Middle of Week Three - ACTH

WOW Long time coming.....things have been way hectic and finding time when I can stay awake and Daniel is sleeping is getting to be harder and harder!

Well, I thought it was a bit nasty being on the ACTH the first two weeks, but that did not prepare us for the first "wean". Monday was fine, we don't start the different dosage until Tuesday. This will be what we do every Tuesday for the next 4 weeks, we will lower Daniel's amount of ACTH (steroids) that he is getting. Right now we did the wean from .75ml to .50 ml per day. WOW and did the crankiness set in. It seems that nothing now a days is keeping him happy. Well with the exception of going for a walk in the stroller or sitting on my hip. Now neither of these things do I mind, except if its at 3 a.m. Lonnie doesn't take to well to us being out in the middle of the night for a walk! But today is slightly better so I am hoping that it will only be nasty on Tuesday and Wednesday of each week.

On a good note: Daniel started his new speech therapy. He is working on augmentative devices. He absolutely LOVES it so far, of course who wouldn't. His new therapist is excellent, there is a constant flow of activity and once she sees that he is not interested in something she makes him choose with pictures of "all done" or "more" then she will ask him if he'd like to play with .... and gives him choices with more pictures or switch buttons. But she always makes him pick the "yes" or "no" card. They sing songs, play on the computer, and use a lot of mack buttons with voice. Even if he just grunts, she always tells him I like your voice, or I heard that, thank you for using your big voice. The interaction is just great. So two days a week we do our Augmentative Therapy

All his therapies seem to be doing really well (thank you Ms. Anna). He is eating very good, still not up to the standard two year old eatings, but much better than before. There is a lot of tongue movement which is a must for speech and eating. So for now we are continuing to do that two days a week we are doing the Feeding Therapy. (if you check out the picture closely of Daniel in his creepster crawler, you'll see that even though he doesn't speak he is telling me what he thinks about being in there. Check out his hand!)

Now for the Physical Therapy, we are very fortunate to get 3 days of therapy a week and he is absolutely in LOVE with Ms. Carol. She always sings to him and gives him hugs and kisses, but keeps him very motivated. She is ALWAYS coming up with new things to try. Never a bore with her. But we hope she gets well soon, she hurt her vocal cords and can't talk for two weeks......so therapy sessions are a little quite right now with a lot of writing notes.

Occupational Therapy we get two days a week, Ms. Linda is awesome too. We re very blessed to have such good therapist that like Daniel and work well with him. For the last few weeks we've also had a student OT working with Daniel and Ms. Linda. Her name is Ms. KC. She is going to make a very good therapist one day. Daniel took a liking to her too. Seems Daniel takes a liking to all females!

He doesn't care much for the male Visiting Nurse that comes to our house once a week for the duration of ACTH. The man has never done anything, just Daniel didn't take a liking to him. LOL

His blood work, weight, blood pressure and temp. are still on the good side. Thank you God!

So we're doing ok. Here is a picture of Daniel this week. I think he looks the same but occasionally the cheeks look a little chubbier. And I know he feels like he weighs two tons!

No this picture aren't his real teeth, not a side effect of ACTH, just us playing and Daniel using his lips more. Its very therapeutic don't ya know! ;-)

Daniel needs a haircut! HINT HINT HINT to Aunt Aimee! by the way so does Daddy.

Our Friend Drew

If everyone could please pray for Drew.

He is Daniel's little friend who also has Infantile Spasms

and on ACTH. Unfortunately, this past week Drew got sick and his seizures are out of control. He is in the hospital in the ICU.

Say a little prayer for him please.

Beginning of Week Two -ACTH

Well I may have spoke too soon about no side effects.

Let me tell you a little about what sleep deprivation does to a person of my age.

1. blurred vision
2. decreased mental activity
3. headaches
4. memory loss
5. memory loss.....
6. irritability
7. slurred and/or non sensible speech
8. nausea
9. clinical depression
10. dark circles under the eyes
11. yawning

Those are to name just a few. That is what mine and Lonnie's days are.

Now Daniel, that is another issue....we have the energizer bunny over here. The energizer bunny on steroids. To give you a little clue as to what we are going through.

1. mood swings...One minute we are laughing, the next we have the biggest boo-boo lip known to man kind
2. Food....if he sees it he wants it. Not in a minute, not when its cooked or warmed up. But NOW
3. Oh you want me to do that? Well guess what......I AM NOT GOING TOO.
4. Don't sit me down. You hold me on your left hip so I can rest my sweet head on your shoulder....NO DIDN'T YOU HEAR ME??? I said YOUR LEFT HIP, what is wrong with you?? And don't you DARE think about sitting down. I want you to stand up and sway back and forth continuously for the next 4 hours. GOT IT??!?!
5. Sleep? What is that? give me a 30 second nap and BANG, I'm all set to go again. What are you waiting for start swaying......to the left........to the right......left, there you go, you got it!
6. Ah and a little bit of "Roid Rage" as Daddy calls it. We are into biting whoevers shoulder we are closest too.........and those baby chompers hurt!

