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Do you have any other thoughts or advice you would like to share from this experience?
She needs friends. I’d like to find similar children. She gets along best with younger kids. I guess partly that is because young kids pick up on the fact that there's something different about her, but they’re not interested in those differences. When she goes to the playground and encounters a four year old or a five year old, they have the best time playing and she's probably more at their level. I have asked the geneticists to try to connect me with other people who have a similar chromosome set, but I was told sadly that her combination is very rare. They don’t know of many others in the world. I’d like to just see the progression of what’s going to happen next. What’s going to happen when she’s 20 or 30? Will she have a long life? Will she grow out of some of her limits, like she did to walk and climb steps?
Share the first part of J.'s story for readers on Sleuth! When and why did you start to feel concerned?
When my son was born, I said, “His breathing sounds super-congested.” The doctor said, “Yeah, he probably swallowed a little amniotic fluid. Don't worry about it.” I saw his chest pulling in a little bit when he breathed, and I kept on questioning. (Now, I know those were called “retractions.”) They said, “Don't worry about it. That's normal.” He was born at 35 weeks. We knew that potentially at 35 weeks there could be some minor respiratory issues. But he was six pounds eight ounces. He looked great. His Apgar scores were really good. All the things that we use to measure the typical stuff were good. Then, my husband pointed out that he was not really responding the way our other son had responded 24 hours into being in the world. Bright lights weren't really making him squint. A bunch of things just weren't happening that we thought were normal. (My first son is a healthy, typically developing six year old now.) He also has what I call his “cute” ear, a malformed ear. That was something I also pointed out, and the doctor said, again, “Listen, your kid is healthy. Don't worry about it. He's okay.” My son was born in Jamaica because both my Husband and I had successful careers there. It was a private hospital with a reputation for great doctors. So we thought, “We got this. This is okay. We didn't need to come back to the U.S. to have a baby.” They transferred him to an ICU unit because of his breathing. He had a little jaundice. We were in the ICU unit for about a week. While we were there, I kept on asking questions: “You know, when he cries, I noticed his mouth is a little lopsided.” (“Don't worry about it, Mom. It's not a big deal”.) “His breathing is still a concern to me.” (“Don't worry about it. He doesn't need oxygen. His O2 is fine.”) He wasn't feeding well, and they said, “Well, sometimes with babies it just takes a little time for them to figure out feeding.” They discharged us from the ICU because they had more critical kids. They handed me a syringe and said, “Just keep squirting some milk in his mouth until he gets sucking under control, and head home.” I thought something doesn’t feel right. We went to our pediatrician, and he said, “Listen, I hear your concerns. I can refer you to any doctors you want. Yeah, his breathing looks a little off. Maybe he has something like a PDA (patent ductus arteriosus), which is very common in a lot of kids.” He sent us to a cardiologist who seemed to be rushing. She said, “He has a minor PDA. It's nothing to worry about.” My husband said, “Listen, this is actually good news. It's not like he has a major heart condition.” But again, something felt off. We went to an ENT (ear, nose, and throat doctor). They said, “Everything looks great. His airway is perfectly normal.” I thought, okay! But again, he still wasn't feeding. We just kept on pushing and pushing. It was constant: “Mom, you're freaking out too much. There's nothing to worry about. It just takes time.” But while this was going on, he was losing weight. I could see it. I mean, I could see it. He was the most miserable baby as well. My other son was such a happy little baby. I know kids are different, but there was just something about it that didn't feel right.
What was your experience, if any, seeking a diagnosis or treatment?
