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.

10mg

Saturday I called the Ped, as requested, let him know that beyond the first day 5mg didn't seem to make any real change. So he said double it up and try that for a few days. Yesterday he was awesome. His Sunday School teachers said he was very good. And he was very well behaved all day for a visit with Grandpa and Grandma Noel. We'll see how it goes for a couple more days and then call in to update the Ped. again.

Not sure

Well, Timmy's been on the Focalin for 2 full days now. It's hard for me to say if it's really working as it seems to be wearing off when I get home. But I 'think' its doing some good. I'll see more tomorrow when I'm home all day with him.

Rx Day One

We met with the Dr yesterday and he really was very encouraging. He said that if the Dx is accurate and complete (meaning that there isn't another issue that we haven't yet realized) we should see some results quickly. The decision on where to start with meds was made mostly because we don't know if he can swallow a pill. So we went with something we can "sprinkle" (that's the very technical medical term the Doc used). So he'll get his first dose of Focalin XR (5mg) this morning. He said we should see pretty much instant results. So I'm supposed to call him Friday or Saturday to see how it's going. The side effects we're watching for are appetite suppression, sleep problems and increased moodiness.

A little nervous

Tomorrow is our (new) appt with the ped to figure out where we are going to start with meds. But as much as I know we need to try and pray that we find something that works, I am getting more and more nervous because he seems to be getting more emotional lately on his own and I keep reading how so many have dealt with that as a side effect. He was never really a fit thrower when he was LITTLE and even until recently the only 'fits' he'd throw were usually when he required a time out. Over the last 8 months or so we've seen more aggression for sure but its just been the last month or so that I've seen weepiness. It breaks my heart because its not a nasty spoiled kid fit, it's heartbroken real tears emotion but just usually over small things or things we simply have no control over. He's always been overly sensitive for his age if you teased him but now the tears start flowing when something he deems as negative is said or you laugh at something he does thinking its cute but he didn't intend it to be funny.

We're still going to give it a whirl and hope that we can deal with the emotions if it helps him with the focus and lessens the hyperactivity.

one step forward...or not.

This week has been a REALLY rough one. I don't know what's up with both boys. They seem to have totally forgotten any rules we HAD gotten them listening to.
But today was supposed to be the day Timmy saw the Dr to discuss and start meds. But the psychologist didn't get the report to his Ped and the Ped's office didn't call to let me know this until an hour and half before the appt. As I always do I'll take the blame for it and say I know I should have followed up before today to make sure it got done but really can't I cut a break somewhere!?!?!? The new appointment is now for the 19th, that's 2 more stress filled weeks and gives us LESS than one week before school starts to get him started.
I'm really ready for a vaca...warm sand and cold umbrella drinks!!!!!!!!!!

One Fish Two Fish...

Ok I have no idea if this stuff comes from Red fish or Blue fish or if Dr Seuss knew anything about Omega 3 fatty acids. But I have read tons and tons of information saying that an Omega 3 supplement can help kids with ADHD. So I just ordered some of this to try. I will update when we receive it and see if he'll actually take it or if it tastes like sweaty socks! :)

follow me

Ok see if you follow me on this. The other day someone said to me that if they'd known that we were having Timmy evaluated they wouldn't have commented on his behavior awhile back because they "know how sensitive some people can be."
Now the original comment about his aggression issue was made a while ago and I was neither defensive or sensitive about it. His behavior is what it is, while a Dx may give us explanation it doesn't excuse unacceptable behavior.
But now I think I'm being overly sensitive about the fact that someone commented about being sensitive...because I don't think I was being overly sensitive! Anyone able to follow me on this? No, can't say I blame you! Sometimes I can totally see where Timmy gets some of his traits! :)

