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S.

Male | 3 years & 6 months

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S.

Male | 3 years & 6 months

S.'s Journey, as told by Jeff

When and why did Jeff start to feel concerned about S.'s health and development?

Our son (nicknamed S.) is an interesting case. If you were to ever see him, you might think he was two years old, not his actual age of three-and-a-half. Not only does he model some immature behaviors, though he's well-behaved, but he's very small for his age. He wears size-two clothes still. He is getting a little taller, and he eats like a horse. But he just stays very thin. He’s not even 30 pounds. He has a little sister who is 10 months old who is catching up to him in weight. She's close to 20 pounds. She’s right around the 50th percentile for everything. He's still around 4%. On his growth chart, he has been less than the 5th percentile his whole life. And then speech-wise, he's actually more like a nine month old (not a three-and-a-half year old). For whatever reason, again, we can't figure it out. His expressive delay is huge and he does not talk. I would say that what he understands is a lot closer to a match for his physical size (of 2 years old). If we say “Hey, slow down,” if we're outside walking around, and he gets a little too far ahead, he'll slow down. If we say, “Okay, we're about to cross the street. We’ve got to hold hands,” he puts his hands up. He knows we're going to cross. If I say, “Alright, you’ve got to sit down in your chair.” Then, instead of standing up, he sits down. But he can’t talk. He's so small physically, and that has got to be holding him back in some way. I'm probably wrong, but I feel like that in my heart. Our son was born with a couple of strikes against him. His mother had a two-vessel cord during the pregnancy . He was basically always very, very tiny, through the entire process. To the point where we even got geneticists involved. And they were telling us it could be some kind of skeletal dysplasia. It could be this. It could be that. They were telling us a number of things that it could possibly be. When S. was born, he was supposed to go naturally. We ended up trying to induce early. I think it was three-and-a-half weeks early. That didn't work, so they did a caesarean. When we went home from the hospital, he was actually below five pounds. Then, right away, he had an inguinal hernia, so he went through surgery. As well as that, he had digestive issues. He was allergic to milk. It took us a little while to figure out what was going on. As he grew, we noticed that he wasn't hitting a lot of his milestones, whether it was movement, or speech, or others. He finally started crawling around a year old but he was not very good at it. And he didn't walk independently until he was just about two. We started to notice when he wasn't developing language. He also has a little bit of a lazy eye, which I think is genetic. I had the same thing when I was a child. These were all little things that we knew were somehow contributing to what was happening. Those were our first indications when we started to put together these puzzle pieces.

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

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 Jeff's experience seeking a diagnosis and treatment for S.?

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.

S.'s Medical Notes

Signs & Symptoms

Diagnosed Conditions

Treatments & Therapies

Medication

RDI therapy

Additional Comments

On Prescribed medication

The medication caused a personality change and made him droopy with no benefits for his speech delay, and we are stopping it after a couple months.

On Speech therapy

This was in preschool

On Physical therapy

This was in preschool

On Early Intervention

Visits once per week were not especially helpful.

On Occupational therapy

This was in preschool
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