Friday, December 7, 2012

"I'll Take Aggression Over Seizures Any Day...."






"I'll Take Aggression Over Seizures Any Day...."

These are the types of trade-offs we are making these days.

I posted last week about an email we sent to Kyle's psychopharmacologist (read) about Kyle's increased aggression, mostly at school.  It's gotten to pretty much legendary proportions.  He just acts out big time  for a big chunk of the day while he's there.  

We see a taste of it at home, but not nearly what they see in school, (maybe because we ask less of him?)

So we got the aggression going on.  

We've also got the return of one of my least favorite stims/habits...playing with saliva.  Not spitting, per se, but using his thumb and index finger to take a dollop of saliva out of his mouth and placing it around the house.

And his breath holding which had been slowly decreasing thanks to a year of behavior therapy is back with a vengeance. 

And he's slowly having more pee-pee accidents of late.  He wet the bed again last night.  :-(

And he's been a bit more OCD-ish and high energy lately...constantly climbing on the bathroom sink, constantly stimming in mirrors all over the house

So, add all of that up and you could say that Kyle's had a bit of a behavioral regression lately...which really sucks.  And some of these regressions can kinda/sorta be timed to Kyle going on an increased dose of his anti-seizure med, Depakote, last month.  

But with this behavioral regression comes two pretty big positives.  He's been seizure free since going on the Depakote and he's put on a few pounds and has quite an appetite.  He also seems less clumsy, seems to have better balance.  

The seizures & appetite were two HUGE issues, that for the time being it seems like we don't have to worry about that much.  
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So, I think I have come to the realization that it's ALWAYS gonna be that when we kinda solve one problem we create another one.  It's NEVER gonna be perfect.  We are probably NEVER going to be at a place where all of Kyle's medical/behavioral issues are settled at the same time.  

It was hard enough trying to do that when we were just dealing with autism for the first 8 years.  Now throw seizures/epilepsy in the mix and it seems like we are always going to be in a place of adjusting meds to help reduce seizures, while trying to find the right balance of the behavior issues that we can live with.

And for right now, we will take aggression over seizures any day of the week.  And for right now...all you teachers are gonna hate this, but the school is gonna have to suck it up and break through the aggression they are seeing at school because even though the depakote might have made his aggression  worse, it's helping the seizures and it's helping him put on some much needed weight, so we are sticking with it for now....  (the aggression at school actually pre-dates the depakote, but it has gotten worse the past few weeks)

So that's what we are doing.  On the advice of his psychopharmacologist & neurologist we are slightly increasing his dose of klonopin (which has been a godsend since last sept) to see if that helps with the aggression and ocd issues, but we are not going to make him a zombie to get rid of the aggression.  We're all gonna have to break through it...

What sucks about all this, is as usual, it seems like we are never ever talking about Kyle making any real cognitive progress at home or at school.  It always seems to be about managing behaviors and medical issues, and getting him back to being a healthy, happy kid.  Right now we've got the healthy part, not entirely the happy part.  

But it feels like it's been YEARS since we've seen any real significant cognitive progress.  His IEP's have kinda looked the same for the past 2-3 years.

But as I said in another post Kyle's happiness is more important that anything else to me (read), but it sucks hearing all these negative reports about from school every day.

I said to the wife last night when I got home...

"New rule.  I don't want to hear about Kyle's day unless there's something positive in there to tell me...cuz when you recap it you get just as annoyed retelling the story.  So, no recaps anymore."

And the wife & I sat and ate dinner without recapping whatever crazy meltdowns happened that day at school or at his behavior therapy appointment.  And it was peaceful and lovely.  

Ignorance is bliss...

I think that's all I got.  Wow, this post was like one of my old posts.  It is literally all over the place!!  Oh well, I hope it kinda makes sense...

OVER & OUT!
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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20?  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!