The Diagnosis

Well just got back from the follow up meeting with the psychologist and after 9 long hours of evaluation last week, Timmy received his official ADHD Dx today.
I now have to set an appointment with his pediatrician to start medication as the psychologist felt very strongly that they will help him immensely as he was also unofficially labeled as "gifted." She said the schools here don't recognize giftedness until usually second grade so we should bring him in again towards the end of first grade to be reevaluated but that at 5 1/2-6 they are most likely where they will remain and he is currently at the 95-98% for all but one academic test and the one he did poorly is one that she said is one that is a huge indicator of how he is affected by the ADHD.
Just hearing all this info makes me feel so much better, she confirmed every gut feeling I've had for so long but that everyone has tried to convince me otherwise.
So we will hopefully be starting meds before school starts and then she recommended setting up a meeting with his teacher for a couple weeks into the year to develop of 504 plan. So I need to get some info on that. but she said it basically means that we will write a list of accommodations to be made for him to help him stay focused, such as having him seated at the front of the room.
She also said he would actually be a good candidate to go straight to 1st grade but didn't know if that was an option but that he will definitely need extra enrichment to not be totally bored with kindergarten.


~~Update: His appt with the pediatrician is Aug 5th~~

Pre evaluation parent meeting

Last night I met with the Dr who will be evaluating Timmy, Dr Johnson. She was very nice and very thorough. She did confirm that some of the things Timmy is doing are a bit...beyond his years. For instance his need for acceptance and desire to be cool or fit in. She also mentioned that it sounded like he may in fact be gifted and that some of his issue could stem from that. When I first starting looking for help and direction with his behavior I found information that said that gifted kids have behaviors that often mimic ADHD but then things got worse and he got harder to control and I had sort of just forgot about that theory. So I'll be interested to see what all comes out of his eval. But we'll get hopefully some of our answers in three weeks.

in tears

Sunday morning was a rough on from the start but when we got to church it was horrible. Timmy would not listen or behave for anything. Even despite a few trips to the bathroom for correction.
I had to hold him firmly by the wrist/arm and he still flailed around like a nut, yelling that I was ripping his arm off and that I was going to pay for a new arm. A long time acquaintance came to talk to me and was obviously taken back by his behavior. I was so embarrassed that by the time we were able to get him to Sunday School I had to take a moment in the bathroom before entering service, where everyone was still able to tell I'd been crying.
But then we got home and with in a half hour his eyes got glassy and he had a fever. He has been down for 3 full days with a virus now and I'm guessing that played into the behavior. For as crazy as he can be this was over the top, even for him.

more and more

I swear there is more aggression everyday from Timmy.
Over the weekend a neighbor came over to play in our yard and Timmy kept punching AT, no real intent to hit him but still backing the kid through the yard with his punches in the air. And mind you this kid is several years older and a few inches bigger than he is. He is also a great Martial Arts student, so he COULD kick his butt if the kid chose to. But instead he's take Timmy down, pretty gently really and just sort of lay on him in an attempt to chill him out. After a coupe times of that Timmy got mad at tried to spit on him...so off to his room he went kicking and screaming.
Then yesterday was the first day of VBS and though I didn't see him the whole time when I did he didn't look like he was being very nice to his leaders. At the end of the day I asked and they confirmed that yes he was being very aggressive. I told them he would be talked to that night and given a bit of a chance the next day but if he continued I'd pull him out since they shouldn't have to deal with that. But they swore it wasn't that bad and not to pull him out over it. But Timmy was told this is what will happen so we'll see how today goes. I just HATE not being able to do whatever we want with him without worrying about him mistreating people. While he's been wound up and noisy for a long time this meanness is really a new things and is just killing me.

Another lovely day

OK so it really wasn't THAT bad, the house is still standing and every one's alive.
But the boys went to the sitter for the first time in a couple weeks and that meant they were up early! That ALWAYS makes for an even more exciting day. Timmy ended up in time-out at the sitter because she said he sort of just freaked out and was yelling and sort of thrashing around with toys in his hands. He said he didn't remember why he had done that. But she said he calmed down after a couple minutes in their time out spot and was fine the rest of the day. THANK GOD, because time outs at our house typically involve 5+ minutes of screaming and kicking the wall. Which did happen last night. They boys were fighting over a Spiderman mask and both became physically aggressive with pushing/shoving and solid punches and kicks being unleashed. So they BOTH got a 10 minutes time out in hopes of them calming down. It was extra fun since we had company. And at this point I don't have a place to separate them for time outs where they AND our stuff is safe so they both went into their beds, in the same room. Their issue was quickly resolved as they turned against me, a new common enemy. Once they'd done their time they were fine because their grampa took them outside to play.

