Week 1 Clonidine --Joey

Doing a patch. Clonidine 0.1mg. It stays on (God, I pray!!) for a week. I put it on his back between his shoulder blades (where he can't reach) and I'll be checking for it daily, multiple times daily.

Night and Day

That is how Joey and Joshua are, night and day. Joshua is 5yr and takes his pills without a problem then goes and cleans his room and asks do the vacuum! He eats like a champ and is so easy to make a healthy meal.
Joey is 7yrs, fights tooth and nail not to take his meds, hates all healthy food and when I give him clean/folded clothes to put away instead of opening a drawer he "opens" the door and throws them behind the door.

I called and talked to the NP, apparently there is one non-stimulant med that comes in patch form...she's calling it in and we'll try it tonight! This either works or he goes off the pills and fails out if school. I can't keep fighting him and wasting money. It's not fair for the other kids to have a stressed out worn out mom who's fighting constantly with Joey.

Peace

3 of my boys sleeping. The only peace I seem to get now days is when they sleep.

Get me off this damn road!!

I'm so done here it's not funny. I don't want this, never did. I can't handle this crap and it's killing me. I'm miserable, my kids are miserable and I just can't do it anymore.

Joey absolutely refuses to take this medication. I sprinkled it on some toast this morning then buttered it. He tasted it and threw the toast on the floor so the dog or one of the other kids could get to it! I tried to bribe him and he can't be bribed. I'm at my wits end. I give up!

Josh is doing great on the meds, he really is. He swallows them like a pro. But when he's not getting his way and the meds have worn off OMG, who the hell is this child?

Jon, I think he needs meds more than the older two. He just will not stop all day long. He's going and going and going. Into everything. Screaming and hollering. In everyone's way and screaming while he's there and as he's being redirected else where. He's violent when he's not getting his way. He's 4yrs old and he bit Joey in the back over a blow up ring for the pool. He had 3 of them, stole one from Joey and as Joey's getting his back Jon bites him. WTF did I ever do to deserve this? I am honestly losing my mind, I'm shutting down and so very depressed...

Day 2

I want the medication IN him so I sprinkled it. I decided to make that as unpleasant as I could so I just poured it on a spoonful of scrambled eggs! He didn't like it but he took it. Hope he soon decides its better to just swallow it...

Day one of Strattera

Total bust!! He keeps putting it UNDER his tongue, crying saying he can't. Eventually the capsule broke open and made a mess versus getting into his system. Baby's therapist then showed up so I had to give up.  I think he's just refusing to take any meds what so ever. He's telling me I need to let him prove he doesn't need them. How do I do that when he's already proven he does need them??!!

Med change number 3 for Joey

Took Joey in today and told the NP that I wanted him off the moody tantrum meds. So we went back and forth between trying a low dose of adderall or Strattera. So I went with the Strattera. She was going to do twice a day adderall and I'm very against that if it's not necessary. So while the Stattera will take 6 weeks to get into his system. It gives me the opportunity to lie and bribe him to take it as a pill. So wish us luck!

Joey the pain

The other night I realized that Joey fell asleep before I could give him his night dose of meds. Then around 10pm he got up to use the bathroom and came to give me a hug and kiss. I utilized that time to give him his meds. I found it strange that he nursed that syringe of medicine...

The next morning I gave him his morning dose and he did his usual, he steps into the living room to watch TV and a second later he's handing me the empty syringe...

Hmmm, what's going on???

Upon investigation I find that little pain has been squirting the meds onto my carpet and not actually taking them!!! OMG!!!

Now my rule, which I apparently should have had in place from the beginning, is everyone takes any and all meds right there in front of me so I see them go in and go down.

Problem now, I lowered Joey from the 1mg back down to 0.5mg again and it's HORRIBLE for him. I can so see the difference from when he stopped taking the meds to going back on them. His personality off meds is awesome, the meds just need to focus him so he can pay attention. On the meds his personality is that of a weepy, whiny, 2yr old temper tantrumy kid. No one can life with his medicated personality, no one! Thank goodness we see the NP today for a med check. I'm going to have him taken off this one and we're going to try something new.

So angry!

Last night I forgot to give Joey his meds before he fell asleep. He woke up on his own around 10pm so I gave them to him then. It was a little strange that he was nursing that syringe when usually I had it to him and he's handing it back to me empty in a few seconds. This raised a huge red flag right away. So this morning I had him his meds and he does his usual steps into the living room and then hands me back an empty syringe! Come to find out that little boy has been spraying his meds on my floor instead of in his mouth!!!

I had titrated him up to 1mg twice a day and now I'm having to go back down to 0.50mg twice a day because I haven't a clue what THAT does for him versus the 1mg!!!  

Now what I do find strange, he's been hugely better with his attention... WHY???  I've gotten him to do his speech homework, with distractions around him and I've had to reel him back very little. I thought it was the meds but if he's been squirting them out then I'm totally confused!!!!

Rough Day

I'm really having a rough day today. The kids have been horrid. I woke up fine, had a headache shortly after and with the kids help it turned into a migraine.

I dropped Joey and Josh at school and went to the grocery store. Jackson (2yrs) was HORRIBLE the entire time with is yelling and screeching (his choice of communication unfortunately). I get a call from the pedi to discuss Josh's meds (I called him yesterday morning) so I'm trying to think and communicate in the middle of the grocery store with screaming baby and naughty 4yr old... About 30mins later the teacher is calling me to say that Josh is refusing to cooperate, to do anything, at school so she's sent him to the office. After I finished my shopping and got out to the car I called the office and bought Josh's good behavior for the last 30mins of the school day.

I go home to put away the groceries quickly and as I get back in the car the NP for Joey's meds is on the phone that Jon was playing with while I was busy. So I got his med refill called in. I did take meds for my raging migraine finally.

Go get Josh and came up with a plan for him. I'm really concerned about his unwillingness to transition 2hrs a day 2x a week when he has to go 7hrs a day 5 days a week come Sept 4th. After Joey is done with speech we get McD's for lunch and drive up to Milwaukee to pick up the Rx for Josh (Adderall) and go to the hospital pharmacy to have it filled and pick up Joey's.

