Up, Up Up

Just thought I'd update.

The boys are both doing well in school and we're all keeping VERY busy.

Johnny is holding steady at his 10MG Focalin XR dose.  But Timmy has now been up'd to 20MG Focalin XR in the morning and 10MG Focalin in the afternoon.  This higher dose is definitely an improvement but isn't as great of coverage as we used to get.  It seems like this wears of quicker the more active he is as it must be metabolizing quicker.  So we might see some change as winter weather settles in.  For now he's pretty much living outside until he forced to come in. 

I also wanted to be sure to share something I learned this month.  We have had issues with our medical insurance and will be covering the cost of these prescriptions out of pocket for three months.  That is a HUGE amount for our budget.  But there are programs direct from the manufacturer that can help.  Check out sites like needymeds.org to see if the Rx you have has coupons or other programs to help you afford them.  For Focalin XR Novaris had $60 off coupons on line.  That was a big help for us and I just wanted to pass along the tip.

And another one makes 2

Yesterday we added a second son to the list of Dx'd kids in our household.  Johnny has been struggling a lot in school, not academically but listening and staying on task.  So after an evaluation the Dr agreed.  So today we began him on the same medicine (Focalin XR) that Timmy takes.  We're again starting on 5mg and will see how that does.  Yesterday I picked up his Rx as well as Timmy's refills.  Anyone who says medicating them is the easy way out obviously hasn't had to pay for these scripts!  But whatever it takes for them to have the best chance in school and in life, is worth it!!!

Ding, Ding Ding, Round Two

Well, it appears we'll be starting the process all over again...except this time with Johnny. Because his symptoms are different and in some cases less intense, its taken a bit longer to be sure it was time to investigate. But it was questioned 3 years ago when he was first tested for speech (but denied that time for speech therapy only to be approved the next time a year and half later). But honestly in the throws of the chaos Timmy created, Johnny's "energy" barely seemed noticeable.
However, as he's started school this year its become pretty undeniable. He was given time to settle into the expectations of class but still has MUCH difficulty staying seated when he's supposed to, waiting his turn to speak or simply staying on task. So I called for an appt. Of course now it'll be almost 2 months before we can even SEE the Dr. So likely we won't get him much, if any help this year. But hopefully we'll be able to get things working before he enters the higher expectations of 1st grade!

It would be amazing if the proper treatment could also help with his tantrums but I think that is an unrelated behavior issue. But I'm still HOPING since we've been as consistent with this issue as humanly possible but it continues to be an issue. Thankfully not on a hugely regular basis but when they do occur...MAN, LOOK OUT!!

Took Timmy in for his med check appt today.
He's back up 3 1/2 pounds so that made me feel better.

We've noticed that the afternoon dose has been doing very little if anything many days. So the Dr gave us a Rx for 60 of the 2.5's so that we can try doubling up but if we don't like what that does we don't have to go back and get another script we can just go back to one pill. I really can't express enough how much I love our Dr he has really made this as easy as he can. I know some people go through a lot to find something that works and part of it was just luck for us. But I love that the Dr really 1, trusts me and my input and 2, has Timmy's best interest in mind! He seems so genuinely thrilled to see how Timmy has grown!

Holding Steady

It's been awhile since I posted here so I thought I'd just give a quick update.

So far it's been a pretty good summer.  Mornings are a little rough sometimes a Timmy wakes up and is going at 90 mph when everyone else is barely moving.  But over all he's doing well.  I'm surprised he hasn't been willing to do much reading but when he does, he is doing really well.  For the most part he's out and going when he can.  He played TBall this summer (where they actually pitched most of the time) and did really well.  A complete 180 from the kid playing in the dirt all last year.  He did great on the field but I also noticed at their end of the year picnic/pool party he really is doing well making friends and getting to know other kids.  THAT makes me happier than anything!

He will be starting Cub Scouts which I think he'll really like.  Hopefully if all goes well he'll be going on his first overnight camp out with his dad and brother middle of August.  Hopefully that will be a chance to make some more good friends too.

Then school will start before we know it.  He will be in First Grade.  I will just keep my fingers crossed that they will be able to keep him challenged and not bored and that he has another amazing school year.

Afternoon dose

We have finally added an afternoon dose of Focalin. We're doing 2.5MG and it seems to be working for now. The difference in behavior seems to be becoming more pronounced so this really is a big help. It leaves us with about an hour of chaos at the end of the day. Of course the mornings are still very hard. At this point I'm thinking if I had something to take in the morning it might help. He just wakes up and is going on all 8 cylinders straight out of the gate. The rest of us simply don't function like that so it causes tension.
But like I said the behavior seems to be getting even worse when the meds have warn off so we really need to figure out where we can be getting some extra help there soon too. I really feel like we're pretty darn consistent and the issue isn't really anything horrible, its just a constant not listening and having fits when he doesn't get his way. He so obviously has a truly amazing heart but it is just very frustrating to feel like a 6 year old really wants to control our household and sometimes really can!