Another rough weekend

It was another rough weekend in our house. The weather was nasty so we were stuck in doors a lot of it. Saturday we had an extra Tball practice. While Timmy refused to do the warm up exercises as he has at every practice he did OK the rest of the time. He's still diggin in the drit between each hit. It was really hot though and an extra long practice so I think he did well. The we went to see Tom's parents at his sisters house and I will say Timmy did pretty darn well there. And didn't drive us too crazy on the hour plus drive each way.
Sunday we went to church. His Sunday school teacher said he was good and he was busy coloring when I arrived to pick him up so I HOPE its the truth as we've had a few BAD days there too. But the rest of the day was pretty much a train wreck. They both seemed to have some cabin fever and Johnny was pushing some of his buttons too. But it was Timmy that ended up in a major time out for biting Johnny's leg hard enough to leave a good bruise.

some current struggles

Let me first start by saying that Timmy is an amazing child, he is upper intelligent, very thoughtful and wise beyond his years. It is not my intent to make it sound like he is a bad kid or that we do not love him with all our hearts. I don't know what I would do with out him, but most days ARE a mentally and physically exhausting struggle with him and I am simply attempting to document THOSE struggles here. All the great stuff in our family is recorded in my general personal blog....

Daily struggles:

• running in the house
• yelling and screaming in the house
• use of "potty" words
• being overly physical with Johnny while "playing"
• recently he has begun to raise his fists to me when I ask him to do something or stop doing something
• general listening/attention
• inability to sit calmly to eat a meal

Other issues:

Right now Timmy is very much into making and spending time with friends. As the weather warms and they get outside to play more he has gotten to know some neighborhood kids and begs to play with them daily. While this is a normal thing it is an additional burden as I have to worry about his behavior with other kids. The other night we went to the neighbors house to let all the kids play on their swing set. All was going well for a good amount of time until another neighbor boy came over with some sort of ribbon/award. The boy who's yard we were in had grabbed it and was running and try playing a sort of keep away game. His mother quickly put and end to it and had him give it back. But I think Timmy got caught up in it and in effort to feel included or liked by the boy who's yard we were in he grabbed the other boy by the back of his jacket and was dragging him around yelling for someone to "grab the treasure." Even though this boy was a bit taller than Timmy, he was being flung around somewhat like a rag doll. I immediately yelled for him to let him go but he didn't. So there I go running across the yard, 20 pound baby in hand yelling for him to let go. But he did not let go until I grabbed the hand that had a hold of the boys jacket. The poor boy looked like he was very close to tears. I made Timmy apologize and the boy very kindly said he forgave him. But at that point I felt Timmy needed to go home. He however disagreed and I had to basically pull him across the alley screaming the whole way "I didn't know that would get me in trouble!" When we got in the house and I told him it looked like the boy was about to cry when I got to him I believe he felt truly sorry and had not ever intended to be being the bully that he was. But regardless, he had basically made me biggest worry a reality.

Background

Forgive me in advance as I'm sure this will be very lengthy...

