Tuesday, September 23, 2008

ACTH Day 7

I just gave Nicolas his 7th shot. He didn't cry but boy is he squirmy!  Every time we start to wipe his leg with alcohol he starts in with the squirming...it is so cute...even if we are about to give our child a shot!  Yesterday he had two spasms and none overnight.  During our Riley visit we found out that his blood pressure is still a little high.  Nicolas is now on a diuretic medication...since ACTH causes water retention, this will pull the extra water out so that there is less pressure.  We have to go see Dr. O'Brien (Pediatrician) on Wednesday to check and make sure his blood pressure is coming down.  Because of this medication we will have to watch Nicolas' potassium levels too.  If they drop we will add a potassium supplement to his list of medications.  I currently give him 6 in the morning, 1 in the afternoon, and 4 at night.  This morning he had a spasm at 8 am.  Today his Mema Marilyn is going to watch him while I go get a quick hair cut.  And later this afternoon his brother has his last cross country meet.  Garrett has to run a mile.  At the last race he came in 26th out of 60!  He is really loving this running stuff...must take after his Aunt Kimmy!  We are so proud of him and we will let you know how he does!  I've always considered myself so lucky when it came to having Garrett (and Nicolas too!)...but seeing him with Nicolas just melts my heart!  A couple weeks ago we were driving in the car and Nicolas needed to eat.  While Garrett fed him in the back seat, he talked so sweet to him.  Watching in my rear view mirror almost made me cry!  Not only am I lucky to have Garrett and Nicolas but they are lucky to have one another!  God is so good.

Have a great day!

Monday, September 22, 2008

ACTH Day 5

Sunday was much better!  He had moments of fussiness but he was not anywhere near as upset as he was the day before.  He is having a few spasms and some twitching daily but it is much less than before.  Today is day 6 of ACTH and Nicolas had physical therapy this morning.  She was excited!  Sue (the physical therapist) said she saw more movement today from him than she had seen from all his prior therapy visits combined!  Today is Nicolas' 1 week check-up at Riley.  Jake is in Chicago today so Nicolas and I will head down to Indy around 1.  

Nicolas is having his 1st spasm of the day right now (9:30 am).  So I will talk to you tomorrow! 

Sunday, September 21, 2008

ACTH Day 4

Friday night went wonderful...no spasms...and he didn't have any until 8 pm Saturday night!  The hard part yesterday was how irritable he was.  It was non stop from 12:30 pm to 1 am!  He started sounding hoarse sometime in the evening.  He seems so hungry but when we would feed him it didn't seem to help.  Rocking, music, vibrating chair, going for a walk,  even putting him down early...nothing seemed to help...so we called Riley and asked if we could give him Tylenol...and they said yes.  Shortly after that phone conversation he gave up and fell asleep so we held off on the Tylenol...But at 5:30 this morning he had another spasm and started getting fussy so i gave him some.  He had another spasm at 9am.  I gave him another dose of Tylenol at 9:30 and so far he seems pretty comfortable.  Lets hope that works!  He does have two teeth pushing through so we not really sure if its his teeth or the ACTH bugging him...or all of the above!

Saturday, September 20, 2008

ACTH Day 3

Well he had 3 clusters of spasms during day 3.  One at night and 2 during the day.  Usually he has 8-10 clusters a day!  We have even seen improvements in the twitching.  He definitely is getting hungrier and is telling us!  He gets fussy 45 minutes prior to feeding and sucks on his pacifier like crazy!  It is loud and hard smacking...think Maggie Simpson...and when nothing comes out of it, he gets frustrated!  He is bringing his fists up to his chest during his feeds too!  All this is very exciting and we hope it only continues to get better!  As far as the side effects go...we have seen an increase in appetite and he is irritable.  He seems to be irritable more during the evening.  His fussiness is fairly constant until we hook up his drip feed at night.  

It is good to know he is hungry!

Thursday, September 18, 2008

ACTH Day 2

Jake gave the second shot.  Nicolas seemed to cry a little more today.  Probably because his mommy is such a natural!  HA! Honestly, daddy did great.  We were discharged shortly after. The Neurologist stopped in before we left and mentioned Nicolas' blood pressure was a little elevated.  On Monday we are scheduled to go back to Riley for lab work for our 1 week follow-up and to have his blood pressure checked again.  Nicolas was wide awake from about 8:30 to 10:30 this morning.  He seems relaxed so far.  The first spasm we saw today was at noon on the way home.  Here is a picture of him today.  We will attach a new picture to every post so that you can see the weight gain. 

Wednesday, September 17, 2008


On Monday last week we contacted the Riley Neurology Department to inform them that Topamax was not working. On Tuesday we were told ACTH was our next move. So the nurse began making the arrangements through insurance and with a pharmacy that carries ACTH. I then took Nicolas to Parkview North so that he could have a Chest x-ray, blood and urine test. In order for Nicolas to take ACTH we had to prove he was a good candidate (i.e. not a diabetic, does not have high blood pressure, does not have an infection). Then yesterday I had to wait for UPS to deliver the medicine...apparently insurance wants you to sign for $84,000... This will last us three weeks. We will know if it works within 1-2 weeks. ACTH is a medicine given by injection (shot) in the child's leg. It is given at home once a day. If it does work, Nicolas will be on it for 9-10 weeks. Nicolas will be taking a high dose and along with that comes the following side effects...
  • Increased chance for infection
  • Thrush of mouth
  • Diaper rash
  • Increased appetite
  • Water retention ("chubby cheeks"...as if he needed help in this department)
  • Stomach irritation (He is back on Zantac for this reason)
  • Increased blood pressure
  • Fussy or irritable
  • Rash on face
  • Electrolyte imbalance
Because of the side effects, once a week Nicolas will have lab work. The 1st week is at Riley, 2nd and 3rd week can be done in Fort Wayne, and then the 4th week (if ACTH is working) Nicolas will have another eeg along with the lab work at Riley. As of today Jake, Nicolas, and I checked into Riley to be taught how to give the shot. Nicolas had been really good about getting his immunizations so I thought...piece of cake, right!?! Well I just gave him his first dose. He did great...I cried. No turning back now! We pray for his health and healing.

Lord, hear our prayers...