Tuesday, December 9, 2008

Sorry I've Been MIA

These past few weeks have been super busy with me getting sick (still am) and Marshall not sleeping (yeah, we're so tired). There is so much to tell but I don't think I can get it all written down while Marshall is on the potty. He's a darling little demanding one.

I decided to have our Pediatrician be in charge of medicating the boys. I've felt very uneasy with the choice of medications the ADHD doc prescribed and felt like we were getting nowhere. I felt like the ADHD doc didn't really know what he was doing with Marshall. He kept prescribing things that weren't working for Nathan either. So, I had a sit-down-and-chat appointment with the Ped last week. We talked for about 2 hrs. I let his nurse keep our file of medical tests and evals so she could scan it. It probably took them a few hours to get it all scanned in. He asked me to write up Marshall's history from birth to now, including meds we've tried and how they worked for him (or didn't work as the case may be.) I will post that in my next post so you can all read it if you want. It's long so it's up to you if you want to read it.

So the Pediatrician said that for Marshall, there is definitely some sort of problem there. He explained how with things like Autistic Spectrum, Bi-Polar, Oppositional Defiant Disorder (ODD) and other things like that have these gray areas. It would be like if you had a bunch of circles with the center parts connecting. (Am I making sense?) In the middle, where all these disorders connect, there are certain behaviors that can be due to bi-polar or autism. After looking at the list of behaviors Marshall has and how meds have affected him, the doctor said for now we can rule out Bi-Polar and ODD. The doc also said the other problem with finding a diagnosis for him is that we are probably dealing with 2 things. In fact, he's nearly 100 % sure this isn't just ADHD or JUST prematurity, or whatever. All roads keep leading us back to ADHD and Autistic Spectrum Disorder (ASD). So, for now that's the route we're taking. That's the roadmap we're going to try to follow in looking for ways to teach him and help him suceed in life. I love this doctor's outlook on diagnosis. He made sure it was CLEAR that a diagnosis IS NOT what Marshall is, rather than it is a problem he HAS. Marshall may have ADHD and Autism but HE is not Autistic. He is Marshall who has an ASD. This doctor is good. So for now, the doctor wants to work on one area of concern at a time. Since so much of our behaviors depend on sleep, that is the first area of concern he will be working on. So, Marshall's dose of Risperdal has been increased as has Clonidine and we're adding Melatonin at night. We're SO desperate for sleep. We're so exhausted. I think he's been sleeping worse since his blue rope lights burned out and my husband put a regular night light in his room. It casts shadows on his wall (he is on the bottom bunk of the bunk bed). I'm out of money so I'm hoping someone on Freecycle has some they don't mind giving up. It's a long shot I know, but when you're exhausted, what do you do?

He also said he thinks Nathan was on too high a dose of Concerta. He said just as there are gray areas on Autism and things of that nature, ADHD and Anxiety also overlap. Nathan has A LOT of anxiety and has for a long time. So, for now, Dr. C is decreasing the Concerta, adding Zoloft (because the straight anxiety meds weren't working at all!!) and taking away the Trazadone he was taking at night. Dr. C doesn't like Trazadone because it doesn't allow the child to be themselves. Now that Nathan is starting Zoloft, I need to make sure he and I are talking all the time. I have to keep track of how the meds are working for him and also keep track of his weight.

I'm overwhelmed. I'm sick with croup too. I don't know how I'm supposed to keep track of both of these boys but somehow, I will. I have to track their weight, what Marshall eats (or refuses to eat), do feeding therapy with Marshall, work on fine motor skills and attention with Marshall, talk to Nathan about how he's feeling, among other things. I'm also the Cubmaster (a big job) and am so busy but I will hang in there somehow.


Happy in Holland said...

It's good to hear from you again. I'm glad you've got a doctor who is helping and making good decisions for your boys. Hang in there. How many feet of rope light are you looking for? Is there anything special with them or are they just normal rope lights?

Nancy Brown said...

WOW. we had some nasty sleeping issues but figured them out and he sleeps like a charm. WE had to try so many things. I was exhausted for 2 years. I don't know how you do it.

Major hugs momma!!

Anita Nap said...

After I wrote this, I posted on Freecycle that I was desperate for some blue rope lights. I had 3 people offer some to me. I'm so blessed!!! I specifically requested blue because they are not as bright as white. They don't cast a shadow on his wall the way the regular night light does. I'm hoping going back to before change (oh how this boy HATES change!!!) will help. I'm so tired. He is four now and we're so tired of it all but we somehow get up again each morning and keep going.

tiptoe mama said...

several comments:
1) there is a reason why sleep deprivation is used as a form of torture. --it IS torture.
2) Isn't it so nice to finally feel like you're getting the right answers, from someone you can trust?
3) I can't blame you for being overwhelmed. If you weren't -- you wouldn't be human.
HANG IN THERE! lots of thoughts and prayers coming your way!