An Infantile Spasms Diary



December 19, 1992
Lucious Ellie, I have cried more in the last few days than I have ever cried before. I love you so much. I wish I could kiss you all better like I do with Tovah. We don't know what life is going to hold for you, or for us. Will you ever call me 'mommy' or take your first step? Every smile you give me is like gold. I learnt how to give you your shots today. I was scared.

December 20th, 1992
You had seven seizures today and every one worried me. I am supposed to check and make sure you don't stop breathing, G-d forbid. You hate seizures. You cry real tears that run down your face. You looked at your crib mobile a long time today.

December 24th, 1992
You sat for ten seconds. You lifted your head. You had lots of smiles.

December 30th, 1992
 Ellie, we are so scared.. you don't sleep anymore. Your cry is high-pitched and persistent, you whine all day. The seizures have still not stopped. You are getting puffy from the ACTH. You hate the shots even though I am getting better at them. I'm so exhausted. Why won't the seizures stop? Ellie, be OK, please.

January 27, 1993
We are in California. Today you reached for a toy and picked it up.

January 28, 1993
We saw the expert out here today. He really answered a lot of my questions. The doctor says you may fall into the sub-group of children who can have surgery. He is interested that you use your right side more than your left. Your EEG looks slightly better. The doctor decided to DOUBLE your dose of ACTH. We are going to get a CAT scan done and a PET scan to check for a seizure focal point. We are trying to rule out Tuberous Sclerosis as well. I miss Tovah dreadfully. The Jewish community here has helped me out tremendously. I am staying with a family whose child had infantile spasms and Down Syndrome. He is doing really well after being treated by the same doctor you are seeing.

Feb 1st, 1993
Yesterday you had more smiles than seizures. Today you only had three mild seizures. I'm too scared to hope. You are rolling back to side!! I miss Tovah. You now quiet when I pick you up and talk to you (you never did this before). I think you finally know me. You nurse all night. You look bad right now. You are very puffy and have terrible thrush all over your chin. Six weeks since you were diagnosed.

February 8th, 1993
Ellie had her PET scan today. While she was having it someone went into the emergency room next door and shot a doctor! WOW. Ellie has emotional outbursts due to the ACTH. I took Ellie to the supermarket today to get some diapers. She chose this time to have an 'emotional outburst'. She screamed at the top of her lungs and could not be consoled. Everyone was looking at me. One lady followed me around the store. I left Ellie at the end of one aisle and walked to get the diapers. The woman came over to Ellie and tried to sit her upright (impossible to do) and started talking with another woman about what a bad mother I was and started chastising me. I screamed at her to 'get her hands off my baby." I know she was convinced I was abusing my child. She had no right to judge by what she saw on the surface.

Thursday February 11th, 1993
CAT scan uneventful. Ellie woke up a whole hour earlier than predicted. Seems Chloral Hydrate doesn't work too well on her! I went to the neurology dept. of the hospital to see if I could talk to the doctor about his long-term plans and ended up crying in the office. Didn't see the doctor. I want to go home!

February 12th, 1993
Tovah and my mom are coming out here!! The doctor called. The PET scan revealed a 'hot spot'. Surgery may be a possibility.

February 18th, 1993
The doctor put Ellie on Tegretol, which sometimes works when there is a focal point.

March 7th, 1993
Ellie has been seizure-free for two weeks. The Tegretol worked fast. Ellie is a completely different baby. She kicks both legs, picks up toys, smiles all the time. Today she even lifted her hands to be picked up. She's now very content and calm.

March 10th, 1993
The doctor called, Ellie is not a candidate for surgery. He did tell me that since she is doing well on Tegretol, we can go home after she's weaned from the ACTH.. Ellie held a rattle in her hand today.

March 14th, 1993
Things Ellie is doing:

March 17th, 1993
This morning Ellie was tugging on my shirt with her LEFT hand. Frank will be so pleased!

March 25th,1993
We had our last appointment with the doctor in Los Angeles. Ellie smiled at him twice. I thanked him for giving me back my baby.

April 16th, 1993
We have been back in New Orleans almost a month. Ellie is doing great. She continues to catch up developmentally and is using her left side. She is still very weak and her movements are a little jerky. She lost two pounds since stopping the steroids.

May 31st, 1993
It is with great joy in my heart and gratitude to G-d that I write this. Ellie is beginning to crawl!!!

June 19, 1993
Eliana is one today. As someone said "It's been quite a year!" She sat on her own for 18 minutes today.

January 15th, 1994
It's been one year since you were diagnosed with infantile spasms. You are walking and begining to talk, but you fall over a lot and you have started having seizures again in the last six months. We have decided to put you on the ketogenic diet. We spent three days in the hospital starting the diet and for me to learn how to do it. If this works, it will be worth the difficulty.

July 29, 1995
Eliana, you are now making five word sentences. You have been on your magic diet for 20 months. You are a wonderful, beautiful little three year old and we love you very much. Oh, yes, you call me 'mommy' all the time

July 15th, 1998
Ellie, you now have two younger brothers who are both fine. You a precocious six year old who beats your older sister at chess and uses words like 'nocturnal'! Who would have thought this could happen?? We are so grateful for our walking miracle every day.

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