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Does A mother in Cairo have any other advice or experiences A mother in Cairo would like to share?
I am working on research on autism. I work in an IVF center, and we do a next generation sequencing before transferring embryos. My point of research is on sperm DNA fragmentation. The DNA fragmentation somehow is linked to autism, directly and indirectly, through the male age at time of conception. That’s all I’m able to say. It's very interesting, and there is a big correlation. We are working to prove it. We're not there yet. It will take a long time to follow up with kids as they grow up. In Egypt, at the Learning Resource Center, you can attend workshops. They schedule them twice or three times per year, for autism mainly. They have workshops on how to implement speech therapy at home, or guidelines for parenting autistic children, or guidelines for parenting kids with sensory disorders. They also have many workshops for caregivers as well. They are all very expensive. In Egypt, there is no medical insurance, or any kind of support for special needs. You have to pay for it all for your child. All the professional, reputable places are private, and they are all expensive. You can go to governmental hospitals. They will schedule one session per month or one session every two weeks. The therapist himself will forget. This is a disaster situation. But kids with chromosomal or genetic disorders can receive more help than autistics. Autism is not well known in Egypt. People accept Down syndrome or other disorders but they don't know autism. What is autism? What does it look like? They do not understand that his physical appearance is totally normal. They expect him to look different. The Advanced Society for Autism is very, very helpful and inexpensive in comparison to others. The founder of the Advanced Society has an autistic kid who is now 28 years old, so the Advanced Society was established about 28 years ago. They also provide free assessments for parents who cannot afford it. Every two weeks, they have a workshop or a lecture on a certain topic regarding autism, specifically, for the parents of the children in the Advanced Society school. For extra patients like me, they run parenting sessions one-on-one based on your child. And with every reassessment, we get new programs with new targets. They explain what other kids do and what we have to expect from Y. I have made many friends from there, parents in situations approximately the same as ours. We hear the stories from each other and we talk every week at the sessions. But I want to talk with parents whose children are older, to know how life might change for Y. We are almost caught up in cognitive and psychomotor assessments, but we are still behind in the speech. Is he going to catch up? Will therapy always be about catching up, or will it become about supporting him?
When and why did GF start to feel concerned about C.'s health and development?
My son (nicknamed C.) is a sensory seeker. He's very active. At 18 months, he was constantly moving and doing a lot of physical activities that I didn't see other kids his age do. He also had an enormous amount of trouble self-soothing at night to go to sleep. He was having trouble going from a highly aroused state to a calm, relaxed state where he could fall asleep. We tried sleep training. We tried to do all the typical things that people tell you to do at that age. None of it worked. I just felt like something was off. Like there was something else going on. And when he would wake up in the middle of the night, which a lot of kids that age still do, he just couldn't go back to sleep. He was in a highly vigilant state, wide awake. It was at 18 months that I first mentioned this to his pediatrician. She said, “Well, his nervous system is still maturing. Let's see what happens”. As the months went on, and he started to walk, we noticed that it was like he had no sense of where he was. And then feeding challenges started: he was a really good eater until he wasn't. It was very dramatic. We felt like there might have been some sensory-related stuff going on with either what we were putting in his mouth or what he was seeing. We still struggle with feeding. I mean, it's gotten better. But picky eating was a big indicator of his condition. Then there was the activity level and the lack of focus. C. had a hard time staying focused on one activity. My son was born extremely premature at 24 weeks. Not everybody knows that 24 weeks is the line of viability. He was literally four days after the line. It was a very traumatic birth for him and also a traumatic labor for me. He was born weighing 705 grams. I'll tell you why I say it in “grams.” Because when they are born that early, every gram matters. They consider your probability of surviving partly based on the number of grams you weigh at birth. After he was born, all the nurses kept coming into the recovery room saying, “Oh my! He's 705 grams! Isn't that amazing?” There was like this celebration. He was a little bigger than normal for 24 weeks, but 705 grams is actually one pound and nine ounces. He was tiny. He fit in the palm of my hand. He was very, very small. He spent about five months in the NICU, and it was a very complicated NICU journey for him. Every child in the NICU has their own story. He was challenged with a host of medical issues that almost claimed his life, and also were potentially going to impact his development. When we came out of the NICU we were linked with Strong Start, which is Washington D.C.’s version of early intervention. We started Strong Start at about four months of age, if we correct his age for his premature birth, or eight months old from birth. We were working on some very basic things around gross motor skills, making sure he was moving his head right, that he was making eye contact, some of those typical infant developmental milestones. From the beginning, I had a sense of vigilance around potential delays in his development. In that respect, I think my story might be a little bit different than most families. I already had a heightened awareness that things were probably not going to be typical. The challenges that I had were really the struggles with the system. We knew C. was going to need a lot of therapy. We knew that he was potentially going to be diagnosed with a host of medical conditions that we couldn't predict in his early infant years. I was very proactive about it. But it was still very, very challenging to get the right services, to know who the right people were to talk to, to get coverage from insurance. I always tell people who have questions about what it is like to have a child who was born early or has special needs: this is all really hard. You have the typical challenges of raising an infant. And then you also are a medical coordinator, you’re an insurance advocate, and you're an expert at X, Y and Z diagnosis. You have a host of different hats that you have to put on every single day. The system is not always cut out to support you, right? It's almost the opposite. There are some days where I wake up feeling, “Okay, I'm in fight mode. Let's go!” I have to fight to get through the day, to be able to accomplish the things that my son needs in order to continue to develop and to thrive. That’s our overarching experience. He is now three years and seven months old. When you're born early, they use “corrected age” (based on the date you should have been born, so to speak, if you came to full term at 40 weeks) versus actual age for the first two years of life, because there is a developmental lag. The medical and school systems assume that by the time you are two years old, the child should have caught up, unless there's a major medical issue. Then after two years, you use only on the actual birthday so to speak. So he's actually three years and seven months from his day of birth.
When and why did A mom in the Bay Area start to feel concerned about R.'s health and development?
My son is almost two years old now. Last summer (when he was about 1 year old), he was sick for two or three weeks in a row. We weren't too concerned at the time, and then suddenly – well, it wasn’t sudden, but it seemed sudden – he lost 10% of his body weight within a month. He got to the point where he was so backed up, he wasn't eating anymore. I'm sure there were signs earlier that we didn't catch. For instance, he was not going to the bathroom regularly. And between me and my husband and our childcare, we never put that together. By the time we saw all the symptoms, he wasn't eating very much. And when he did, he’d throw up. Lots of throwing up. And he was in massive pain all the time. He was in such pain a few times that we had to go to Urgent Care. It was the worst. The scary thing was also that he just stopped all of the progression that he had been making. He had been cruising and starting to walk, and he just stopped everything. He wasn't talking yet, and he just became listless. It was terrifying. We never diagnosed why he lost all the weight. We found that there were a bunch of different issues, gastrointestinal issues. The weight came back first, but the bigger problem was that it took longer for him to get back to any physical and speech milestones. He started walking only once he had started on a new formula for a few months and gained weight. Now, we're actually seeing progression in his speech, which we haven't seen in the past. Up until he was well over 18 months old, he had no words that were consistent. I'm sure they’re supposed to have at least five to 10 words (or so) at that stage. That's when we went to a speech pathologist, and they acknowledged that he should have some consistent words. Recently, he's developed around 20 consistent words, and he's imitating, and you can just see him gaining confidence and gaining consistency. I'm feeling cautiously optimistic.
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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