Wednesday, October 14, 2009

since you asked....

I had a great comment/question from my A Day in the Life... post, so I thought I would answer it for all of you to see, just in case someone else was thinking something similar!

From a dear friend Traci:

"You are an AMAZING mother! It makes our routine look pretty easy! I have a question, what do you give him for his behavior? That is Ian's biggest challenge, and boy does it annoy me when people ask me about our parenting skills. Every child is a blessing from God and even in the hardest of days, I know you wouldn't trade it for the world. Bless you Gretchen! You are Awesome!"

First, thank you for your kind words Traci! They made my day!!

Second, the answer to Nathaniel's behavior medications is a little complicated, so I thought I would give you all the whole story behind it.

It was evident from early on (4 or 5 years old) that Nathaniel's behavioral problems were beyond simple parenting issues. I am NOT a perfect mother, BUT I AM a very educated one. And I happen to have TONS of parent training from the 4 or 5 years that we were SB969 Emergency Care Foster Parents. We have to have an insane amount of training to do that, and behavioral problems and or issues was the main focus of MANY of those trainings. But, no matter what great program or technique we used with Nathaniel there were still BIG issues with him. By the time that Nathaniel was in Kindergarten he was labeled or diagnosed with Oppositional Defiance Disorder AND Obsessive Compulsive Disorder. Whew. What a fun combination! :) This started our quest to finding a behavioral medication that would work for him.

Now I am NOT a parent that jumps first to medication for anything. I try MANY natural solutions first. But it was obvious that there was so much going on in Nathaniel's head that he could not sort through all of that to absorbs what we were trying to teach him. The thought of the doctor team and myself was that we would find a medication that would clear some of the white noise and fog in his mind and he would learn better. It seemed like a simple thought, but we were soon to learn that it was NOT simple at all. The medication that Nathaniel is on for his bladder control is the ONLY one on the market that is ok to use in children. We could not change that medication, and unfortunately is had many counter reactions with the behavioral medications that we tried.

This was a very long process for us. It would typically take 3 to 5 weeks for the medication to get fully in Nathaniel's system, then 4 to 12 more weeks of messing with dosage to see what was going on with any given medication. There was TONS of journaling and monitoring behaviors during that time. I don't remember ALL of the medications that we tried, but I do remember the frustration, teats and anger going through all of this. Some medications made him psycho right off the bat. Just plain crazy behavior, way crazier than his normal crazy behavior. Some medications gave him weird rashes because they interacted with something else that he was on. Then we had to figure out WHAT it was interacting with. Some medications made him sleep all day. Some made him stay up ALL the time. Some made him angry. Some made him cry all the time. It was mind boggling and frustrating. I remember so many times thinking "Are his behaviors worse than all of this? Or should I just deal with his regular behaviors?" We tried so many medications that I can't even remember them all. But I know that we tried all the "normal" ones, and some out there ones too. Nothing seemed to work for him with his other medically necessary medications.

After almost two solid years of trying everything I gave up. I was done driving to Templeton to see the doctor. I was done paying for all of this out of pocket since the ONLY doctor in the county that we were told would monitor this type of medication would not take private insurance or CCS or Medical. Tired of watching what all of these foreign chemicals were doing to my child. I just said stop. No more. We are done.

About six months after I gave up on the search we were back up at UCSF for Spina Bifida clinic. One of the pediatricians there had been following what we were doing came in to see us. She asked what he was on and how it was working. I remember telling her that we were done and it was working how it had to. Not really a positive answer, but what else could I say? She looked over his old charts. Asked a BUNCH of questions and finally said "He needs to be on Concerta, it will be a perfect match for him." But the problem was she could not prescribe it for him. There is regular monitoring that needs to be done every 8 to 10 weeks and she couldn't do it form 250 miles away. And it is a controlled substance so it is hard to have filled. That would have been problematic too. In her notes this doctor wrote that she thought he needed to be on this medication and that I would look into having it evaluated closer to home.