The insurance doesn't want to pay for Joey's, it's 3 days too soon!! I have enough at home for 3 days but I don't want to have to drive up there again in 3 days when I'm there NOW. They do an override due to a dosage change. While I'm waiting my stomach is upset for some reason and I'm in and out of the bathroom 4 times. Finally get to the car with my 2 rx's and Jon is melting down for the 2000'th time. I sit there in the car, plug my ears and close my eyes. I open them and look at the very inviting edge of the parking structure and imagine the peace after I jump over it. Pull up my big girl panties and drive home. *sigh*

Put the kids in Joey's room to watch TV so I can lay down for a little bit. They let me have a 15min nap. I just want SLEEP right now!!!!  I keep thinking that others would think I am so stressed because I chose to have too many kids in too short a time span. However, I never in my wildest dreams thought I'd have 3 kids in less than 3 years all end up with ADHD!! That's a totally different scenario than just 3 kids in 3 years, or 4 kids in 4 years. If I knew then what I know now... I just don't know ...

Taking pills

Is going GREAT for Joshua!!! We did one capsule put back together, no problem. Practiced with a couple TicTac and no problem. Three days of one practice with the TicTac then success with the real pills!!! Yay Joshy!!!

Joey has been practicing but he's not there yet. He did it once but just can seem to do it again :(

Joshua Day 1 (vs 2.0)

This morning went WONDERFUL... I broke open his adderall and then put the empty capsule together. I showed him by taking my own morning medication, how to put the pill on his tongue and then drink it down. Stressed the no biting part. He had no issues. It took him a little longer to swallow (I remember that feeling, being scared to swallow the pill, what it might do to you if you did) but then he swallowed and drank more and voila, all gone!!!  He then ate the actual medication and we're all good!!!! I think I'll try a tic tac tomorrow and see how that goes :)


PS I also added .25cc of more meds for Joey today so he's at .75cc/mg...

Joshua medication check

We saw Joshua's child development pediatrician today. I told him about what I thought about the metadate, how it seems to be that a stimulant is the right thing for him but not sure about the actual metadate. How it's working sporadically, taking longer to take affect and varying as to when it wears off but that it's wearing off too soon to be good for homework when school starts.

Dr. S agreed with me and suggested that we try Adderall, find the right dose for him then switch over to Vyvanse which is supposed to (depending on the child) give up to about 12hrs! I give him one dose for a few days and if I feel it's not the right dose then give him two, do that for a few and go up to 3 maximum if necessary. We see the doctor again in a month.


So that's what we're going for now. He'll start the Adderall in the morning. I can sprinkle this  one but the Vyvanse he has to swallow. So tonight I came up with the plan to put the capsules back together for him to practice with and I also bought some Tic Tac's in case the capsule thing doesn't work.

OH he lost a pound, not a huge deal yet, but I need to watch and get him eating more so he doesn't lose more.

While I was there I also talked to the receptionist, who's very helpful, about getting Jon an evaluation. I called and got him registered so I should be able to schedule his appointments soon enough...  Praying this goes well tomorrow!!

Joey day 8 (vs 2.0)

Still up in the air about these meds. As previously stated we had a med error resulting in him getting too much. Now we're at the low dose where we were supposed to be and it's still making him quite tired and needing a nap daily (he doesn't fight the nap at all) but I am noticing some difference in his attending. He's doing his homework better. Still has times when he's not great about it but most of the other times he's good. Issue I see is the times he not great would be normal homework times (after school time) when the morning dose is wearing off and it's too soon for the new dose. So while I can get him to do some work it's more of the rush and frustration when it's not coming easily to him. That's not what I'm looking for.

I am noticing he and Josh getting along much better much more often. Jon seems to be left out due to his inattention and hyperness while Joey and Josh can play more mature type things. I don't know what to think right now.

Did I mention anywhere that my Joshua is a fish teaching himself to swim and Joey is starting to follow suit? They're learning how to kick and swim under water and everything!!! So cool!

Joshua Day 6

I have to stay that while I think a stimulant is the right direction for him (even if it's with something else too) the dose or med he's on now is NOT the right one. I do seem a tiny bit of improvement with him but it's sporadic. Some days it's like it take hours for it to start to take affect. Other days it's active right away but wears off fast (after just a few hours) and other days where it's perfect. I'm looking forward to the med check tomorrow and trying either a new dose or new drug or adding something with it.  I still can't get him to do ANYTHING homework related at home. 3 sight words max and out of those he knows 2 of them (last name and 'you'), he's working on 'we' but won't even look at the word to listen to me say it and help him with it and when I tried to add a new word on since he knows the two he got very angry and put off by it. So no this will NOT work once school starts.

Taking care of the youngest

I'm contemplating when to have Jon evaluated at Children's. His F!?king 3's have not slowed down. Jim is now as with the speech, that the kids have been negatively affected by his time in Iraq. They are starting to show that more babies born to Gulf War vets have birth defects such as webbed feet and hands. He wants me to search for learning disabilities and/or Speech and Language issues. So he's seeing, based off what he's read so far out of the ADHD: A Complete and Authoritative Guide from the AAP is that Jon has issues too.
The contemplation is when not if he goes in. I like the idea of him getting evaluated toward the end of the year or during summer so he can start the new year out fresh in school. If I call now we won't be done until after school starts, probably toward the beginning of 2nd quarter or so. (Josh eval was May, family meeting Aug, Joey was March with family meeting June) I'm out of commission for this type of stuff from the end of August to the middle of September providing my surgery doesn't have any complications...

In the mean time, today, I had my transition meeting with Early Intervention and the school system. This was to basically introduce Jackson's file to the school district and put them on notice to get their process of evaluations and the IEP going. It was determined that at the IEP meeting they will have the ST, OT and school psych there. I thought they said one other but I can't remember for the life of me whom. We're trying to schedule the meeting for the 10th of September. It's after my surgery and while Jim is still at home with me. Issue is 10am means if Jon is in the AM class he will need to be picked up during the middle of the meeting. It's his first day of school there so I don't want to miss it by having Jim just run and go get him. 1pm is Jackson's nap time so he's going to be too tired to cooperate and it might be just bad enough to have to reschedule him :(  Im wondering if I can't get him in the week earlier but toward the end of the week. That will put me a little over a week post op but then Jon's not in school and we can schedule a morning appt so Jackson is his normal self for the evaluation.

Such stuff to have to consider!!

Whirlwind going on...

