{"id":5940,"date":"2016-04-28T22:49:28","date_gmt":"2016-04-28T22:49:28","guid":{"rendered":"http:\/\/www.marijuana.com\/?p=50294"},"modified":"2016-04-28T22:49:28","modified_gmt":"2016-04-28T22:49:28","slug":"reaching-out-when-your-world-is-rocked-by-tay-sachs-an-interview-with-lorelei-sandoval","status":"publish","type":"post","link":"https:\/\/cannitrol.com\/blog\/reaching-out-when-your-world-is-rocked-by-tay-sachs-an-interview-with-lorelei-sandoval\/","title":{"rendered":"Reaching Out When Your World is Rocked by Tay-Sachs: An Interview with Lorelei Sandoval"},"content":{"rendered":"<div id=\"wp_fb_like_button\" style=\"margin:5px 0 5px 5px;float:right;height:100px;\"><script src=\"http:\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\"><\/script><fb:like href=\"https:\/\/cannitrol.com\/blog\/reaching-out-when-your-world-is-rocked-by-tay-sachs-an-interview-with-lorelei-sandoval\/\" send=\"true\" layout=\"standard\" width=\"450\" show_faces=\"false\" font=\"arial\" action=\"like\" colorscheme=\"light\"><\/fb:like><\/div><p class=\"p1\">Lorelei Sandoval is a 36 year old Registered Nurse living in San Diego with her husband and five year old son, Isaac in San Diego county. I met Lorelei at a women\u2019s cannabis community meeting last month and was eager to share her story. We spoke by phone as she readied Isaac for a day at the beach, and despite her preoccupation, I was struck by her preternatural serenity.\u00a0<span class=\"s1\">Isaac was diagnosed with Tay-Sachs Disease at 7 months.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">When I interview people for these features, I always begin by asking \u201cwhy are you here, talking to me?\u201d It\u2019s an opening in to people\u2019s stories, I\u2019m curious about yours. Where does it begin?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Yes. Well, Isaac was our firstborn child. My husband and I thought we had a plan when we conceived Isaac. We thought our lives were mapped out. We had careers. When he was born, we knew that I\u2019d breastfeed and we\u2019d both baby-wear. We would give him the best possible life that we could, and it would be a good one.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">I know that all too well. Our children are born with the highest expectations \u2014 not so much for them but for us, for what we can give. When Isaac was born, did you know that something was wrong with him?<\/span><\/p>\n<p class=\"p1\"><img loading=\"lazy\" class=\" wp-image-50296 aligncenter\" src=\"http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_2525-e1461869520330-225x300.jpg?a8203f\" alt=\"IMG_2525\" width=\"372\" height=\"496\" srcset=\"http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_2525-e1461869520330-225x300.jpg 225w, http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_2525-e1461869520330-768x1024.jpg 768w, http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_2525-e1461869520330.jpg 1536w\" sizes=\"(max-width: 372px) 100vw, 372px\" \/><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">No. Isaac came into our lives, and it wasn\u2019t until he was five months old that we brought him to a pediatrician for what we thought was an eye problem. At four months, he had just a wiggle in his left eye, not even a medical disorder or problem. When we saw the pediatrician, we were referred to an ophthalmologist, but the wiggle disappeared completely by the time we saw the specialist when Isaac was six months old. On examination, though, he did have a cherry-red macula, which led us to an appointment with a metabolic specialist who did blood tests and finally diagnosed Isaac with Tay-Sachs Disease. He was seven months old.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">For those who aren\u2019t aware, Tay-Sachs is a rare, autosomal genetic disorder. The disease results when an enzyme that helps break down fatty substances is absent. These fatty substances build up to toxic levels in the child&#8217;s brain and affect the nerve cells. As the disease progresses, the child&#8217;s body loses function. Children with Tay-Sachs experience a variety of symptoms, including seizures, vision and hearing loss, intellectual disability and paralysis. The severe infantile form of Tay-Sachs disease usually causes death in early childhood.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Yes. The eye abnormality called a cherry-red spot is a hallmark of the disease.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">That\u2019s so intense. Yet, here you are with Isaac who is now five years old. What happened immediately after diagnosis?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">We thought, OK. This can\u2019t really be our child, our situation. But we also thought and knew that we\u2019d do everything we could to give him the best quality of life. I started him immediately in water therapy and kept him super active as I wanted to keep and make as many neural connections forming as possible. I thought, let\u2019s keep him active while we figure out what we\u2019re going to do. <\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">So this is when you move out to North Carolina, right?