We hope others reading this will see they are not in this alone and perhaps gain knowledge by our trial and errors and join in our journey.
October 26, 2020
Wow, it has been a rough couple of months, where to begin… Philip was put on Depakote after seizure but this med made him extreme extreme anxious and screaming meltdowns that almost seemed psychotic. We switched to Briviact but he broke out in bright red rash all over his face. He then was given Vimpat which again made him so anxious and screaming. We lowered dose and anxiety was better but then more psychotic screams started. Dr’s always just think autism but I knew it wasn’t right so I took him off and within 3 days screaming stopped and he was smiling again. Now he just has his normal chinning self, yelling episodes he has had for the last 4-5 years since bowel impaction in hospital. He is a wonderful guy but trying to do a doctor’s job is exhausting.
August 30, 2020
Long for the day this Covid-19 is over and everything is open and Philip’s therapies all start back up. It has been very hard for him to have any kind of normal schedule. He doesn’t have a lot of interests and gets so bored without being able to go places or have therapist in. Increase in behaviors and trying really hard to not give extra Diazepam in case that is what is triggering seizures. I am sure he feeds off of my stress too, between the Covid and the riots and people just plain being crazy these are stressful times. I long for my old normal.
August 15, 2020
Well despite eeg being normal Philip has had another seizure on Aug. 2. He got a little freaked out when paramedics came in with big bug like masks on do to Covid. Once he calmed down, he did great in ambulance and at hospital. Speaking with Dr’s they are not sure why other than he has had extra Diazapam prior to it happening and he may just be super sensitive to it despite being on low daily dose. Unfortunately, it is the only thing we found works for a major meltdown. He never had this kind of severe meltdowns prior to 5 years ago when his bowels were impacted and he had h-pylori. Despite many tests, we have not figure out why. We take things a day at a time sometimes and hour at a time because we never know how he is going to be. We started on Depakote DR so will see how that goes. He did great at the Trump boat parade today. Still working on getting his medical marijuana dosed the best for him. It is a little more complicated than I thought it would be. There are so many different strains and even with same dose it effects him different each time.
May 27, 2020
Finally got Philip’s eeg done. He did awesome having them put on and the whole corona check in of taking temp, going through security and wearing a mask. They aloud him to wear a bandanna mask so we told him he was a cowboy. After having eeg attached they wrapped his head and sent us home till the next day when we would have them taken off. We went a few places just to keep him busy and he did fine. When we arrived home he was agitated with it. He was pacing back and forth and I kept a close eye on him. He paced into the kitchen and my eyes were only off him for 30 seconds: he had ripped the entire 26 leads off his head. So we ended up with 2 1/2 hours worth of data. Hoping it’s enough. Since the day of test, his ocd is way up again and he is not sleeping. Could be discomfort from where he tore off the wires that they secured tightly. Now we wait another two weeks to get results.
March 24, 2020
Still waiting on eeg and now everything shut down with the Corona virus. Philip hasn’t had anymore seizures but his behavior has been just off the wall crazy. With the Corona virus and restaurants being closed, he has no baseball, no fishing tournament and everyone is stressed including his therapies being cancelled thing are getting tough. Thank God Publix is open as Philip has OCD for going there. I can’t seem to get Philip’s behavior level right lately despite meds and thc. He is not saying anything hurts but starts yelling and running through house and sweating very agitated. OCD has gotten really bad, he is changing his clothes 10-20 times a day and insisting on wearing everyones clothes but his, hand posturing, wanting sameness…. OCD get’s very stressful on family too. He has PANDAS so after being sick they usually get worse anyway but this has been crazy. Meds doing nothing for it, trying to increase his exercise but hard to do when he doesn’t want to cooperate. We have managed to get him on the two seater bike. Pray this Corona lockdown is over soon.
March 5, 2020
Philip was really sick with a cough this past 6 weeks. Cough was keeping him up, we all had it and it was almost as bad as the flu. During this time Philip had a seizure and ended up in the er. This is only the second time he had a seizure, first was 17 month ago and was from Diazepam withdrawal. We are not sure why this one but he was very sick. His Dad actually went to er same week because he coughed so hard he passed out. We are waiting to have a 24 hour eeg done but trying to schedule it has been a nightmare. Praying he leaves it on as they will put electrodes on and we will come home with it and go back next day to have removed. In the past before Philip did IVIG treatments he used to get sick a lot. I had forgotten how bad his OCD gets after being sick but I am reminded now as they are very severe. Hoping he can hold it together Saturday as he will be playing baseball in the Challenger league. Then next month he goes fishing with Make a Difference Fishing.