So I have both Joey and Joshua on meds. Wow!!!  First I'll start with Joey. His meds seemed to be helping but making him extremely tired and if he was very tired he was HORRIBLE! He was crabby and cranky and even got so mad at me that he called me a bitch when he didn't get his way! Today I called Children's and talked to them. Found out that he was on the wrong dose!!! The mix was to be 1mg/5ml and the pharmacy zmade it 1mg/1ml!!! So tonight he backed down to the proper dose and we'll see how that works for him!!!  Otherwise he's been great. I think his attention is better but he's still distracted. He is able to be put back on task, at least for a little bit after he is distracted. That's a bonus. We go in for a med check on July 19th.

Then there's Joshua. We doubled him to 20mg and it seems to be helping but ... when it wears off around 2-3pm he is HORRIBLE. Like he's worse than his normal before meds!!! I asked if we could give him like one more pill around 3ish (would be the time he's home from school) but was told that it would keep him up too late. So we have an appointment with the doctor on Thursday for a med check. Maybe change the med or add a short acting one for the afternoon. He will need something to keep him going after school so he can get work done.

And summer school. I'm really disappointed with the teacher. She is one I always loved. She was good with the kids and parents and seemed really dedicated. She had a long term sub position the beginning of the year and she was there until after 4:30pm most days still working on her classroom and grading and preping for the following day. I was so sad for her when she failed to get the job full time :(  However she's being a real pill with this summer school gig. I enrolled both boys in the reading program. Joshua is excelled academically, I wanted him to learn how to read. Now all of a sudden they produced a "getting ready for Kindergarten" class and want him in there with his same aged peers. The problem is he already knows his letters and letter sounds. He needs to now learn how to turn that knowledge into reading words. She is telling me he hasn't mastered his letters and letter sounds just because he's not doing it for her... all the while I'm telling her that we're working on the meds... give me fricking moment lady!!! I am very open and honest, I told them I called to ask the pedi if I could give Josh the meds that Joey couldn't take. We started with the one then I called again and was told to double it. She's asked me at least 3 times now if the doctor gave me permission to medicate him. Seriously? WTF? I want to say NO, I called, they said NO so I did it anyway. Shut the F up!!! What business is it of hers anyway to question me like that?

I told Sara at Children's this today and she was irritated for me. She said if I need something from them to prove that I'm doing all this under medical advise they'd be happy to provide it for me. Man I love Children's!!!

So my calendar is full of color with both boys from Green to red for Josh and Green to BLUE for Joey (green (good), yellow, red, blue (bad))...

Joshua Day 3

Gave Josh his first double dose (20mg) of the metadate this morning.

WOW

I can live with this kid. I've not had one single melt down or temper tantrum out of him today. He's not a zombie but wow, subdued is I think a perfect description. 

He's cooperative, not bugging anyone, not getting into anything. Just wonderful. I sure hope it continues.

I am a little concerned about his appetite. He's not eaten anything but candy yet today and it's noon...

Joey Day 1 (v 2.0)

I had a scare about the meds today. The pharmacy called me to tell me that they couldn't get the recipe for his meds, Children's Hospital compound pharmacy will not share their recipe!!!


I called the NP who wrote the script and waited for a call back. I proceeded to call Walgreen's compound pharmacy and they were no help. Called Walmart and they were less than helpful. Call the makers of the name brand drug and they were against it being made into a suspension!!! Finally the NP called back and she had no luck other than having Children's make it and they would next day it to me for $5. So I let them fill it and sent Jim over to pick it up after work. He decided that it was way too much of a hassle so next fill (if there is one) we will pay to have it shipped! LOL


So, Joey got his first dose tonight, closer to 8pm... fingers crossed we have a decent morning before it's completely worn off!!! We do just nights for 4 night then add a morning dose.


So far Joey has been the near perfect little boy I've always dreamed he'd be. He's being patient and kind. Not bugging his brothers. Doing what he's told with a few extra reminders. I was cleaning out my "craft" closet and usually he's so in my way I can't get anything done. He came by a few times but in no way was he his normal in the way self. This was much more what I'd call "normal" little boy behavior. Maybe with his full dose he'll be "normal" big guy!!!


He and I did this spin painting thing that grandma bought the boys years ago and we never opened. He was attentive and patient. He stopped when I said to stop and helped to put it away nicely. 


Between the two big boys change today .... I just might be able to like being a mom again!!!!

Day 2 -- Joshua

Well I don't think it's working :(
So disappointing.


Luckily he's got hyped up on it, it's just not having much if any affect on him. I'm going to give it another day since it's not a bad side affect like the doctor feared it would be. I'm not sure about today though because he went to bed too late last night (DADDY!) and then got up to change when he wet the bed (he insisted he could be dry all night, yeah right!) and I had to wake him to go to school this morning.


The teacher said he did ok for the first hour. At some point, Joey hit him for some reason so then all hell broke loose and Josh wouldn't let it go (he never does...) the last hour was touch and go.


The morning at home was horrible. Since getting home from school I've kept the kids separated to give me some peace. We're going to eat soon then they're all doing down for naps! (me too!!)


Hoping and praying that Joey's meds are ready today and I can start him tonight.


I had a FUBAR with Joey's meds so I ended up talking to the NP at the Children's Child Development Center. I mentioned to her about the meds not working on Josh and asked her to pass that on to the pedi. She called me back and told me to double the dose so tomorrow he's on 20mg of Metadate CD. Wish me luck....


The night continued to be pretty bad with some good moments. We had a good end of the day when I gave him some one on one time, we drew a picture together. He really loved that!!! He went to bed nicely...

Day 1 JOSHUA!!

When I first started this blog, I didn't know that I'd be adding on Joshua and meds so soon! I really never saw ADHD with him but there was definitely something. He was my most difficult child PERIOD! I didn't know what it was, figured it was bad parenting and that he was made to be an only or oldest child not the 2nd of 4! I always felt he was hurt that every time he'd look at me, Joey was there hanging on me. Like he never could have his momma unless he shared and that really pissed him off!


Speed up to today. I pick him up from summer school and am told he's not doing well. They apparently now have the "getting ready for kindergarten" but I have him in the reading class for K-2. He doesn't need the getting ready, he's totally ready. He's very advanced and about all he needs to start learning is reading. The rest will be review and then building on that. At his Kindergarten screening the only things he needed to work on were reading and money and money is a 3rd quarter skill in out school.