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Yes. At ten and a half months, Isaac received a cord blood transplant \u2014 it\u2019s in the same family as a bone marrow transplant \u2014 in North Carolina. This disease is so rare that only a few places are willing to do that kind of life-saving procedure. We were in North Carolina for about eight months. He stayed in the hospital for nearly six months. We were initially told that he\u2019d be in for two months, out for two months and then go home for strict follow-ups. But he had a lot of complications and was actually there for six months.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">What kind of complications? And were you still working as a nurse when all this was going on?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">I took a leave of absence when we went to North Carolina. Isaac had a massive GI bleed on his first birthday and was intubated. That set us back a lot. He had aspiration, problems with his heart and then developed seizures. Tay-Sachs kids all develop seizures. We were hoping that the cord blood transplant would prevent the onset of seizures, but in January of 2012, he was diagnosed with infantile spasms while still in the hospital and immediately put on Topamax. That didn\u2019t work, so we tried Vigabatrin, but that didn\u2019t work either.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">The dreaded infantile spasms. That\u2019s what <a href=\"http:\/\/www.marijuana.com\/blog\/news\/2016\/03\/the-beginning-march-8-1995\/\">my daughter<\/a> was diagnosed with twenty-one years ago, when she was three months old. For those who don\u2019t know, it\u2019s a particularly devastating and difficult to control epilepsy syndrome. I can\u2019t imagine how difficult all of this was, particularly after the diagnosis, the transplant and the extended hospital stay.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Yeah. So, the seizures were not controlled, and we\u2019re down the road somewhat, trying pharmaceutical after pharmaceutical. We tried the ketogenic diet, too. At this point, Isaac isn\u2019t vocal anymore. While in the hospital, he really started losing development and regressing. The child we took home from the hospital was not the same one that we took in. At nearly three years old, they diagnose him with Lennox-Gastaux, another seizure syndrome, and we begin a trial of Onfi, a benzodiazepine. At the same time, we went ahead and got his medical recommendation for marijuana.<\/span><\/p>\n<p class=\"p1\"><img loading=\"lazy\" class=\" wp-image-50298 aligncenter\" src=\"http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_8199-225x300.jpeg?a8203f\" alt=\"IMG_8199\" width=\"345\" height=\"460\" srcset=\"http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_8199-225x300.jpeg 225w, http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_8199-768x1024.jpeg 768w, http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_8199-768x1024@2x.jpeg 1536w, http:\/\/www.marijuana.com\/wp-content\/uploads\/2016\/04\/IMG_8199-225x300@2x.jpeg 450w\" sizes=\"(max-width: 345px) 100vw, 345px\" \/><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">How did you first hear about cannabis?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Well, as a nurse, I knew about medical marijuana for pain and cancer patients. I don\u2019t remember hearing about it for epilepsy patients until we saw the documentary on CNN, <i>Weed.<\/i> We talked to Isaac\u2019s neurologist who was against it at the time. He actually wrote dismissively about it in Isaac\u2019s medical chart that I saw later when we changed doctors. I continued to do a ton of research on it, believing firmly that I wasn\u2019t going to be giving my child something that I picked up off the corner. I got on the list for Charlotte\u2019s Web, but that was months away.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><span class=\"s1\">I<strong>NTERVIEWER<\/strong><\/span><\/p>\n<p class=\"p1\"><span class=\"s1\">So, you\u2019re doing research and figuring out how to get product. I remember you telling me that you initially <a href=\"http:\/\/www.marijuana.com\/blog\/news\/2016\/03\/making-thca-at-home-an-interview-with-a-mother\/\">made your own oil<\/a>. How did that happen?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">I was doing a lot of research. I used <a href=\"https:\/\/www.projectcbd.org\/\">Project CBD<\/a>, and I found a local supplier with a product that was supposedly all CBD. I purchased my first batch \u2014 picked it up in the parking lot of a grocery store and felt like a teenager! We did it all legally, but it was still so weird.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Yeah. Not a day goes by that I don\u2019t think that I\u2019m in some strange new world!<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">So, I had the raw materials. It was interesting to me that I could look up how to convert it and did so. I was so proud of myself and my nursing skills, my math, etc. when I took my first batch into a lab and it came out exactly as I had figured it out! My chemistry and nursing came in handy!<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Amazing and brava! Did you share this with other mothers or members of the cannabis community?