April 27, 2009

Troubles with Bones

Living with an ADHD child presents challenges that you can never anticipate. It's social as well as school.

ADHD children are different than other children. I joke that I can pick them out of a crowd.

I know... we are different as a family because of it. I know we have to work harder at things that others do not. The impulse control that Bones lacks, can get on people's nerves. I know where I can take him and where I cannot. His brothers get frustrated that he is always in their personal space, Ping, Ping, Ping, he never stops.

It would be easy if you could just tell him to stop, punish him, and set the limits, but with them... it doesn't work that way. As a dear friend of mine said to me once, "ADHD has always been around, they're the kids that used to get beat more than everyone else."

You keep that in mind when you have a child like that in your home. You provide structure, and guidance, teach them right from wrong, but don't want to squelch who they are and ruin them... as that happens to them as well.

Yell at them enough and they take it to heart. They don't get that what they do is not normal... it is normal to them. They don't get that how they are can be irritating... and so if you come down hard with them all the time, you end up with a child who will tell you they don't understand why they're so stupid or 'Why am I a bad kid?" Self esteem and worthlessness sets in.

It will break your heart.

We've been down that path.

When we were first told he had it, after spending a ton of money having him tested, it made us sick to medicate. I've written of it before. But we were already at the bottom of self esteem, his grades were failing, he wasn't learning, he was starting to not have friends, as much as everyone loved being around him.... he is a lot of boy.

He was the king of self loathing.

I hate that people in our society are quick to label parents as taking the easy way out for medicating. I hate more when I hear people say there is no such thing as ADHD. I want to scream at them, 'OH YEAH? Come live my F***ing life and then tell me there is not."

People are assholes.

Judgemental over what does not fit in their round hole of the world.

It is real and people don't get it until they live the life... the worry.

But since we started meds, our life changed nearly immediately. We had no side effects, his grades bounced immediately up to A's, and he was able to focus in class, as opposed to zoning out. (We do not medicate except for school hours... weekends and days off are not medicated.)

And ever since I've thought... at least we have the meds. Diet change doesn't work. Been there done that. Exercise doesn't work. Been there done that. Taking out red dye...nada. Been there done that.

You'd be amazed at what you will do to avoid the meds, all the crazy crap you'll buy into.

But as my pediatrician said, it changed our lives and we knew... the day would come where we would have to change his meds.

As a child grows, gets heavier, or a child starts getting into the hormone driven pre-teen and teen years, the same meds no longer work. Dosages have to change, all sorts of factors come into play.

We knew it was coming and I was avoiding it... even at the beginning of the year when our doctor said, "Bou, I cannot believe this is still effective. He's been on the same drug, coming up on 3 years. He doesn't weigh the same! He's gained 20 pounds!"

And I would reply, "Look, If I'm not getting phone calls, notes home, failing grades... we stay the course."

The last couple months we have noticed the grades slipping, the notes home, his self esteem taking a dive... all signs he was struggling in school. We changed his meds and didn't tell him, also adding for one week, an over the counter med to calm his stomach as he has started to dread school so much it was causing digestive issues.

I picked him up the day of, to find him pointing to his mouth, like that bunny in the Pixar animated film with the magician... the hungry bunny.

I looked at Bones, mouth open, pointing to his mouth, I imitated him. I mean, WTF?

I got out of the car and he said, "Mom, it's hard to breathe. You need to nebulize me and my stomach hurts. You said that medicine would make it better; it made it worse! And I have a bad bad headache."

I knew it would all wear off... with time. And it did.

I called our Pediatrician and he said, "No more meds... I don't like this. Take him for an EKG and let's just get everything checked out."

I learned that if you're an adult and need an EKG, you can wait weeks to see your internist. If you're a child, you just walk into the local Pede Cardiologist office and they give you one on the spot... like buying a cheeseburger.

Today we found out the EKG came back borderline. I said, "Borderline? Borderline... what?"

And he said, "Borderline... not normal. Look, I need you to make an appointment to see the cardiologist. We need to get to the bottom of this."

Aghast, I said, 'Did the meds cause this?" He said that no, it did not, he was born with it, but the increased dosage may have made it more prominent.

And so we are in limbo. No meds. Learning is a struggle. Behavior will be as well. I've already told his teachers. He's allowed to play all his sports (he is in soccer and lacrosse) unless his heart starts to race and then he is to stop.

His stamina has never been good... we are wondering if he has had issues and we never knew. We don't know.

He may never be able to do meds again... and the thought of that is daunting.

So that's what's been going on... or at least a small part of our iceberg of the last couple weeks. It's been very stressful.

On a positive note... as sick as a dog that I am, I still don't have swine flu. Heh.

Posted by Boudicca at April 27, 2009 09:35 PM

You had to dig pretty deep for the "positive note" there. Hang in there -- Bones will get better and you'll get to feeling better.

Posted by: Bob at April 27, 2009 10:00 PM

Bob- Yeah, this is just the tip of the iceberg of some of the crap going on here right now. My mantra the last two days has been, "I don't have swine flu. I don't have swine flu." Heh!

Posted by: Bou at April 27, 2009 10:03 PM

((Hugs)) I know how scary heart issues can be. It seems my whole family has hereditary heart issues. But, sometimes when things seem really scary, it turns out to be nothing. Always good to have everything check out though. I'll be sending all good thoughts and vibes your way.

