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Our stories matter and we care about the details. After all, we are the experts of our children. Here are some of our stories.

baby boy

baby boy

4 years & 1 month old

What was your experience, if any, seeking a diagnosis or treatment?

We were in and out of the office that adjusts his helmet constantly. He had these markings from the helmet all of the time. It was very stressful. They grow so much at that age. After two-and-a-half months, right before he turned one, we discontinued the helmet. It didn't really make too much progress, in my opinion. He wasn't crawling yet. He wasn't doing any of the things that other “typical” kids would. I have a friend who works in Early Intervention. She recommended that we start Early Intervention because he was wearing this helmet, and it was harder for him to crawl because he's like, lopsided. He qualified for Early Intervention, and initially it was to help him catch up. Early Intervention was very smooth, the way that it works in Philadelphia. You call a number and a Support Coordinator comes out. They do an interview and they evaluate your concerns. You need to have a 25% delay in any of the five areas (cognitive development; physical development, including vision and hearing; communication development; social or emotional development; and adaptive development or self-care). He was receiving physical therapy and “special structures”: somebody comes and they play with him to help him with his development. He also has a speech therapist that we do Skype with once a week. She gives us suggestions and advice on how to repeat (and repeat, and repeat) certain things. He has made progress. He is doing so much better. There has been so much play with him and so much repetition and so much patience. He can sign more. He grunts and I kind of know what he wants. He points. And I’m like, “OK.” And then I give him choices: “Do you want this? Or do you want this?” He points to what he wants. “It’s not that. OK, you want the other one.” Parents need to follow their gut. My pediatrician was like, “Oh, you know, I wouldn't worry about it.” Late January, we took him to the pediatrician to discuss the developmental issue, I said, “Hey. He's not talking. This is the direction that we’re thinking of going.” And the pediatrician said, “Well, he looks like a typical child. He's just not communicating. I would just go for a speech evaluation.” The pediatrician said, “Maybe he has apraxia (of speech).” I mentioned it to the speech therapist who said, “No. he doesn't have apraxia because somebody with apraxia needs to communicate, first. He doesn't communicate.” The plan to meet with a developmental pediatrician was my doing. I’m a licensed social worker, and I used to work with autistic kids. When I told the pediatrician that was the direction I was going, she said, “I wouldn’t do that. They’re going to automatically diagnose him. I would just get a speech evaluation.” My thought process was, “He doesn’t talk, so what is the speech evaluation going to do?” The developmental pediatrician can do further assessment, and if they need to refer him somewhere, they can.

J.

J.

5 years & 7 months old

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.

M.

M.

13 years & 2 months old

Share the first part of M.'s story for readers on Sleuth! When and why did you start to feel concerned?

I had a little heads up that things might be different. At the amnio, they found a marker on Chromosome 17. This was back in 2008. My daughter is 11 years old now. I went to everybody I could find: my doctor, other doctors, other specialists. I said, “What would this look like?” because the genetic counselor at the obstetrician’s office was trying her best to persuade me to abort. She went as far as to propose a date. They didn't know what a marker on 17 meant, or what it would look like when my daughter got older. My daughter looked okay in the sonogram. Finally, I found a genetic specialist who said it would look like learning disabilities and wouldn't show up until she was in elementary school. I'm a teacher, so I thought, “How could I possibly abort a child who has learning disabilities?” Anyway, the birth proceeded, and everything looked okay. This was my first and only child. I had no idea what to look for, or what the milestones were. Then, as she got older, it was clear there were issues with her development. She didn’t roll over. She didn’t sit up. She had hypotonia: she was like a rag doll with no muscle tone. She did make good eye contact, though. She talked early, before two years old, and has never stopped talking! She crawled late - two weeks before she turned two, and then she started walking at two or thereabouts. She couldn’t climb the steps, initially. She couldn’t run well. She has always had a problem with the right leg not quite keeping up with the left. She definitely has signs of ADHD. She has a very poor attention span and very poor frustration tolerance. She’s a brat, if there’s not a better term. She’s very oppositional. She wants what she wants, when she wants it. And she’s also needy. She always wants attention. She loves negative attention the best. It’s like she’s an addict, and her drug is being yelled at or being scared. She should eventually be a skydiver because she loves that high. She likes this more than positive attention. More than: “Hooray!” She’s really good with language, and has a really good memory. But she behaves like a two-year old. Except that a two year old goes and destroys something because they don't know better; she will destroy something because she wants to get a reaction. She’ll rip her book. She’ll grab a plant. We have to baby-proof the house. Knives can’t be out. She’ll grab one… She did it twice yesterday, because my brother made the mistake of leaving one on the island in the kitchen.

S.

S.

5 years & 8 months old

Do you have any other thoughts or advice you would like to share from this experience?

I can tell you what I found helpful and what I haven’t: I found that most doctors actually aren't helpful in their diagnoses of our son. I'm an educator, so I've been dealing with kids for more than 20 years. I've seen them all shapes and sizes. But it's still different when you're a parent. Doctors see two + two + two, and conclude, well that’s six. They just give you an automatic conclusion. But they don't really know your kid. They don't really know your son or daughter and they get such a small sample of time. When they talk to us about S., it's not that they're rude or mean, but it's very cold. The last speech pathologist that we saw spent about four hours with S. and was able to get to know him a little bit better and say, “Look, he's a smart kid. He figures out what he wants.” It was nice to see somebody get to know our son and talk to us about him and what his strengths and weaknesses are, as opposed to just: “Well, I have a chart that says this and this, so therefore, this.” It was less scientific, but our son’s not a formula. There were things the speech pathologist wasn't able to see, like how he is socially. She didn't get a chance to see him with his classmates. Also, he wasn't being very vocal: at times he is vocal even though he doesn't say anything, but he wasn't very vocal with her. It was in her office, where we had just driven for 9 or 10 hours. It wasn't in his environment. On the other hand, she was able to recognize a lot of things that are often unnoticed. Again, while my son doesn't speak and he's behind, he definitely thinks his way through things. If he wants something, he will figure out exactly how to get it. He knows how to steal the phone out of my pocket, and use my own thumb to turn it on, and scroll through pages of apps to find YouTube Kids, and then adjust the phone horizontally. He can work his way through problems. Doctors don’t ever get to see that side of him. They just go: “Well, he's this old and he can't talk.” Now, in terms of what's helped him, I don't really know that any of it has yet. He's not talking. He did some private speech therapy last summer, and he made some progress there. In school, he was also making a lot of social strides. He was getting very good with his classmates, and starting to do things we didn’t even know he could do. When we went to an evaluation, they showed him pictures and asked “Which one's the cookie?” and he pointed right at the cookie. We had no idea he could do that. “Which one’s the bird?” Every time he got it right. There are a lot of times we stress about our son, but I know there are a lot of people dealing with more challenging cases than us. He's literally a little joy. He's well-behaved. He can get frustrated sometimes at things, but I just sit him down and talk to him. . We try to be consistent. We say, “Okay, now you have to stay over here. And this is what's going to happen if you don't.” If he gets up from the table while he’s eating to do whatever he wants to do, we say “No, you’ve got to come back over”. We try to reinforce positive behaviors. Obviously, we don't punish him. We don't give him timeout because I don't think he’d understand what that is. We try to be as positive as we can. I feel like somebody who's just trying. Sometimes, we get frustrated. But I feel blessed for my son to be as loving as he is and as kind as he is.

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