December 31, 2019
It’s been a little while since I posted, holidays can be tuff. Holidays seem to bring out immense OCD’s. He still continues to change his clothes many times a day. We hid some of his clothes to limit but then he started walking around naked which was worse. He is very agitated lately but still unable to tell us why. While cbd definitely helps we have had to give him more Diazepam this month. We were in Publix a few weeks ago and Philip got very agitated and had built up energy where he took off running. This hasn’t happened since starting the CBD/THC. His Dad had to come to store and help get him to car. Trying to figure out what is going on is always the hardest part. I just ordered some Magnesium I am going to add to his vitamins and see if it helps. Here’s to 2020 and some answers to keep him level.
October 8, 2019
So apparently there is some kind of receptor that gets full on the thc/cbd so you have to change the strain up when you start seeing some of the behavior come back. So now using Grand Daddy Purple alternated with 9LB hammer. There are still a few nights a month he doesn’t sleep well but for the most part he sleeps. It has slowed down the pacing and he is working better for therapist. The only thing it is not working for yet is his OCD. He has an ocd now for changing his clothes like 20 times a day. I never know when I am going to turn around to him completely naked. This is especially troublesome when his therapists are here. While he still has agitation/meltdowns where he seems in pain, he is doing a good job of keeping his hands to himself.
August 17, 2019
Happy to report we have found a strain of cbd that works for him. We are using 9LB hammer at night which helps him sleep and Remedy in the daytime. Since starting he is not only sleeping at night he also has had more speech. Mom was next to him and he looked at her and said “Mommy is pretty like Cinderella” He has never said anything social like this. We asked him what he wanted to be for Halloween (something he never answers) he said a “hotdog” lol. We found him a hotdog costume. He also was watching you tube and saw a funny video with soda exploding and he actually called his dad over “Daddy” and pointed and said “soda”. Really happy to see speech coming along and he is much calmer. Hope it lasts.
August 6, 2019
Well I thought I could post sooner about progress but it has been an up and down road. I didn’t realize there are so many kinds of cbd/thc and you have to find the right one and the right dose to help each individual person. Like everything else first week seemed good then back to up and downs and trying to get dose. Decided to try a different strain this time. He had one last night called 9LB hammer. I gave him just a tiny bit (less than 5mg) which I put inside a capsule. When taking with a capsule it takes about 2 hours to kick in so I have to give early enough. At the two hour mark he actually fell asleep and slept 6 hours. I am going to try a little more tonight to get 7-8 hours. I also gave him 25mg of cbd with it which I got from Lazarus. We have noticed some more speech with him but still working on getting right strain and dose to get good sleep and decrease his ocd. I can see why some would give up because it takes a lot of trial and error and is not cheap. I feel like in the long run it will pay off and he will be able to get off some of the harder prescription meds. I am also looking into the Nemechek protocol that I have heard good things about. It is nothing to do with cbd but I see lots of people saying it helps. I just bought the book so I will let you know. Right now I am sticking with the cbd/thc till I get it right.
July 1, 2019
All this cbd stuff can be so confusing. It is really trial and error to find the right dosage as everyone responds differently. It has taken about 2 months but I think we are at a good level and can start weaning from prescription meds slowly. He is getting cbd twice a day. He gets from dispensary 1:1 ratio which is 5mg/5mg and then I give him 35mg of Lazarus capsule cbd in morning as the thc will keep him up at night. I was told thc usually makes you sleepy for night but as usual my son is opposite. Around 5pm I give him 9/1 from dispensary with 35mg of Lazarus. He falls asleep about 11 at night but is sleeping through the whole night till 7am. It has been wonderful. Philip is much less agitated now that he is on cbd. I am seeing some nice things like sitting still more, more speech, but best of all is the sleep. Let’s hope it continues!!