So anyway, today I'm being told he had no letter recognition. WHAT? OhMggggg!! He won't sit still for longer than 3 minutes. He's leaving the classroom and all he wants to do is play. By 9am he was telling them he wanted to be picked up now.


This kid LOVES school. Granted this is a new school and new kids but still, he'd get really pissy with me last year if I kept him home for some reason... until the end of the year. I was taking him to Children's to be evaluated, as a precaution (to make sure we didn't miss anything) really. His appointments were in the morning allowing him to attend school in the afternoon as usual. He would choose not to go all of a sudden. At his psych evaluation he was the poster child for hyperactivity. He couldn't stop moving or at least humming/singing for even a minute.


School only wants him to come now with the kindergartners 2 days a week instead of 4 days.


I got home and called the Child Development pediatrician and asked him if I could give Joshua the Metadate CD 10mg that Joey can't take. I know it's low dose and I figure if it doesn't work what's it going to hurt right? The pediatrician said go ahead, if it's not right it won't work and the worse result is I'll have a miserable moody child for the day (so what's new???) but he's not convenience that it will work. He thinks Joshua's problem is more of a mood disorder which can look like ADHD I guess. Personally I think if there's a mood disorder it will be in addition to the ADHD.


11:30am I gave him his first dose of metadate. I'm going to find him an assignment notebook or something for the teacher to mark down his behavior so I can reward him at home for good behavior. I'm also going to print up a special calendar/schedule for him like I did Joey to keep track of meds, behavior and trends.


Guess this ADHD lane is wider than I thought!!

Guanficine suspension is a PITA

Joey saw the nurse, Sara, today and had his blood pressure checked. BTW he's 48lbs!! BP was 92/54, perfect!!!
The Guanficine is apparently a tablet which can be crushed and given in say applesauce (he hate this way of taking meds) or can be compounded into a suspension (liquid). So that is the route we're going to try. It gives us more control over titration which is a good thing. This is the type of med that you have to wean off not just stop cold turkey.
I dropped off the Rx at CVS and right away I knew it was going to be an issue. The lady looked at me like I had two heads, one green and other purple. She made me wait a bit only to come back and tell me they can't fill it. What she meant is that they don't know how to fill it and don't know if they have the necessary components to compound it properly. But they can order it tomorrow... I worked in there that if they need the recipe they can call the compounding pharmacy at Children's for help.
I'm in with Jackson putting him to bed, it's nearly 9pm and CVS calls to say they called the pharmacy at Children's and they don't compound it there. Well they called, I think, the hospital pharmacy. That's not the compounding pharmacy! I gave them the number but unfortunately they closed at 6pm so now they can't call until tomorrow so anything they need to order won't be in until Thursday. So Thursday will now be what I will be calling Day 1 (vs 2.0)  ;)  Good thing I'm not in a hurry. Man I miss Walgreens :( Wish they'd make nice with ExpressScripts so we could use them again.

Happy 7th Birthday Joey!!!

So my big guy turned 7 on Friday. He had a great day, we all did. He got a new bike, 20", so it's a little big on him but the 16" was too small. His 16" will go to his younger brother who at 5 hasn't figured out how to pedal yet from lack of the ability to try!!  We went strawberry picking then my cousin bought us all lunch at Pizza Hut. Came home and took a rest then dinner at his favorite Red Robin!!!

My cousin doesn't get to see the kids much, most of our relationship is via the phone or email. She was impressed with how mature Joey seemed around his brothers. She would know, she's got 6 kids herself from 2yrs-9yrs of age. So I was shocked to hear that. Then again he has his maturity about him that shocks me because it's mixed into utter ADHD immaturity!!

He's been doing well at home as of late. The kids next door moved away and even though he didn't play with them all the time it was like because they were out he had to be too and then he'd want to run the neighborhood without permission. Now it's not so much and that's much better for me.

He started summer school today. The morning was rough, he didn't want me to leave. Josh is in class with him and he didn't like that idea. Who want's to be in school with your younger brother right? But I couldn't put Josh in any other class... it's a Reading class. He's got one of the awesome substitute teachers too, I just love Mrs. C!!  The principal had to walk him in so I could leave... when I picked him up all was good, they both had a good day.

Tomorrow he had summer school then speech right afterwards for 20mins. We'll come home and swim, eat lunch, rest time then up to Children's for a check of his blood pressure so we can get the Rx for his new med!!!!! I'm going to start it Wednesday right after summer school. Want to get it started sooner rather than later.

Musings

I borrowed the ADHD books from the library. I haven't gotten very far yet. First and foremost, I'm so dang tired, it's hard to keep my eyes open and not burning when I read. Second, the boys are home full time so who's got the time?! Third, I'm convinced that I have ADHD!! In the few 2 chapters it has been a lot of explanation of what ADHD is and what it isn't. I'm sad that I fit the bill so well and yet at the same time not completely shocked. I wish people had known about this years ago, maybe I'd be in a different place today. Better educated because I'd be more apt to pay attention to completing.

I'm not shocked because I've always had issues with school work. I was not stupid in any way. I always tested very well all through school. Even made the honor roll in the later primary years. I was so far ahead in Kindergarten that I was "set aside" while the teacher worked with the rest of the class. My mom always said that it was because of Kindergarten  that I became lazy with my school work. I always thought it was because I "knew it" already, why should I do the work? But then when I'd try to do the work I'd get it wrong.

Even a few years back, I was getting straight A's in nursing school prerequisites like Anatomy and Physiology. Then I'm in Colorado visiting my (army wife) friend while our husband are in Iraq. I'm helping her daughter do her anatomy homework, simple anatomy and it was so wrong it's not funny.

Today, as a wife and mother, I can't seem to get much done. I'm lucky to finish two tasks a day plus the necessary stuff (which I struggle with). I'm thinking it's because I'm exhausted and worn out and lazy. That's not it. I'm that whirlwind that goes through the house having to touch everything just to get one thing done.

