Sunday, December 20, 2009

My 5-Year-Old On Speed

I have been avoiding writing this post. But to many mothers of special needs children, this act is an important and eventful one. Once you start, it's like you are making a pot of soup that never tastes right. You keep adding salt, water, pepper and still it's not complete. Sometimes you throw everything out and start from scratch.

Two months ago, I started giving stimulants to my five year old child. He weighs less than 45 pounds. We had tried the non-stimulant kind last Spring. They didn't work.

Stimulants are essentially amphetamines, a.k.a. speed. How can I give speed to my five year old and still call myself a mother? Moreover, how does speed help a hyperactive child? It doesn't make any sense.

But it does. Speed helps you focus and have clarity and this is a skill he does not possess. He sometimes has such little control of his body. Once he has clarity, he can do so much.

He started a new school in September and even though it is a terrific school that really understands his needs, that doesn't mean he won't need medication there. This school is more challenging than his preschool because they do not use tokens and time-outs even though he is removed from activities when he can not control himself. There are also more children in the class and that is very stimulating but I think he's getting the same amount of attention he received when he was in a smaller class.

For a while, he was being removed so often during the day that he was missing reading and math. I knew we were headed this way and had been waiting for the right time. I even had the prescription filled. The pills had been sitting in my cabinet for two months.

After he started to miss reading and math, I thought about how Logan would be so much happier to be with his classmates than outside in the hallway with a beanbag and a teacher. We decided it was time. My husband wanted to wait until he turned 6 research studies begin on 6 year olds but that didn't make sense to me. I know he's still young but everyday counts. I want as many days in his five year old life to be happy ones.

On a Saturday, I gave him his medication, a couple of hours after breakfast because I forgot to give it to him after he ate. I waited for the skies to part and to see a changed boy but all he did was fall asleep.

I felt terrible. I called the doctor immediately. "He's breathing and not unconscious. He never takes naps and had a good night's rest the night before," I told her.

She told me that this happens sometimes. I just wondered how speed could make someone fall asleep. It's a mystery to me.

But we kept going at it and he never fell asleep again. We waited to hear good news from school since it would be during the day where we would see the changes.

The school reports were coming back better and better. There were questions as to what time the medication takes effect and how long it lasts. Then we started to wonder if increasing the medication would be helpful because the changes were not satisfactory to me so we increased the dosage.

Things did seem better but still, I wasn't happy. I felt I was getting the short end of the stick because he was at his best in school and then by the time he came home, he would not be able to control himself again. Because there are two hyperactive attention-seeking boys at home, I need to do homework time with Logan after dinner when my husband is home.

Ever do homework time with a child as he's coming off ADHD medication? Everything takes five times as long to do. Sometimes we get lucky and finish within a reasonable amount of time but sometimes it takes an hour to get through two worksheets.

"Logan, sit down."
"Logan, do you need to do a Time-In?" (not punishment like Time-Out)
"Logan, take your foot off me."
"Logan, don't chew your eraser."
"Logan, look at the words." (He sometimes reads the story using the pictures and his memory)

I digress. Back to medication.

We increased the dosage again because I wanted to see more effects at home however, now he is not eating so well. Now he's skipping snack on top of skipping lunch and he's never skipped snack before.

I remember when I was on stimulants. It felt more alert and focused but I had post-nasal drip from them. What an odd side-effect. Moreover, I too lost my appetite and for me that was a good thing but then I did develop headaches from not having eaten so I can imagine that he must feel side effects from not eating as well. Unluckily for me, the appetite loss disappeared and I went back to being a pig. Hopefully the appetite issue will go away for Logan.

Yesterday we spent most of the day at home and Logan learned how to play checkers better with Kai. He absolutely loves the rules and wants to do better all the time. I told my husband that he could attend to learning about checkers because of the increase in dosage. He disagreed saying that checkers calms him down. I think for Logan, attention calms him down. Being with someone and connecting with that person can calm him down. He can do things as long as you sit next to him. I think he was happy with himself that day as well. He even ate more. Mood is certainly important for building appetite I guess.

Now that he's off the GFCF diet (Spencer is still GF and a couple of other Fs), I look at his eyes and they have redness underneath. They never fully went away when he was seeing the DAN! doctor but I thought they had gotten better. Red circles under the eye are called allergy shiners and they are supposedly a result of food allergies and intolerances. Everytime I see those circles I feel like I made a mistake to quit the diet even though it was showing me no changes in behavior which was the main reason for embarking on he DAN! protocol.

Logan's eczema is back too but this could be because it's winter but it could also be due to the fact that I am giving him something that doesn't agree with him.

