Things are worse than ever for Gavin. He attacks all of us now. He pulls out my hair. He scratches my skin off. He can’t control his impulses and his anger. I can’t take him anywere anymore, he attacks me in the car. I have to get a seatbelt lock again if I am going to drive with him.
The doctor I trusted for the past year tried many medicines with us, but I feel the biggest issue all along was probably his baseline nutrients (which still are not good, he has low D, low iron, low zinc, histamine issues) and the fact he was still on Risperidone for years when he shouldn’t have been.
We are in such a bad spot right now, I agreed with my husband tonight to just start increasing Risperidone over 2ml again. I have to wait until the appointment with our new psychiatrist at Texas Children’s on December 31st to figure out what to do next. Our family is falling apart. I am falling apart. Gavin has been falling apart for years.
Gavin has truly hit puberty now and I am positive that is what is going wrong now. I did not know it would be so bad. He has lost interest in things we used to do, he is too inwardly focused, his pacing and walking is the worst it’s ever been, and the aggression when he is frustrated or hears he cannot do something like go out the front door when it is night time – becomes an aggression and rage that he can’t stop.
All the medicines we tried with Gavin in addition to risperidone and clonidine, were all bandaids. He needed a new class of drug for his irritablity that was not an antipsychotic, then we should have visited all these medicines for anxiety.
His dopamine is mined out.
August 8, 2025
Kayla · 9:51 AM
Good morning,
I wanted to send a quick question. Yesterday I was able to give Gavin his medicine mixed with water in a syringe and it was pretty easy as we have been practicing with plain water. This morning he was not in a calm mood like yesterday and I couldn’t get him to take it, and decided not to force it or cause any distress.
Is it okay to try again later in the afternoon or evening, when he will let me do it easily? I really don’t want to disrupt his sleep or cause any other issues. I am thinking I might have to try giving it to him at different times of the day until it really becomes something more normal for him, then we could take it every morning hopefully?
Thank you so much,
Kayla and Gavin
Dr. K · 11:23 AM
Yes, absolutely Ok to do in a way that is the least disruptive for him.
August 14, 2025
Kayla · 10:46 AM
Good morning,
It has been 1 week of successfully giving Gavin the 1.5 ml. At his therapy clinic they have not noticed any changes really but I have noticed he is happier and his executive functioning seems to be faster. He is making decisions quickly, more eye contact.
Can we increase to 2 ml soon? Please let me know your thoughts if slower is better.
P.S. I was giving Gavin liquid leucovorin for a few months when he was 7. It was an easy, chalky orange liquid I remember. At the time I didn’t know if it was helping and just stopped. I have read a lot of positive things lately about leucovorin. Please let me know thoughts on that as well. Now that Gavin is happy to take things in the syringe, I am planning the next move with your help. I appreciate you so very much.
Kayla and Gavin
Dr. K · 10:59 AM
We don’t recommend increasing dose till 6 weeks. Lets stay on 1.5 ml for now, and increase it to 2 ml at 6 weeks mark.
Leucovorin is a great next step.
My thought would be to increase the fluoxetine at 6 weeks mark, and then at the 8 week mark, we will reintroduce leucovorin.
August 25, 2025
Kayla · 1:02 PM
I wanted to ask if I can get a refill soon for the fluoxetine, there’s not enough for getting to our 6 week mark. Am I able to request a refill through Walgreens or do you all need to request it? Please let me know how to move forward with that.
Everything is still going well and he does have an improved “mental stability” I’d say – more understanding and agreeable day to day but nothing huge noticed so far. Still has improved executive functioning. He also does less preferred/repeated things in iPad games or other repeated behaviors, but he does rub his lips all the time still (for an example of something “ocd like” that has not stopped yet).
Gavin takes the medicine in a syringe with water every morning. We somehow made it into a fun thing and no issues so far.
Dr. K · 1:12 PM
So glad he is doing well. Sending prescription refill in.
