Jake's Story: One in a Thousand
Every now and then here at Lauren’s Hope, someone in our own lives suddenly needs a medical ID bracelet. That’s what happened when Jake, a 16-year-old guitar player and high school student from Tallahassee, FL, was unexpectedly hospitalized and diagnosed with Type 1 Diabetes (T1D). Jake’s mom, Julie, went to school with Lauren’s Hope blogger, Tara Cohen, and said one of the first things she said to her son was, “Hey, you’re going to need a medical ID, and I have the perfect place to go!” When Jake asked where, Julie handed him their laptop and said, “It’s this website called Lauren’s Hope. Type it in.”
Picking out a couple of cool pieces of medical ID jewelry was the easiest part of this entire process for both Jake, who recently got his Learner’s Permit, and his mom Julie, an Air Force veteran and mom to both Jake and his younger sister, Riley, who is almost three years old. Jake’s story doesn’t really start with his diabetes, though. In fact, Jake’s diabetes is the most recent in a line of several significant diagnoses that this Florida teen and his family have fought through together.
Jake, like one in every 88 US kids, has autism. Jake’s form of autism is high-functioning Asperger’s, and despite only having been formally diagnosed at age 13, Jake has always had the signs and symptoms of Asperger’s. “I had a teacher tell me that he probably had it when he was 8,” Julie recalls, “And I said, ‘You’re crazy. No way. He’s just a little different.’”
In hindsight, however, Julie says, “I probably should have known … in Kindergarten when I would say to him, ‘Get your shoes and socks on,’ and he would come out with his shoes on and no socks. And I would say, ‘Jacob, where are your socks?’ And he would say, ‘You told me to put my shoes on.’ [And I would say,] “No, I told you to get your shoes and your socks on,” and he’d say, ‘But I already put my shoes on; how would I get my socks on?’ [And I’d say,] ‘Oh, my God, are you kidding me? Just put your socks on,’ and he’d say, ‘But you didn’t say that.’ And [I was thinking], “Is he being a smartass?” Later, I realized, no, that’s how his brain processes everything. I probably should have had him tested sooner than I did.
“The reason I had him tested was because of that show, ‘Parenthood,’” Julie continues. There is a character on the show who has Asperger’s, “And I thought wow, Jacob’s not exactly like that, but that kid reminds me of him. There’s something going on there that makes me think of Jacob, and my husband (agreed).
After having Jake tested, Julie recalls the doctor asking her, “‘What do you think I’m going to tell you?’ And I said, ‘I think you’re going to tell me he’s on the autism spectrum.’ And he said, ‘I am. That’s exactly what I’m going to tell you.’ And I said, ‘Ok. Well, what do we do now? How do I fix it?’ And he said, ‘Ok, you can’t fix that. But you can get tools to learn how to deal with it.’”
Julie says everything is easier with a diagnosis, “That was my biggest thing was getting a name for what he has. Knowing that it wasn’t just the way Jacob is. Yeah, it’s the way Jacob is, but it’s the way a lot of kids are too. And then I didn’t feel like I was on an island anymore.”
Living on that island and being a little different has been very challenging for Jake, as it is for so many adolescents growing up on the spectrum. “He has a lot of anger. He went through a period of really bad depression because he thinks differently than other people and doesn’t really understand social cues,” says Julie. “He’s taken some classes at the CARD (Center For Autism and Related Disabilities) Center on that, which he did not enjoy. He left there saying, ‘I don’t have Asperger’s.’ And I [had to explain], ‘Yeah, you do.’”
Julie continues, expressing feelings common to many parents of kids with Autism Spectrum Disorders (ASD), “He’s had some difficulty making friends. He never really had any friends in elementary school. He never got invited to anyone’s birthday party. I would wonder, ‘What is going on? Does nobody have birthday parties anymore?’ and then I found out, they do, they just don’t invite Jacob. It was hard for me as a parent. I just couldn’t understand why someone wouldn’t want my kid around. And I guess it was just, he had some odd behaviors that I didn’t see as odd because he’s my kid.
“Jake finally started making some friends in 7th grade, and some of them are little standoffish with him because he doesn’t understand distance. He will stand in front of someone, toe to toe, to talk to them, and he’s got a lot of tics that he does with his hands or his face, and sometimes he’ll be smiling and I’ll say, ‘What’s so funny?’ and he’ll say, ‘Nothing. I wasn’t smiling.’ And sometimes he looks [so focused and serious] like he’s blowing things up with his mind, and sometimes he does weird things with his hands, but all of his friends now are just kind of accepting that that’s just Jacob, which is good.”
Despite making some great social progress, Jake has struggled academically, says Julie. “He has horrible organizational skills. His brain just kind of scatters. He was also diagnosed with ADHD, which I was very confused about because he’s not hyper. And they explained, he’s not physically hyper, his brain is hyper. His brain is bouncing from one thing to another. You can’t see his hyperactivity, it’s inside.”
Depression and Anxiety
The ADHD diagnosis was an enormous help for Jake. “ADHD medication helped tremendously,” says Julie, “but Jake was still suffering tremendously from anxiety and depression as a result of his Asperger’s. His doctors tried him on Intuniv. The one in a thousand side effect was complete exhaustion and sleeping all the time, and Jacob got that one.”
