I could use some sage advice

[melissa17s]

I am not sure what is going on with ds. (sorry this is so long) I would be open to any thoughts, ideas, or direction.  He has been having behavior problems at school, which have become more climatic since February. This past week was tough for him. 

 

Just to give some background, he was dx last summer epilepsy at age 9 (now he is 10).  Last spring his school started an intervention for academics, but not behavior.  This fall he was dx with adhd-i and dyslexia.  After treating the epilepsy, he has made huge strides academically, but we have had a tough time with his meds.  We switched at the beginning of Feb. because of the anger and aggression he had at home on  1st.  He was also impulsive at school- often making short or mean statements.  He also had seizures periodically although they were mostly controlled.  Was not in too much trouble at school.

 

His new med has been questionable.  He stopped being angery at home, and is still impulsive at school, but now he is happy chatty impulsive instead of mean.  At the end of February, he  scratched up one of his 2 best friends face.   He thought the boy was licking him and freaked out scratching his face.  He felt very bad after the fact and realized that he over reacted in an inappropriate way.  A couple of days later, he punched a kid in the stomach.  The kid was frustrating him over a recess, and this time, he was aware that his behavior was bad before and after. 

 

At the beginning of march, he told his teacher that he was depressed.  She said he sounded like he was reading off the side effects for the suicide warning on his medication.  We went to see his neurologist, he referred us to a sleep deprived eeg and  a psychologist, who did not meet with us until mid April.  We will not get to see her again until the end of May. He did not sleep during eeg as requested, and passed with not seizures- I felt the tech called it off too early because i was reading him to the whole time trying to get him to fall asleep. His teacher felt in mid-march that he was maybe having seizures because he was having attention issues and confusion after being "spaced-out".  

 

So, this week, his teacher tells me she thinks he has been have seizures at least 2 times a day that she is catching for over a week (I am having difficulty getting teachers to document actual times of seizure activity for me). We also discussed a letter I had to sign on Monday regarding the fact that he called another kid a b*tch at recess because they had a dispute over flag foot ball at recess.   The next day, the kid told him he was ugly like his mother.  Ds spent the 1st half of recess crying because his feelings were hurt, but did not react other wise.  On Wed. he stayed out of trouble, but fell hard at recess, and said it hurt so bad he cried for over 10 minutes and went to see the nurse.  Thurs. was fine.

 

Friday was bad.  At recess around noon, he was playing flag foot ball and had rescued his other best friend.  They were having a good time, then next thing he knows, he is biting her.  He says he did not know he was doing this until he hurt her crying in pain.  He broke her skin on her arm through her jacket and sweat shirt.  He was confused and upset about what he did.  She went to the nurse- and is ok- I talked to her mom.  Her mom was concerned; I have not told her about ds's challenges, but she kind of knew.  She thought we should seek out help and thought we should contact a program that works with her ds that has autism.  

 

The hard time I having is figuring out ds.  He generally tells the truth, so I am inclined to believe he did not know he was doing to bf.  He feels he should not be allowed to go to school because he is worried he will be out of control and hurt someone else.   He has been very affectionate around home ever since the med change, and very clingy with me when we are together especially this week.  

 

So, what do we do with ds.  School does not know how to handle the biting.  Because of the confusion, they thought maybe it could be seizure related?  I do not know, so I tried to call the neurologist, but he did not call back.  If not seizure related, what is going on?  How do we help him?  Try to find another psychologist, switch to a psychiatrist?  Is there programs we should search out?  

[Kirsten]

I have no personal experience with this - but it sounds like you need doctors and/or therapists that call you back and schedule in a more time urgent manner!  Especially given his depression and physical attacks on other children (biting and punching in a ten year old can really do some harm - and it is unfair to send him to school in this situation IMO).  If all the issues are due to frustration at recess, could he continue going to school but stay in during recess to draw or play solitaire or something he might like that would be a true break for him?  It may not be possible as the staff may be on lunch break or planning time then and unable to monitor him - but worth asking.  I hope you figure out what meds will work for him and that all this gets worked out for you and him asap.

[Emmeline II]

Originally Posted by melissa17s 

So, what do we do with ds.  School does not know how to handle the biting.  Because of the confusion, they thought maybe it could be seizure related?  I do not know, so I tried to call the neurologist, but he did not call back.  If not seizure related, what is going on?  How do we help him?  Try to find another psychologist, switch to a psychiatrist?  Is there programs we should search out?  

I think you need a psychiatrist, but considering how complex his issues are I would also get an appointment at a place like this Division of Developmental Disabilities: Department of Pediatrics ...

This post comments on the difficulty in determining whether or not an epileptic has ADHD #4

[melissa17s]

Thanks Kirsten and Emmeline II.  I am going to ask his neuro for a referral to a child psychiatrist because we have felt the psychologist has not been available to help.   I will also look into contacting the department in IA City, but am concerned because they are about 3 hours drive from us and need to talk to our neuro about it to make sure they will work with him and insurance, too.  Our neuro has talked with us about how difficult it is to figure out whether behaviors are e or adhd.  I think ds is in the 30% of kids with both and thanks to that site, I have learned a new word comorbid.  

[Emmeline II]

Originally Posted by melissa17s 

Thanks Kirsten and Emmeline II.  I am going to ask his neuro for a referral to a child psychiatrist because we have felt the psychologist has not been available to help.   I will also look into contacting the department in IA City, but am concerned because they are about 3 hours drive from us and need to talk to our neuro about it to make sure they will work with him and insurance, too.

I just googled for a clinic in your state, there may be a closer one.

[melissa17s]

Originally Posted by Emmeline II 

I just googled for a clinic in your state, there may be a closer one.

It is not unusual around here that people travel to IA City or up to Mayo for bigger medical issues.  I am not sure at this point, though, I guess we will talk more with ds' dr on Friday.  I did contact the local service that ds's friend's mom recommended, but I do not think ds qualifies.  Most of their programs required that he have either intellectual delay or brain damage, which he has neither.   

[Nobody123]

My daughter also has epilepsy, but she is only two.  She takes Keppra which controls her seizures beautifully but it does indeed come with a list of behavioral side affects including agression, depression, suicidal thoughts.  I wonder if maybe he could try a different seizure medication?  Is he medicated for anything else?  (The ADHD?)  If he is on medication, it sounds like they aren't completely controlling his seizures (according to his teachers) so maybe a change is in order anyway.  I would think that biting someone and having no memory of it could certainly be seizure related.

As a child I had a teacher who thought I was having seizures too, because I was zoning out in class.  I also had an EEG, could not fall asleep, and was dismissed as "Normal".  Now here I am with a child who has seizures, so I am not 100% I didn't have them as a child.  My daughter's EEG did not show seizure activity either. 

I'm so sorry your son is feeling so badly.  It must be really scary to feel that you may be out of control without warning.  I think I would certainly try a psychiatrist, but I would be speaking with the neurologist a LOT, as he should be closely monitoring this behavior, be it seizure or medication related.

[melissa17s]

Nobody123, We have questioned his current medication working- it is gabapentin (neurotin).  He does not take any other meds.  Keppra might be an option, but because he had anger and agression on Stavzor (valporic acid), we wanted a more mellow medication when we switched back in Feb.  I put a call in to the neurologist on Friday, and now I am waiting to hear back.