update on difficult child from Buddy

[buddy]

That boy is upset and scared! I am a little too. So I have given the medication history how many times now?
Now the admitting doctor just called and asked for everything. He said he thinks the concerta is causing the aggression and he wants to start Depakote. I respectfully said no, not right now....After the lamictal is out of his system and after we have the in pt doctor assigned and that person talks to the other three who already had a plan if this Lamictal doesn't work. He said but he is having so much trouble with all of the kids etc. I said, yes, I realize that, which is why he is there. I am ok with a short acting medication to help him calm as long as you research that it is not one of the no-no medications on the enzyme disorder list. He seemed happier...I had to say a million times that yes, he always has some aggression but it is always something we can redirect etc. The kid you see is not the normal difficult child and if it was the Concerta alone, then I think this would have been going on a long time ago. I do believe things change and it may be contributing over all but it was not the tipping over the edge medication. Problem is he also gets this way when he is under extreme anxiety. He is so wigged out that he is gonna seem that way even once it is out of his system I fear. But once he is used to their routine maybe not.

He did say, mom I feel not safe, "I feel like to punch you in the face so I am gonna go out of the room now" THAT is more like him honestly. He does say stuff like that but has never done it. Even during his rage he did not hit me in the face. He says awful stuff but has never done it. It sounds like when a little kid says I am gonna push you down the stairs or other things I have heard over the years. But when a big kids says it it seems very threatening indeed.

So much for my nap.... OH, the neuro just emailed me and she just wanted to know how things are...I told her what happened today and what i told the doctor so I asked her if that was the right response. She will either write or call me back soon I am sure.

Admitting doctor seemed to calm down once he saw I was cooperative, just careful. Wow, I am so praying for healing and guidance in this For myself and each of the doctors.


did I tell you they have a red yellow green privelege system? Oh gosh, I brought them in his system (which by the way they were super impressed with) so they could understand why he might be a little confused. bottom line green is for following directions which is the same. But I fear my kid will never be one of their "green" kids.

 

[Liahona]

I hope they get his medications straightened out soon. How long until the Lamictal is out of his system? I think you should still be paid while he is in phos. You are going to have to manage his docs and medications.

 

[buddy]

I hope they get his medications straightened out soon. How long until the Lamictal is out of his system? I think you should still be paid while he is in phos. You are going to have to manage his docs and medications.

I agree, sigh. MA cross checks and I dont want to lose his waiver.
Thanks for the support!

ALL IDEAS WELCOME!!!!

 

[Steely]

Phosph is one of the most frustrating places in the universe. They think they know it all - and they don't. And if you are not right there to slap down any orders that might be in the Dr pipe - they will treat your kid like any other "troubled kid". I am glad you are one of those moms that is ready to take out anyone who has an idea that might be contrary to his care.


Questions:
What type of enzyme disorder does he have?
You said he was on so much Concerta because of his brain damage? Who xr that? The neurologist?
And he is on lyrica to control the seizures - does it do a good job of that? No need to change that?

So the phosph needs to consult with difficult children psychiatrist and neurologist right? That will take, at the earliest, Monday afternoon given the red tape in these situations. Is there a prn he can take to help in the meantime?

Just in terms of my 2 cents on medications (which doesn't mean much) :
It is odd that he is on a lot of Concerta (that can rev a kid up) and then on Clonidine (which brings them down) - they could actually just be cancelling each other. And then on Prozac, which can also rev a kid up.
I would really work with the doctors on decreasing the amounts of medications he is on that can increase aggression and impulsivity - and have them start on mood stab medications, or APs.

HUGS! Know you are not alone.............

 

[TeDo]

I can so relate buddy. I will keep praying that all involved give difficult child ALL he needs. FYI, I might need my spare set of armor back. LOL sorry

 

[hearts and roses]

I hope things settle down. Sending continued prayers, buddy.

