Friday, August 20, 2010

New Meds = New Kid!!!!!

Any of you that have followed our blog for a while, know that we have struggled with Dakota.



Struggled with finding a happy medium for him, as well as for the family. We have tried so hard to get him into the right doctors and therapists, that are willing to help him find himself, as well as help me as a parent deal with his types of disabilities.



It's been a long hard road. He just turned 15, and we have NEVER found a perfect medication for him.



We've learned that stimulants do NOT work for him. He becomes extremely violent and anxious. We've learned that Lamictal causes him to have seizures. We've tried taking him off of medication completely. At which time he was nearly hospitalized. He has been on Risperdal for a VERY long time.



Like since he was 8.



He was on massive amounts of Risperdal. Our new therapist was so not happy with what he was on.



This therapist has listened. Really Listened to what we had to say. He has been interested in what every member of the family was experiencing in regards to Dakota's behaviors. I have explained to him how emotionally draining it is to me, knowing that I can't flip a switch and just make Dakota's life easier.



Because if I could, I would do it in a heart beat.



I've explained how heartbreaking it is to watch Dakota not be able to function with his brothers and sister. To not be able to take him to a big event, like a family reunion and just have a good time. Not getting over stimulated and ending up in a huge meltdown.



After our last session, when I explained the last few weeks, and the paranoia that he was having. The violent outbursts, the thinking that an event that happened over a year ago was happening right now, his therapist decided that the Risperdal was no longer working. (Not that it ever worked anyways.)



So we changed him to Trileptal. It's working. Like TOTALLY working. I have never seen this kid so stinking happy. He is functioning in a typical world. He is interacting with Rhett. Wanting to play with him, taking him on walks, playing games with him, loving him.



It's awesome.



I know it may not last forever. But thankfully he is mostly over his huge growth spurts. I mean the kid is 6ft tall. He can't possibly grow anymore, right?

For now, I am going to take and savor each day that is good. I don't know how long the good days will be here. Just like with Rhett, I don't know how long the healthy days will last. But I do know that these kids mean the world to me.

And I wouldn't trade them for anything.

5 comments:

Colleen said...

I'm happy for you and for Dakota that the new med is helping him so much more than any of the others were. I hope it continues forever! :)

stephanie said...

Pam that's great! it must be heart wrenching to see your son like that. I pray these new meds are the answer, for good!!!

Sara said...

You have probably already tried this, but your son sounded so much like mine I had to share just in case. I wish someone had told me this!

We were at this point with my son as well. He was not diagnosed yet, only because I had avoided it...but was really close to being diagnosed as bipolar or something along those lines. We removed gluten, which helped a little. (This was accidental, his sister has Celiac.)

We tried everything. I kept a detailed journal of behaviors and what he ate, drank, where he went, who he was with, how much he slept, the temperature outside, animals he was around, allergens outside, anything you can think of, we kept track of it. Then, tried to find similarities between the really bad days.

My kids get very little or no sugar.... no cold cereal, juice, desserts. Fruits and vegetables are about 50% of their diet. They don't even know what soda IS.

A few weeks ago my daughter got her hair cut and they gave the kids suckers. My son reacted very strongly. I thought it was the sugar.

Then he had some chocolate pudding and the reaction was the same. Yet, there was no sugar in the pudding.

Then he had pickles, yes, pickles and reacted violently. What do pickles have to do with suckers and pudding?

Then it was simply yogurt that he reacted to. I was totally confused.

I was very upset with myself because I could not figure out what all of the above had in common!

Then I got it, because the pickles have only a couple of things in them.

The suckers: Red dye #40.

The pudding: Red dye #40.

The pickles: Yellow dye #5 and #6.

The yogurt: Red dye #40 and Blue dye as well.

I thought I was nuts. Until I looked it up. Then I realized that about half - 2/3 of kids with ADHD don't need meds if dyes are eliminated. I also found out that the UK has banned dyes because of their risks.

I eliminated all of them completely and as long as he does not sneak something (the whole eating too much/stealing thing is a whole other issue) he is a completely different child...who would not qualify for an ADHD diagnosis, much less a bipolar one!

I know numerous kids who could benefit from their parents making an effort to eliminate dyes from their diet. But I don't know many that I actually thought might do it.

It's obvious that you would try anything when you need to. This would be something to research and file away in your file for "if the meds stop working again...." It would be fairly easy to try for two weeks and see if there is an improvement. I would honestly be stunned if there was not.

Walgreen's has all the dye free Children's medication. The company PureFun has dye free suckers, candy canes, cotton candy, etc. Whole Foods carries their stuff and also has fruit snacks. I am just amazed I didn't know about this sooner. I could kick myself....

I am thrilled Trileptal is working for him. Topamax and Tegretol are the other two we looked at. We didn't like Lamictal either. Topamax is wonderful for impulse control issues.

Sorry so long.... Good luck! :)

Sara said...

You have probably already tried this, but your son sounded so much like mine I had to share just in case. I wish someone had told me this!

We were at this point with my son as well. He was not diagnosed yet, only because I had avoided it...but was really close to being diagnosed as bipolar or something along those lines. We removed gluten, which helped a little. (This was accidental, his sister has Celiac.)

We tried everything. I kept a detailed journal of behaviors and what he ate, drank, where he went, who he was with, how much he slept, the temperature outside, animals he was around, allergens outside, anything you can think of, we kept track of it. Then, tried to find similarities between the really bad days.

My kids get very little or no sugar.... no cold cereal, juice, desserts. Fruits and vegetables are about 50% of their diet. They don't even know what soda IS.

A few weeks ago my daughter got her hair cut and they gave the kids suckers. My son reacted very strongly. I thought it was the sugar.

Then he had some chocolate pudding and the reaction was the same. Yet, there was no sugar in the pudding.

Then he had pickles, yes, pickles and reacted violently. What do pickles have to do with suckers and pudding?

Then it was simply yogurt that he reacted to. I was totally confused.

I was very upset with myself because I could not figure out what all of the above had in common!

Continued... sorry. lol

Sara said...

Continue from before...

Then I got it, because the pickles have only a couple of things in them.

The suckers: Red dye #40.

The pudding: Red dye #40.

The pickles: Yellow dye #5 and #6.

The yogurt: Red dye #40 and Blue dye as well.

I thought I was nuts. Until I looked it up. Then I realized that about half - 2/3 of kids with ADHD don't need meds if dyes are eliminated. I also found out that the UK has banned dyes because of their risks.

I eliminated all of them completely and as long as he does not sneak something (the whole eating too much/stealing thing is a whole other issue) he is a completely different child...who would not qualify for an ADHD diagnosis, much less a bipolar one!

I know numerous kids who could benefit from their parents making an effort to eliminate dyes from their diet. But I don't know many that I actually thought might do it. But this would be something to research and file away in your file for "if the meds stop working again...." It would be fairly easy to try for two weeks and see if there is an improvement. I would honestly be stunned if there was not.

Walgreen's has all the dye free Children's medication. The company PureFun has dye free suckers, candy canes, cotton candy, etc. Whole Foods carries their stuff and also has fruit snacks. I am just amazed I didn't know about this sooner. I could kick myself....

I am thrilled Trileptal is working for him. Topamax and Tegretol are the other two we looked at. We didn't like Lamictal either. Topamax is wonderful for impulse control issues.

Sorry so long.... Good luck! :)

Blog Widget by LinkWithin