May 18, 2019
We raised the dose of cbd to 30mg. I was afraid to do it because at 10mg he was bouncing off the walls. I was told low doses are excitatory so I learily raised it. He has had a couple of awesome days. He is sleeping at night and worked very well for speech therapist even telling her time to work. Still playing with dose. Right now he gets 30mg twice a day and 5mg cbd/5mg thc at bedtime. Let’s pray for more good days ahead!
May 7, 2019
Started medical cbd a few days ago at 10mg but have not seen anything different. We are doubling the dose tonight in hopes he gets a good night sleep.
April 27, 2019
Has been a while since I posted, life has gotten in the way. Philip still suffering on and off with kidney stones but thank God he has not had any seizures since steady on medicine. He seems to behaviorally and sleep wise do well 3 out of 7 days of the week. We still haven’t figured out what happens the other 4. He did just get approved for the medical cbd so we will be trying that and coming off some of his meds with side effects. I am going to be adding a video page that will show before and after. I hope we get some great results to post. Took Philip back to Challenger baseball today. He hit the ball and ran the bases then all he wanted was concession stand. It is such a great social for him and we can go as much or little as he can handle. Trying to get him involved to make some friends.
September 14, 2018
Philip doing better since passing kidney stone. I knew something was up even though others kept saying just the autism he probably was just thinking about something he didn’t like. Ugh tired of hearing that. Good news on EEG too no Seizures so now he is on steady dose of Diazepam instead of as needed because seizure was due to a withdrawal.
September 11, 2018
Philip did awesome for EEG, impressed everyone. Had a good day overall until… 1:00 in morning Sept 12, he woke me and told me his stomach hurt which was amazing. Unfortunately, he was in a lot of pain and started throwing up so we took him to emergency room. Turns out he passed a kidney stone. Guess this would explain why the behavior was getting worse and worse.
September 10, 2018
Tomorrow is Philip’s EEG, so nervous how he will respond to having all those wires on his head. He is very unpredictable, it may go easy or he may refuse to have anything touch his head. By now you would think I could say whatever happens happens but I won’t. I will be up all night thinking of ways to make it work lol.
September 7, 2018
The past couple of weeks have been a whirlwind. Philip was having more and more issues with behavior so he was receiving Diazepam as needed. Unfortunately he needed it quite a bit then had three days where he didn’t need any. Apparently this caused his brain to go haywire and he had his first ever seizure. I cannot even begin to tell you how stressful this was. I had trouble even dialing 911 on phone. I used to think how hard is it to dial 911 but under panic much harder then you would think. It is not like the old days when you just pick up phone and dial 911 now you have to hit that extra button to send. We also have a ihome google on light but I was so upset it couldn’t understand me to turn on the light. I have now programmed a button on my phone that I just have to hit for 911. We are still going to do EEG to rule out other causes of seizure but it is believe it was from meds. Let this be a warning to others giving Benzo type drugs. He did not get more than was told he could have which was not a high dose but because he had it so many days in row then stopped, by day 3 he seized. I was very proud of Philip in hospital, he was able to hold still with my counting and praising him for holding still to get a CT scan done. All test showed normal just need to do EEG next week and hear the words looks good before I can breath again. Philip was just walking/pacing as he does a lot in house and I heard a loud bang. He had just dropped right to the ground. Thank God he didn’t hit his head. Dr.’s also want to do an ultrasound of his abdomen as he still continues to have stomach issues. Looking forward to tests being done.
August 12, 2018 We just started music therapy two weeks ago and Philip is loving it. He comes to the house for 30 minutes and sings songs with Philip, working of his speech. So nice to find a way to teach him that doesn’t feel like work to him. He has been up and down lately but this morning is actually sitting quietly doing a puzzle. If I could just figure out what is right at this moment with his body that makes him calm and happy.
May 21, 2018 Nothing like being stuck in the house with it raining when your son has sooo much energy. We have a swing in the backyard that is very calming to him. Unfortunately with it raining he can’t use it. He is wearing out my carpet pacing back and forth.
June 6, 2018 Philip’s speech is really starting to explode lately. He was able to tell me he had a belly ache just before he threw up. He is asking where and when questions more spontaneous. He still suffers stomach problems despite not being able to figure out exactly what. He will be 24 next month and it amazes me the amount of speech he is still gaining. I remember being told when he was 3 that he would never talk or get any better. Philip is still doing swim lessons and is making real progress.
