September 28, 2004

Stability... Where is the line between stable and manageable, and stable but needs improvement?...

I've always said that stability is in the eye of the beholder, and means something different for every person. some of you may remember that we were able to get Dalton off Zyprexa last spring when we almost doubled his Seroquel. We also removed his Tenex, and the Inderal we had replaced it with as they were not doing much of anythign measurable. Then as summer began and school ended, we removed his Topamax.

When we took aways the Topamax, several things happened. His thinking was clearer, his languare was a bit more mature. he was speaking in more complete sentences and paragraphs. He was reading, and as school has started, he seems more ready to learn and is doing well at school. In addition, Dalton is making real friends more than in the past, I don't know that this is related to the Topamax, but who knows? However, on the negative side, his hyperactivity increased, and his ODD... We added Abilify which we had had a PRN RX for and had not used much, I really did not see a measurable effect. Hopeful thinking made me consider his activity and impulsivity may have decreased, but over the course of the summer, his increased steadily. Yet, he was still doing so much better in other areas, I did not want to make any changes for fear of losing the improvements.

I increased the Abilify to 7.5mg from 5mg, and I saw his anxiety become more. So, over the past couple weeks or so, weaned him off... No regression or worsening of symptoms, but maybe a bit less anxiety??? Another negative we have seen is that his toiletting (BM) issues have become constant. He rarely if ever uses the toilet for a BM, and is having accidents 3-5 times a day, including at least once a week at school. Gene told me a month ago we needed more meds for Dalton, I did not want to hear it... However, I had to conclude that he was correct. Definite hypomania, and we need to get a handle on it before spring.

Last week we did a lithium level and he is at .8, Although this is therapeutic, Dalton usually requires 1.0 to be stable, however, before we would raise his dose, I would want to see a 2nd level to confirm. Instead, I called the pdoc and asked that we add a MS to replace the Topamax, and asked for Zonegran. Dalton began 25mg last night, to go up to 50 next week, and then 100mg the following week. Wish us luck. I hope this works without dulling. I know this can be a good med, but we don't have many options to try since we have bombed on so many, and I don't want this to be another failure...

Gene and Dalton are out graage saleing this morning.... great activity for a manic kid! LOL

I almost forgot to mention that he survived ISTEP testing this week. I volunteered at the school two days, and then went on the reward field trip for the kids who maintained level and behavior during testing, to the zoo yesterday...

Dalton is academically 1st grade for the most part. He is being tested at 5th level! He did great to make it through. He was on silver level the beginning of the week. He had an incident in lunch line Wed, and dropped a level, he was hit and he hit back, but pulled it together for the remainder of testing. Also, since the incident was not during testing, he was able to earn back the field trip and move back up to Silver.

It is awesome to watch him with his class on trips. He is not clinging to me the entire time, he is less overly affectionate with me, Yes there can be too many hugs and kisses! And he has made friends. He made it through the entire trip without a single incident. The classmate who he had the Wed incident with did not. The bus left without him and the behavior teacher when it was time to go as he lost it last minute!

There are good things. I wouldn't consider Dalton unstable, but definitely less stable than we would wish... It is hard to draw the line between stable, manageable, and stable, but needs improvement.

Dalton is not Schizophrenic, his primary diagnoses are Bipolar FAS, and PDD, but there are many similarities in managing different mental illness in children, especially while they are minors. I thank God that I am able to do this while they are young and hopefully avoid major issues as they become adults. there is a blessing in all things if we look for it.


And life goes on....

I hate med changes, and I brought this one on myself. Would I do it again? Yes, in a heartbeat. I want to have Dalton stable on as few medications as possible. We have needed to reevaluate his medications for a couple years plus, now, but then we were going to move, and we did not want to upset the apple cart before we did so. Then, transition of the move, and new school and spring all hit the fan together... Next, it took us four, yep! that's right! FOUR tries to find a psychiatrist in IN that I felt reasonably comfortable with. So all that time, we remained in holding pattern... Then, big brother fell to pieces. As David's behavior became more and more volatile and psychotic before he was stabilized this spring/summer, needless to say, it was not the time to really mess with things too heavily... However, as Spring came and went, we did begin to make some changes.