I need to make breakfast. Well to make breakfast I need to do some dishes. To so the dishes I need to put away some dishes. So I start to put away and while I'm doing that I'm straightening out the cupboards. I find things that don't belong in the kitchen so I go put them away. Say I end up in the bathroom to put away a hairbrush. I set it on the counter while I straighten out the place it's supposed to go. While I'm doing that I should brush my hair. Well I need a hair thingy to put my hair up. There's none in there so I go look in my room. None in there so I go out to the living room. I find one in my purse. I notice a paper in my purse of an appointment I have to call and make so I pick up the phone and notice the time... too early. So I set that aside. Oh I should get dressed. Now the kids start screaming that they are hungry. I'm telling them to settle down and watch their show, I'm working on it. So I go to get dressed... I pick out half my outfit, I get undressed and now I've got to use the bathroom. I take my half outfit with me and get dressed after I use the bathroom. Kids are now bugging me more, they want drinks (yeah me too but not the kind they're asking for). So I tell them to find me some sippy cups and I'll fill them up. I go back to finish getting dressed and notice the fish, they need to be fed. The baby starts crying, Jonny took his toy away from him. I go break up the fight and realize I haven't changed the baby's diaper yet (PU!) I go look for a diaper and the wipes, might as well get him dressed while I have him undressed. I look for his clothes and find pants but where are all his shirts? ( maybe in the 5 baskets of clean clothes down in the laundry room??) So I change his diaper and put his pants on. Sippy cups start coming my way so I take them to the kitchen to fill them up (leaving the stinky diaper on the couch where I changed the stinky kid). I rinse them out and fill with water.

Ok so here I've not started breakfast, haven't washed a single dish, I'm half dressed as is the baby. Half the clean dishes are put away and it's an hour an a half since I started this whole endeavor!!  REALLY?

This can NOT be normal, it just can't :( And at this point I'm counting down the time to when I can lay down and take a nap, I'm utterly exhausted.

I used to do cross-stitch, I gave up because I could never finish a project...

Meeting at school....

Oh nuts, I had this almost complete and lost it :(  So here it goes again....

This morning I had the meeting at school to discuss the plan for Joey's next school year. I gave them a verbal summary of what the report from Children's said and the principal basically wrote down in simple terms, everything that the doctor put in her report as ways to help Joey. Yes it was that simple! Nothing she said was out of the ordinary so in my opinion shouldn't have been an issue no matter what and it wasn't. I really love my principal for this. I do realize from the depths of my being how lucky I am to have an awesome team at this school who has never given me any problems with giving Joey what he needs.

We discussed things to help him succeed academically from placement in the classroom to breaking down his work into chunks so he's not so overwhelmed. Discussed the use of one of those wobble seats and/or bands that they tie around the chair legs. Having him work one on one with the lady who offers the extra help at school (Mrs. A) and how to redirect him without singling him out. His teacher seems to be similar in nature to my good friend Nikki who's passion is the tough kids. She runs her room as if they all had ADHD or Autism which I think is GREAT. I was so happy to hear that by the end of the year he jumped up one more reading level! This is wonderful news. He spent a full year (and I mean 12 mos) at reading level B. Then from March to May he went to C and now D! He needed to be a solid C to pass onto 1st grade so being a slight step ahead is only going to benefit him. Mrs. A has done wonders with him and I'm so glad she's willing to work with him this summer. He will do summer school reading 2hrs a day, 4 days a week for 5 weeks then Mrs. A will work with him a couple hours a week until school starts.

Social-- I brought up my concern that he's not being supervised well enough in certain situations (ie lunch room and recess) and how he is not the kid that goes looking for trouble but he's sure to stare trouble in the eye when it finds him. So when he gets into trouble they are to take everyone into account for what happens as it's usually another kid teasing Joey. He's having issues recognizing teasing for fact too like when the boys this past year were teasing they were going to cut up Joey's coat. He took it seriously and felt his coat was in serious danger so he did what he had to to protect it. I have no problem with him paying his dues for knocking the kid's head into a table while trying to get past him but at the same time those boys, both of them, needed to be in just as much if not more trouble for teasing Joey like that. Know what I mean?  I also said I want it stressed to Joey that he talk to an adult when there's trouble and not react... thus the adults have to take his issues seriously. What sounds petty to you or I is serious stuff to Joey and the adults need to diffuse the situation.

Medical-- His teacher did notice quite a bit of PICA stuff going on but never brought it to my attention. So we addressed that and wrote in there his ability to snack or chew gum as a way to keep inappropriate objects out of his mouth.

At home-- The teacher uses a color chart for behavior. She had the kids write their color in their assignment notebooks each day so the parent knows how they're doing. She will also send home a note for RED or BLUE (GREEN and YELLOW are minor offences). So I will have a calendar/diary for this. He can color in the day with his color and I'll keep track of his meds (which ones, doses, changes etc...) along with vacations/days off so we might see some patterns to bad behaviors and as a way for me to reward him for his good behavior at school.

Speech-- he's all set up for his ESY speech help, 40mins a week. His ST is awesome, I so love her. She called today and asked if I could bring Joey to the dollar store tonight and have him pick out 5 items. He will earn those items by working hard for her over the summer. She is one awesome teacher who doesn't think about her schedule or unions or anything like that. She loves her speech kids and gives her all to them. I was going to buy Joey's $5 worth of stuff to save her from having to do it since she's doing it for all her kids... I think I offended her for wanting to buy it. These kids are truly in her heart. I will get her something nice at the end of the summer school session :)

So that's about it... Joey turns 7yrs old on Friday, Summer school starts on Monday, BP check on Tuesday and we can try the meds next Friday when he doesn't have any school. Praying it goes well!!

Official Diagnosis...

Yesterday morning was the parent meeting...


The child psychologist, speech pathologist and child development nurse practitioner all saw Joey and met with me and hubby.


It was found that Joey has made great gains over the past year in his speech and articulation. He is more "normal" with his speech than ever before. Yay Joey!!
His cognitive testing shows that he's a very solid average. This is wonderful news because last years testing he was low average to middle average so he's made some great gains in both beginning reading and math along with overall IQ type stuff.


The one area he was a high average was math. The average range is 90-109 and he scored 113!!! This was further qualified by his earning a gold medal for Math today in school! The gold medal can be earned by all but it requires the child to not only know the standards required for advancement but to go considerably above the standard (ie counting by ones to 120 is standard, counting over 200 is gold level. counting by twos to 20 is standard, counting by two's to 100 is gold standard etc.)


Behaviorally, this wasn't really discussed but was in the report it shows him Borderline (65-70) for Attention problems, and aggressive behavior and clinical (which means significant being >70) for social problems and rule-breaking behavior. I think that was based off my checklist for him.


