusions? We travel to a center, and the nurses have been absolutely wonderful. We pack a bag of snacks and all their electronics. We even do a family board game, and it can be a lot of fun. Good luck, and congrats on getting a date!
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We are doing treatment at the Children's Hospital. We have our next one on Monday. First round went good!
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Awesome! We just had treatment today. :)
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