Here goes our 21 days of prescription Nystatin anti-fungal liquid. Still looking for the next one thing that might make a very noticeable change and unlock another door for G.
Day 1: 2/18/20: G started Nystatin 3 times a day
Through the next few days he started putting his his head upside down on the pillow in his crib. (Yeast die-off signs?) Still grinding teeth.
He started making loud short screams at times, unlike ever before. Kind of like quick yelps here and there. (Yeast die-off signs?)
As he falls asleep for a nap or at night, he will do this short scream a few times as well. It’s really loud.
Day 2: 2/19/20 —
Day 3: 2/20/20 —
Day 4: 2/21/20: G started touching the walls or the tables, as if he sees something like a pattern, and stares at it a while while kind of scratching the surface with his nails. He never does this. Still grinding teeth.
Day 5: 2/22/20 —
Day 6: 2/23/20: Took G on a long car trip with his older brother (1 hour 30 minutes each way) He did exceptionally well, was never mad or sad, and contently looked out the window.
He still did not want to walk when we got to our destination, because it was so windy, but he tolerated being in the stroller for a long time, as usual.
The trip home was wonderful and quiet most of the time. There was hardly any stimming or stereotypy. He also did not get upset and cry when I didn’t play the songs he usually wants in the car. Instead I just played a lot of relaxing music that he and his brother could both enjoy. I was overall just really surprised by the trip.
When we got home he ate and went for a nap. He was in the crib at around 4:20 and did a lot of the quick screams. Put his head upside down many times. Fell asleep at 5:45, grinding teeth, and woke him up at 6:30.
It really seems like he is having symptoms of yeast die off. So I started reading about how to make gluten free and yeast free bread again. The bread he always eats (Franz multi-seed gluten free bread) is made with yeast. Also want to finally get rid of the Goldfish. Finding a yeast free cheese cracker is difficult. I like that he eats something that is crunchy – if we take crackers away, everything he eats is very soft. I’m afraid he would reject new foods in the near future that are crunchy if he forgets what it’s like to chew that way.
Day 7: 2/24/20: G slept nine hours last night. He had a great, calm morning. When he woke up, he was putting his head upside down on the pillow. Then as usual when we go to therapy he tries to hide his eyes under his beanie or behind his hands, and walk with his eyes covered up, as if it’s too bright outside or he doesn’t want to look where he is going. He also leans on me, falls on me, like being drunk. It’s kind of like when he doesn’t really want to go somewhere, but is just being agreeable, he acts wobbly and puts his face into my leg or into my jacket and walks super slowly. When we finally got downstairs at therapy, he put his backpack on the hook and began to walk normally again and not hide his eyes anymore. At home in the afternoon he was being frustrated a few times about wanting Goldfish instead of puree. But when he went to the crib at 4, he was asleep for his nap by 4:30.
Day 8: 2/25/20: G is still doing that “drunk” kind of thing, hiding into my legs, not watching where he is going, and laying and climbing in different ways. But there’s something different about him again today besides this wobbly, explorative stuff. He is more focused and calm, less stereotypy until he watches videos. Napped today and did not want to wake up at all, as usual but he was even more of a little log. When he finally got up, I noticed his hands were really cold and almost damp.
Day 9: 2/26/20: Still grinding teeth. Limp noodle G is even more so. He walks like he is wet spaghetti. I finally figured out how to describe it – he is mostly doing it during transitions. If he has to go downstairs, upstairs, get ready to go to the car, or go to the bathtub, he becomes limp as he walks, it’s hard to get him to walk, and he wants to hide his entire face under his hat or my jacket. Afternoon update: Therapist who was with him for 2.5 hours during the afternoon said he was very wobbly and laying on her. The other therapists this week haven’t noticed it so today must have been pretty intense for that behavior. She said his focus time was short the later it got in the afternoon. When he got home he was very jumpy and shook his head fast a lot (like the saying no motion). He never shakes his head.. Later he took a nap but it was very short and he woke up crying, then he was screaming and wanted water. I emailed one of his doctors and they said to stop the Nystatin. I asked them if they think the yeast died off already? Still waiting for reply. If all these wobbly symptoms were temporary, I would want to complete the 21 day treatment and then stop. But if did keep acting like these for the next few days, and shaking his head, and throwing his head back into the pillows, I would start to wonder myself if I should stop. I can’t believe Nystatin is having such a big effect on his behavior. He is still so happy and loving, and never angry, just a few screams here and there, but this strange behavior must mean something.
