I had been waiting to update on Levi’s development until I had ample info to actually share. Up until now, he had been getting various services through Regional Center. Since 11 months old, he was receiving up to 4 therapy sessions per week in Physical Therapy (PT), Developmental Therapy (DT), and Speech Therapy (ST). Once he turns 3 years old, Early Intervention (EI) services stop through Regional Center, but you can request the school district, in this case LAUSD, to evaluate and see if they will continue services. He had been doing so well, especially his progress in speech, but we decided to see if the school district thought he may need a little more to increase his future school readiness. I declined the exiting Psych eval through Regional Center, because its focus was if we were concerned about Autism Spectrum Disorders (ASD), which we were not.

 

The evals through LAUSD took a few months leading up to his 3rd birthday to complete. At the end of evals, an Individualized Education Plan (IEP) meeting is held with the district, where they tell you their findings and what services the offer/recommend… or possibly no services at all. So his eval with the school PT and APE (Adaptive PE) therapists went well. He scored above average in his gross motor skills, which is great! The meeting with the district nurse took a while, giving his entire health history including PFAPA and his food allergies. He passed the hearing and his eye sight […]


Levi’s apt with the rheumatologist was yesterday here at Children’s Hospital Los Angeles. Even though we recently went to see the 2 doc team in San Diego, I wanted to keep this apt (made 3 months ago) to make sure Levi doesn’t have any issues with arthritis or things with his joints. We are nearing the end of our Physical Therapy services and, though he is all caught up, the PT and I were still concerned about his lack of energy, enthusiasm, and his often downright refusal to walk. He is active at times, when it’s on his time and pace, but even then, not a lot of activity.

The apt started the way they always do- I spend 20 mins reciting Levi’s entire life history, health, services, behaviors, and my pregnancy. I also showed them the documents from other doctors and fever calendar. The rheumatologist, Dr. Reiff, comes in and we talk all about PFAPA for a while (my long post about PFAPA is HERE). I tell him about my concerns with his complaints of joint pain, and after he examines him and we talk, he says there is nothing going on with Levi’s joints other than the inflammation. What a relief!!! He did say some other interesting things:

The Doc said he is not surprised to hear that Levi has struggles with developmental delay. With Periodic Fever Syndromes, the child’s body is in a constant state of inflammation. He explained that all of our bodies have a […]

I haven’t written about our latest adventure in Levi’s health on my blog yet, but recently we finally have a lot of answers and so I am ready to share. Here is a quick back story…

Around spring of 2013 I realized Levi was getting sick. A lot. And always with a high fever lasting 4-6 days. When I would take him to the Pediatrician, they would check all the usual and sometimes even a UTI but everything was always negative and concluded he had some form of “virus”. This was really weird to me because he was never a very sick infant. Hardly at all! After having a particularly bad episode of fever in July, including x-rays, ER, blood draws, catheter, antibiotics, possible Kawasaki’s disease, and just about ready for hospital admission…. I knew something wasn’t right. But on the 7th day, the fever went away and he woke up like he was never sick at all. Umm… ok… I guess. Then 3 wks later it was back and I asked to see the specialist.

Since then I have been thrust into the world of  PFAPA (Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome). I recommend you read the information from this site about PFAPA before continuing, if you are not already familiar. I think does the best job of giving a quick run-down.

In Aug, we began seeing the Infectious Disease (ID) doctor, which is commonly the first step with “fever of unknown origin”. With her, he has had multiple […]