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baby boy

Male | 1 year & 11 months

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baby boy

Male | 1 year & 11 months

baby boy's Journey, as told by J

When and why did J start to feel concerned about baby boy's health and development?

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.

Does J have any other advice or experiences J would like to share?

J hasn't answered this question yet.

What was J's experience seeking a diagnosis and treatment for baby boy?

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.

baby boy's Medical Notes

Signs & Symptoms

Diagnosed Conditions

Treatments & Therapies

Additional Comments

On Helmet therapy

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. It didn't make too much progress in my opinion.

On expressive language delay

He says, “Mama”. He was saying, “Papa” but he stopped and that's where we are today.

On walking without looking

He bumps into things, trips, and falls.

On receptive language delay

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.

On walking without coordination

He walks like a penguin, as though he doesn't have muscles in his legs.
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