29 comments:

  1. I remember telling my son's teacher; "tell me about the 5 minutes he did something positive." I already knew the negative behaviors and didn't need to hear all the details daily. Sorry about Kyle's latest issues. Take Care

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    1. we also upped my sons Depakote and saw some behabiors that we never saw before. It seeems to have worked itself out (of course after we had the school get a behaviorist involved which included a timer and reenforcer which we don't need now)LOL! He is also growing cognitively which is a plus. Hang in there!P.S.t took about 6 weeks to get rid of "Angry boy"

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  2. I agree with most of what you have to say, but as the wife who stays home with our ASD boys . . . is SHE ok with not being able to share the insanities of his day with you? I tried that for a while, but it honestly just made me feel like I was on my own with the bad stuff and only able to share the good stuff. But of course, if she's good with it, then good for you both :D Sometimes, it's about progress. Most of the time, it's about surviving. There's nothing wrong with that. Hope the aggression and OCD drops off a bit soon!

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  3. My son will be 10 years old in February and has severe autism, severe sensory integration disorder, severe verbal apraxia of speech, epilepsy & a severe immune deficiency disease called DeGeorge Syndrome. He is completely non-verbal, still in pull ups, never sits still, can have a seizure at any time & has to go to the hospital every 2 months to be sedated to get his antibody infusions for 6 hours or he will die. I totally get what you are saying and I subscribed to you because I live it every day too :)

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    1. My name is Johanna Palestini Burke on Facebook
      Would like it if you friended me to read about my son:)

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  4. Its really interesting reading the things your son does...I have 2 girls who are considered high functioning but the behavioral issues you just wrote of (OCD, spit issues, accidents, stimming in mirrors) are big in our house.

    My daughter has been seizure free for 2 years....I'd take aggression over seizures any day too!

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  5. Just a suggestion..ask the nuero about adding topamax. My son is 8 and has complex partial seizures. He takes 2 25 mg sprinkle capsules of topamax twice a day and one 125 mg sprinkle capsules twice a day. He has always been aggressive so he takes 1.5 rispiridone every day. But since they added the topamax..man has done wonders!

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  6. I like this..

    "New rule. I don't want to hear about Kyle's day unless there's something positive in there to tell me...cuz when you recap it you get just as annoyed retelling the story. So, no recaps anymore."

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  7. I have never posted a comment but have read and learn from this sight. I can't help but wonder why most parent feel as if school staff must deal with fighting students and not be held respondable for their actions. Most staff want because if they defend their self parents want to sue so it's best to leave the child alone I have heard staff tell students to save that behavior for home.Most staff feel it's best not to be honest with parents about their child just sugar coat it because whatever problem happen after school and school breaks is 100% the parents problem. So you can bully the school all you want the fact is they get pay to work with the student and after 3:30 they are done and parents can't bully the public like they do public school for free,plus the IEP expires @ the end of the school day so most staff feel parents should suck it up because after all this is your problem for the rest of your life not the schools know matter how hard you try to force it on the school. Staff is fed up with some parents who want the school do undo do all the learn behaviors that some allow and want school staff to stop. So like you want the school to suck it up they want parents to suck it up they want to educate your child not raise them and yes most staff want cameras in the class just to show the courts what they are dealing with and how a child may get marks while staff defend their self. Yes with all the the insults parents have toward schools they have just as many if not more about parents.

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    1. It's your job to "deal" with aggressive students. Especially those with ASD. As a neurotypical mother with an SPD child, I can only imagine what it is like to have a child with ASD. I work in a psychiatric treatment center for children on the spectrum and work with the special ed teachers. If you feel like you shouldn't have to "deal" with aggression then maybe you should request some ABA training and physical intervention training...... or choose a different career path. Educate yourself and you'll be able to relate, understand and empathize.

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    2. People who work with ASD kids in public schools need to be highly trained and qualified professionals. A lot of these behaviors can be avoided if the professionals know what they are doing. I am a huge fan of FBAs, especially when they are done by highly qualified Independent BCBAs. All positive interventions must be implemented. If your school is having so many issues, then the staff are obviously in over their heads and need appropriate training. A lot of times kids are way worse at school because the staff are (unknowingly) causing these kids to exhibit behaviors. It is KEY that staff KNOW ASD & know strategies to prevent and/or deal with behaviors. Training is KEY.

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    3. when do parents go get train,when a child is hurting people in the home or tearing the home a part. it amaze me how some expect others to get train when they don't and want believe anything they tell you about your child saying you don't know my child fine don't ask. Whoever you insult the bottom line is your child,your problem the rest of your life iep's or not. Parenting is a larger KEY !!! because the public don't look or ask who is this child Dr, teacher,staff,ot,etc they look at the parents plus the iep expires at the end of the school day,weekends,holidays. The fact is school can't be honest with parents because some parent can't deal or except the truth,always crying I'll sue you but it don't change the facts.

