At the beginning of April, we started noticing August complaining of strange pain and not sleeping well at night. He would get frustrated when we lifted his legs for diaper changes and would wake up very upset and trembling. We brought him to Urgent Care on Friday 4/1 and was diagnosed with an ear infection and given augmentin. At that point, we thought the joint pain was just related to growing pains.
On Saturday 4/2, August broke out in a rash so we discontinued the antibiotic for further consult.
On Tuesday 4/4 our loving daycare providers mentioned that August was just not himself and had concerning discomfort in his lower extremities. That night August spiked a high fever and appeared noticeably more uncomfortable. We controlled the fever with Motrin through the night and that appeared to control the shakiness as well.
On Wednesday 4/5 August's shakiness became more obvious and he started getting what we called “Bambi legs”. He also refused to eat and only wanted to stay in his bed and sleep. At that point, we brought him back to Urgent Care where they did a blood draw and found that his white blood cell count and inflammation markers were elevated. We were sent home with a new antibiotic and scheduled a follow-up with pediatrics in Marshall.
On Thursday 4/7 we saw a pediatrician in Marshall who did follow-up blood work which show even more elevated levels from the work-up done 12 hours prior. At that point, the pediatrician ordered several tests (Lymes, strep, etc.) to try and narrow down what infection August was battling and we were sent home.
On Friday morning 4/8 August woke up and was no longer able to stand or sit up with his own strength. At that point, we had made the decision to take him to the ER in Sioux Falls so we would have access to all the lab and testing needed in order to get some answers.
As soon as we got to the ER the decision was made that August would need to be admitted and we started extensive testing including X-rays of the hips and chest, urine samples, and more blood work. None of the tests came up with any red flags outside of indications of infection and inflammation. Upon admittance, the pediatrician narrowed the infection to the lower back and ordered an MRI of the hips and lumbar spine. He was sedated and completed a three-hour MRI. The MRI showed that his spinal cord was white and the neurologist suggested we do a spinal tap to determine the cause.
On Sunday 4/10, August was again sedated for a lumbar puncture and an MRI of the brain. The lumbar puncture went well but August came out of sedation halfway through the MRI so we weren’t able to get a complete set of pictures.
The results showed that August has a rare neurological condition, Guillain-Barre Syndrome (GBS), a condition where the immune system attacks the nerves. We don’t know - and may never know - what the initial infection was that caused the GBS.
Fortunately, our doctors said kids typically respond quickly to treatment and rarely experience long-term effects. They also believe we caught it in the early stages. He was started on an IVIG treatment on 4/10 and will continue those treatments (4-6 hours per day) for at least 5 days.
We have seen slight improvements but there are still a lot of unknowns and likely a long road of recovery ahead. Please pray for a healthy journey + recovery for August, for patience and grace for his parents, and for smart, helpful medical staff at Avera in Sioux Falls.
It’s been awhile since we posted an update on August because his recovery has been so great over the past month!
August continues to go to physical therapy and occupational therapy twice a week to help rebuild the strength, endurance and balance he lost from the GBS. He has enjoyed “playing” with Ms Janet and Ms Andrea who have been rockstar therapists at Avera here in Marshall. Today he officially graduated from OT but will need to be seen again in a month to make sure he isn’t regressing.
We are still scheduled in physical therapy through September and hoping to see more progress with his right foot and overall balance and endurance.
It’s hard to believe this all started less than 2 months ago. Grateful for the continued prayers and love having our rowdy, rambunctious two year old back!
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