Tuesday, September 6, 2011

Finally ready to write about it.

I am sure in the past year there may have been confusion as to why I write about what a miracle my boy is and how lucky we have been and that we have hope and all of that other jazz. There is a big chunk missing out of my blog that should have been written but wasn't. Hopefully this fills in that gaps.

I have fought writing about this because it was so personal to me, and at the time I didn't know what the out come would be, and for me that was scary to put the possibilities out there. I was scared that people reading this would make judgments about Eli before they even knew him. I am such a mama bear. Here we are almost a year later and I am ready to write.

In October of last year, we noticed that Eli would do something very unusual. When he would sit his body would jack knife forward repetitively every 15 seconds for 5 minute sets, five or six times a day. He liked to rock so we thought nothing of it for a little while.

One evening we were together with family and friends, and he started doing it and someone was very concerned and urged us to contact Eli's neurologist. We informed them that we had already done so, and we were just waiting for them to get back to us.

The neurology dept. got back to us and recommended upping his medication to see if that would help. We did and saw no results. Again this family friend urged us to take a video of him and send it to his neurologist. I wish I had the video to post, in case it could have helped anyone else know what to look for. I think we deleted the video because it was just so sad to watch this happen to him.

We did so and within a week, we received a call personally from his neurologist(normally it is a nurse we speak with.) she told us she thought it was infantile spasms and that we needed to get him in for an EEG to be certain. We got it scheduled and indeed the results came back as infantile spasms. We were devastated after doing the research on it. Doing online searches led us to reading things like this:

Infantile spasms is one of the “catastrophic childhood epilepsies” because of the difficulty in controlling seizures and the association with mental retardation. However, early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development.

Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients (4, 24). In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH. (Those who treat large numbers of infantile spasm patients do not see such a high mortality rate, which largely is due to improved medical capabilities.) Of the 147 surviving patients, 25 (17%) had a favorable developmental outcome with an IQ of 85 or greater. Eleven others were in the dull–normal range, with an IQ of 68–84. Thus, of the 214 patients diagnosed with infantile spasms, 31% died, 45% were retarded, but 24% had a reasonably favorable outcome. The outcome is dependent on two major factors. First and foremost is the underlying etiology. Some etiologies will lead to death or mental retardation, whether or not the patient developed infantile spasms. However, children with cryptogenic infantile spasms or infantile spasms that is due to remediable etiologies, such as focal cortical dysplasia, may have a normal or near normal developmental outcome if seizures are controlled. Thus, the goal of therapy is to achieve control as soon as possible, especially for children who may have the potential for normal intellectual development.

Can you imagine reading and knowing that your child had the possibility of being retarded because of a health problem they had when they seem so normal and healthy? I don't think I have ever been filled with more fear in any time of my life than during this point.

Again it was Eli's neurologist who called us and gave us all the details and told us what needed to be done, and got an appointment within the next 5 days. That is super irregular to get such a fast appt. but that just tells you how serious it is.

These are e-mails I wrote to family to make them aware of what was happening. I wish I would have written more at the time it was happening, but writing about it made it all the more real and truth be told I just wanted to block it out.

We just got a call back from Eli’s Dr. The results from his EEG came back abnormal. He has been diagnosed with Infantile spasms which is a form of seizure. We have an appointment with his Dr. on Tuesday, she wants to hopefully treat them with a series of steroid injections. She said that getting it all set up is quite a process and that we would talk more about what this means for him and us at the appointment next week.
Thank you for all of your love and support,