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  8. I guess we have been very lucky just to have a 4 year old with Autism who is non-verbal and not potty trained. He thank god has never had a seizure and i'd like to keep it that way :) Seizures do run in my family so i pay close attention all the time because you never know whats gonna happen next.

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  9. I love the new rule, I honestly think it might make things change a bit for the three of you.

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  10. While we are not seeing aggression, we are seeing an increase in anxiety. Talking with the NP at the developmental pediatrician's office today, she said that at this time of year many kids with autism display regressive behaviors and increase in anxiety and aggression. She said it is a stressful time of year for lots of people (I agree, very stressful for me). My son's anxiety is so bad we are seriously considering zoloft to get us through to the new year. AD, I just joined your ranks with the happy pills for me, but I am so scared to give it to my 5 (almost 6) year old son. Just get so tired of having to make these decisions....

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  11. Wow...I work in a level 3 dcd room and have many aggressive kids. None of the staff in our classroom would ever blame a parent for a kids behavior! Each kid is different and each family is different of course but the aggressive behavior has purpose for these kiddos...unfortunately when they are non verbal it is not always easy for us or the parents to figure out. Ever...maybe never. But that being said I will always pick no seizures too. The chances that we can figure out something that works may be slim but its non existent if they aren't healthy. Honestly if they are healthy and happy thats the most important thing. And I sometimes I think thats what they have come here to teach US.

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    1. You, my friend, are the sort of teacher all kids need! One who cares about the kid and sees beyond the behaviors to what the child needs, and beyond the inconveniences to the goal of reaching the child and helping them learn and grow!~ Thank you for your gift!

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  12. You simply have no idea how much it helps to read about you all. I am so grateful to you for sharing everything you do.

    Hope this aggression stuff dies down soon. In my experience, right when I literally want to jump off a cliff then suddenly things get a little better. But the lows can be low and the highs can be hard to find with kids like ours.

    Anyway- thank you. Your blog is a godsend to me. :)

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  13. How old is Kyle? Is his aggression due to puberty? More testosterone being produced? I've seen some conversations on FB regarding this. Mother's not knowing what to do about sexual stuff. Just a thought.

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  14. I feel you. Seems like we have been juggling behavioral/medical issues over the past few years with no progress on the cognitive side. Aggressions really get to me emotionally. Such a difficult balance.

    I hope things even out for you guys quickly. As always, I'm a huge fan of your loving honesty.

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  15. My son, who is 7 and non-verbal, has recently been having major aggression issues. No seizures thank God, but we are on our 4th medicine and nothing seems to be helping a whole lot. We started on Resperdal and that worked for awhile and then it just stopped. We even tried increasing it to no avail. Plus, the kid ate non stop from the time he got up until the time he went to sleep. SO then we tried Tenex and that didn't work, it kept him up all night. Next was Abilify...this was the worst yet. His aggression became so bad, we were patching holes in walls constantly and he began to hit and kick his siblings. We just started Geodon and I have already seen a little improvement but we are still far off from where he was when he was happy. And, school is a whole other issue. He has had several great days at home while on this new med (he has only been on this for a week) but is super violent at school. I am hoping that things get better as we have finally weaned him off of the Abilify which was causing him so many issues to begin with. If this doesn't work, we will just have to move on. I have to believe that there is something out there that can help him. Times are very rough right now, we are feeling your pain over here in our house AD!

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  16. I guess i may be the odd one, I would rather deal with my children's seizures then my daughter's violent behavior. She has put me in the hospital, draws blood, and leaves me covered in welps and bruises. My daughter has no visible evidence of her seizures.

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  17. Just a thought since your son unseating more and gaining weight are his bowls moving well? Constipation can cause major agression. Also after reading many of your posts I understand some about the late regression and than lack of progress after. Our son was a Lovass curriculum and methods( Father of what is commonly called ABA) untill a Hugh regression and near death health demise. We found out that his vitamin supplements were contaminated with antimony(like Arsnic). He has regained some of his past skills like daytime bathroom use and some academic progress but socially and comunicatively he's really not recovered brack to his initial break threw. His immune system is so weakened now that we spent a year battling strep. Check out PANDAs syndrome. I know you get a lot of suggestions but if your son is battling strep without the classic symptoms agression and OCD are the major systems. And simply an antibiotic treatment (longer than 10days) and some strep tests might make him back to his happy self.

