Not only is it SNOWING IN APRIL, but (phew!) I feel like it has been the hottest of minutes since I’ve given an update on our family. I think the last one was in January/February when I found out I have an autoimmune disease. Prior to that was a slew of diagnoses for my son as well as some procedures/results we were waiting on.
Things that were pending for my kids were an MRI for my son, his genetics testing, and probably not mentioned last time but definitely not forgotten was my daughter’s appointment in the headache clinic at the children’s hospital.
Since I last left you on the edge of your seats, we found out that my son has a spot on his brain called a gliosis. Apparently, it’s benign and has probably been there his entire life. It’s basically a scar on his brain and it could have been caused by any number of things to include but not limited to: a head injury (a speaker fell on him when he was 22 months old, LONG STORY), severe headache (that’s weird?), a birth injury (he had a nucal cord), or it developed in utero. Initially, we were told that it means nothing and it’s basically a freckle/birthmark on his brain. However, a follow up appointment with a psychiatrist at the Tourette Clinic who consulted the neuropsychiatrist said that based on the location of the gliosis (in my son’s frontal lobe), it’s very possible that it is contributing to and/or causing disruptions in the way his brain communicates. This could be leading to his difficulty with impulse control. He’s been in occupational therapy since August, and bless the OT’s heart, she has tried and tried to get him to a point where he can control his impulsivity better, but it just.doesn’t.click. with him, and now we know why. I also think it’s because he’s young. Let’s give the kid a break, FCOL. Honestly, the best thing that has helped him is medication. I can’t even say that it’s unfortunate that we had to medicate him because honestly, I’ve never seen him happier. I can’t remember if I mentioned it in the prior post about our family, but he belly laughs, and giggles, and plays, and truly enjoys his environment. He’s doing so much better with transitions and unexpected events. His tics have reduced to an almost unnoticeable point, and his hyperactivity is better controlled. If you’re on the fence about medicating for ADHD and/or Tourette Syndrome, and you’ve already tried everything else, just give it a shot. I’m glad we did, but that choice was not easily made, nor is it something that works for every family, but it did for ours.
His genetic work up was unremarkable. The only thing that popped up was a recessive gene for autosomal recessive retinal cone dystrophy, which is only impactful if he marries/has kids with someone who is also a carrier of this same gene. This condition does not answer why my son has hypotonia, therefore his neurologist wants to do genetic testing of my husband and I to see if there are more answers.
Regarding my daughter, she had a pretty significant concussion in May of 2017, but didn’t start having headaches until September of 2017. After a couple of months of these headaches, I took her to her pediatrician and he did a work up on her and found nothing abnormal. He recommended allergy medication, which really hasn’t changed anything. The headaches have increased in frequency, and she’s had some additional symptoms within the last month to include blurred vision, temporary loss of vision, clumsiness, and facial numbness (specifically her mouth). She’s still young and I haven’t spoken to her about these symptoms, so I don’t think I’m contributing to/giving her the vocabulary to know these things are out of the ordinary. These are things that she brings up to me when I ask her how her day went. I found out about the headache clinic at our local children’s hospital and asked her pediatrician for a referral. He thought it was appropriate and today was the appointment.
Based on the questionnaire that was sent to us to fill out, and my daughter’s neuro exam, the neurologist said that she’s experiencing some atypical symptoms of headaches. She wants to check for any “structural changes” in her brain, aka: Tumor Check. She’s going to have an MRI next week to find out what’s going on in her brain. I’m hoping that it’s nothing, so please pray that it’s nothing. She also said she wants to see if there is any “damage to the brain from the concussion”. I’m hoping for answers, but I’m also hoping the MRI is unremarkable and praying these are just headaches. The doctor even ordered thyroid function testing as well as antibody testing, and a Celiac panel. Given my history it seemed appropriate to order those tests and the doctor also said that kids with headaches can often have Celiac/thyroid/autoimmune issues. Let’s hope there are no “structural changes” to her brain, but if the blood work shows autoimmune issues, we’ve got a whole new can of worms to deal with. And I’ll cross that bridge when I get to it.
Since January, it’s been an exercise in patience. An exercise in not getting ahead of myself. An exercise of realizing what’s in my control and what is not. An exercise in allowing myself to be vulnerable, allowing myself to relax, and allowing myself to hold day-to-day moments close to my heart. To not wallow in the thoughts of what the future brings, because that is not my job. My job is to love my family today. To do what I can today for them in order to give them a better tomorrow, and to not fixate on next week, next month, the next appointment, the next quarter, the next year. I spent too much time focusing on the future and what could happen that I couldn’t be present in what’s going on right in that minute that I can control. Could it have been worry? Absolutely. But again, that’s not my job. It’s God’s job. Thank you, Lord, for carrying my burdens.