Day 10: 2/27/20: First day without any doses of Nystatin: He was definitely less wobbly and still very calm. He had a lot of trouble hanging up his backpack and jacket at therapy. When I picked him up, his therapist said he was not wobbly or leaning on anything today. He had a great day and almost ate mashed potatoes. At home he was leaning into me and hiding again on the way to the front door. Put pau d’arco and q/b into his lunch. At naptime, he went into the crib around 4:10 and at 5:25 was still jumping and putting his head into the pillow with his bottom up in the air over and over, looks like he is squeezing his head into the pillow. Grinding teeth often but not all the time. The different part about today’s nap is that he is holding his head on the pillow for a minute at a time with his bottom in the air. He never does it for longer than a few seconds before switching up positions. Update: he did not fall asleep, took him out of the crib and it turned out that he had a #2. It’s a really fluffy kind, and he also did it before nap. So I guess he couldn’t hold it.
Day 11: 2/28/20 Today G was still acting very sleepy. Mimi fed him downstairs for breakfast and he was laying down on the couch and could barely eat. Went to therapy and he was hiding his eyes, not walking, and very spacey. Asked him to put his backpack on the hook and he was just looking off toward the walls and the windows. When I picked him up he was better. Lunch was quercetin/bromelain, pau d’arco, leucovorin and 1/4 tsp beef gelatin. At home we ate dinner at the table on a chair, and he stayed the whole time and did not get up. He asked to get up three times by pointing into the kitchen but did not get mad when I told him no. Bath time was really amazing and funny. He was putting the bathcloth on his tongue over and over, I think he feels the tickles. He is exploring his mouth more than ever. I think it’s a good sign he might talk. Many sounds and babbles tonight. Still grinding teeth. It looks like tomorrow he might be almost out of his spaceyness, because tonight was pretty close. He had pau d’arco, quercetin and bromelain at lunch. Have not heard back from doctor about when to try Nystatin again or what to do.
Day 12: 2/29/20: G was much better today and not acting very sleepy at all. More active, and back to normal but better than normal. No Nystatin, quercetin/bromelain or pau d’arco today at lunch. Still grinding teeth. Took two hours to take a nap today.
Day 13: 3/1/20: G slept very well. He had a calm and active morning. Went to the park and was able to get him to come out of the stroller and touch flowers and numbers. Very happy mood. Gave him one dose on Nystatin at lunch, quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, but no pau d’arco. Went for a nap at 3 and fell asleep 4:30. Naps are still taking so long but think he needs them.
Day 14: 3/2/20: G had a good sleep and a good day at therapy. He did try to grab the therapist’s face a few times when he was frustrated. At lunch he had quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, and pau d’arco. He did not take a nap today, he was too alert and awake. He was very happy to come out of the bed and was running around. Just very happy in general.
Day 15: 3/3/20: Gavin woke up at 5:30 AM and was not in a great mood. Today was not very great. Lunch was leuco, pau d’arco, q/b, cs in water before nap. He did take nap. Night was better. Tired today, short update.
Day 16: 3/4/20: G had a good morning, had to wake him up for breakfast He went without me into the clinic today. When he got home, I decided enough is enough with his teeth brushing. I sat him down and got the toothbrush and said “We’re gonna brush your teeth now.” I brushed them all over and he tolerated it. I felt bad that his gums started bleeding by his front teeth. He really needs it. Lunch was calcium/d, leuco, q/b, cs in water. He went for a nap at 4:30. Grinding teeth.
Day 17: 3/5/20: G had another good sleep and slept past wakeup time again and had to be woken up. He wa super happy and went into the clinic again without me. He gave me a great kiss goodbye and walked right in. They said he had a good day, high energy. It’s 4:50 now and he is trying to nap. (Fell asleep 5:30.) I have felt pretty tired lately and a little lost on what to do next. One of my oldest friends told me today that her son was diagnosed today with high functioning autism, Asperger’s. I just couldn’t believe it. I didn’t want to say “sorry” because there’s nothing to be sorry about. It’s just a struggle sometimes with any level of autism. I told her I am here to talk and that now that she knows it will be easier to figure out what’s next. Lunch was leuco, q/b, cs in water. Grinding teeth less. Took a preschool workbook into the bed with him. That was interesting. Switched it out for Owl and he didn’t cry about it.
Day 18: 3/6/20: G woke up at 6, had great day school, ate all of his food for the first time in a year, had to leave early because a therapist left, went to bed at 3 and fell asleep at 4. No supps in lunch except leuco. Less grinding of teeth.
Day 19: 3/7/20: Forgot to write today, just had a busy day.
Day 20: 3/8/20 Today G slept in a bit because of daylight savings, and he had a really wonderful day. Lunch was pau d’arco, leuco, and q/b. Before lunch he was outside playing wonderfully and running around, went down the slide about six times, and didn’t ever go to the backdoor, or get upset. I think something is really healing inside his gut!
Day 21: 3/9/20 Today would have been the last day of Nystatin. My guess is that G would have been in rough shape. It was really doing something inside of him once the work was complete I think. He had a good morning and slept until 8:30. Wow! He was very alert on the way to therapy, but started his “sleepy lean” when we were walking. I look forward to seeing how they think his day went.