Our Experience with ACTH

I thought I would share our experience with ACTH because everyone's is so different. It truly effects everyone different. When Aiden was first diagnosed with Infantile Spasms I read about the side effects ACTH. I was scared! I basically thought I would have a fat, unhappy baby who moaned and fussed all the time. It also said that he may stop smiling, making eye contact and playing. I read that he might not sleep and that is was going to be a very long 12 weeks.

Thank God, Aiden has had a very, easy time so far on ACTH. I thought I would share our experience to help other parents who are going through this.

Adrenocorticotropic hormone (ACTH), or corticotropin, is a hormone that is produced in and released from the pituitary gland. ACTH is normally released from the pituitary in response to stimulation with corticotropin-releasing hormone (CRH), a hormone produced in the hypothalamic region of the brain during various types of stress or pain. The principal action of ACTH is to stimulate the synthesis and release of steroid hormones from the adrenal glands, which lie on the surface of the kidneys. ACTH is the principal modulator of cortisol, the most important steroid hormone in man.

Here are some common side effects of ACTH, followed by how Aiden handled them.

 Serious, disfiguring weight gain, especially in the face

Aiden gained one pound while in the hospital. Maybe a pound and a half. I did have to buy a few more outfits, but it really wasn't as bad as I expected. His cheeks and tummy got a little rounder. He lost one pound when we came home and four weeks later as gained one pound again.

Increased blood pressure

Aiden's blood pressure has remained exactly the same. It was monitored everyday for the last four weeks and will now only be checked once a week.

 Enlarged heart

I pray this doesn't happen. I have no clue how they check for this. I don't think it is very common.

The shakes

I have not experienced this. Maybe when he is completely weaned off of it. His bottom lip quivers from time to time, but I believe that is due to the other medication he is on, Topamax. Topamax makes it hard for babies to regulate their own body temperature.

Constipation while on ACTH

Never a problem for Aiden

Sleep - expect Baby to sleep very, very, very little

Aiden is sleeping fairly well. He wakes a little more often to eat, but it is not that bad. He takes two long naps during the day (2-3 hours) and wakes 2-3 at night. Sometimes I get luckily and we get a long streach from 12:00-5:00. Its kinda like having a two month old baby again.

 Increased Appetite

Aiden ate a ton in the hospital. He was eating every 1 1/2 to 2 hours. Now that we are at home and have started the wean process he is back to normal. For being six months, I think he eats more at an 7-9 month old level. He is drinking between 20-35 ounces of formula a day (the normal is 24-32) and three meals of baby food a day (the normal six month old would eat maybe 2). He likes his food but it is not anything crazy!

 major reflux issues

Aiden has been prescribed a medication to help with reflux since he left the hospital so I have no idea if this effects him or not. I wasn't going to five him the medicine until it became a problem but I figured he had enough problems and didn't want to add an upset stomach to the list.

Anyway thank God Aiden has had such an easy time. I know that we still have about a month left and things can change. But I read so many horror stories out there that I wanted to share my positive experience. I know that I would do anything and go thru anything to stop the spasms. I know that most parents whose children have IS would do the same. I justed wanted to provide a positive outlook for parents who have read all the horror stories out there about ACTH.

The Diagnosis: Infantile Spasms

I have always thought that google was dangerous for parents. It is too easy to go online and look up some symptoms and find a very scary disease or disorder for your little one. The interenet is full of information but not all of it is accurate. When Aiden first started showing symptoms of what looked like seziures, I of course ran to the computer to find out what was wrong with my baby. Thinking it would be something simple and fixable. Nothing could be wrong with my baby, right?

Instead I found a horryifying disease called Infantile Spasms. The web was full of bad news. It is really tough reading things like, "Infantile spasms is one of the “catastrophic childhood epilepsies” or "Infantile spasms is associated with a significant risk of mortality and morbidity." This is devestating news to anyone, but when you read these words about your child your heart sinks. What was most devasting was that there seemed to be no hope and no good stories online. It was very depressing.


When our doctor told us that Aiden had Infantile Spasms he said that there were many reasons why children have seziures, but the most devasting is Infantile Spasms. Thanks doc for the optimism. Any parent of course hates when there child is hurt or suffering but it is extremely hard to know that you child may never get to live a normal life. My poor little Aiden was only five months old and you are telling me that this might be it for  him? That he may never walk or talk? 


Here is a little backgroud on Infantile Spasms:

Most infants with infantile spasms develop a pattern of movements called spasms, sometimes also referred to as epileptic spasms. The most common age for these spasms to begin is between 3 and 6 months of age. They can begin earlier than 3 months and sometimes begin after 12 months of age.

The spasms themselves only last a few seconds, usually only one or two seconds. Usually several spasms occur together in what is called a cluster. The infant usually appears to recover or relax between each spasm. There may only be a few spasms in a cluster or there may be many, even more than one hundred. Very occasionally, only one spasm will occur at a time. In between clusters of spasms many hours without spasms can occur. Occasionally more than a day will pass without a cluster of spasms.