Based on the teachers report the significant issues, in the clinical range was inattention and hyperactivity/impulsivity, borderline was rule-breaking behavior.


What I really appreciated with all this testing was that it wasn't just all numbers. She said the teacher didn't number things that horribly but would notate concerns and those were taken seriously as well. And even though I may score something higher or lower doesn't mean it was ignored if it wasn't totally in sync with other scores.


It was recommended that we talk to his school and seek out a 504 plan or OHI to his IEP.


She gave a general list of ideas to try help Joey succeed both at home and in the classroom. She suggested we parents read "Taking Charge of ADHD: The Authoritative Guide," by Russell Barkley and "ADHD: The Complete and Authoritative Guide," by the American Academy of Pediatrics. (I them both reserved at the library as I 'speak')


Now onto the "good" part :)  Medication. After the miserably failed attempt with the Metadate we're going to give Intuniv (guanfacine). We have an appointment for June 19th for a quick blood pressure check before we can start it. 


I have my SIT meeting at Joey's school on Tuesday, 8am...

Joshua evaluation and APD info

Yesterday Joshua had his speech evaluation at Children's. He did very well, his articulation is coming along and she said most of the errors are just 'clean up' at this point. The one thing he needed to work on was his concepts, especially the more advanced. He gets in and out or up and down but little trouble with front, middle, before and after etc. He was very hyper during the testing... I foresee ADHD in his future... However his attention is not lacking, it's just the hyperness. It's like he needs the movement and distraction to stay on task, it's like he's self medicating with the hyper movements???

She sent him over to the hospital clinics building for a quick hearing test. He's not had his hearing tested since he was an infant. He passed just fine though was difficult to get on task and keep there after 2hours of speech evaluation!

Before we left the speech evaluation I brought up (APD). So many people seem to be getting that diagnosis but  it's never been mentioned for my kids while they seem to fit the description very well.

According to the speech pathologist who was doing Josh's testing, APD is being misused 95% of the time! First off there are two APD's. APD is auditory as in hearing. It's when the physical function of the ear is not working properly. More like a hearing issue though NOT deaf in any way shape or form. That is the 5% of the correct diagnoses of APD. The other 95%, the misused ones, are apd (lower case) and it's NOT AUDITORY ISSUES it's issues with the child's inability to interpret speech because there is a speech and language developmental delay. My kids all fit the bill because of their speech delay, they have issues with bringing in all the info to their brain, interpreting it and using it properly whether it's following directions or answering or reacting appropriately. It is a SPEECH issue and is treated with speech therapy and totally workable just like any other speech kid.

Total sigh of relief there. Here I'm thinking that my kids are screwed with this speech thing plus an auditory issue that's different from being deaf and well they're just doomed for ever.... so NOT the case :)  So anyone with a kid with APD diagnosis, it's more likely than not that all that means is your child has a speech/language delay and will need speech therapy PERIOD. Not the end of the world by any stretch :)  Wonderful news  YAY!!!!

No Meds, decent behavior!

In one week I finally have my family meeting to discuss all of Joey's need and diagnosis'. I'm so excited to finally get to this point and get going on those meds, with the pediatrician he's seen, so we don't have to take these breaks with the doctor being on vacation anymore.

Joey's school play/musical was on Wednesday and I got a chance to have a quick chat with one of the ladies who works at the school. She's the one that does the kindergarten screening and works like a tutor in the school for kids who need some extra help. Joey has gotten to know her well. She's not  a master degree teacher but she's currently going to college for her teaching degree. She's also a mom with a son who is a handful but made the cutest little Tigger in the musical.

She told me that Joey's been working hard and making some good progress. She thinks that the reading program during summer school, since he's got to be there for his ESY speech therapy anyway, is a really good idea. The more reading help he gets the better. Then she's willing to tutor him after summer school lets out. So basically creating our own ESY for reading. So that is what I'm going to do. I am praying that by the time summer school starts the meds will be helping if not completely figured out so he can get the most out of the help!!

Last night I picked up his new desk. It was in my mom's basement, left by previous tenants. It's an elementary school desk, the type with the lift up lid. It's not in perfect shape but perfect for what Joey needs. I just need to lower the legs to make it shorter after I decide if I don't need a new chair for it instead. Not sure if Joey is too tall for the chair or too short for the desk.

On Groupon they have these removable chalkboard decals for like 50% off ($19-$29 regularly $56+). I'm trying to decide quickly which ones to get him. I like the circles thinking I could use them to put a few sight words or spelling words, right in front of him at his desk.... They have a cute dinosaur that's pretty large but I think the way I have the boys room set up with a chair rail would put that dinosaur too high to be useful or if I put it lower it's at major risk of being ripped off and torn up.  So many decisions all the time while raising kids!! It's exhausting!!

Day 4

Last night Joey went to be fairly decent. 4mg of melatonin, NO SODA, and he was asleep by 8pm. Only issue was his choice to sleep with mom on the couch and mom wasn't quite ready for bed at 7:30pm. Little brother Jon wanted to sleep with mom too so I managed to get both of them to settle down in the Living Room, turned off the lights and told them I'd join them later. By 8pm they were both snoring away :)

Both slept until about 6am so that was great too!!! Joey's all ready for school, an apple and half a bagel for breakfast and off we go! I hope he's as good at school today as he was at home yesterday afternoon seeing as there's no meds to help him.

Still have to decide if I want to give my intelligent child who chooses to not show his intelligence appropriately, a break from school by not deciding to send him to summer school OR send him for the whole thing which is 2hrs of Math (which he excels in so it would be fun and a good learning experience) and 2hrs of Reading (which he can use the help in though he's at an appropriate reading level for moving forward to 1st grade it's just the lowest you can be to move forward in this school). The kid has gone to school pretty much non-stop since the summer he turned 3yrs old.

Joshua my 5yr old passed his Kindergarten screening with flying colors. Getting ready for Kindergarten summer school is usually for kids who aren't quite 'there' yet but he's a really super shy kid so this might be a great help in transitioning him to the classroom and environment. Contemplating sending him just to get him out of the house!

Think Think Think!!!

The only person available at Children's today was the nurse practitioner and she was not comfortable doing anything so we're on hold with meds until the pediatrician comes back from vacation next week. Our family meeting is just 10 days away!!!!  On a good note he had a good day at school today, no phone calls at least!!

