Andre’s Recovery from OMAS and Neuroblastoma

please read the updates posted below, I just changed the title of the fundraiser to the proper diagnosis as he was misdiagnosed in December as having acute cerebellitis / acute cerebellar ataxia.

Today February 24th, Andre was diagnosed with having a rare disease called Opsoclonus myoclonus ataxia syndrome and the presence of a tumor, called neuroblastoma, was confirmed via full body MRI. He will be starting treatment promptly and in the next 2-3 days will be having surgery to remove the tumor.

OMAS (opsoclonus myoclonus ataxia syndrome) is a rare neurological disorder usually caused by a cancerous tumor called neuroblastoma. Most commonly found in young children at an average age of 18 months. It is never a tumor in the brain, but instead located in the body: neuroblastoma are made of nerve cells and usually on the adrenal glands on top of the kidneys. It is also very common for children with OMAS to be misdiagnosed as having Acute Cerebellar Ataxia/Cerebellitis. In Andre’s case, his eyes did not start having the erratic movements until late January, and obviously his condition did not get better. ACA is a benign condition that usually gets better without any treatment. He also never got full body imaging in December, only his head/brain was scanned then, so the tumor was missed. At his neurology follow up on Friday feb 23, the neurologist told us to go to the hospital since he had the erratic eye movements called opsoclonus, which clued them into looking further into what’s causing it. So we went to the hospital from there.

OMAS symptoms include ataxia, opsoclonus (very erratic eye movements, distinct from nystagmus), can have rage attacks and sleep issues as well. In Andre’s case, he had a neuroblastoma right under his right kidney that was removed by surgery on 2/29/2024. As we transition back home from the hospital, that doesn’t mean this is over. He will have to continue with treatment, therapies, and follow up appointments regularly. Medication treatment for OMAS can be for a year or longer. He will have to go in-clinic and be set up for IV medication, infusing for nearly 8 hours at a time. That’s just for the OMAS. We are still awaiting biopsy results for the tumor and an enlarged lymph node that was removed. When the results come in, we will have a clearer picture as to what the treatment for the cancer will be.

Before Andre got sick in December, I was planning on putting him in childcare and starting an internship since I’m graduating from NVCC this spring. My plans have now drastically changed as Andre needs me (his mother) as his full time caregiver with his medical condition. He needs 100% full hands-on supervision as he still cannot walk or stand up independently since he has no balance due to the ataxia. With the treatment he’s receiving for the OMAS, his immune system is compromised and he can’t even receive his routine vaccinations at his 2yr well check due to the rituximab.

Funds will directly go towards any necessities for our family during this time like living expenses, food, medical co-pays, equipment, gas, etc. thank you so much for reading and please share if possible.

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original post and history of his condition

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Hello everyone who is reading this!

My name is Amanda Salmeron and my son’s name is Andre and he is 21 months old. In the middle of December 2023, I noticed (then 19 months old) Andre was becoming very clumsy and the first couple of days I brushed it off thinking that he was just having an off day or attributing it to his age and the fact that he had only been walking for a month at that point. (He was a little bit of a late walker starting at 18 months old!) through those couple of days his condition quickly deteriorated and he regressed and was unable to walk or balance himself even sitting upright.

I took him to the pediatrician on Friday December 15th and the doctor told us to go straight to the emergency room at Fairfax INOVA. I was terrified. At the emergency room they did a CT and also told us that Andre would need to be admitted for more testing. While admitted in the children’s hospital, he had blood work, a spinal tap, and an MRI done which he needed to be put under anesthesia for the spinal and MRI. Thankfully, all of his labs and results came back normal which led to him being diagnosed with acute cerebellitis/ acute cerebellar ataxia caused by a virus he had 3 weeks prior to the ataxia starting. It is one of the most common causes of ataxia in children especially in this age range. Basically, his immune system attacked and inflamed his cerebellum which is the part of the brain that controls your coordination and body movements. Symptoms include nystagmus (abnormal eye movement), muscle tremors, loss of coordination, and a wide gait.

The doctors say that he is likely to recover (although very rarely some kids do not recover and have lasting neurological problems) but that it can take months to return to baseline.

Unfortunately, the neurologist and physical therapy were both booked until the end of January. He just had his visit with the neurologist on January 29th 2024. He just started intensive outpatient physical therapy through INOVA on January 30th and will be going to PT twice a week going forward.

It has been almost 6 weeks and he still has the ataxia and cannot walk independently. His cognition is unaffected by this condition, but he is very frustrated by his limitations. He is a major fall risk due to the lack of balance, therefore he needs to be very closely supervised within arms reach at all times. Along with all of the appointments and therapies, it is a lot for me by myself. Andre also has a 4 year old sister and it is just me as the primary caregiver for both of them.

I was hesitant to make this GFM but whatever is donated will directly go towards necessities like adaptive equipment, gas, food, any outstanding medical balances including co-pays etc.

Thank you for reading and have a blessed day!