September 2, 2025
Kayla · 10:00 AM
Good morning! We need a Risperidone refill, can it be refilled today? Sometimes we are low before the day insurance approves the refill and rush to get another bottle somehow.
Would it be possible to do a 90 day supply (or 60) instead of 30, so it’s easier for us so we don’t fear running out? Thank you, please let me know.
Dr. K · 10:17 AM
I sent the refill for 90 days.
Kayla · 11:33 AM
Thank you Dr. K. You are making life much easier! Thank you, thank you 🙂
September 18, 2025
Kayla · 5:30 AM
Good morning,
I started giving Gavin 2 ml a week and a half ago and he has been doing well. I need to ask for a refill now, we are running low soon.
P.S. When I got risperidone last time they only gave me a 30 day supply for some reason. If we could try again for a 90 day please soon.
Thank you!
Kayla and Gavin
Dr. K · 8:50 AM
The risperidone is written for a 90 day supply. I will add an extra note for pharmacy for a 90 day supply. If you still have issues, let me know.
Sending fluoxetine 2 ml in am prescription for 90 days as well.
Glad he is doing well.
September 25, 2025
Kayla · 10:25 AM
It’s been about three weeks that Gavin‘s had 2 mL of fluoxetine and everything was OK till about a week ago, he started becoming more OCD and I thought maybe it was a phase, but he also started hitting his therapists at his ABA clinic again and trying to scratch their faces. Usually when this happens, it’s a phase, maybe a week, and he doesn’t do it at home, but now he started doing it at home as well. Over the weekend he started trying to scratch my husband which he’s never actually done before in his life and my husband has to hide around the house because as soon as Gavin sees him, he wants to go grab his face so this is all very strange behavior that has popped up.
Kayla · 10:27 AM
He’s much more high strung, hyper at times, and he’s been bouncing in his chair a lot, bouncing in the car a lot while we’re driving, he’s throwing his body around more. For OCD it’s actually worse than it’s been for the past week — this morning when I brushed his hair I put the hairbrush down and he flipped it back over to the other side. Yesterday, we were doing some stuff outside and there were some bottles that were laying on the table and he set them all upright. He’s just noticing a lot more things and trying to correct them.
Kayla · 10:29 AM
Before this all started happening, I was going to say that fluoxetine was still helping — I thought he seemed to be having a lot of quiet moments and thinking in a different way at times. I feel like he’s been sleeping more soundly and not moving as much at night. I would say the sleeping part is still true, but his behavior during the day has gotten worse for sure. Even this morning when he and I were in the bathroom getting ready, I was very close to him and he suddenly scratched my face and then I had to start talking to him very gently and distract him because he wanted to grab my face very hard and grab my cheeks.
Any thoughts .. at therapy they haven’t noticed any real changes in how he behaves or focuses, they say he seems the same.
Thank you!
Kayla and Gavi
Dr. K · 1:48 PM
I think it may be the fluoxetine> lets go back to 1.5 or even 1 ml, if that is where his best response was.
Also, by any chance, had you already started leucovorin? If not, then, my index of suspicion is fluoxetine.
Kayla · 5:17 PM
Do you think it’s possible he may need more risperidone as he is bigger now? He’s taking 1ml nightly in water.
September 26, 2025
Dr. K · 8:56 AM
Its a great thought. We may eventually have to do that. But, lets first decrease the dose and see how he does for the next 1-2 weeks.
September 29, 2025
Kayla · 7:46 AM
Good morning, we had a very bad week and were at a loss of what to do. I started giving him 1.5 risperidone and 1 ml flouxetine. He has been doing better but is still very restless and loud all of the time, waking everyone up in the morning, stomping his feet loudly. He always does this but it has been more often.
We do need more risperidone now because of the increased amount. They still have only been dispensing the one bottle so we do not have any buffer amount.