Ah, so that is how are nights and our days seem to be going because two days ago I jinxed us and said at most everything was good. (Yes I'm slapping myself right now and banging my head on the keyboard!)

So far we don't see too much of a weight gain, only about 2 lbs since last week. Blood Pressure is 104/96 with arm flailing (first time it was done today it was 90/62 when he was sitting on my lap.) And he is still probably the only kid I know on ACTH that will smile!

As Clear As Day....Oliver

Aunt Aimee: "Daniel, is that Oliver?"

Daniel: "O-LIV-ER"

Three distinct syllables

Done! As clear as day, as God, Alex and Aunt Aimee are my witnesses.........

OLIVER
brought tears to my eyes!
Silly to some I know, but very sweet sounding to my ears.
Now if we can just get him to say it again!

Day Six -ACTH

Well we are ending day 6 of ACTH, and there are still seizures. Granted not as many, but they are still there.
We aren't really seeing any side effects yet besides he seems to be eating better.
He is sleeping well, and isn't cranky.........anymore than a "typical" 2 year old would be.

The only bad thing is of course that he is now a human pin cushion from getting all the shots.

All of the testing we are doing at home with the urine and stool are all coming up negative which is good. When the visiting nurse was here on Friday, she said his blood pressure was 102/69. This is a little higher then when we were in the hospital but she stated that it was within the range and not to worry about it. HA............worry? who me??? are you kidding? I don't worry about anything!

We Are On Day Two - ACTH mode

Well we survived the starting of ACTH. After many tests, questions and a tutorial of preparing the dose, meaning filling the syringe with the Acthar Gel. We were actually taught and practiced with saline solution. Kathy (the head neurology nurse) did the training, and we discussed that Lonnie would be the one to actual give the shots. So she had him do everything like it was the real thing and got the needle all ready and then she takes her lab coat off and says ok, lets do it. I immediately broke into a sweat! She was going to have Lonnie practice on her! She said well you don't think I'm going to let you do your first shot on Daniel! UGH. So Lonnie actually did it and did it well, she said it was fine. We'll have to check with her today and see if there is a bruise!:). So we survived that, I couldn't' even watch. She left extras for us to practice drawing up the medicine into the syringe making sure there were no bubbles. After she left, I actually did one and after a couple attempts I was able to give Lonnie a shot in his arm....I thought I was going to puke after that. I am such a wimp.

Daniel did cry when he got his first injection, but hopefully he'll get use to it and soon it won't be so bad. Lonnie did a really good job, but I suspect he was probably a bit nervous, not about the shot part, but afraid that he would hurt Daniel. There is definitely a difference also in how quickly you can push the meds into the leg. The Acthar is a gel so it takes longer because we are using a 25 gage needle on his leg which is fairly small, and pushing a gel through that little hole.

Kathy suggests that we don't give him his shots in any part of the house that he associated with being a happy place. So I start to think ok, we'll do it in the bathroom.....nope cause then when we go to potty train him he'll have a fear of the bathroom. Laundry Room.....oh great we're going to scar him forever and he'll use this as his excuse to never have to do laundry!!

He didn't seem to have any negative reaction to the shot, but again we are only day two and still haven't given the 2nd shot yet. We will eventually be giving it to him in the morning, they say this is the best time. SO, starting today, these are the following things we have to watch for because there are possibilities of having these issues.

• Elevated Blood Pressure- Must be checked twice per week.
• Glucose in urine - Must be checked daily
• Blood in the stool - Must be checked daily
• Enlarged heart (cardiomyopathy)- watch for fast breathing, difficulty breathing, or chest congestion.
• Signs of Infection - Fever over 100 degrees, signs of a cold
• Worsening or change in seizures, new type of seizures, change in level of alertness or responsiveness.

The following are expected side effects of ACTH therapy. They will get better as the therapy is discontinued.

• Increase appetite
• Weight gain - moon face
• Irritability
• Acne

Along with the ACTH shots that he will get daily he will also now start taking Zantec 2 times a day to help protect the stomach against gastrointestinal bleeding.

Daily at home we have to make sure Daniel has a low salt diet, keep a log of seizures, keep results of ALL test, weights, and blood pressures. We must check stool daily with a test called EZ Detect, check urine for glucose with test strips.

Weekly he must go the the doctor to get a blood pressure check, weight, and Labs (CBC, electrolytes and glucose)

IN 3 weeks we have another EEG, and in 4 weeks we have an Echocardiogram. We had all of this done prior to the start of ACTH for a baseline...these are to check to make sure that nothing has changed or gotten damaged.

That's where we are so far in our ACTH journey. By the way, ACTH is a natural formulation of the hormone corticotropin. This injection stimulates release of natural steroids produced by the body.

I'm sure no one at this point is running out and saying...."WOW, I want my kid on that medicine!" Its some scary crap, but hopefully it'll do what its meant to do. Only 41 more days to go.

Starting ACTH...Scary

Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways acknowledge him,

and he will direct your paths.
Proverbs 3, 5-6

I'm not a horribly religous person, but these gave me some comfort when I'm scared to death.

God grant me the serenity to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.
Living one day at a time; Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world as it is,

not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy

with HimForever in the next.

Amen.