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.
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!
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!
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.
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.
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
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
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.
If this is your first time reading our blog, here are a few things you may need to know...
This blog page is dedicated to informing our loved ones about our little Nicolas. It all began February 19th 2008. He was born a mere 6 lbs. 2 oz. and within 3 days dropped to 5 lbs. 8 oz. Initially Nicolas was diagnosed with Failure to Thrive and Reflux along with aspirating. He had a surgery at 7 weeks old to correct the reflux. They added a feeding tube at that time to prevent aspirating and improve weight gain as well. Once we checked out of Parkview North we began to see many specialists at Riley Children's Hospital in Indianapolis. After a few trips to Riley and several EEG's later he was diagnosed with Infantile Spasms...something he had been going through since 3 weeks old but was not diagnosed with until he was 6 months old. To try to rid Nicolas of these seizures, Jake and I gave him an inner muscular shot of a hormone steroid called ACTH. This medication dramatically improved his spasms to less than 1 a day. Before that, he would have 8-10 spasms a day. Due to the ACTH medication his immune system was affected and won't be back to normal until June of 2009. As of December 2008, Nicolas' MRI reported that he has a moderate thinning of the white matter that surrounds his brain which attributes to his delays in development. Doctors feel that all of Nicolas' symptoms are due to an underlying cause. Nicolas has gone through a great deal of tests in search of a cause and they have yet to determine what it is. Today Nicolas' weight and height are lining up with growth charts and his seizures are few. Through all of this, you wouldn't think anything has changed for our family. Not that this doesn't weigh heavy on us...it is challenging being patient with medical professionals and with a diagnosis. But through it all...we are so glad God gave him to us! We think he is incredible and love him dearly! With that I leave you this...read our blog so that you too can know more about Nicolas and our journey with him. Continue to pray for our family! Love, The Steins