I believe we are on the right track with Dalton's meds, but I hate the cycles we see in Bipolar illness and the behavior that goes with it. he is doing wonderfully in so many areas. Areas that I once had little hope he would ever do this well. Socializing with other children, not family, is one. Overall picture of behavior at school, another. He is gaining academic skills, finally learing to read and actually made a year of progress last school year! Though he has moments of difficulty in all these areas, he is making friends, and is respectful in most cases. Unfortunately, when his moods are cycling, this is when I see some of the old attachment fears surface again. Like the boogeyman, they come to haunt this family and him. I think the thing I hate most about mental illness and prenatal brain damage, is that there is no cure, there is chance to have it all disappear and go away long term. Although this is a very manageable illness, you have to manage the symptoms. You have to always be aware of you child's mental state, and be proactive to avoid disaster. In other words, parents... mothers... I have to be hypervigilant, constantly measuring and evaluating the symptom load in the house and take appropriate action.

I ask myself, how is this different from parenting in general? Other parents are constantly doing the same, aren't they? And I guess the answer is yes, but the intensity level is different. The tolerance level is different. They may see a few of the behaviors we see, once in a while, but not constantly. It is this intensity, and frequency that is so wearing...

I am still hoping and praying that the Zonegran helps to level Dalton's moods. I can feel my interal voices telling me, that this is not nearly as bad as things have been in the past, what am I feeling so stressed over? Yet, the stress is palpable, all the same.

Dalton, aka "Beavis" got off to school this morning. Thank the Lord. He is not aggressive, he is not cursing, yet he is obstinate, oppositional, passive aggressive, which is in many ways more difficult to handle for me than the typical history of explosiveness and aggression. He refused to do his homework, but then as the timer went off that I had set to indicate the amount of time he had before the bus was to come, he got upset and shut down that he was going to do it, "If you touch it again, I'll break your neck!" He had pushed his meds across the table and kicked his shoes across the room, but I managed to cajole him into a smile and downing his meds. He got his shoes on in one minute flat, without untying them! He beat the timer by 4 seconds, with a "See, I beat you, so there!" Again, he refused to relinquish his paper to be put in his backpack as he was going to "Do it"... Asking me if he could go the toe Dollar store after school...

I had told him that, yes, he had earned a trip to the Dollar store, but to go on a specific day, he has to do what he has to do... He still gets the trip, but it will be on a day when he makes it through school without incident and gets his stuff done in time for the bus in the am. Yesterday he had a -10 pts on behavior for profanity in the last 30 min of the school day... Today, he did wasted his homework time with the oppositional behavior... I told him if he does well at school, we can do french fries at the McDonalds, but the store waits for another day. Of course, this was met with a "No, I won't!"

The bus had to wait for him to get moving from his shut down pout at the kitchen table, I managed to get him walking with a "threat" of discipline if I had to take him to school. He took 2 inch steps to the bus from the door to the yard, dropping his back pack every other step, but would not allow me to carry the pack... the bus drove away with him head hanging low, dejected, non-verbal, shut down...

I called his teacher to inform her of his moodines and hopefully, he will be able to have a good day. If they know what is going on, they can usually be proactive and he will pull out of it. I hope so. This is not a crisis, but is almost more tiring...

On a good note, he has poo'ed in the toilet twice, Saturday, and yesterday! typical of this mixed mood state... ups and downs. I need to focus on the ups, I know this, I know we will get through this... Fingers crossed and prayers lifted here that this will not take too long. I hate the way these times make me feel, and I feel so sorry for my baby. I just want to and I cannot. It is a powerless feeling.

I knowt hat removing the Topamax was for the best, there have been too many positives to think otherwise, but the process of finding something to handle the symptoms that this med was covering without pulling back the negatives it caused is a major PAIN!

Wish us luck and send the prayers for sanity...

Thanks for listening, if you got this far, I did not intend to be long-winded, but sometimes putting it in writing is therapeutic.

Posted by TwoSons at September 28, 2004 02:49 PM | TrackBack


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