Posted by: DogsDontPurr at April 27, 2009 10:41 PM

DogsDon'tPurr- Thank you. Deep down inside, I think nothing is wrong, however, if there is something not quite right, it sure would explain an awful lot of things I've seen with him... and wondered about.

Posted by: Bou at April 28, 2009 06:36 AM

Keeping a good thought for Bones! Hope it turns out to be nothing of concern and he can get back on the meds.

Hugs to you all...

Posted by: Pam at April 28, 2009 08:02 AM

I think I have mentioned this before but I have an arrythmia.

PSVT - paroxysmal supraventricular tachycardia

It basically means my hearts electrical system will at times just wack out and start beating fast/irregulary.

When it first did it I thought I was having a really bad asthma attack, I kept doing my inhaler (which was making it worse but I didn't know that) but it wasn't working. I also got a really bad upset stomach every time.

I was 28 and nobody would believe me what was happening, took 3 instances before they started testing. Got a diagnose right away once they did the tests.

PSVT basically means a pain in the ass. It's not dangerous or fatal. Once we got meds worked out correctly the only time I have problems now (knock on wood) is when I have more then 2 drinks or a couple of strong drinks or at the end of my period.

I have actually worked down to the lowest doseage possible and only take it every other day.

Although I can not have caffenne at all. (Chocolate is fine but not too much in one day).

Try cutting out everything caffenne if you hadn't already.

They said I probably had it at birth but something happened and it kicked it into existance (probably my arthritis)

The meds are bascially a adrenaline blocker because the PSVT is basically excessive adrenaline in my system.

I rambled on to say that most heart problems are just pains in the ass and manageable with little life adjustments and good meds but it might take awhile to find just the right med. Took me 3 times to find the right meds for me.

Posted by: Quality Weenie at April 28, 2009 08:20 AM

So in the mean time you're giving him all the cappuccino he wants? Our youngest really liked the bottled Starbucks version.

Caffeine is a marginal substitute. Look at all those engineers drinking Coke and Jolt.

So is Bones going to be another one with Atrial Fibrillation? My Dad lived with it for 4 dozen (or more) years before the ablation restored mostly normal sinus rhythm. He still has enough that he is a focus of student doctors when he is in the hospital so that they can hear the difference in the heart rhythm.

Posted by: The Thomas at April 28, 2009 09:52 AM

Yes, as a mother, you often "just know" when something is wrong or when it isn't. Even if it's just a feeling that things aren't right. They'll find it and then you'll be able to work from there. No point in trying to figure out how you'll live with various problems until they find out what the problem really is.

With my son - at about age 7 - he was struggling with migraines. The doc wanted to try Inderal (which didn't work BTW) which meant he needed an EKG. The EKG came back with rhythms that appeared to be an enlarge left ventricle... I'm listening to the doc and saying. WTF??? No, he does NOT have an enlarge ventricle. He has NO symptoms and has never displayed any behavior indicating any type of heart disease. EVER.

We still had to take him to a Pediatric Cardiologist who did an echo cardiogram and essentially told us... he has no heart problem. Well of course not... *sigh* Turns out it is just an anomaly within him. Possibly because at the time he had a very thin chest wall.

Thing is - I knew - just like I knew there was something wrong when he had strep but no fever or sore throat.

Your gut is a good thing to listen to with kids health. And they do eventually grow up and grow out of many things.

I'm sorry it's been so rough lately.

Posted by: Teresa at April 28, 2009 02:52 PM

Hugs and prayers to you in this situation. Y'all are great parents, and have what it takes to get Bones through this.

Posted by: Mrs. Who at April 28, 2009 08:08 PM


It is probably the change in meds.

As you know Little J and I are both ADHD. I had to come off the meds for Hypertension, but he is still on.

We had a similar bout with him, so we took him off of his meds for 3 months and then went back with the same dosage as before and got great results again.

With Summer rapidly approaching this may be something to think about.

ADHD can be a bitch, but it is also a blessing, not everyone fits in a box and it is for a reason.


PS Fluffy sucks

Posted by: P'cola Titan at April 28, 2009 09:06 PM

I'm thinking of you and hoping that all turns out well. BTW, I use an HMO. I needed an EKG to go to the DAV Winter Sports Clinic. Got it the same day I had the doctor sign the medical forms for me. No hassle. No wait. I can hardly wait for Obamacare!

Posted by: Denny at April 29, 2009 11:04 AM

Oh my, Bou - I am so sorry that you have to go through all of this. I hope that things get easier soon...

Posted by: Richmond at April 29, 2009 03:13 PM

Brave new world, that has made it illegal to beat our children into being good. As time goes on, I become more and more conservative. I would prefer home schooling.

Plenty of kids with bad grades become stars at college. Part of the problem before college is that they teach to the least common denominator. The result is that it is boring. So long as your children have a sense of competition, they should be able to pull it together when the going gets tough.

Posted by: Carl Brannen at April 29, 2009 07:05 PM

Late to this but prayers up for Bones from here.

Yanno, it's lucky that He is all knowing, as well as all powerful. Otherwise Heaven would be full of WTFs from all the prayers for the Blog knicknamed people.

Posted by: Peter at May 1, 2009 03:04 PM