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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.
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.
What was your experience, if any, seeking a diagnosis or treatment?
In New York City, the pressure to adhere is really, really high. It was just too much. But T. hated being pulled out of class. She didn’t want to feel different from everybody else. So from the time she was six, she would go for therapy from eight o’clock in the morning until 8:45am. Then, at the end of the day, she would have a tutor for reading comprehension, interpretation and other learning tools. By the time she was eight years old, she had no time to play or do sports, and the extra work was a burden. I moved her to Churchill in the fourth grade (https://www.churchillschoolnyc.org/). (I looked at every school. The whole nine yards.) At first she was so mad, of course. She had friends. She was very social and capable. And then she was really mad. And then, about two weeks later, she came home one day, and she said, “Thank you.” I said, “Why?” And she said, “Because everybody is just like me.” It’s not that the kids don’t have differences. But the school teaches them tolerance and adaptability so they accept that others learn material differently or that it might take longer for someone to learn a topic. Yes, you’re different. But it’s all the other people who determine whether you feel different. One of the best parts of being in a place like Churchill was that they taught advocacy. A part of this is that, as a parent, it is really important to say, “Yeah, I'm celebrating my difference. Is it hard on me? You bet. But this is who I am.” So that you don’t feel like you're spending your whole life catching up. This was always, and continues to be, a challenge in her life. I think, with employers now, it's hard to decide what she can tell people and how much to disclose. For a diagnosis, I credit PS6 with the first steps. When T. started, it was clear she wasn't learning to read and they suggested she meet the resource room teacher. Eileen Marzola was teaching at Hunter and teaching kids with dyslexia and disabilities, so we couldn't have been more cared for in that environment. Eileen put T. in a summer education and assessment program at Columbia, Teachers College. The first assessment was with Janet Brain. I'll never forget that because her name was “Brain”! She had an assessment from her, and then another, a couple of years later, to attend Churchill. We hired a lawyer - the same lawyer many hired - for help with the IEP. T. received a nuanced diagnosis. Yes, she has some dyslexic tendency, but it was all about sequencing and pattern recognition. I haven’t looked at it recently and do not have the exact wording. It’s a challenge, too, when these diagnoses are vague categories and they're not explicit. Later, anxiety became a huge factor for T. Even when she was at Churchill. She reached a level of anxiety where she fainted one day. We went to NYU, and she got tested for epilepsy. We spent two days in the hospital with her all linked up equipment, but everything was normal. T. actually did have seizures as a small child and had a couple of spinal taps, so of course later in life we were like “Hmm”. Some of that history: Early on, there were febrile seizures. At the first, when she was four weeks old, she had an incredible spike and kind of a seizure, and she was put in the hospital for five days. I sat and nursed her, and she had a spinal tap, then. And then when she was 15 months old, she had a seizure, and again, had another spinal tap. Was it really necessary? I'll never know. Years later, when I looked at this pediatric approach versus others, it was a little bit too aggressive. T. had lots of ear infections, and so she took readily-prescribed antibiotics. She got her adenoids removed, and she had asthma early on. I think it's very hard to figure out what the origins of these things are. Therapies? For T., Cognitive Behavioral Therapy was a hugely important part of her life. She had a deep relationship with Sandra Pimentel, now at Montefiore. She went to therapists - she went to this and that - and she was like “Enough already. I understand.” She had a high level of emotional intelligence. But the need for tools was huge. With CBT, she learned an enormous amount about how to put a pause on some of those things that were reeling in her head. It was very, very important for her. I would say she wouldn't have gotten through high school and college if it hadn't been for some of that knowledge. She did CBT for about 10 years, starting at about 14. Kids need action, they need things that give them back the power in a situation. It's one thing when they're at home. But they need those resources in themselves. You need to find the voice inside yourself, that's going to intervene, and say, “Yeah, this sucks. I can't learn it, I can’t do it... Okay, well, what do I do? Do I breathe deeply? Do I walk away? Do I ask for help?” I think CBT was profoundly influential.
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At 24 months old, among children with Cortical Visual Impairment
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