July 21, 2018 Philip has been up and down with meltdowns lately. He will be doing fine then all of a sudden he is fast pacing, sweating, yelling noises. It is very hard as a parent to see your child like this and want to help but can’t figure it out. It seems like he is either in pain or perhaps an anxiety attack of some kind. Time to do more research.
May 15, 2018
Time has just flown by lately. I am happy to say Philip continues to make progress on his speech. I have looked at his ABLLS-R again reassessing goals which I think is important. Our main focus right now is on manding for information and being able to relay a message. I urge all parents not to give up on speech or functional academics no matter what age. Philip will be 24 in July and his language continues to grow. He has always been obsessed with keeping his hair cut very short but now he has decided he wants long hair. I prefer it short but we are happy he is making some of his own choices. I see a lot of changes with him at this age. Some of his ocd’s he has had forever have stopped like his obsession with crossing off the calendar. Feeling encouraged at the progress he is making.
March 26, 2018
Haven’t posted in a while, Philip’s Grandmother (My Mom) passed away Christmas day and it has been hard to deal with. I think Philip realizes I am upset and he has tried to be on his best behavior. We stopped the Restoril as it wasn’t working as well plus seemed to agitate him after being on it a while. We only use it when he has had 2 nights with poor sleep. The Diazapam low dose is working out really well for him and he can have it as needed. He is finally getting back on track with learning. When doing addition on paper he isn’t very focused and it’s random how well he does. He wanted some candy so I told him I am going to give you 9 pieces, then I handed him 1 and said here is 1 how many more do I need to give you. I did this with different amounts up to 10 and he did awesome. Guess I just needed the right motivation. We bought Philip a hammock seat for the backyard and he loves it. It seems to be very calming and stops some of the obsessive pacing.
October 30, 2017
Like every medicine I try Philip on, the Restoril is not working as well as in the beginning. September was interesting to say the least. We had a hurricane and had to board up our windows. The grocery stores were closed for a couple of days. Philip has an ocd for going to Publix everyday. He understands a lot but would not accept the answer that Publix was not open. We were already stressed over the hurricane and Philip kept saying “Publix, Publix, Publix…..” We have decided we cannot take him to Publix everyday as it is too hard for him to accept when we can’t go.Lesson learned.
August 10, 2017
Philip doing really well lately. We started him on Restoril for sleep and it seems to be helping his OCD a lot. It is so nice to have him (and us) sleep 8 hours a night. His language is continuing to grow. He is working on describing things and increasing his sentence length for example: The boy with the blue shirt is eating a hamburger. We use a picture that has two boys each eating something different. Philip seems to be more aware of things lately. We had our car break down and have to be towed to the house. When the tow truck was out front unloading the car Philip watched out the window the whole time. In the past he would never show any interest in seeing it.
July 24, 2017
Ok, been gone from here for a while. My mom (Philip’s Grandma) is very ill so it has been a crazy year. We have tried a few meds with Philip this year trying to get his ocd and sleep under control. We tried Seroquel and he got very aggressive. He is not normally aggressive. We stopped that and started using Diazapam low dose on rough days. We started Restoril about 2 weeks ago for sleep and it seems to be working pretty well. He has actually been sleeping 8 hours a night which not only helps him but the whole family. Philip turned 23 this month and I still am having trouble finding the right adult programs for him. It was so much easier to find support for him before age 21. We are looking into Special Olympics for bowling. Unfortunately, this chapter is not very organized so it is almost impossible to get information on how it works. We really want to find something social for him to do.
Philip has his up days and down. A year and a half ago he had a fecal impaction and had to be taken to emergency room. He was foaming at the mouth, not using any speech or responding to us. He would just hold his hand to his ear, one eye tightly closed while giving off an “uh, uh, uh” noise. He was just laying down not wanting to do anything. (this is a kid who never sits still) First time we went they sent us home with enema’s and Miralax. They said “could it be behavior?” ugh, I always hate when they blame everything on behavior.