Our journey began 5 and half years ago when Timmy was born. I was induced at 38 weeks because of high blood pressure but aside from that the labor and delivery went without incident and we had a beautiful healthy son. He as 9 pounds 6 ounces at birth. He was a pretty mild mannered baby. From very early on he preferred to be out and about with lots of activity and people over being at home and by 5 months old or so would rather be in his excersaucer or active somehow than be held unless he was tired. He was also a super smart guy. He learned to sign many signs well before he was a year old. And I often freaked people out, including my own mom by insisting he knew his shapes before a year as well and then proving it with the shapes from a shape sorter. Before 18 months he was speaking in short sentences that were clear enough for strangers to understand. Overall he was a delightful little guy to be around. He even handled the addition of his brother to the family when he was just 13 months old better than any mother could hope for. He was gentle and careful with the baby. He was patient enough to wait for a drink or snack or story until I was done feeding the baby almost every time. The only thing he did that anyone ever worried about was his humming. He would hum in a monotonous tone whenever he concentrated or was tired. We were asked many times about this by friends and family but with no other indications of an issue the Dr, though he'd never heard of it before said it was probably just something he did to soothe himself and not to worry about it.
Timmy continued to grow and learn at an amazing rate and even when he hit the terrible twos he was not terrible.
Unfortunately that next year would be a really hard one for all of us. Before he turned four he would endure the loss of his great grandmother, who until she became ill had been a very active part of his life; he watched his grandmother undergo chemo therapy while battling cancer for the second time; his older half brother moved with his mother over 1000 miles away; and he was subjected to the fighting and tension in our house as a result of drug and alcohol abuse and ultimately two separations before a reconciliation. All the while it was becoming more and more obvious that he was beyond the "normal" level of activity of a little boy. And he also became more unmanageable. While I pushed aside my concerns chalking it up to acting out because of circumstance things have only continued to worsen.
Currently Timmy is overly loud, almost ALWAYS, he still hums when he concentrates and while sometimes it appears he is aware of what he is doing and possibly just waiting for someone to comment on it, often times he seems to legitimately not be aware of it. He is also always on the move. He rarely walks anyway, he either runs skips or hops almost constantly. While he can stay focused on an activity he likes he is still almost always moving, it may just be a wiggly leg or a tapping finger but he is almost never at rest until he passes out at night. And when he crashes he crashes hard.
It wasn't until this last year that I've felt I could no longer push aside my concerns about his behavior. I started by speaking with his preschool teachers. They felt it was most likely not ADHD because his actions often seem willful and not uncontrollable as with ADHD, but they encouraged me to speak with my Dr if I was concerned. After doing a lot of research and talking to a LOT of people I really felt that I was right in that something was not right. I could for sure say he did or did not have ADHD but that SOMETHING was going on with him that he needed help with. So I called our Pediatrician. An appointment was set and we were mailed a package with questionnaires to fill out. There was one for my husband and I and one for his teachers. When I got the survey back from the teachers I cried as I read it. While I was not directly surprised by the issues he was having, it hurt to see that they were seeing that it was affecting his relationships with his classmates. To me there is only one goal in parenting and that is to raise a happy well adjusted child and it seemed something was missing the mark. When we met with the Dr I was worried that Timmy might act out of the norm for his considering it was the Drs office but as luck would have it, he very clearly demonstrated his true self by bouncing from place to place within the room the ENTIRE time. The Dr went over the surveys and told me that typically when they look at them they look for 6 affirmative answers in each area and while the one my husband and I completed had 9 his teachers only had 5. He felt that the discrepancy was most likely due to the small amount of time he was at school as opposed to home. But he asked that because of this AND his age that we have him evaluated by a psychologist. After attempting to have the evaluation done by our school district to no avail I contacted the Dr our pediatrician had referred us to and set up an evaluation.
I will meet with the Dr at the end of June for a pre eval meeting. And then she will meet with Timmy for 2 1/2hours three times in one week. This will be a comprehensive evaluation that will hopefully provide us with some solid answers and let me tell you it can not come too quickly.
We are currently really struggling to hold things together as Timmy continues to act out, we have a 4 month old very needy baby and in the midst of it all Johnny is fighting for attention.

My Purpose

My purpose for starting this blog is two fold. First I'd like to have a place to keep a record of the things I want to remember to be able to share in the evaluation process and hopefully be able to use to see an improvement in our situation at some point down the road.
But also I hope that at some point I will feel comfortable making it openly public and that it may help someone else going down our road feel like there are others out there that understand.
For all we hear about the increase in Dx for kids with ADHD and autism and the like it sure feels lonely when you're going through issues without answers and everyone and their uncle has some thoughts on what your doing wrong to have created the issues.