Some infants may be at risk of slow development because of the condition already affecting the brain before the onset of spasms. But many parents notice that their infant behaves differently when the spasms start. Their child may loose interest in their surroundings, taking less notice of their parents. Some infants become irritable or drowsy. Parents often wonder what is happening because of this change in personality. But not all infants show this change. It used to be thought that infants had to suffer from this and from delayed development before doctors should use the name West syndrome. But it is not necessary for the infants to have abnormal development before calling the condition either infantile spasms or West syndrome. That is because some infants with infantile spasms will continue to have normal development.

Unfortunately, all infants with this condition have a high risk of having slow development after the spasms start.  Some infants will stop having the spasms and will go on to develop normally. It is because of the risk of poor development that doctors like to start treatment as quickly as possible. We are not certain that starting treatment quickly will help to protect infants from poor development.  We know that when the spasms stop quickly, the infant has a better chance of good development.

Sometimes the spasms disappear and are never seen again once the initial treatment works. Sometimes they disappear only to come back later. Usually this happens within 3 months but it can happen later. When they reappear, doctors call this a relapse. The spasms can be treated again and can still disappear once more. Relapse is disappointing but it may not be too serious if the spasms go away again with more or new treatment.

The spasms will have disappeared by the age of 14 months in about three quarters of infants with this disorder. After this age the spasms can still come back but this is not common. infantile spasms can continue through to school age if they do not respond to treatment but eventually they do stop on their own. Some infants will develop other types of seizure. The other types of seizure include drop attacks, tonic-clonic seizures, focal seizures, myoclonic seizures, absences or blank spells (but not usually typical absences). This can happen to any child with infantile spasms but it is most common in infants whose spasms do not stop easily.

Electroencephalography (EEG) is an essential component in the evaluation of epilepsy. The EEG provides important information about background EEG and epileptiform discharges and is required for the diagnosis of different disorders.

Following a seizure the EEG background may be slow. However, background EEG frequencies that are slower than normal for age usually suggest a symptomatic epilepsy (ie, epilepsy resulting from a brain injury or brain abnormaility). Normal background suggests primary epilepsy (ie, epilepsy where no cause is found or possibly genetic epilepsy). Thus, EEG background offers important prognostic and classification information.

Epilepsy syndromes include symptomatic, cryogenic, and idiopathic epilepsy. Symptomatic epilepsy is defined as seizures resulting from an identifiable cerebral disorder. Cryptogenic epilepsy consists of seizures that occur without an identifiable cause in a patient with cognitive impairment or with neurologic deficits (as in Infantile Spasms).

http://img.medscape.com/pi/emed/ckb/neurology/1134815-1138154-345tn.jpg

This picture shows an EEG demonstrating hypsarrhythmia in infantile spasms. Note the chaotic high-amplitude background.

http://epilepsy.med.nyu.edu/files/epilepsy/user-content/normalEEG.jpg

The above picture shows a normal eeg.

Our Story

My name is Jessica and I am mother to a beautiful little girl Taylor and a handsome little boy Aiden. I am married to my wonderful husband Mark and we live in Las Vegas, Nevada. I wanted to start this blog to share our journey with others who might be going through the same thing. Even though this blog will mostly be about Aiden's journey, it will of course also be about our family's entire journey.


Aiden was diagnosed with Infantile Spasms on Februrary 2nd 2012. Here is a little backgroud:


Wednesday January 25th started out like any normal day. Aiden was happy and his typical smilely, easy going baby. We recently introduced solid food and he was absolutely loving it, we couldn't feed him enough or fast enough. I was getting ready for work and put Aiden in his bouncer. He loves that thing and can bounce for an hour in it. When he's in it he doesn't stop moving or smiling. That's when I first noticed something was wrong. He was just standing in the bouncer not moving, not smiling, just staring. I called out to him and he didn't respond. After about a minute he started bouncing again. About three minutes later he stopped again and this time I noticed that his head would drop down and go back up. Kinda like he was falling asleep. I took him out of his bouncer and was holding him. All of a sudden he jerked foward, hands flew in the air and he had a weird look on his face. This happened three or so more times for about five minutes. It was like something had startled him three or four times in a row. That night it happened again. First thing in the morning I brought him in. The doctor seemed a little concerned but you could tell she didn't want to say too much just yet. She asked if I felt comfortable just watching for the weekend and then we would decide if we should go to a neurologist. I said I was fine with that since he was eating and sleeping and still happy the rest of the day. On Friday night Linda (my mother in law) said Aiden has about 20 of these "spells" in five minutes. Way more then normal. I called our pediatrician who said to bring him in first thing in the morning. Saturday morning at around 6:30 I was able to catch one of Aiden's spells on video camera. I was glad I had something to show the doctor. I showed the doctor the video and he said right away the he would need to refer ne to a pediatric neurologist. He said it looked like Infantile Spasms.