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1 year & 10 months old

Does A mom in the Bay Area have any other advice or experiences A mom in the Bay Area would like to share?

I spoke to a friend who is a pediatrician, and told her everything that we've done. She said the one thing that she does with her patients, if they are vomiting, is she asks them to see a neurologist. The neurologist might be worth highlighting because that was not on my pediatrician’s radar, and it made me feel a lot better once we went. The neurologist said, “See an audiologist, see a speech pathologist, and do physical therapy.” Which were the three most helpful things that we did. We wouldn't have done that if we had just been talking to the pediatrician. We love our pediatrician. We have two kids. This is our younger one. And that was just hard, because you don't want to tell her: “I don't think you're doing your job.” But it was definitely worth it to say, “Hey, we want to explore every option. We don't know what's going on. Is it worth it to see a neurologist?”

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11 years old

What was MG's experience seeking a diagnosis and treatment for M.?

I have an official diagnosis now. Ten years later, I found out. But they didn't have the technology in 2008, only enough to drive me crazy. Her developmental pediatrician encouraged me to get genetic testing. The diagnosis is that she has 11 chromosomal duplications on chromosome 13, but they still don’t know what that corresponds to. (As far as getting the testing, my insurance did pay for it because they had already seen issues at the amnio.) At around 6 months, we did Early Intervention. It wasn't really helpful. I don’t think her physical therapists were good. She hated it. She cried, and made a fuss. She couldn’t tolerate being on her tummy. She’s had physical therapy for a long time now. And as someone who has been dealing with physical therapists, and even had physical therapists myself, I feel like the people she had were not the best. Looking back, I should have gotten her occupational therapy earlier. Of course, I didn’t know to get her OT. I just thought she needed physical therapy. They gave her an evaluation for OT, but I didn’t pursue it, and they didn’t pursue it either. I should have said, “Of course, she needs OT”. As a teacher, I see quite a few parents who are in denial and don't take advantage of what Early Intervention and the Board of Education will offer. My daughter has had PT, OT, speech and counseling since pre-school through the Board of Ed. Everybody should take advantage of whatever the Board of Ed will give them. Get Early Intervention and when the time comes, do the IEP (Individualized Education Program). The earlier you get help, the more you can do. She went into a pre-K special ed program, and she’s been in special ed ever since. She currently is in a 12-1-1 (no more than 12 students per class; one full-time special education teacher; one full-time paraprofessional), and she has a full-time para. There are other skills that she couldn’t do, like she couldn’t drink from a straw. The OT and speech helped her. She couldn’t kiss for a long time. Her therapists taught her how to pucker and kiss. Now, her gross motor skills are doing well. She runs if she wants to. She is a toe-walker a bit, but her physical therapist says it’s just habit. She went to a special ed preschool on the 4th floor of a building, so she had to be carried up. And then, before long, she was climbing steps better than I can do. But she's very delayed with fine motor skills to this day. If you ask her to color, she’ll scribble like she’s two years old. And she wouldn’t even do that a year ago (when she was 10). In addition, here's one that’s difficult, she still wears a pull-up. Other doctors? She did see a pediatric gastroenterologist, because she may have IBS, but the doctor said she was fine. She has been to the cardiologist twice. When she was little, they saw a space or a hole in the wall of her heart. Years later, they didn’t see the space anymore, and they inferred that it had closed as she aged. She doesn’t really have autism. She’s very loving and makes good eye contact. Physically, she’s all over me - sometimes too much, so. But she has some autism-like symptoms such as repeating herself. A therapist who specializes in diapers said, “Why don’t you start ABA” - ABA is Applied Behavioral Analysis. I recommend it, but a lot depends on the ABA technician you get. The first one was horrible. My daughter is smart and she knows how to push your buttons. She could tell immediately if you were going to be tough or not. Fortunately, we next got someone who works as a paraprofessional at her school who was very confident. We’ve been doing this for a couple of years now. To get the ABA, she needed an autism diagnosis from her pediatrician.



11 years old

When and why did LH start to feel concerned about M.'s health and development?

In utero, we already had a few challenges that came up. We found out about clubfoot at one of the early scans. It was a non-issue really, in the scheme of things. When M. was born, he had left clubfoot and torticollis. Those were the only issues of note. We started seeing a physical therapist right away for torticollis at the Hospital for Special Surgery in New York City. My dad, who is a retired physician, noticed that M.’s eyes were non-reactive to light at about three months old. (It wasn't the pediatrician who noticed. It was my dad.) That is where I would say our journey really began. Then, one by one, other issues started to crop up over the years. For his vision, we saw an ophthalmologist. We went to one ophthalmologist when he was still three months old. This is one of those stories: The doctor was like, “Well, he could be blind.” We thought, “What? What are you saying to us?” So that guy was out. We switched to another doctor. And actually, M.’s eyes just kind of caught up to other kids. He was diagnosed with cortical visual impairment years later, and he wears glasses, but his eyes did catch up to a degree. Some of my friends have a similar story, too. You end up seeing a lot of different physicians to get all the information you need. But after this, M. wasn't really meeting the expected milestones. We had gotten into Early Intervention early. He must have been six months old. He needed physical therapy because he wasn’t rolling over and the torticollis was unresolved. Then, at 12 months, M. wasn't really verbalizing at all. I think one of the main reasons M. was given an autism diagnosis early on was because of his visual impairments. It's the way he used vision: when he's thinking, he looks someplace else. When he's walking, he doesn't look and instead he uses his feet to feel. He wasn't he wasn't making eye contact when you were talking to him, and then he also wasn't speaking. The autism diagnosis is definitely not correct. It helped us get therapy early on, but it also was not accurate. Later on, that diagnosis also didn’t help get other kinds of support. I always knew it wasn't autism because of his social engagement. M. was always so sweet and engaging. He was also given a diagnosis of PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified). I don't think they give it anymore. It was a catch all: “We don't know what's happening here, so we’ve got to give you something.”



3 years & 6 months old

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.

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At 24 months old, among children with Cortical Visual Impairment

70%have started putting two or more words together
30%have not yet started putting two or more words together
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