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Oh yes, the monthly meetings of mothers using cannabis are wonderful. We share different methods of preparation \u2014 everything, really. I was so grateful \u2014 and continue to be \u2014 to have people to bounce ideas off of and to make the whole marijuana thing so not taboo. At first, I was worried that I\u2019d get into trouble giving cannabis to my child. Would my license as a registered nurse be in jeopardy? Was I going to hurt my child? All these fears were alleviated, though. Even my neurologist agreed that we\u2019re all, somewhat, experimenting even with pharmaceuticals for these seizure kids. With all kinds of medications! And the neurologist sees all the improvements in Isaac and in other kids. He\u2019s learning from other parents, as well.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">What sorts of changes did you see in Isaac when you gave him the CBD oil?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Well, as time went on we saw that his seizures were improved, he was more alert and his dysfunctional tone was better, too. He has mixed tone issues and is at risk of contractures, but the cannabis has helped that a lot. He\u2019s in a better place than he would be without the cannabis. His neurologist got interested when he saw the improvements.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Tell us a little about the improvement in seizures.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Well, right now he\u2019s stable. He tends to get a lot of urinary tract infections, and they\u2019ll double his seizures, but right now he has about ten seizures a day. This is down from a high of forty a day, so it\u2019s a significant improvement for him. That, with the improvement in tone and his general alertness and better cognitive function is great.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Are you still making the oil? And how much is he getting? Is he on any other drugs? Just out of curiosity, too, have you ever tried pulling it off to see just how much it actually does help?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">No, I\u2019m not making it anymore. We give him both CBD oil and THC drops three times a day. He\u2019s no longer on any anti-convulsants, and is only on a medication for his tone and antibiotics, intermittently. And yes, we\u2019ve stopped giving it to him and have found that within three days there\u2019s a drastic difference. It\u2019s like we have that window \u2014 three days.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">I just never tire of hearing about these stories. Here\u2019s the big question, though. What\u2019s going on with the progression of the Tay-Sachs? Did the cord blood transplant \u201cwork\u201d in arresting the progression?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Well, from a transplant standpoint, he\u2019s considered a success. All the effects of the progression of the disease before the transplant kicked in is what we have to continue dealing with. We like to say that Isaac doesn\u2019t have an expiration date. When he was diagnosed, we were told that he had 2-4 years to live. So, yeah. He\u2019s five years old. He doesn\u2019t have an expiration date anymore.<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">INTERVIEWER<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">Thank you so much for sharing this with us today, Lorelei. I\u2019m sure you\u2019ve heard it many times over, but you\u2019re an inspiring person and your son is beautiful. Do you have any other words for us today?<\/span><\/p>\n<p class=\"p1\" style=\"text-align: center;\"><strong><span class=\"s1\">LORELEI<\/span><\/strong><\/p>\n<p class=\"p1\"><span class=\"s1\">I do! I think I want people to know how important it is to reach out to other people when something like this happens to your child. It\u2019s so difficult when you\u2019re looking at all these therapies, and with cannabis it\u2019s particularly daunting because of the taboos. When your family member has problems, go ahead and reach out. There are <a href=\"http:\/\/www.marijuana.com\/blog\/news\/2016\/03\/the-wisdom-in-the-room-a-cannabis-community-for-women\/\">larger and larger communities<\/a> with a variety of people to talk to. I\u2019m so glad that we have all different types of people with all different beliefs in the cannabis community. I encourage people to reach out and get started.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Lorelei Sandoval is a 36 year old Registered Nurse living in San Diego with her husband and five year old son, Isaac in San Diego county. I met Lorelei at a women\u2019s cannabis community meeting last month and was eager to share her story. We spoke by phone as she readied Isaac for a day [&#8230;] <\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[5568,5104,5300,534,2421,56,9,5569,2547,2418,5570,1,3,5571,18,738],"tags":[5572,5109,5306,3108,2427,2636,5573,2551,2420,5574,5575,2622,3311],"_links":{"self":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/posts\/5940"}],"collection":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/comments?post=5940"}],"version-history":[{"count":0,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/posts\/5940\/revisions"}],"wp:attachment":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/media?parent=5940"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/categories?post=5940"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/tags?post=5940"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}