Day 3

NO MEDS TODAY!


Joey slept great last night with 4mg Melatonin in him. He would have slept later than he did if his brothers hadn't woken him (everyone) too early this morning (4am!!)


So far today, not quite 11:30am, and he's my normal Joey again. Motor mouth isn't running, he's not hopping all over the house or running all over the place. He's also not paying attention or listening well or keeping to the rules. The boundaries I placed outside are not being followed at all while they all were great with them Saturday and Sunday. The boys police each other but they follow Joey closely so if he wanders they will too.


Daddy didn't feed them breakfast (I tried to sleep in) and early lunch he had a cheese/mayo sandwich. But if you ask him he'll say he didn't have lunch! I just cleaned up lunch but he didn't have any, Oiy!


Well it's 7:20pm and he's had a very very good afternoon today. I get the feeling that all the hyperness from the past couple days wore him out. But, he also seemed to be trying hard to be good. While the morning was rough all afternoon was GREAT. He succeeded until the evening. He was back to his normal of wanting what he wants when he wants it and how he wants it or crying, temper tantrum and/or outright defiance pursues come 6pm.  


He ate a little better for dinner but not by much. Not much of an appetite I guess. I don't blame him, I don't have much of an appetite in 90 degree weather either. 


I really enjoyed him today though. He did so well following the rules. He was looking for constant validation of his good behavior too. He was often asking that he and Jack (his baby brother) were the best kids at the store or in the car etc... right?  So cute. 


Tomorrow I'll be calling the child developmental pediatrician for a new med...

Day 2

Last night was hell ROUGH. He didn't fall asleep until after midnight, a huge bowl of popcorn and cup of soda. I decided to try the soda as his mommy (me) and daddy are both reversely affected by caffeine, it relaxes us. I remember as a child not being able to fall asleep, going to the kitchen and pouring myself a little cup of Diet Pepsi. I'd go upstairs and fall right to sleep!  I don't know if it was coincidence for Joey or what but it worked. Diet Coke and 6mg of melatonin!!


He was bright eyed and bushy tailed at 6am this morning. I finally got up and gave him his dose of meds, in applesauce, at 7:20am. He ate some cereal and left over popcorn and before 8am was roaring to go outside to his friends house! He's now vacuuming the spilled left over popcorn off the couch and ottoman and watching Super Mario Bros on Netflix...


It's 9am and I got him to sit down and work on a Grade 1 workbook. He was printing some words when I noticed he wasn't writing his /u/ properly so he then did the /u/ sheet, finished the other sheet and asked if he could color. We found a rhyming sheet with -at and -et words and he did GREAT. He's reading much better than usual and worked those sheets with Joshua playing Wii and daddy picking up and vacuuming the house!! Attention is much better but now that he's taking a break he's demanding what he wants to do and throwing a temper tantrum when he can't have it. 


Around 11:30am he was helping me with the dishes when he stated that his heart hurt! I stayed calm and had him go lay down on my bed. I don't have a blood pressure cuff small enough for kids and don't know normal numbers anyway. I placed my hand over his heart and could feel everything going on, too many bumps/beats to count a pulse. I don't know if this is normal or not so best option I have is to take him up to the firestation which is 2 blocks from the house and have one of the paramedics check his pressure. Fireman Jeremy was happy to help out. Joey's pulse was 88 and his BP was 99/70 PERFECT. I don't know why his heart hurt but I know that it wasn't his pressure or rate. Maybe an irregular rate was occurring?  I will mention this to the pediatrician when I call. He also mentioned to me, and I don't recall if I wrote this yet or not, but that his head was hurting him yesterday. Like his whole brain was hurting. I'll be mentioning that as well though today he says his head is not hurting.


12:30pm I took him and his little brother Jon to the grocery store, he did a GREAT job.  Jonny wasn't so great and not interested in going to the next store so I took him and the groceries home and then Joey and I went to Michaels for some paint and stickers etc for finishing up his raingutter regatta for Tiger Scouts. The race is a week from today. He did an excellent job shopping with him but to be fair, shopping has never been an issue with him. We came home, had a late lunch and he is now in the little 12'x30" pool in our backyard. The biggest issues I have now is he is major motor mouth with no stopping and quite a bit more active in spite of his ability to concentrate better for longer periods. I'm pretty sure this isn't the right med for him but I'm more positive now than ever that he does indeed have ADHD!


He had some cereal for breakfast, not much. A hot dog on a bun, pickles and some chips/dip for lunch. He asked for two hot dogs but only ate one. He can have the other for dinner or he can have the grilled chicken I have marinating.

He didn't eat dinner, too busy playing outside with his friend. I'm so proud of him for being where he was supposed to be instead if two blocks over! He came home when I told him to. Got ready for bed. 4mg of melatonin and about 5oz of diet coke and he's sound asleep by 9pm!!!


Now the question is, knowing this is not the exact med for him, do I give it again tomorrow or give him nothing????

All about Joey

Joey was a trouble maker from 22 weeks gestation on. First he starts out by having an anterior placenta so I couldn't feel him move and kick like a "normal" pregnancy. Oh how difficult that was when he was my first successful pregnancy after 2 miscarriages. The Lovenox injections daily were working but why that darn placenta had to attach in that fashion I'll never know.

I was in nursing school and so stressed out about if I'd ever bring home a healthy baby that I was failing miserably, or so I thought. I couldn't take a test to save my life but I did so well I ended up getting a "B". I was however done with school. Couldn't take the stress of it all so I'll concentrate on my pregnancy and this little guy and go back l-a-t-e-r.

I kept working but WOW did I work with a bunch of selfish jerks. I usually couldn't get help with heavy lifting and I'm a go-getter so I'd do it myself. Ended up with an irritable uterus and a little spotting just to drive me nuts and take me to Labor and Delivery a couple times for observation.  Then at 30 weeks a growth ultrasound showed Joey was much smaller than they wanted to see so I'm out of work for the duration and on modified bedrest. I have to lay down twice a day on my left side for 2 hours to give him the optimum blood flow and do kick counts. Three times a week I went into the doctor for 2 non-stress tests and a biophysical profile with growth check.

