We gather stories and info directly from parents. With smart technology, we help each other identify solutions, resources, and cures.
Our stories matter and we care about the details. After all, we are the experts of our children. Here are some of our stories.
Share the first part of baby boy's story for readers on Sleuth! When and why did you start to feel concerned?
I am a first-time mom. My son is 23 months old now. My son prefers to sleep on one side of his head, and when he was eight months old, he developed a lopsided head. We took him to a neurosurgeon - I believe that is the type of doctor that assessed him - and he was diagnosed with plagiocephaly. To reshape his head, he got a helmet that he had to wear 23 hours a day. He was wearing this thing, and it was hard for him to sit up. Every time he would sit up, he would fall backwards. He would bang it and I would hear him in the helmet when he was sleeping at night. Well, I don't know if it's because of a helmet, but he didn’t start walking until he was about 17 months old. Everything he did, he did really late. Initially, he qualified for Early Intervention because of his medical condition, and because he wasn't sitting up yet by himself or crawling. I thought the helmet was going to come off and he would be a typical, developing child. Unfortunately, it just took him a really long time. He did crawl, but he did it really late. He did sit up finally, but he was almost one. Then, I was concerned he wasn't walking. I had thought “Oh, well, it's okay. At 13 months, we'll do it.” Nope. 14 months. Nope. He was almost 17 months old when he started - that’s late! He’s still struggling with how he walks. He trips and falls a lot. He still has physical therapy. He walks like he doesn't have the muscles in his legs - like a penguin, that would be my interpretation. And he doesn't pay attention to where he walks. He doesn't look straight ahead. He's walking and he's looking over here, and I keep telling him “Look ahead! Look where you're going!” He bumps into the wall, and he'll trip and fall. It's like this catch 22. I am nervous about taking him out walking, because I feel like he's going to fall. But if I don't take him out walking, he doesn't get to practice the skill. And he's not talking. He's now at 23 months, and he has no words. He 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 says, “Mama”. He was saying “Papa,” but he stopped and that's where we are today. People tell me, “I wouldn't worry. My son didn't talk until he was three years old.” Or, “My son didn't talk until two and a half.” Things like that. I have a lot of friends with kids his age, and I’m on certain Facebook groups. We do video [chats], and I see how communicative their kids are. How they say, “Hi!” This one little girl said, “Happy birthday!” I have this hope that it's going to happen. But the reality is, nobody really knows if he's going to communicate or not. That's the biggest stressor for me. Not knowing.
What was your experience, if any, seeking a diagnosis or treatment?
We have one goal in mind for our son right now and that's to get him talking. We definitely haven’t solved this puzzle yet, unfortunately. His first evaluation for autism came at two years old. He had a full panel screening: four hours with a speech pathologist and a couple of different doctors. They determined that he actually was not autistic, but rather they called it Global Developmental Delay (GDD). For whatever reason, everything was just coming along slowly. My wife works in neurology, so we're very fortunate with our access to doctors. Our son has seen specialists all over the country: - He has had a couple of EEGs and we determined he was getting some abnormal brain activity at night. It was not seizure-causing. It was technically a Benign rolandic epilepsy (BRE). We attempted a medication that would quiet that activity. His brain activity was occurring directly in the area that is movement and speech. However, after several months of being on the medication, we're actually titrating off. Today's the last day he gets it. We noticed a personality change that we didn't really like, yet no speech change. We gave the medication to him before bedtime, but then he couldn't enjoy bath time before sleeping. It made him very droopy. We tried the medication during the day around the time he would nap, and we noticed a couple of mood spikes that we just have never seen before. Our son doesn't throw tantrums. He's actually incredibly well-behaved. - We've also been to a developmental pediatrician, who did a separate speech pack. They, of course, thought that he was on the spectrum. So we've received multiple diagnoses of autism spectrum disorder (ASD), but we've also gotten Global Developmental Delay (GDD). We don’t think it’s autism. For the specialists who felt like he's autistic, it really boils down to the fact that he doesn't talk. Now, granted, every once in a while, he'll space out. But it's only for a few seconds. And every once in a while he might dance around in a circle, but it's for a few seconds. It's never repetitive. He'll kind of rock back and forth for a moment, but it was never for a 10-minute span. For us, even to this day, we still don't believe he's on the spectrum. However, maybe he is. They cast the spectrum pretty far and wide. If I tested myself, I might come out on it somewhere. It's such a huge net. He's social. He has good eye contact. He follows instructions. He's also a typical kid: he'll sit there and stare off into space daydreaming for 40 seconds. - We saw a third specialist recently in Nashville, a PhD in child development who worked with another speech pathologist. They said: “It doesn't really matter which diagnosis it is. We're just trying to figure out what he needs.” - He’s had an MRI and he has no brain damage. - We've flown in to Baltimore to see a specialist in speech to see how the BRE and speech might be interacting with each other. - We have a pediatric neurologist here (in Ann Arbor) and a developmental pediatrician. So he has seen a lot of different specialists. We did do some Early Intervention. Before he was old enough for preschool, we had some people that would come to the house every once in a while and play with him. But to be honest, it didn't really do much. It was maybe once a week or every other week. It was not much. In preschool, he got some services: He got some occupational therapy, he got some physical therapy, and he got some speech therapy. We did some private speech therapy last summer as well. He made some progress there. We're getting ready to move to Atlanta next week actually. We're going to be starting some RDI therapy with him. We’ve found a person that we're going to be working with in Atlanta. Our most recent evaluation suggested that ABA therapy was probably not good for our son. (Why RDI therapy?) The specialists we went to in Nashville are experts in helping late-talkers, whether it's because of ASD or some other reason. They are a husband-and-wife team. She is a speech pathologist and his study