EEG follow up

Hello friends and family.

Just a few updates on our boy. 

We are still having some random episodes of whatever he is doing with his eyes and staring off. Some distress him, some do not. Our recent EEG was a first line of action. This was a quick 42 min EEG. He did not have an episode during that time. They did try and provoke one. They did several rounds of differing speeds of strobe lights. The strobe light was angled directly into his eyes just a few inches from his face. It made me nauseous just to be in the room with it, and it wasn’t shining towards me. Thankfully, Jonah really liked the strobe light. It was like peak visual sensory fun. He cried when the tech turned the light off. He sat really well for the test, so we were really proud of him. They will likely do an admitted EEG next. They had to do this short outpatient test in order to get insurance to cover a more thorough EEG which is next in the plan. An admitted EEG will be done for 24-48 hours where he will stay on the monitors for that entire time and go through a series of tests to provoke anything. They also don’t like for them to sleep well so they can wake him and do tricks to try and agitate him all in an effort to provoke any unusual brain activity. 

Neurology said further testing is on the horizon that would need to be done under anesthesia. Like an MRI. 

Kids with autism and sensitive systems like him do not typically tolerate anesthesia well so we have consulted with his Texas Dr. to get a plan in action to help support his body before and after sedation to prevent any adverse reactions or issues.

At this point we have declined to start daily seizure meds. We were given the option to start or wait. We have chosen to wait because the neurologist explained that unfortunately the medicine he would need to be on is not good for autistic kids. He explained it causes a lot of aggression and mood swings. When kids like him need to be on the medicine they often also need additional support meds to help with the side effects from the seizure meds. If he needs it, we will have to face that challenge but right now we are praying we are not going to end up in that situation. This is why we are doing everything we can, to fully know what we are dealing with before we do medicine. In order for us to feel comfortable with placing him on the meds we both agree we want undeniable proof of its necessity. The neurologist supports this stance. Currently we still have a rescue medicine if needed in the event of a large seizure or multiple episodes within an hour. So, we feel safe with this choice right now. Thankfully, we have not had to use it. 

We have finally received the results of his Organic Acids Test and we meet with his functional medicine doctor this week to go over the results. I am eager to see what comes of it and if we get any further insight to any health challenges we can address. Again, this test will show us a picture of any deficiencies in his body, or overgrowth of natural bacteria among other things. The more we know the better we can help him. 

In terms of walking, we are seeing lots of gained confidence. He is no longer needing one of us to be his target to walk to, instead he will independently initiate walking across the room to his target or to us. Today, he made his first steps in a familiar PUBLIC setting at his speech therapy clinic and hit his personal record for independent steps. 51 steps y’all!!! All on his own with no assistance, no walking device, and no holding on. Before today the only place he has walked on his own was at home or my parent’s house. Each week he gets slightly more confident in taking these steps in a normal daily setting rather than crawling. I feel it’s starting to click that walking is easier and faster than crawling. 

He still is unable to go from a sitting position to standing without crawling to an object to pull up on. We need to work on the ability to get into an isolated squat and stand, or kneel and come up one leg at a time. 

We are still praising the Lord for this improvement and gained skill. Watching him walk is one of the most beautiful things I have ever seen!

Prayers request:

We are still struggling with his eating. He had stopped eating foods he used to love. His food intake is sufficient in the amount he will eat but lacks in nutritional diversity. He only eats the same 2 meals each day and same 2 snack options. Nutritionally he isn’t getting a lot from it. We are supplementing as best we can but that sometimes makes the problem worse. Supplementing his diet with his protein shakes and fruit and veggie powders take the desire to eat solid food away but ensures he is fed well. Kids like Jonah will not “eat when they are hungry” They will not eat at all until they have the foods they feel safe to eat that meets their sensory and texture preferences. If not, they will refuse food all together. While the idea of just offering different foods and letting him get hungry enough to try it sounds like a solid plan for most, it’s not for him and would be very cruel to do so as he wouldn’t understand that logic. 

So, continue to pray for new food interest and intake. 

Pray for answers from further neurological tests in regard to the seizure activity. 

Continued prayers for speech. We are standing firm in prayer for FULL CONVERSATIONAL SPEECH!

Pray for continued mobility improvements as well!

Thank you all for your support.
We are right at half way to our fundraising goal and it's all thanks you all!
To God be the Glory!

-The Mabes