For the first two to three weeks, the pediatrician wasn't that concerned. She's an excellent pediatrician, but she just thought he had the flu and there were some complications. Then, we thought he was constipated. But we got an x-ray, and he was constipated to the point where he might have to go into the hospital for a procedure. This is TMI, but parents are good with this kind of info: There was a whole process of giving him an enema a day, and lots of Miralax and laxatives. That cleaned him out. We put him on formula for older kids. And after that, he gained the weight back. Now his digestion is fine, but he's almost two, and he's still having formula twice a day. I have an appointment with a GI doctor tomorrow to find out if that is that normal. And if not, what do we do next? The closest we have to a diagnosis is that it’s a GI disorder. The only way to diagnose it fully would be invasive, I think testing a sample of the abdominal lining. And if this is a GI disorder, it’s still treated by the formula we're giving him. So his doctor basically said, “Keep the formula up. If it works, don't mess with it. We won't try to diagnose for now.” We have a family history of ulcerative colitis, so we think it could be something in that sort of category. The other thing that might be worth noting is he has six pretty big allergies, which I'm sure contribute to all of this: Milk, eggs, peanuts, pistachios, sesame, and cashews. I don't want to say that our pediatrician wasn't helpful, but the process wasn't rigorous. You know, when your kid is sick and is that young, you expect a team of doctors to help you figure out what to do. It wasn't that. And the scary thing was, “Why?” It just felt like we couldn't do anything. We have no medical training, me or my husband. We were new to all of this. The doctor was telling us she wasn't that worried, but we could tell something was wrong. We resorted to Googling, which was terrible. I ended up stopping that because it was just terrifying. We hounded our doctor to see different specialists. We ended up going to a GI doctor (a gastroenterologist) and the neurologist. Those were the two biggies. And an allergist. We did not find anything definitive from those appointments. They won't rule anything out, which is frustrating, but they think he is good. They said he seemed normal - except he hadn't spoken. You'd expect a child of his age to say words at that point. We went to a hearing specialist, but his hearing is fine. Speech therapy has just started, and they said he's slow, compared to other kids. They don't use the word “slow,” but most kids his age have a lot more words than he does. Again, no one's particularly worried, for better or worse. There's no explanation. Our first speech therapist appointment was in January, actually, because they don't typically see kids until 18 months - or at least that's what we were told. We only did physical therapy once. For speech therapy, we should be going weekly, but there's a delay to set up appointments, and with COVID everything got messed up. We basically had a four-to-six month period of just not knowing if my son’s progression was normal, if there was anything else wrong. Now, he seems to be trending better. But we never got a firm diagnosis, and he's slow at talking and was slow at walking as a result of his condition.
Share the first part of F.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son started talking and walking at 10 months old. For all we could tell - and for all the doctors could tell - he was typical. You could ask him, “What does a cat say?” and he would answer. He would play peekaboo. He was engaged, and he had probably 30 words by the time he was 18 months old. I noticed at around that 15-month mark that he was not saying “Mama.” My husband said, “He's saying it. Do you hear him? He says, ‘Mom.’” I said, “I don’t think so.” That was the first thing that I questioned. He would say words, and then he would stop using them. Then, on top of that, he wouldn't eat very much variety. The doctors told me, “Oh, he's fine. Lots of kids are like that. As long as he's eating yogurt and those fruit pouches, he's fine. Don't worry about it.” So I didn't give it much thought. Then, at around 18 months, some of his words started changing. He went from saying “bite” to saying “bing,” and then he lost that word completely. I was pregnant with my second child at the time. F. was going to be 22 months old when I had my second one. At around the 20-month mark, he quit eating even more, dropped even more safe foods and then dropped even more words. By the time he was 22 months, right around the birth of my second child, he lost basically all of his words, and his level of social engagement dropped to very little. A friend of mine was getting married, so we traveled out of state from Georgia to Oklahoma to go to her wedding. That's when it was the worst. We realized just how far into himself he had gone. My family was there with us, and we all thought, “He's just not engaging at all.” He went through a regression, basically. In December, at the age of two, he wasn’t responding to us and there were no words at all.
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At 24 months old, among children with Cortical Visual Impairment
Sleuth was born out of frustration and hope: Frustration from endless hours scouring the Internet for clues about our children’s symptoms. Hope because we found other parents on similar journeys. What if parents could share their experiences with exactly the people who need them?Read Story