is child development. They felt that while, yes, we can get him to do things by offering up rewards (as in ABA therapy), that wasn’t what was holding him back from talking. With RDI, at least from what I understand, it means we're going to slow it down. We're going to go back to principles. I guess I look at it like walking upstairs: You can see that first flight up above. If you try to jump up there, though, you might miss some steps along the way. Do we know that this is 100%, right? No, we don't know. But it makes sense. We’ve had more than one person now tell us that they feel like RDI might be good for him. He is a smart kid, he just missed something along the way. Part of it - which might be important to share - is that we feel like it's our fault. Now, every person we see says, “Look, this isn't your fault. There's nothing you did.” And it's great that people say that. (It's nobody's fault. It just is.) But we do anticipate every need he has. When it's almost 11 o'clock - the nanny’s downstairs working, and I'm working from home - I'm sure at some point in the next 30 minutes, she's going to start lunch. Then, right around 12, it's going to go on to the table and he'll be expected to come up and eat. So he doesn't really have to express how hungry he is. And there'll be a snack this afternoon, whether he asks for one or not. His growth is so small that we don't want him to ever skip a meal or skip a snack. But all of this prevents him from needing to communicate with speech. About his milk allergy: He never really ate comfortably at the beginning. We went right to formula. He drank it, but then he would just get terrible gas pains and would just be screaming. I went through something very similar as a child to this, unfortunately. It seems like he got a few of the things that I don't like about myself! He would get really terrible gas. He would eat and be crying and upset. We finally started using the soy formula and it got better. We probably switched to soy formula at six months, maybe even a little sooner than that. I don't know if it started out as bad. I think it got a little bit worse, but we took him off dairy milk-based formula at about six months. Then, he got some dairy by mistake at about a year old. We'd actually bought something with some yogurt in it. He had it and started puking like crazy. His system just spat everything out. It was pretty bad. Also, at about a year, we just gave him a little bit of milk in his formula just to test his reaction (as our pediatrician suggested.) He started puking. So, we waited. At about two, we did the same thing: same reaction: puke, puke, puke. Over the last six months, probably since just before he turned three, he had some dairy milk and was completely fine. Now, he's completely over it, which is nice. He has grown out of the milk allergy. Our pediatrician said, “He’ll grow out of this milk allergy. Don’t worry about it.” Our pediatrician got that right on. He also told us he would grow out of his lazy eye, and he is kind of starting to.
What was your experience, if any, seeking a diagnosis or treatment?
The first doctor who diagnosed my son, Y., said that early intervention before three years is critical. It will make a huge difference. We went back to his school and gave them all the reports. We set targets and a therapy plan to work through at home: we had two cognitive, two psychomotor, and three speech therapy sessions per week. The nursery also followed up with us every week on a phone call. I attended all the speech sessions for over a year and read books about autism. I recommend Ten Things Every Autistic Child Wishes You Knew by Ellen Notbohm. At 31 months old, he was able to say a sentence of two words: “I want water”, “I want food”, “I want pasta”, “I want pizza”, “I want to play”. But he preferred to say, “I want that,” and just to point without using the word. We would force him by saying, “What do you want? I cannot understand you?” We made great progress. His speech therapist has been helpful. By the second year of nursery school, Y.’s therapist and doctor said he could start to attend a mainstream school without a support teacher. We did not want him to depend on the support teacher for his needs - for play, for eating, for the bathroom, for everything. We wanted him to have a social life with his friends and teachers. But the school still required the support teacher. So, we hired a support teacher. She had worked with kids with special needs before and had over 40 years of experience. She said that Y., in her opinion, is not autistic. He has no tantrums, now. He is talking. He is playing with his friends. He is laughing. He says, “I'm sad because you took my toy.” He loves animals, so he says “I want to play with animals. I don't want to A-B-C,”, or “I don't want to eat now. I want to play in the wagon”. The support teacher said she would leave the class and leave Y. with the teacher. Last year’s teacher was very, very supportive because she had an autistic child. The teacher this year doesn’t want to be as patient or to do the extra effort. But Y. is showing great progress. We didn't stop the sessions. No vacations from therapy. No summer vacations, just two weeks off. We had another assessment this year, a year after the first, and his diagnosis changed from moderate to mild autism. Me and his father are not sure ‘autism’ applies. He has gymnastics two times per week with regular kids, normal kids. His trainer does not know anything about his condition. Y. follows the rules and he asks if he wants anything. He's a little hyperactive but the trainer can manage it. Now we are working on having a short conversation. We can have two or three exchanges. And our biggest problem is echolalia, conversational repetition. It's very silly. When he meets someone for the first time, and that one says, “Hi Y., how are you?”, Y. replies, “Hi Y., how are you?” with the same tone, with the same voice, same everything. If someone asks, “Are you happy today?” Y. replies, “Are you happy today?” with the same exact voice. We don't face this problem at home. We face it with strangers. But it’s also getting better now.
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.
We gather your stories and ask you lots of questions. Your parent-child profiles are anonymous (or completely hidden) if you choose.
Sleuth presents you with new child matches as new parents share stories!
This child is just like your child
This child has some symptoms like your child
This child is not like yours
Search by condition
ADHD / ADD
Cortical Visual Impairment
Dyspraxia / DCD
Fetal Alcohol Syndrome
Global Developmental Delay
Obsessive-Compulsive Disorder (OCD)
Sensory Processing Disorder
Search by symptoms
Anger or tantrums
Delayed speech or vocabulary
Eating or diet issues
General sensory sensitivity
Grasping / Difficulty using hands
Latching / Lactation issues
Muscle weakness / Coordination
Repetitive babbling / speech / motions / tics
Social issues / restricted social interaction
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