Spelling Check Up

Apparently they don't call spelling tests, spelling tests anymore but instead call them spelling checkups. Maybe they're less intimidating that way, I don't know. But Timmy had his first one this week. He did really well, I think. He got three wrong but 2 were words that weren't on their list for the week. Not sure if they were from weks prior that he hasn't been in this class for or if they were just bonus, can you figure it out thing. Ang then one he got wrong because despite him being able to tell you how it's spelled, he wrote a letter ('p') backwards so it was a ('q') so it was wrong.
He's still really struggling with a few letters in that way. So now I need to do some searching and see if this is still to be expected or if we should be looking into it further.

Not an academic death sentence

Ok so Timmy's only in Kindergarten, but still I am beyond thrilled with how well he's doing in school.  And I just want it to be encouragement to others that the DX of ADHD does not have to mean an academic death sentence.  I know that ADHD doesn't have anything to do with intelligence and I don't think most would argue with that but I DO think many assume that ADHD will equal poor school performance.  Again, I know we have many many years ahead of us and that the demands will get greater each year.  But today Timmy took his very first test during his time in the first grade class.  It was 34 questions where they had to listen to instructions and then fill in a bubble.  He got 7 wrong which did not sound overly impressive to me when he told me, despite how pleased he was with himself saying he did do well.  But I just got an email from the teacher and she said she does think he did "pretty amazing under the circumstances." And that only 6 other FIRST graders got less than 10 wrong with many getting as many as 20 wrong.

To me this sounds like the worst possible situation for a child with ADHD,  but he did great!

Parent Teacher Conference

I had my Timmy's parent/teachers conference last night and it couldn't have been better. His Kindergarten teacher basically said he's a joy and is doing so well, she's got nothing more she can teach him. He has been going to 1st grade for 2 hours a day since Christmas break and I got to meet that teacher. She too says he's doing great. He listens really well, and works independently. He is meeting or exceeding all the 1st grade "benchmarks" and is falling around the middle of her current class for everything. She said she isn't making any guesses at this point but will see how the rest of the year shakes out but she 'may' recommend that he be promoted up to 2nd for next year. But we may have a battle on our hands if that is her recommendations because no one even knows how they'd do it and the administration seems very leery of it. But she said if he doesn't skip to 2nd she will make sure he's in her 1st grade class so that we can be confident knowing he will be challenged at the level he needs. I have to say, for as much as I hate our district for so many reasons, I LOVE these two teachers and the ways they've really gone above and beyond to meet the needs of my child.

Makes a momma proud!!!

Same ole'

So we're back to our normal routine of 10mg of Focalin XR. It only last until about 3pm which makes homework and dinner interesting but at least all is well at school. Hopefully after the new year we can get to one of the Dr's our Ped referred us to to find something for the afternoon. But for now, I'll just enjoy not getting calls from school.

Daytrona a no go

Well, tomorrow we're going back on Focalin Xr 10mg.

The Daytrona not only didn't work for the ADHD symptoms but gave him a wicked evil mood. So after 7 days we're done with that. We've been referred to see a child psychologist(trist? I always forget) to see if they can figure out a way to get a longer coverage without adding issues. But for now I'll just be appreciating the 8 hours he can do so well for at school. Took a bit to get there though. I kept him home yesterday not wanting to send him with the patch again after knowing how badly things were going at school and then experiencing first hand over the weekend. But then he was better (mood wise) with just no meds so I sent him today since I still didn't have a new Rx but teacher said while he was in fact better today than last week it was still a rough day that included a few timeouts, which he hadn't had before switching off the Focalin.

Daytrona Day 2

Ok so we tried the 15mg of Focalin XR for a month. It seemed to do to him what everyone who opposes medicating claims happens. While he was still able to function etc he was very sluggish. It didn't give us any longer effects just made him look pathetically tired or sad all the time.

After much discussion, it was decided that there really wasn't a great option available for an afternoon short acting dose because Timmy can't yet swallow a pill. So as much as I was happy with the Focalin XR (at 10MG) and how well it worked with seemingly no side effects, we decided to go ahead and try something different. He is now using the Daytrona patch. It went on at 7:30am yesterday and we took it off at about 5:15pm and it seemed to wear off just a few minutes shy of the normal two hours. And he seemed to be no different going to sleep. So this may just be the answer. Now to just figure out two things: 1, how to get the stupid backing off the patch the right way and 2, how to get the patch off him at the end of the day without ripping off too many layers of skin.