I'll never know what to believe. All I can do is what works for us and hope it is the right decision. I am still sad the GFCFSFEF, chocolate-F, many fruits-F, peas-F, and other-Fs diet didn't help him. (B12 shots and Low Dose Naltrexone included) Even though it killed me and really hurt my wallet, I was hoping it would heal him but now I am just stuck with treating symptoms.

Well there are still more therapies to try and when we become stabilized on medication, we can go back to trying new things. I would still like to try osteo-manipulative medicine which is like cranial sacral therapy but treats the whole body. Logan had a few treatments and towards the 4th or 5th treatment, he showed a great calmness after his sessions. He even verbalized his feelings by saying he was tired. I wonder if it was healing or symptom treating though... After a few hours, he was back to his old ping-pong self. Either way, I want to get on that doctor's table and have my nerves manipulated so that I can calm down too. I wonder how his work differers from a massage. He does feel tightness on his Logan's head which I found interesting. How do have tightness on your head?

I still want to try horseback riding therapy one day. I really wish I had the money to do this. I also plan on teaching him to swim better. Perhaps if he does it more often, he could heal himself, at least in terms of sensory processing.

Either way, now I join millions of mothers out there giving their children this sometimes frustrating medication as it certainly is no magic pill. I will hope and pray that I'm doing what is best for him. Even though he is good at reading and math. I don't want him to miss it. I just want him to be who he wants to be. I hope we are at the beginning of a journey with such an end goal.

When you are overweight like me, all you think about is how to get thinner but this year, I am stuck with trying to make my son gain weight. Last year, I was working on getting Spencer off a food strike too. Sometimes I wonder, if these are really my kids? If so, why won't they eat like me? I absolutely love food.

Anyway, these Strawz can increase their water and milk intake which I'm grateful for and for Spencer it helps to build up his oral motor skills which he really needs because his articulation is terrible. He talks a lot now but no one understands him.


Caeseria said...

My son doesn't articulate very well either, and he could drink ONLY through a straw for the longest time (so maybe those are the only muscles he's developed orally?) but I think now I'm going to get him a bunch of crazy straws for his Christmas stocking. Getting him to drink enough is pulling hen's teeth. I hadn't thought of that before.

Hartley said...

I hear what you are saying on the meds, and I want you to know that my 8.5 year old only weighs 50lbs. So I have been where you are.

And homework still looks like this:

Gabriel, focus on me.
What are you looking at?
Sit up.
Head up.
Look at the page.
Help me help you.
Don't break your pencil.
Even if you eat the lead, we will just get another pencil.
Don't throw that.
Do you need to stand?
Can you sit?
What should we do?
Do you need a break?
You are NOT supid.
You CAN do this.
I will HELP you.
Doing it YOUR way isn't working; can we at least try my way?

and on and on and on and on.

I'm with you sister!

Hope you have an enjoyable (or as close as possible!) holiday,

Penny Williams said...

"Once you start, it's like you are making a pot of soup that never tastes right. You keep adding salt, water, pepper and still it's not complete. Sometimes you throw everything out and start from scratch."

That is the best analogy for what it feels like give an ADHD child meds; and to parent an ADHD child in general. The best I've ever heard. You articulated exactly how I feel. We just threw ours out and started from scratch a few weeks ago. And it still doesn't "taste" quite right.

Still trying new things, on the meds and therapies fronts, and I know we'll find the right combo one day.

A plain bar of chocolate doesn't taste as good as a triple chocolate mousse torte, but I'd take it any day over a spoonful of baking cocoa. :)

Improvement, not perfection, right?

Karen said...

Thanks for sharing your journey. I have a 12 year old girl who sounds like your son. ;)

She has been on meds for awhile. Currently, Concerta...and we're going to try Daytrana patch over Christmas break. Just wanted to share what has worked with us for homework. Her Concerta has definitely worn off by the time school is out. She has a small dose of Ritalin given right after a snack when she gets home. The snack helps with the eating issue...and the Ritalin helps her calm down at home also.

I have always felt that home should be the place they can be comfortable to be themselves...and a small price to pay for better behavior at school and in public. However, meds (for her) help us all be in a better mood because when she controls herself I do better at controlling my reaction as well.

It can take awhile to find a good combination. Medicine is a tough decision to make. Best description I've heard? If a child is diabetic, we give them insulin. If a child has eye problems, they get glasses. You can't tell a person who needs crutches to walk to "just do better". Sometimes without medicine? That is what we're telling our ADHD kids....just do better.

People sometimes mention "med breaks" for school vacations, etc. Why should only school benefit from better behavior?

Of course, medicine is not the only answer, but part of a treatment plan.

I pray the best for your family. Keep us posted! :)

Karen said...

PS I check in on your blog occasionally. You may already know about or someone else may have passed on info, but I found great info through

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