Next day same problem took him back to emergency room again. This time they admitted him to hospital. They gave him morphine for the night, which did nothing. Again they said could this be behavior. They sedated him next day and did manual clean out of impaction. They said there was no seen blockage but x-ray showed possibly up higher. They gave him Miralax for 3 days and only clear liquids. By the end of the 4th day at hospital, they could not believe this was the same kid. At this point they agreed it wasn’t behavior.
When will they learn Parents know there children. So many times I hear “oh a lot of autistics do that” and they never look for cause. Anyway, since this we have not been able to figure out why this happened. He is now going bm’s regularly but still appears to get pain where he will scream out and jump up and down or even wake from sleep with pain. Have had plenty of tests but all come back fine. He has some speech and although able to tell me when things like eye or leg hurt, he is yet to be able to tell me if his stomach hurts. I posted some blogs from a few years ago. I had a site up back then but lost all my hard work and it took me a while to get around to doing this again. Still lots more to put back in site so be patient, more to come.
July 15, 2016
Wow, where is this year going. Philip will turn 22 on Monday. It has been a very hard transition to 21. I am surprised there is so little support once they become adults. Visiting a few adult day training places and was very disappointed. Seems like these places are just big day cares where they color all day. It was very sad, I saw so much potential in these young adults who have been written off as not able to do anything. It was heartbreaking. There is a true need for transition services into adulthood. When I win the lottery lol this will be a top priority.
Philip doing ok, has a stong stim still where he seems like he is acting out a script to include squatting down and touching the ground and lots of hand postures. This causes a few problems when trying to shop with him. Two steps forward one back but at least we are slowly moving in the right direction.
May 23, 2016
It’s been a while, my mom was in the hospital so my little bit of spare time was taken up with visiting. Philip doing ok, still not 100% with stomach but settling down enough to start learning again. Started swim lessons at the YMCA there is a group of ABA therapist doing it. Philip is doing awesome. In just a few short times he went from barely liking going in the water to dunking under, laughing and even jumping a few times in the deep end of pool. Has learned to hold on to side of pool and kick his feet. Swim lessons is something that I always wanted to do with Philip but it was hard to do with behaviors when he was younger. Even though he is 21, I am amazed how much of a sponge his mind is for learning. I think it is so important to expose him to as much out in the world as possible.
Still working on OCD issues like too much food, shampoo, toilet paper. Last month he clogged toilet with toilet paper causing our toilet to overflow while we were out of house for two hours. Came home to 2 inches of water in entire house. Lost a few things but could have been a lot worse. Now just need to replace carpet 🙁 $$$
February 15, 2016
Having yelling spell as if in pain. Most times Pepto Bismol seems to help. Waiting on H Pyrori retest result to come back. Latest thing he does and I am hoping is just a stim is to roll his eyes back in his head. Sometimes he leaves them that way up to 20 seconds. No other symptoms along with it so hoping its a stim but just enough to make us worry.
February 8, 2016
Back on track (for now) Now Philip is in one of his repeat stages where he wants us to repeat whatever he says. This is a severe OCD for him. He also has his appetite back but wants to eat everything in the house, to include what is on others plates. Trying to increase his exercise time in hopes it cuts down on the anxiety driven OCD’s. Found a great resource picture visual idea to help him with cooking things in the microwave. I’ve included a picture on my download page.
January 24, 2016
Things had been going much better since IBgard but this weekend he crashed again. Racking my brain trying to figure out what changed. The weather has been colder, only around 50* today. Have been trying to get him to eat new foods but it is back firing a little and now he it is hard to get him to eat fruit which he has always loved.
January 8, 2016
Haven’t quite kept up with blog like I wanted to but it has been a rough couple of months. We finally got a diagnosis which we hope is the cause of Philip’s stomach problems. He tested positive for H. Pylori. He had to take high dose antibiotic for two weeks. This was very rough on him and caused him to have aggression towards others which is very unlike him. Been off for a few weeks now and seems to be doing better. We still need to give him some Pepto Bismol and started a new supplement for IBS symptoms called IBgard. It is over the counter, ingredient is peppermint oil.Praying we are looking at a much better year in 2016.
October 29, 2015
Philip not eating a lot again, yelling out and chinning. Took him back to doctor yet again. This time they are saying severe anxiety. Not sure she was diagnosing him or me LOL. Trying a very low dose of Zoloft to see if it helps. GI doctor on Tuesday but was told they ran all the tests and not sure what can be done but they would see him.