Keep truckin'

So I am sort of a at a point lately where I just have to laugh at how it seems everything I do seems to be much more difficult than it needs to be. I didn't fill the Rx for the 15mg right away and then forgot until the day he had 1 pill left. I meant to take it to work that next day and have it filled for the next morning. But I left the paper sitting at home. So I took it that evening. Got there and as always they had me hold on while they checked to see if they had enough. They did. And just as she was about to tell me it'd be however many minutes, she noticed the date on it. It was 10 days old. And prescriptions are only good for 7! As one who's never really dealt with Rx on this level that was just not something that I knew because it was never necessary. So there I am at 6pm. And I am told I have to get a new Rx from his Dr. And because of the nature I have to pick up a paper copy of the Rx, from a Dr who closest office is about 30 minutes from the house...and he took the last dose that morning. I have to say I don't think I've ever had this thought before but I thought, well thank goodness he's sick. He had come home from school early that day because he felt bad and then threw up a few times. He was pretty much couch bound. So at least it wouldn't be going to school not medicated.
The next day I got the new Rx and filled it without issue.

So he's now been on the 15mg for a week but really was sick a better part of that time so I'm still not sure what the change is. I figure we'd give it this week before we judge but it seems like its still wearing off at about 3:30 but that he's just a bit more sluggish during the hours its working...

Another try

While things are going very well during the day 8-3 we'd really like to get a little more coverage to get us through evening. Since we have seen no side effects at the 10mg the Dr had us wait a moment while he went back and did some reading and decided that he'd recommend we try bumping up the morning dose of the long acting to see if that covers us longer. He think sit will work for now but that likely down the road he'll need an afternoon dose to get through the evening. But we have a Rx for 15mg and will see how that goes as soon as we're done with the 10mg we have. (Figured its not bad enough to waste the $$ or risk Insurance issues by filling the script too soon.)

So Proud

Just have to say I am so proud of Timmy. He brought home his first progress report last Friday and he is doing amazing. I couldn't be happier. I was not at all surprised that he'd be do fabulous in the academic side but even his behavior was nothing good news!!!!

Doing well...

...so far so good on the school front! Timmy is very proud of himself that he has not been sent to the principals office. I'm more proud that his teacher said he really hasn't been any trouble at all! He is so stinking smart and loving school. The only issue we've really had is that he gets very upset if we (tom and I) mess up and he doesn't have the stuff he needs for school when he needs it. For instance one day his backpack was in Tom's van and Tom was at work. Another time I didn't see why they'd sent a paper home to be signed and he was very upset when other kids returned theirs and he didn't have his.
We finally scheduled a meeting with Principal and his teacher (Oct 14th) but decided we'd not cal it an official 504 meeting just yet since he seems to be doing so well.
At home...a slightly different story. His meds wear off right at the end of the school day so we get the brunt of the fun shall we say. But I have to call the Dr tomorrow for a new months meds anyway and will talk about having a short acting script for when its necessary. Probably won't use it everyday but when we have stuff to do in the evening it would be nice to be able to have.

Week 3

This is Timmy's third week of school. So far we've been told only good things from his teacher!

The mornings are struggle and every day getting him to take his medication because more and more difficult. For the first few days of the higher dose (10mg) he seemed to be doing really well from about 8:30-3/3:30. But now on the days he's home all day I don't see much diffrence. ut the Dr asked me to wait at least another week and let him "settle into this dosage" before we make any decisions.

FYI

While I don't tend to share fincial info to often I felt that since I have talked about the very thorough evaluation that was done, maybe I should be forthright in including the cost of it.
I am actually not sure what the full amount billed was yet but know that our portion is just barely shy of $1400.

For other parents

I'm not sure if too many people will ever read this blog but I thought I'd post this, just in case, because it's on my heart.

If you are a parent of a child who you think may have ADHD please please please do not let anyone, including family or friends deter you from doing what you feel you should. I put off having Timmy evaluated for a long time because of whatever else said despite my very strong maternal instincts. I let people make me feel horrible, convincing me that the issues were solely the result of poor parenting and the issues that had occurred in our house. Now I will never deny that we have done some things wrong and that my kids have seen and know more than they should at this age, but I KNEW there was something more.
But having finally done what I felt I should I can't tell you how huge a relief it is to be validated. I know many people are against medicating kids, especially at a young age and I'm not here to say that every child with ADHD should or shouldn't be. But as someone who before having kids was one who shared the thought of so many that medicating parents were just lazy or whatever, I want people to know that it sooo sooo isn't the case. It's a gut wrenching decision parents have to make.
If you're in this position with a child you suspect has ADHD, please contact someone, get some support. I can't tell you how much better you will feel about yourself and your family if you do. Not saying that things will magically change instantly but having some answers and some support will help a ton!

Not soo long lasting

Ok, I'm not sure that we're getting the full long lasting hour we should be as he seemed to be pretty wound up by 3 yesterday but he was outside too...so we'll see if that's the real deal but it's definitely working for the morning and early afternoon. Yesterday, we went to lunch after I picked him up from school and it was almost like eating by myself, he sat quietly the whole time and colored and ate calmly. It's sort of weird honestly, but he's still got his quirkiness so it's not like he's the zombie my parents are so afraid we'll make him. But it is very drastically different.