I came home and prayed about it. I really didn't feel that I heard a clear answer from the Lord. So I made a few phone calls. The doctor we had been seeing in Templeton was on sabbatical, so even if I could afford to go see her that wasn't an option. At our pediatricians office here I ran into the office guard dog over and over again. "no Gretchen, Doctor does not monitor that type of medication." And there seemed to be no place else to turn. So I thought, "Ok God, closed doors. I get it." and let go of the issue in my mind.

About two months latter Nathaniel was going through a bout of croup. He suffer from croup quiet a bit and it is pretty regular for us to be at the pediatricians office for steroids to treat it. On one this particular visit our FABULOUS doctor, Dr B, mentioned that he had just seen the note from clinic, and did we get Nathaniel on the Concerta? Well, no Dr B we did not, because you see no one wants to deal with my darling child and these drugs down here. Dr B asked a few questions, disappeared for a few minutes and came back in with a prescription for us. I was FLOORED.

You see God was hard at work behind the sense and I didn't even know it. Dr B TOTALLY gets how kids with chronic conditions get the run around in this county. It is so hard to find anyone willing to see them or treat them. He also is just a nice guy and cares about kids. Dr B fully admitted that he doesn't closely follow these types of medications and all of their uses. But he knew Concerta, he gets the risks involved with it, and he is great about asking questions when he needs to (no God complex with him!). His theory was that we needed to TRY the medication since the doctor at UCSF wanted us to, and he knew that he would be the only one willing to go down that road with us.

I walked out of that office with tears streaming down my face. I LOVE Dr B. I could not ask for a better pediatrician form my children. The tears turned to tears of frustration when I walked into the pharmacy. It seems that NONE of Nathaniel's insurances would cover the $300.00 per month prescription. I was heart broken. But I hit my knees, right there in the pharmacy, and asked God what I should do. My pharmacist (who I also LOVE) sat down and explained to me how Concerta works. It does not build up in the blood stream like the other medications that we had been using do. Which meant that we should know within a week if it was going to work for Nathaniel or not. My dear pharmacist sold us one weeks worth of medication to try.

And here is the totally amazing thing. We knew THE NEXT DAY that it was perfect. Nathaniel's eyes cleared, he was able to look at you and focus. His chronic fidgeting almost completely stopped. He started speaking clearer and more cohesive. It was totally amazing. I sent him to school without telling the teacher anything, I wanted her unbiased opinion of what was happening. At the end of the second day of school she called me. Her first question to me was "What are you doing different with Nathaniel? Because whatever it is DON'T STOP!" At school he focused in class, his writing became suddenly clearer, he grasped concepts in two days that they had been working on for months. The diffrence with the Concerta was night and day. It was like we finally found the key that unlocked Nathaniel's mind. What a gift!

So here we are, almost 2 full years latter, and it's still working great. Not that we haven't been through a trial or two... it took us a long time to learn to give Nathaniel the medication early enough in the morning that it wore off in time for him to eat in the evening. And it makes him not sleep too, so early morning really is the best time to give it to him. We have to physically pick up a paper prescription from the doctors office and carry it to the pharmacy every 30 days. And the $300.00 per month was a killer for a LONG time until Cen Cal took over Medical. The first time that I went to pick up the Concerta when Cen Cal took over my dear pharmacist handed me the bag with a BIG smile on his face. I was madly counting money tyring to make sure it was all there and he said "Guess what Gretchen, put it away. It's covered now." I was so overwhelmed I sat right down and cried. You don't know how much I gave up every month to make sure that Nathaniel had that medication, especially during those many months that I was the sole provider for my children. To know that I didn't have to choose between milk and Concerta, or the car payment and Concerta anymore was SUCH A BLESSING! And the great thing? The pharmacist cried with me! He knew how hard it was for me!

So that is the really long answer to say: "Traci, our magical answer for Nathaniel's behaviors is Concerta. But as much as I love it and it is the perfect medication for us, it may not be the perfect thing for Ian. Hang in there Sister, for the Lord has an answer for you guys!"