October 25, 2015
Philip doing better last few days after having 5 days on no appetite and seeming in pain. Glad he is better but know he will get sick again as it seems to be ongoing. Big weekend, went to Octoberfest and John’s Pass Seafood Festival.
October 18, 2015
Been a rough week so haven’t written. Philip has been pacing back and forth can’t sit still, making noises and has hardly ate anything in the last 4 days. Doctors still can’t figure out what is wrong and he isn’t able to communicate when pain is high. Takes us about an hour to convince him to get dressed or shower. When he is well, he does that without us even asking. Sleep has been terrible too only 4-5 hours a night. He doesn’t seem tired but I do.
Still transitioning all his therapies/doctors with him being 21. Seems like it is a never ending process.
October 7, 2015
Philip woke at 2:00 this morning yelling “oink oink” at the top of his lungs. This is what he yells out when he is in pain. It sounds funny but it sad because I know he is in pain. He then started chinning himself. I’m sure doctors will say it’s behavior but I feel he is in pain. Rough day on and off today. I found him pacing the house at 4:30am scripting movies in his head. He seemed like he just couldn’t still still, very agitated. After 20 minutes of pacing he started chinning self and yelling “oink oink” again. I long for the day I can figure out what is causing him pain.
October 5, 2015
Philip woke fussy but seems to have pulled out of it. His stomach seems to bother him a lot in early morning. So as I told you yesterday his behavior assistant hours were approved, but problem now is until a service authorization gets sent to ABA company I am still without help for him. Paperwork holds up everything, drives me crazy. I have been noticing Philip’s auditory memory is very week so I’ve gotten a few things to work on that. I really like the Hear Builder things from Super Duper Publications. Philip is working pretty hard today, he knows if he gets everything done he gets to go to Publix. Publix is like Disney to him LOL.
October 4, 2015
Philip doing well today except for stim he has developed rolling his eyes back in head while whispering words from some movie I’m sure. It seems every other week he develops a different stim. Still interesting he didn’t stim at all while he had his cold. Did get good news on behavior assistant hours, they are going to taper us down over the next 6 months replacing with personal support person instead. We are very happy about this as they were just going to end assistant hours before anything else was in place. Now that he is feeling better he is back to holding hand on ear on and off through day while saying UhUhUh… Still haven’t figured out why he does this. Going to revisit his diet and see if I can get his gut feeling better. He was on gfcf, scd, oxalate diets for years with no difference but maybe now that he is older I guess it’s worth trying again.
November 13, 2015
Philip had his IVIG today,always seems to do better after that. We are hoping we have things balanced out for now with Periactin for headaches and very low dose 6mg of Zoloft for anxiety. He loves the holidays and is already blasting the Christmas music. Went to the store and he was trying to put a turkey in the cart. He is funny because as soon as a holiday passes he wants the decorations down by the next day.
September 30, 2015
Haven’t posted in a few days, Philip has been sick with a head cold. I always find it odd how much better his behavior and even his speech is when he is sick. Wish someone could figure that out. Been dealing with Philip’s behavioral assistant hours today on the med waiver. Apparently he is not severe enough for him to receive them so he is just cut off before any other supports are in place. Wish he was not 21 yet, it was so much easier to maneuver the system.
September 24, 2015
Good day for most part but some odd stims with mouth. Just came off Topamax so possibly from that. Very noisy tonight with eee’s. Funny how he doesn’t like others to make noise, especially babies or kids but he can get so loud. We are still going through the process of all the changes in doctors/therapies… with Philip turning 21. It is a very stressful time with so many changes and no one that really guides you through the process.
September 23, 2015
Good day today for Philip. He was very happy to go to Target and Publix today. He is obsessed with Publix, could be the chocolate cake. We had been trying a medicine called Topamax on him, thinking he may be having headaches. Unfortunately, after being on it a week he could not follow any directions. He acted like he was just lost in his head and didn’t know where he was even at for the moment. We tapered him off it and he is doing better although not talking much the last couple of days. He also has developed a weird tongue stim. We are not sure if it was from medicine or just one of the many movies he gets stuck in his head.
These are past blogs of our journey from 2008-2009 Philip was around 14 years old.