Thank you,
Kayla
Dr. K · 8:31 AM
No worries. I agree with increasing. If you need, you can increase the risperidone to 2. I will send it for an increased dose
Dr. K · 8:38 AM
No worries. I agree with increasing. If you need, you can increase the risperidone to 2. I will send it for an increased dose
October 2, 2025
Kayla · 8:35 AM
Good morning, I got some graphs from ABA that show he had worsening behaviors after starting Prozac. I think it mostly happened after the increase to 2 ml. The good changes in him seemed very subtle and then slowly he was more anxious and upset, increased his aggression, hitting and scratching others, and increased lip rubbing.
Since he has been on 1.5 ml risperidone liquid nightly for about 7 nights now, he is sleeping better, and has stopped hitting.
The one constant that needs to still be changed in him remains the same, the lack of focus, restlessness and making many many vocal stims throughout the day all the way til bedtime which removes his focus for sure. Plus the handflapping never changed with Prozac or without, so that must mean something…
October 17, 2026
Me — 5:10 PM–5:28 PM
Hi Dr. K,
I know we have an in person meeting on November 11, but things are just getting worse and worse. Life at home on the weekend is unbearable.
Gavin has been on 1ml risperidone nightly and clonidine nightly for over a year now, maybe 2 years? As you know I have tried to reduce risperidone because I want to get rid of it, but haven’t been successful yet.
In September I weaned Gavin off of lamactil. It seemed to help him make new sounds for two weeks, and as we increased the dose twice, the new sounds went away and his OCD behavior increased more and more.
So now he has been off lamactil completely since September 27.
During the week at ABA he been mostly the same but his OCD behavior is worse than ever. Because he is getting taller and stronger, he has started to block the therapists when they say he cannot go to move a chair, close a door, turn out a light, and he gets in front of them and forcibly does what he wants to do. He used to not do this. It is mostly happening when he wants to carry out an OCD ritual, they are stronger than ever. He is very fixated on them.
He has also developed a new type of vocal stim, which almost sounds like a tic. Everyone is saying he sounds like a bird. He cannot stop doing it.
During the weekends at home, our family is completely separated. I have always taken Gavin out Sat/Sun on drives to parks, etc. but lately he is getting upset and having breakdowns if I go a different way, he is just less agreeable than he used to be. He wants to kick my arm while I drive.
Today I tried to stay at home all day, and he has been pacing in circles, making the new vocal sound, constantly wants to close doors, stim with flash cards between his fingers. My husband has been locked away in his office with the dog, my oldest son is in his room on the computer, my mother in law who tries to help is unable to do anything because he is too strong and often almost knocks her over, so she is often sitting far away from him while he paces around. No one is able to take Gavin anywhere but me, I am overwhelmed.
I need to figure out something, I have no idea what to do anymore. His anxiety, restlessness and OCD are at their worst.
Is there any way for you to see Gavin in person this month? Would it help to see him in person, I don’t know what to do.
October 19, 2026
Me — 4:01 AM
Gavin’s weekend continued to be difficult for him.
Tonight he woke up at 3 AM. I took him to the bathroom, gave him half clonidine in water to help him fall asleep. He has been rubbing his lips in circles for an hour now. I cannot fall asleep even as he does this, because he makes an “ah” sound over and over while rubbing his lips. I can’t turn off the baby monitor to go to sleep because if he wakes up more, maybe he needs more clonidine, then I won’t hear him.Why is he rubbing his lips for hours, why can he not stop? He has been rubbing the skin off his lips for over 2 years. This should be something connected to something he feels that can be medicated?
I am so burned out. I have had a child for 12 years who has the sleep behavior of a baby or a toddler. I really need help.
Dr. K — 11:04 AM
Hi there,
We dont have any immediate openings, but we will add you guys to a cancellation list. We are booking into 2027 for follow ups.
Interim, I would suggest consider trialing a new anti anxiety medication/ and or increasing clonidine.
I also know that you were going to see a specialist at TCH?