 

[buddy]

Hi steely, thanks for the good questions. Yes, it would seem like the concerta at a high dose could cause that but the enzyme disorder is one that 6-7% of the population has and the paper is in my purse right now but there are very specific enzyme systems and the one he has very little of is one that helps digest and process medication. It is diagnosed through a blood test for liver enzymes. So the large dose of Concerta that goes in his mouth is not what becomes available for his brain to use, most is flushed out. In fact though, we all agree it is not like one can just keep increasing this with all the unknowns so the reason we even tried a new medication is because we have started decreasing the concerta and need to find something to help. The AP's are on the big NO WAY list for his type of enzyme disorder. We tried two before we knew...one at age 4 and one around 4th grade or so. Awful experience, just like this time but he was smaller and I could handle it all. Once off it for a couple of days, he was back to himself. So for the enzyme issue... his psychiatrist was actually someone who has studied this issue (by coincidence, it was diagnosis before we met her) at Mayo Clinic and she said there are some ways to dose that can maybe avoid the problems that happen but we would not do that out patient or during school SInce there are other options we may not even go there because it was so dangerous when two of them were tried before we knew. The other reason it is high is because dosing for a brain injury is different from ADHD, he can't be off of it or Ritalin whichever we use on a given day....for any of his awake time because he is far to impulsive to be safe. He does not even sit and eat when he is off Ritalin. It has made the difference between his living in an institution and not going to school to being in a home and having family to grow up with, go on vacations and to be in public school and make friends like this summer in our pool. It does work beautifully! Thank heaven. The Clonidine was used before he ever started Ritalin and then was d/c for many years. As he got bigger and stronger it was added because it helps his aggression so much. The aggression was there before Concerta so does not seem to be caused by it. But certainly it does take some of the happy go lucky kid away, I think it does increase his grumpiness. The lyrica was chosen because of his age and teh extreme headaches he got after seizures. Yes, he has not complained of seizure symptoms except for a few times (was daily...and they were recorded to be happening all day and all night on and off). His headaches were gone until the Lamictal was started, boo hoo.
Prozac and ssri's are on the no no list too, and the first time it was tried he got very depressed. Then they tried to start it in minute amounts and go up to a dose that helps. I agreed and it worked. not that it cleared up teh anxiety but he started saying he felt x, y, z and would tell me he loved me in a genuine way, gave gentle sweet hugs, etc. It was crazy how things changed for the good! I do question it because it was started in response to his seizure symtoms being misdiagnosed as depersonalization/derealization psychological symptoms. (lt sided temporal lobe can have these symptoms and obviously true since seizure medication worked and prozac never did help that issue).

SO, it is complicated and yes, I refused to let the admitting doctor start anything until old medication was out and all three docs consulted with the inpatent doctor. I have been on cell conversations and email all day with the neuro and she likes what I told admit doctor so whew, that helped. I also shared my concerns about them not understanding his brain injury and asked for her help in explaining it.
so the reason we started the lamictal was to see if we could reduce the concerta or at least not have to increase it anymore. It was chosen because there may still be seizure activity because of the sudden extreme behaviors that dont respond at times to any behavioral methods and then he gets tired and headaches again. it is much less now and he does't experience the symptoms (of feeling "fake") but the symptoms he can't identify we are concernd about.

Those are all great questions and unfortunately he just has that crazy kind of metabolism and I guess we are lucky to know about it. His pediatrician was the one wh figured it out. He actually had the MAX dose possible of an anesthesia when he was 3 for a sedated MRI...Never touched him. They couldn't believe it. Now we get it.

Oh, and you are right on...I did authorize ativan and it seemed to help a little bit. That is not on the no no list for him. I have always wondered if we just used a straight anti-anxiety medication if it would help. When he was younger they didn't want to but now???? I would love that they gave it, found it worked like a miracle and we could get rid of everything else but obviously that wont happen, sigh. One thing at a time.

 

[confuzzled]

out of curiosity, did anyone suggest a trileptal trial?

its used for both seizure disorder and mood stabilization.

just throwing it out there--i clearly know nothing about enzyme disorders so it may not even be an option for him.

 

[buddy]

out of curiosity, did anyone suggest a trileptal trial?

its used for both seizure disorder and mood stabilization.

just throwing it out there--i clearly know nothing about enzyme disorders so it may not even be an option for him.

