Heath's Journey 6/1/09

mujul79's picture

We are home!!

I am going to back track a little so I only have to type this out once and can copy and paste it to his blog.

As you already know we went to the hospital on 5/6 and stayed until 5/12 because I suspected he was having seizures. I described them as best I could to all the dr.s that saw him during that time and even said it looked like some infantile spasms I had viewed on youtube. But without a visual they could not understand what I was describing even when I tried to sit in a chair and minick with my body what I had seen him do. This extension of one side and flexing of the other while spaced out. It all got charted and we did the EEG (normal range) MRI (normal range) and CT (normal for age) All during that time (6 days) he did not have one what started to be referred to as episodes. I was told to go home keep a journal of them and if I could tape one, and not to do anything but keep my July appointment with neurology. But that if they got worse or I noticed a change in him to go back in to the pedi or come to the ER.

Yesterday 5/31/09 9 :30am I was woken by Heath. He was sound asleep and having an episode. It lasted about 4 min and then he went back to sleep for 2 hours, I just watched stroked him and tried to help him know I was with him. When he woke he acted fine so I got us dressed left DH with the older 2 kids and took the baby with me to grocery store. At 11:45am in the shopping cart he had another. I tried to hug him so they would not be so violent I was scared he was going to get hurt on the cart (thank god I have a cart cover) but knew from in the past not to pick him up hold him because he gets so wiggly I have almost dropped him during it before while sitting. I was trying not to make a big deal out of it and just waited for it to pass. I will never forget the little girl that saw him and kept asking her mom what was wrong with him Once it was over and before I could check out of the store Heath got sleepy stuck his thumb in his mouth and went to sleep (turned into a 4 hour nap). I did not rush home I had seen him do this before and knew now that it was over you can't do anything but record it and let him sleep. BTW his apnea alarms never went off.

At 7pm he had another this one lasted 15 min (when I say 15 min I mean he had clusters of spasms during that time) I did manage to get the middle 10 of that 15min on tape. I knew that one was different it was more volatile then the others he had ever had and he was doing more moments than I had never seen. A new head bob and eye moment added to the flexing that freaked me out (when I get it uploaded you hear me start to cry on the tape)

During his bath before the visit he had another one. So non of them seem to have any connection or trigger that we can find. They have taken place in bouncy, car seat, shopping cart, bombo and now the bath.

It was 9:01am when I called the pedi's today and told them I had an episode on tape and needed the pedi to view it. At 10:20 was our visit and it only took her looking at it for 2 min to know she had to get him seen by neurology ASAP and she went to make a phone call.

We got sent to the ER. At the ER they watched his vitals and him until 4pm when he was discharged (they did not even bother looking at the tape, other then a nurse that was curious) and sent us over to the neurology clinic with a visit they had set up as and out patent for today.

There they watched the entire 10 min video and we talked and they told me what I was seeing. They also spent about 30 min just playing with Heath and getting to know him and that this baby social and playing was not the same one on the tape. On the tape he is all unfocused non responsive and having spasms every 30 sec or more. What bothered them more then the spasms is that he is having them asymmetrically. Most babies have them on both sides of the body. Only one side of Heath seems to be effected while the other side stays still or keeps normal moments. I left being told he is having Asymmetric Infantile Spasms (seizures in infants) and that he needs to have another EGG.

The 2nd EGG is to be compared to the one they are calling his base line done during our hospital stay last month. Basically they know he is having seizures but they can't tell me why or even start to fix them until they know what the 2nd EGG shows. It will tell them more about what part of the brain is being effected and how. After that some type of meds to try and stop them will come into play.

I am home now waiting for a phone call telling me in the next 48 hours when to go back to the hospital for the EGG repeat.

Something else: His SSI was declined so we have to appeal and Babies Can't Wait is coming out to set up his PT on Thursday.

Another thing I have not had time to post is I am no longer working. I resigned from my job as a Breastfeeding Peer to stay home after they told me he was a liability and I could no longer bring him to work with me.


Silverwind's picture

Submitted by Silverwind on

Jules I'm so sorry you are going through all this! I wish I could just reach through the screen and hug you. I can't believe they told you Heath is a liability and wouldn't let you bring him, that really stinks! I hope you get some answers soon and Heath gets the help he needs to get better.