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R.

Male | 1 year & 10 months

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R.

Male | 1 year & 10 months

R.'s Journey, as told by A mom in the Bay Area

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.

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?”

What was A mom in the Bay Area's experience seeking a diagnosis and treatment for R.?

For the first two to three weeks, the pediatrician wasn't that concerned. She's an excellent pediatrician, but she just thought he had the flu and there were some complications. Then, we thought he was constipated. But we got an x-ray, and he was constipated to the point where he might have to go into the hospital for a procedure. This is TMI, but parents are good with this kind of info: There was a whole process of giving him an enema a day, and lots of Miralax and laxatives. That cleaned him out. We put him on formula for older kids. And after that, he gained the weight back. Now his digestion is fine, but he's almost two, and he's still having formula twice a day. I have an appointment with a GI doctor tomorrow to find out if that is that normal. And if not, what do we do next? The closest we have to a diagnosis is that it’s a GI disorder. The only way to diagnose it fully would be invasive, I think testing a sample of the abdominal lining. And if this is a GI disorder, it’s still treated by the formula we're giving him. So his doctor basically said, “Keep the formula up. If it works, don't mess with it. We won't try to diagnose for now.” We have a family history of ulcerative colitis, so we think it could be something in that sort of category. The other thing that might be worth noting is he has six pretty big allergies, which I'm sure contribute to all of this: Milk, eggs, peanuts, pistachios, sesame, and cashews. I don't want to say that our pediatrician wasn't helpful, but the process wasn't rigorous. You know, when your kid is sick and is that young, you expect a team of doctors to help you figure out what to do. It wasn't that. And the scary thing was, “Why?” It just felt like we couldn't do anything. We have no medical training, me or my husband. We were new to all of this. The doctor was telling us she wasn't that worried, but we could tell something was wrong. We resorted to Googling, which was terrible. I ended up stopping that because it was just terrifying. We hounded our doctor to see different specialists. We ended up going to a GI doctor (a gastroenterologist) and the neurologist. Those were the two biggies. And an allergist. We did not find anything definitive from those appointments. They won't rule anything out, which is frustrating, but they think he is good. They said he seemed normal - except he hadn't spoken. You'd expect a child of his age to say words at that point. We went to a hearing specialist, but his hearing is fine. Speech therapy has just started, and they said he's slow, compared to other kids. They don't use the word “slow,” but most kids his age have a lot more words than he does. Again, no one's particularly worried, for better or worse. There's no explanation. Our first speech therapist appointment was in January, actually, because they don't typically see kids until 18 months - or at least that's what we were told. We only did physical therapy once. For speech therapy, we should be going weekly, but there's a delay to set up appointments, and with COVID everything got messed up. We basically had a four-to-six month period of just not knowing if my son’s progression was normal, if there was anything else wrong. Now, he seems to be trending better. But we never got a firm diagnosis, and he's slow at talking and was slow at walking as a result of his condition.

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