Me — 11:15 AM
Hi, I wanted to get a second opinion, a third, just more input for Gavin. They couldn’t see us until December 31. It feels like a long time.
My anxiety itself is worse than ever. I was even nervous to open your message because I am afraid there is no easy answer anymore for him.
I would like to try another anti anxiety, anything like that please. He is just not himself. His brain is so full of noise it is heartbreaking.
I am not even sure if we should increase risperidone instead of keeping it at this low dose this whole time, since he has always been using it. But at the same time I don’t want to increase it if I feel like I want him off of it eventually. I do not know the answer to that either.
Dr. K — 1:59 PM
I am sorry this is so stressful.
I sent a prescription for sertraline starting dose. Its 0.5 ml (around 10 mg). It acts pretty quick, so keep me posted.
November 2, 2026
Me — 10:39 AM
Hi Dr. K, Gavin has still been having very up and down moods. I tried to give him the new medicine a few times in water but he could taste it. I have been working on getting him used to an oral syringe again with plain water and then adding the medicine tomorrow. I have wasted some of the medicine and there’s not much in the bottle so I need to request another bottle please as I continue the new routine with him.
Dr. K — 11:24 AM
No worries. I sent a new prescription with some extra (increased dose written).
November 3, 2026
Me — 9:38 AM–9:55 AM
Hi Dr. K, I know I just asked for more liquid but the situation with Gavin is getting worse. I tried to give it to him last night and this morning, but he is not himself anymore. He is unhappy about so many things, he wakes up unhappy. Last night I took him for a walk after dinner and he did want to leave the playground swings. Normally I say we have five minutes and we need to go home (5 or 6 times I say this) and he comes with me but last night he was screaming and he chased me, scratched me and pulled my hair all the way home. Once we got into the front door, he was calm acting like nothing happened.
This morning the dog accidentally got out of our room. He is still obsessed with the dog. I let him be with the dog, he was putting his mouth on the dogs mouth.
He kept touching his face and eyes because the dog was making him itchy. He got tiny bumps/hives all around his eyes, just like I would, and kept rubbing his eyes. My husband had to take the dog on a walk to solve the situation. If Gavin knows the dog is in a room, he will beat on the door and scream because he wants us to let it out. We can’t just keep taking the dog on a walk at random times like 5:30 in the morning, it’s not always possible. But after Gavin sees the dog is not in our bedroom and not in my husband’s office room, he gets calm. He forgets about how upset he felt. That is how I got him to get calm and go to his ABA this morning. I gave him some clonidine too hoping it would help.
When we got closer to the ABA clinic he started rubbing his lips even more. He became fixated on rubbing a certain part of his top lip. He could not stop himself. The therapist was asking him to come out of the car as he rubbed his lip obsessively. He started to scoot across the backseat to get out, but then scooted back. She kept asking him to come, to go play, they’ll go to a certain room, etc. Finally he reached out to swipe my face and scratch at my eye, and he got out of the car. Stumbling across on his tiptoes, dropping the toy train in his hands, rubbing his lip, bending over to pick up the train, unhappy.
I have cried everyday once or twice for weeks now.
I increased his risperidone to 1.25, two weeks ago. At first it seemed he was happier.
In the past 5 days, it’s as if there was no increase at all. I am not sure if that small increase of .25 did anything at all.
I don’t know if I should ignore the fact that I think risperidone is unnecessary for him, or does he really need it since he has been used to it all his life and maybe he needs more?
I don’t know if I need some small Zoloft tablets to crush into his yogurt, on the mornings I will actually be able to get him to eat breakfast if he is not being obsessed about the dog or unhappy about something else.
I know we see you on the 11th in person, but I am not sure what the point is of the meeting, it will mess up his routine for the day and I don’t know if he will even come in the building. I am really at a loss of what to do, completely.
My mother in law used to be able to help with Gavin, but now he is too strong. My husband and oldest son have no relationship with Gavin. I am the only one who can deal with Gavin and help take him anywhere if he is upset, and be able to get back into the car or to wherever we need to go if he is upset and refusing to walk. But even he is getting too strong for me.
