It seems that every few weeks brings us more surprises and brings us closer and closer to full recovery. Irlen as my son calls his visual disturbance has been staying away for longer and longer in between rounds. He can now go almost all week without using his reading filters or expressing problems. He says he can see fine on rounds and for 5-6 days after! We have also gotten some great gains in tactile defensiveness in that he is able to touch paper items now for a limited time. He says they bother him still but not as much as they used too. He’s not experiencing the shocking sensation he used to get when touching it. Now it’s just irritating but tolerable for short periods of time. A few rounds back I got up one morning to find him dressed in cargo pants, a polo shirt and asking me if he could brush his hair! I about fell over. First he doesn’t wear cargos. Only sweats, saying that other types of pants are too scratchy. Second….usually no polo shirts, doesn’t like collars on his neck and thirdly he’d never ask to brush his hair. He hates having it brushed. We certainly encouraged him and expressed our happiness that he had gotten dressed, combed his hair and looked very handsome in those dress clothes.
As we progress through rounds his sensory issues fluctuate. Sometimes he will sleep in sweats, other times not. But overall we are seeing a reduction in sensory issue altogether.
His yeast has been gone for over a month now. Even on rounds! He no longer needs anti-fungals at all. About two weeks ago I noticed a change in his behavior. He was very irritable, moody, and defiant and just all around difficult. Not like himself at all. Thinking he had bacteria now that the yeast was gone, we put him Culturelle. Within four hours of his first dose he was already more pleasant. He’s been on it for a week now and he’s back to himself again! He’s doing so well with rounds every week and making a lot of progress that it’s been worth the loss of sleep… I am glad we have been able to concentrate so much on getting the rounds in each week so we can make some huge headway.
We do still have some issues. Sometimes he doesn’t’ understand what you mean. He hears you perfectly but he doesn’t get it until you explain it better. Other times he does not get social cues like when to stop a conversation…but any of the little issues he has left are not noticeable to anyone we meet in public. There are still sensory concerns with riding in the car too long, needing to hop but nothing like how he was. I don’t want to give anyone the impression that we just did a few rounds and bam! The kid was fixed. This has been a long road. It will be four years in April. But four years of persistence no matter how tired I got. Giving the supplements, doing the rounds and watching him change, progress and reclaim the little boy he was supposed to be. I can hardly wait to see what this year’s hair test will show! I still wait for the normal hair test. I don’t think it will be this year though…..but closer would be nice. But if it’s not, I’m grateful for all we have gotten so far and we will push on!