So they headed back to the doctor, who then prescribed Lexapro. “He was taking it for about four days, and he started coughing,” Julie says. “He had this weird, persistent cough. I would sit up at night and I would hear him cough cough cough cough cough.” Jake couldn’t sleep because of the coughing, Julie says, so, “I took him back to the doctor and he said, ‘One in a thousand people get a persistent cough,’ and I said, ‘Jake is the one in a thousand. You need to understand that. The next thing you prescribe, make sure there isn’t anything dramatic for that one in a thousand.’ So then he prescribed him Buspar, which is a mild, anti-anxiety, anti-depression drug. There are really no side effects, and I was like, ok great. I just trusted the doctor to give him the things that he needed. Jacob took that for about six months, and he started really hurting himself.
Julie explains, “When he gets frustrated, he will punch himself and bite himself and pull his hair and hit himself against the wall. It had gotten to the point that it was so bad. He was constantly talking about killing himself. I took him back to the doctor.”
The doctor sent Jake to a behavioral health specialist who diagnosed Jake as having become suicidal due to the medication. Once off the drugs, Jake’s suicidal feelings simply went away. “He said the medicine made him feel like nothing was any good ever,” recalls Julie. “He didn’t take any pleasure in anything. He felt like the world was collapsing.”
After such a scary turn, Julie was nervous about what to try next, but agreed when the doctor recommended Abilify. “When they did all his bloodwork, everything was normal. All normal labs. He’s been taking Abilify now since November. And then he got diabetes. I did some research, and I was thinking, ‘You know, this just came on so suddenly.’ And my brother, when he got diagnosed (with T1D), he had not been feeling well for three or four weeks. Jacob had only been (feeling sick) for three days. On the third day, Jacob couldn’t see as well as he usually could.” Jake was rushed to the ER, where his blood glucose was too high for a meter to read, and later testing showed it to be life-threatening at 737. After a stint in the ICU and several days in a standard hospital room, Jake was given the all-clear to head home.
“I didn’t have time to process any of it,” says Julie. “And then I started doing research once we got home from the hospital. And I said, ‘You know, all these medications he’s been on, he’s been the one in a thousand.’ I started looking at Abilify. And the FDA, they have a black box warning on Abilify, which I didn’t know because I thought the psychiatrist wouldn’t prescribe my child something that would potentially harm him, and the black box warning on Abilify says if you have a family history of Type 1 Diabetes you should not take this medication because it’s been known to cause Type 1 Diabetes in one out of a thousand people.”
Julie did her research ahead of time with Jake’s latest medication, she says. “Now they’re going to try Zoloft. I looked at what the one in a thousand was with that, and it was weight gain. He’s fine with that because he’s lost so much weight with being diagnosed (with T1D). I don’t know what else to do as his mom. I have to have him on some kind of medication to help him deal with things, but then you have to be so careful about [these medications] so that they don’t end up hurting your kid even more.”
Adding Type 1 Diabetes “In the hospital,” Julie says, Jake asked, “‘Why don’t they have pancreas transplants?’ And I said, ‘Because your body makes antibodies that attack the pancreas, so basically, they would have to get rid of the antibodies in the body.’” Julie says the endocrinologist’s explanation helped Jake understand further: “Type 1 Diabetes is an autoimmune disease. It’s your body attacking itself. We can’t replace your pancreas. We’re hoping one day we can give you an artificial one that will work without the antibodies attacking it.”
Even in this short time since his diagnosis, Julie says, “I’ve told him a thousand times. If I could give you my pancreas I would. I would give you my pancreas.”
Adding Type 1 Diabetes to Jake’s life is extremely complicated. “Jacob has learning disabilities also,” Julie explains. “His major learning disability is in math. And diabetes is all about the numbers, and I just think to myself, ‘Are you going to be able to count your carbs? Are you going to be able to do this without me standing here?’”
Despite how worried his mom is, Jake, like so many teenagers, seems to be taking his latest diagnosis in stride. “Well, the whole thing about diabetes is I can’t eat as much as I used to be able to,” he says. “At first they had me on a 75 carb ratio, but I really couldn’t survive on that at 16 years old so they put me on 120 carbs. I’m still not eating as much as I used to. And I’ve been a lot more tired since I got out of the hospital, but that’s about it."
As for school, Jake is fairly calm. “Well, I am going to a new art-type school, and I had an admissions tour, and they told me it was going to be ok and just to bring my blood testing kit and everything to school and that I just need to use their sharps container. It was alright,” he says. “I think I’m gonna be just fine at school.”
Still, having Type 1 Diabetes is a big change and a major challenge. “I wish I could have gotten it later in my life,” Jake says. “This was a bad time to get diabetes because I just got my learner’s permit and I had just gotten into this new school, and things were going really good for me and then this came up.” Jake repeats, “I really wish this could have happened later in my life,” but, then, shrugs it off, saying, “I’m already pretty used to it.” If you ask Jake’s mom, she may tell you Jake is that one in a thousand, but if you ask us, we think his positive attitude makes him one in a million.