6 months ago I wanted him to be less hyper, so he could focus better at ABA, plus I was worried risperidone was causing his restless movements, and wondered if he truly needed to change medications and get away from that. I wanted him to stay happy though. Lately it has been hard for him to ever be happy and I wish I was instead where he was 6 months ago. I do not know how to get back.
My oldest son is home from school today. I am unable to think or focus on what to do with him today, I wanted to do something fun with him. Instead I am worried about Gavin being at his ABA clinic unhappy and probably being aggressive, wondering if he should come home. But at home it is worse because he will be unhappy here and I have to hide the dog away.
I have been trying to figure out how to have a job soon and the closer I got to figuring that out, the worse Gavin has been getting. I will not be able to do anything with him being like this. I will not be able to have a life.
I am supposed to go visit my dad from Nov 30-Dec 4. I am already going by myself, without my husband or oldest son, and my dad has never even met Gavin because it is too hard to travel with him. This is the first time I have felt like I have to cancel my trip because no one here is going to be able to talk Gavin into going to his ABA clinic if I am not here. My mother in law and husband cannot handle him all day for a week in case they cannot get him to agree to go to the car and go there for the days I am gone.
November 4, 2026
Dr. K — 11:13 AM
Hi there,
This must be rough.
I have a few thoughts.
1. Since adding/changing meds has not done much, we can slowly start weaning meds (starting from zoloft> clonidine > risperidone) and see how that changes his regulation.
2. Do you think the ABA frequency/duration is too much/overwhelming for him. We think about it as lets change the environment. Do you think his BCBA thinks change in ABA setting (home vs clinic) or hours would be an option.
3. Reg Dog, is this a new/changed behavior around the dog? Is there a possibility of the dog being with a family member for few days and see if his regulation changes.
4. Lastly, are you seeking some help for yourself. This is a lot to process. We have counsellors here at Cortica that provide counselling to family members. Let me know if you would be interested.
5. Reg Dec appointment, I will leave the decision to you.
Also, I will be out of office starting mid Dec with anticipated return in April.
Best,
Dr. K
November 7, 2026
Me — 12:53 PM–12:58 PM
I would like to fix Gavin so I do not need counselling. My face, neck, arms, ears, hands have scratches and scabs daily. The hair he has pulled out of my head, I am finding still in the car and around the house. He is now not just trying to smell the dog, he is smelling people when we go to playgrounds or to other public places. I had to drag him out of the trampoline park this morning because he was following a staff member, trying to get close enough to smell and touch him, without me noticing. I finally let him get close to him, he grabbed his hand and looked at me, waiting for a reaction. I said, that is nice, you shook his hand. He kept trying to go back him and do it again.
Then he started touching an older lady who was there with her grandson, who was also autistic. She said to me, “Maybe he just wants a hug” I said “Sorry, its not about that. I am having a lot of behavior issues. I am staying close by because I am afraid he will get aggressive about touching or smelling someone.” After that, my son started walking fast toward her grandson. She followed close behind them, as did I, and she was afraid my son was going to hurt her grandson. I could not get Gavin to leave and had to drag him physically across a huge warehouse space the trampoline park is in, we didn’t even have our shoes on. It’s not the first time I had to do this. Episodes like this have been happening, in smaller ways, and building up, for years now.
Even though I wanted to stop risperidone for a full year now, and we tried, I was reading that he probably needs more at this time. He has been taking it since he was 6, never has taken more than 2 ml nightly, and now he is 12 and 94 pounds.
Shouldn’t he just have more risperidone now, since that is what he is used to? Forget what I said about changing it. I need help now. My son is covered in bruises and scratches from fighting with me, and so am I. My whole family remains separated from myself and Gavin.
I started giving him 2 ml, three nights ago.
Can anyone there, or a colleague of yours there, tell me what to do? Completely honestly?