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  18. Kyle has so many symptoms of PANDAS. Can you rule it out? It's a simple blood test of ASO titers and dNase titers. If he has it, the treatment is antiBs and the aggression, peeing accidents will majorly improve.

    Oddly enough, my daughter displayed the same symptoms as Kyle when we switched her to Depakote. It ended up being PANDAS. I got her off of Depakote anyway because it doesn't mix well with ASD kids who have mitochondrial disorder. My daughter's neuro said lots of kids can't tolerate it (luckily he is also a mito expert and does clinical research on it). We ended up switching to Zonegran and it has been great. Seizure free and the aggression went away. However, I'm sure it would have improved with PANDAS treatment alone. If you don't know what PANDAS is, google it and "strep." A lot of ASD kids struggle with PANDAS.

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  19. I agree with the others that suggest you look into PANDAS. Our son has autism also developed severe OCD, had wetting accidents long after being toilet trained, had spitting, playing with spit issues, severe aggression, increased stimming, anxiety when away from us that caused worse aggression etc. Found out about PANDAS. now with a daily side of antibiotics the aggression is gone, the pee issues are gone, we are seeing huge gains in his speech and fine motor skills, the OCD is minimal but not gone yet.

    I hope things improve for you guys!

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  20. I as a parent as a teacher once why was she not train in dealing w/asd,special need children ask her to be honest her respond was 1,never intended on teaching special need children.2.that was a extra $8.0000 for the endorsement and was not going into her pocket. 3. even if the school offer to pay ( and they will not)she wouldn't take the time from her family. This was force on her and the public school's. My son is VERY aggressive as he get older an stronger it get worse and staff just leave him alone because he want follow verbal commands such as sit at his desk to work and they want touch him fear of being sued. Once in the school parking lot while dropping him off he was fighting me wouldn't get out of the car all staff did was walk by and look not 1 offer me a hand I took him back home call the school to ask why no help was told 1st they were not on the clock,2nd staff do not come between students and parents. 3rd for fear of being sued.4th they only take students off the bus not cars up to parents to get them in the school and want be put in the iep to help me.I was even ask who did I expect to help me in a store parking lot. They let me know they get pay to try to deal with him and their time is up at 3pm train or not. As one aide said if I ever walk in and they say we can't pay me back home she go for this is not her child or her fight. I ask a train person how muc they would charge me babysit for 2 hours after school was told $25.00 a hour but wouldn't do it WHY fear of being sued. I learn years ago that unless they are being pay they avoid my child and the fact that he wear diapers don't help.Staff want change him when he put up a fight saying they want force their self on him and the law support his rights to refuse to be touch. I'm tired of this fight...

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  21. Definitely look into PANDAS/PANS as others have mentioned. MY son has it and many of the behaviors you describe are symptoms of this disorder. http://pandasnetwork.org/research/parent-research/fact-sheet/

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  22. As a person in the public, some of us would prefer seizures over aggression, just a matter of self-preservation especially in light of last weeks event.

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  23. YES! I just thought about this last night! My daughter had a huge seizure this weekend with upcoming holiday changes in the school schedule she was just overthinking and the OCD. Great that here I don't need to explain it. My girl has epileptic and non-epileptic seizures when she gets frustrated... I HATE these damn seizures. I have an older kid with autism too, and I never thought it could get worse than autism... I hate epilepsy, hate it. We don't have it under control yet. Drives me crazy. Our kids can't even give us a warning that it's impending although I am starting to see the signs that one might come on and I have the unfortunate experience of having an ex get visitation who hasn't taken the epilepsy seriously and put my daughter in some very high risk situations. Well, when my daughter was aggressive several years back (beating on her teachers and siblings!) I now think she may have been dealing with seizure like activity. The doctor somewhat agrees, since seizures can manifest as things like laughing, self injury etc. It just always feels like one step forward 7 steps back. It's tough.

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