Yes, that is on the list so good call. Just that lamictal was an even better choice so they thought... on paper it as anyway, smile.

The ativan actually did help some but they didn't give the last dose of clonidine (written instructions only said twice daily so it was a mix up).

 

[DammitJanet]

Buddy, I dont know if I remember your original post or not about how he ended up with the Traumatic Brain Injury (TBI). Birth injury I am assuming. I also dont know quite what sort of enzyme disorder he has. He really seems like a complicated young man and he is lucky to have someone who is so dedicated to working closely to get him the help he needs but it cannot be easy.

I dont know what medications you have tried before but I have read that the AP's are on the "do not give" list. Has he ever tried any of the normal seizure medications or any of the slightly newer ones? I am thinking of things like Topamax or neurontin. Though you said he is on lyrica so I dont know that you would want to go to neurontin because that is in the same family. Topamax isnt. I am on both Topamax and neurontin and they work on different neurotransmitters.

I know there are many newer seizure medications out there and I can pull up just my insurance formulary to give you what they pay for and that wouldnt be all of them and I had noticed that there were some on there that I hadnt heard of the last time I was flipping through the pages. I dont know if that would help you at all to ask the doctors about while he is in there but if it would, I would be glad to list them for you.

Oh...and I want to say that I can agree with you on how the ritalin family of drugs does help people with Traumatic Brain Injury (TBI)'s function better. I have recently started on one and my brain is working much better.

ETA: I do take the regular anti-anxiety medications and have for a long time. I have taken ativan, klonopin and now I take xanax er. They have a klonopin melt tab. I think that was the one. You can take that one for acute emergencies. Now I really like the xanax er because I take that once a day and it just calms me for the whole day. When I was on the melt tabs...I had those and the ativan both. I took the ativan at night and the melt tabs as needed. Maybe ask the doctor about them.

 

[HaoZi]

We've had great luck with trileptal and minimal side effects (just a salt craving, which is normal for trileptal). Would a patch version of medications bypass the enzyme issue? I know you don't want to go the injection route, but some medications have a nasal inhaler version, too.

 

[Liahona]

Buddy, my heart goes out to you and difficult child. I hope the doctor there listen to you. You know more than they do about how difficult child reacts to medications.

 

[keista]

Continuing to send positive thoughts and strength your way.

psychiatric hospital is difficult to navigate for the typical situations and kids. For yours, it's goes beyond a really tough situation. I have faith you will continue to be awesome and do your best for your son.

 

[buddy]

Thanks Janet, that is really helpful to know. No he did not have a birth injury. Honestly I don't remember if I did say what happened. sorry. Ignore this folks who have heard the story...

He was born to a drug addicted mom and dad, but mom did check into treatment and was clean for the entire time she knew she was preggers. He also tested clean at birth. Allowed to go home with her. She and hubby started dealing/using again and at 7 mo. they got onto a high speed car chase and crased the car with him in front no car seat. HE WAS OK!!! But he went to foster care right then. they tried with her again...dad actually volunteered to give up custody and cried horribly, wanted a better life for his son.

AT one he started having seizures. By age 2 his school and foster mom were concerned that neuro was doing no testing to see why seizures and so school got sw to get a new neuro. At 2-3mo. he went to that neuro. He sent him for emergency CAT scan and they saw a huge mass ....report says it was the size of a beefsteak tomato. SO he had high pressures for over a year and it ended up being a Cavernous Angioma which is a blood filled vessel (low pressure not an avm) and it had leaked several times so he had several strokes. This is where I get sad, if he had had the cat at the beginning of seizures.........

So when they got in his entire brain was shifted to the left causing a mass injury. They had to remove some of the rt. fronal and temporal lobes.

He was in the hospital all of TWO days. I had already applied to adopt him but didn't know I was selected. They found it then called me and asked if I still wanted him. UMMMMMMMM... if he was my birth child i would still keep him so yes....I know it is different but to me, my heart felt lead to it. I wasn't desperate, I had already declined placement of girl twins....and I loved them too in my heart (only pics the didn't meet me and never knew about me....). I just couldn't negotiate what I knew they would need and I could not do a poor job of parenting them..... so sad. But that is not the case with Q. They felt he would heal and recover and the issues would just resolve....everyone , therapists, sw, neuro thought that. One psychiatric said she still thought he was autistic. SO she was right.