I bought some preemie clothes for my soon to be "lucky to be 5pounds" baby boy... I went in on June 13, 2005 in the evening to be induced and I'll spare you the very long labor process but finally at 5:21pm on June 15, 2005 Joey came screaming into the world and into my arms. He was 6lbs 13oz and perfectly healthy.

He was physically advanced. He rolled late but was sitting unassisted at 3 months, crawled, scooted, walked the furniture and walked unassisted all earlier than "normal" As soon as he found his footing he was climbing to heights I'd have preferred he not reach! He was always into stuff and destructive (should have been my first sign).

He was late to talk. At about 18 months I started to worry that he didn't have the vocabulary he should have. He knew a couple words (never ma-ma, da-da, ball etc...), it would be strange words, but he kept it to a 5 word max. He'd learn a new word and one of his other words would be lost keeping it to 5 words only. So I talked to his pediatrician and he suggested we get an eval from Early Intervention. He started speech therapy just shy of his 2nd Birthday.

ST was only one hour every other week and didn't do a whole lot for him. He picked up a few things but to be honest I don't know if it was really the ST that did it or just was his time to pick it up. Anyway, just before his 3rd birthday he had his first IEP evaluation to determine services he'd get with the public school system.  While he was talking his articulation was horrible. So many sounds he didn't bother to say and instead used /d/ and /t/ in their place. His was like 25% to known people in a known context! They gave him ESY (extended school year) and he got like 6 week of transition classes over the summer. He transitioned into the classroom well and I was very thankful for that. He loved getting to ride the bus there and home again. School was going to be easy for this kid, no crying and screaming for mommy!!

September he started out in his Early Childhood classroom at our home school (Forest Park). He again transitioned well and behaved fairly well also. After a few rough patches and some quirks with his teacher he figured it all out and did well. Now I don't recall him doing ESY that following summer, probably a huge mistake. The following school year he was doing wonderfully. His vocabulary was finally age appropriate but his articulation and intelligibility was atrocious. He moved to a Speech impact class at Whittier and oh did he love this class room. It was taught by a ST who was also an elementary teacher. He was in more of a preschool classroom with a curriculum which focused on each child's speech needs. I really LOVED this teacher, she was awesome. He did great with her and by the end of the school year his articulation was a little better, his vocabulary was much better. However, I was able to get him accepted into a charter school in our system (it's a lottery process) and doing their kindergarten screening he was way behind so they recommended summer school, Getting ready for Kindergarten. Again his transition was wonderful. September he started Kindergarten with the WRONG teacher! She didn't know when she made all of her name plaques that we call him Joey when his legal name is James. He knew that James was a part of his name (we often call him Joey James) but he didn't take well to everything saying James and unknown people calling him James too. It was extremely stressful on him. He had an unnoticed and un-diagnosed (mild case) of PICA which this stress exacerbated. He was eating his clothes, plastic, crayons, glue, paper etc... After many requests by me and even a talk with the principal she finally in November changed his name plates to Joey. Too little too late. At October parent teacher conferences she says to me, "is THAT still a problem?"  Duh!!! OMG I wanted to slap the crap out of her!!

His speech therapist was wonderful, she immediately decided that 60mins a week was not enough and asked me if she could change his IEP to reflect 75mins a week instead. I could have kissed that woman! Of course it's OK!!

With his first report  progress card I knew I shouldn't have put him into Kindergarten as a young 5yr old. My friend Nikki who is an elementary teacher with a son the same age as mine told me it was not usually a good idea. Even as a teacher with a child excelling in academics, she was not putting her child in until he had a year more of maturity and growth. I should have listened to her! At the time I figured it was a good idea to get that education in there. How can more education hurt him right? I was WRONG!!

It was evident he was way too young, the maturity was NOT there. I wrote on the return envelope that I wanted a meeting with everyone who has contact with him, the school specialists, minus his special's teachers (gym, music, art). Apparently they don't actually read those envelopes (in spite of there being a line on there "if you want to set up a meeting to discuss or have comments about this report please write it on the back...") so it took until January until I finally got that meeting set up for February! By that time I was 99% sure I wanted him to repeat Kindergarten. The SIT meetings (student intervention something or the other) were for me to hear the experts (teacher, principal, special ed teacher, school psychologist) tell me why he should NOT repeat. At the same time I set up evaluations for him at Children's Hospital Child Development Center. I wanted to make sure we weren't missing anything, that there wasn't any ADD/ADHD or Autism spectrum, sensory, hearing etc...

The Psychiatrist was at first concerned about his attention but the speech pathologist and pediatrician thought it was much more normal little boy behavior.

To be continued...

Day 1

9:00am, Joey has his first dose of Metadate CD 10mg.


It's later than I wanted but my hubby let me sleep in. For some reason when I was ready to fall asleep last night, my 3 youngest decided it was time to get up! Yes at 4am I'm still up and kids are waking up.


Anyway, since this is the first day and I want to make sure that I keep track of how well these meds work I figured why not blog it. I write it down on a piece of paper and the kids will have it lost in no time flat.


So far, 9:20am and I don't see anything. This is a long acting, slow release, I hope it kicks in well within an hour so I can give it to him at 7am and he's ready to go come 8am and time for school to start.


It's a little after noon and he's more hyper than usual. He usually can watch TV 'quietly' but he's constantly up and down and he is literally bouncing when he walks and jumping when he's standing. I hope tomorrow is more 'normal' though I've got about 5 more hours of hyper child.


Around 3:20p I think he was coming down off the meds. I had a very weepy sensitive little boy who was NOT happy. That lasted about an hour the he seemed more normal but slightly calmer. He is wanting mommy attention. He's being very loving/clingy yet playing outside and following the rules! Following the rules is not normal at all. He's checking in regularly and patiently helping with dinner. He ate a decent dinner for him. He ate 1 1/2 Italian sausages. He's annoyingly talkative. LOTS to say and seeking validation for what he's saying.

It's now almost 8:30pm, 4mg of melatonin are in and have been nearly an hour and not a yawn in sight! He is NOT tired at all. 


He did tell me a little while ago that when we laid down earlier for a nap he had a headache :(  Like his whole brain hurt. I don't like that side effect at all.


On a side note I increased his melatonin last night. He was getting usually 2mg but has had 3mg without much difference. So 4mg last night worked GREAT. He did get up early in the evening to move to the couch but slept well after that.


Some history as to why we got to this point to follow...