Jed and Ash

At Eli’s appointment we talked about infantile spasms, they can have life altering effects but are contingent on what is causing them. Some of which include developmental regression and or mental retardation. (We are hopeful since we have caught it early and he is receiving rapid treatment) The most essential thing for us to do is to stop the seizures from occurring. He will be doing a treatment of ACTH which is a steroid for 2 weeks. This is the gold standard in hopefully treating them. We have Home Health coming into to teach us how to administer his shot intramuscularly in his thigh and take his blood pressure. He will take a shot once a day and we will be taking his BP twice a day. The steroid has downsides while he is on the medication, he can gain weight rapidly, possible high blood pressure, be really irritable, have night sweats, and his immune system will be weakened for the period he is on his treatment and a little bit after. So we have to be vigilant with hand washing and careful with being in large crowds. He will be most susceptible to people that have had or have recently been given the chicken pox vaccine. So this is what we have to be most careful with, as it could cause a serious infection for him. We discussed Thanksgiving with the nurse at Primary Childrens and she said that it is fine for us to still host we just need to be careful to not pass him around to much and make sure people wash before they touch him.
His nurse came last night and did some teaching with us and Jed administered his shot. Jed did really well. I made him do it because I knew I couldn’t. The nurse was impressed with how well he handled it. After his treatment we will have another EEG done to make sure the medication has done it’s job which is to stop the chaotic brainwave activity. It is also important for us to see if we can figure out what is causing it. There is however a possibility that we may never find out. But we will start with the base ruling out tests first of which will be a spinal tap and if they can’t find anything there I think the next step is a metabolic panel.
When we went in they told us that Eli is a high priority patient and we were given a number to call to keep us in close contact if we need something. We feel like he is receiving the best care possible. His medication isn’t always the easiest to get but gratefully there was a pharmacy return and they had it in stock, so that we could give him his treatment immediately as opposed to waiting. As I left Eli’s appointment yesterday I felt peace. I was very anxious before.
Much love,
Jed, Ashley and family

At the end of Eli's ACTH treatment, he had another EEG to see it the medication had stopped the Infantile Spasms. We were so anxious. I can't even begin so say. We received the best news ever that the medication did what it was supposed to. This was right before Thanksgiving and my heart was filled with gratitude for so many things. As Eli reached the end of his treatment he was smiling and laughing again. (He stopped doing this when the infantile spasms started.) It was such a miracle to have our little boy back.

We did 2 out of the 3 tests they wanted us to do and they both came back with no answers. We so wanted to do the genetic testing to see if that would give us the answers we needed. Our insurance informed us that they refused to pay for it. I hope at some point that it will be an option for us.

To our family friend who urged and encouraged us to be persistent with the neurology dept and send in the video, I will be forever grateful to you. I don't know if you read our blog, but I want to thank you for helping us save our son from a terrible fate. You knew what needed to be done and helped us to know what to do. I will love you forever for it.

After the treatment, Bubba put on a pretty decent amount of weight. 3 lbs. is a lot in two weeks time. He went from this to this. He has thinned out a lot since then, and people always tell me how big he is and I always smile and say, "No this is skinny for him."

We are so LUCKY. I have read some blogs of other children who have had IS and it has been such a battle for them. On November 22 of 2011 Eli will have been IS seizure free for a year. We feel so blessed.

We love, love, love this boy so much.


  1. {{{hugs}}} I think it's really brave of you and really kind of you to share this Ash. I think it's a good example of how important it is to be proactive about health care and following your instincts. What a tender mercy Heavenly Father gave your family by having your family friend in your home at the right time to encourage and support you guys. Big blessing right there. I'm so happy to be reminded that it's been nearly a year since Eli had his last seizure! What another amazing blessing. I need to hug that kid!! Love you all!!

  2. Your such a strong momma! I was wondering how he was doing. Thanks for sharing the good news that he has been seizure free for one year!I pray for the best for you guys!

  3. Oh Ash! He is so so cute! I am glad you were able to figure things out. Being up in the air is HORRIBLE! ;)

  4. Yay for one year! So glad things are settling. Love you!

  5. You are such a strong mother and woman. And your family is amazing. I am so grateful to know you as my friend.

  6. Ashley! I loved this story and I think it is just wonderful! A little miracle really. I'm so happy that Eli is doing well. :) I always did wonder a bit about what sort of super-formula you were feeding him, it was really a magic potion!


  7. it's amazing all that can happen in a year. I am happy that you get to celebrate a healthy yummy boy! bless you and your mommie heart. It's pain to go through what you have and I am glad you guys are okay.

  8. I had know idea that you were going through so much this past year. What a little miracle! (as well as handsome little man.) You have such a beautiful family! I'm so happy you have been so very blessed this past year.