That's difficult child's story.....bummer huh? but for a kid who should be dead, much less not walking or talking, he is doing pretty fantastic!

 

[DammitJanet]

wow. Poor kiddo. I cannot stand people who do not put kids in car seats and this just seals the deal for me. A 7 mos old in the front seat with no car seat and a high speed chase and crash. OMG. Im just in tears over that. You know Im a grandma right? That just makes me sick. I think after I became a grandma I have become much more aware of car seats and all that. I am hyper aware. I would kill myself if that happened in my car to one of my grands. I simply couldnt take it.

Bless you.

 

[buddy]

Thanks DJ, Well, I went to my first visit with difficult child for the day and he had asked me to bring mc donalds. I talked to the nurse because they have to be at a certain level for outside food but they admitted that he was probably not gonna be there often so they agreed with me if he could be ok with me (he does't have to be lovey dovey but not to call me names or throw crayons at me etc.) and he was all happy. I showed up and he told me to get out and he called me names and threw the crayons he was using. He is really testing to see if I meant it that this is a new day for us. I will not be hurt no matter what and I will keep him safe because that is my first job. He is really scared what that means (worried that means I will never let himplay with friends etc...)and we are going to present it in a way he can understand.

wow, his neurologist just called again, she said she just didn't want me to be alone in this. She is looking up all of his past medications from when he was 3 yrs old. She emailed our pediatrician. and so he knows the scoop too. He has been checking with her this weekend. Wow, they are so amazing. I dont know how that happened because I hear such horror stories. But I know one thing, my little guy deserves it and there are enough people in this world who dont get him and dont help him so....

ok talk to you later...love to all!

 

[HaoZi]

Cooperation between docs is a great thing.

 

[DDD]

I've always heard that your State is way above the rest in treatment. You are so fortunate to have professionals who are proving that they care. I'm impressed and grateful for you and difficult child. Hugs DDD

 

[Liahona]

Don't you just want to huge the neurologist? She sounds great.

 

[buddy]

Well, I tried to bring him mc donalds this afternoon but he just couldn't stop from blurting out inappropriate things at me, he threw crayons toward me (not to hurt but just mad). so he asked for it again and I said no it is against the rules if you are not in green zone. So then he called me between visiting times and asked again. I said sure, I will come to see him, we will try again and then I will get it. I had it in my car...went in and he barely tolerated me in the room. he gave me a stiff hug and said to go get it. It was an improvement so I got it...they said he was mostly ok all day. So, I got it and gave it to him. he said he missed NASCAR because of me and he hates me. He said he doesn't care about anything anymore and he asked again why I just didn't hold him like I used to when he got mad. I tried to explain and he just threw the kleenex box at me. So, I left. I didn't want to trigger an outburst. He has nearly lost his voice from the screamming episode yesterday. He still has marker all over his face.
A nurse there finally asked me about him and didn't just talk at me. I shocked myself, I couldn't talk. i just bawled. still cant stop. I think the fatigue finally hit. He said I could take a break and not come....I said no way. He already has attachment issues. No way he is going to test me like that and find out that I would leave him. So, I drive 40 mintues there for a 5 minute peek to know he is okay...that is fine with me.

Good thing I didn't let that doctor give him depakote. Turns out he was already on it back when he was little. we took him off it because he wasn't having seizures anymore we thought...and it seemed to irritate him. He was better off of it. THAT is why I wanted to wait till the team was together. I know he was on Keppra too.

My sister reminded me that when she was a teen she got depressed and she called my mom from the hospital and told her she hated her too. HE is so scared and that is his tough talk. He is plotting his revenge...sigh. I told them we are really going to have to do a time line for cause and effect and a social story to discuss our family rules and what my job is and what his job is. (mine is to keep him safe! His is to be safe....we will make it much more concrete obviously, smile) he is so mad, I dont know how he will get un-stuck from this one. I have never ever seen him so scared and upset.