We have always been as honest as we can with Jarod in terms that he understands but this time is all new territory for us. Although Jarod has been in the hospital at least yearly, every single year of his life but one, this upcoming surgery is big. His last open heart surgery was nearly 13 years ago at the age of 2 years old and he just doesn't remember it. While some parents choose a different approach, this is the course we have chose and one I prefer for our family. I want Jarod to be able to advocate for himself and understand as much as possible when it comes to his heart and his overall health and to understand that all of this is done to help him feel better.
Now that we actually have a date for surgery, things have escalated to say the least. Back in March, I asked if we could try some medication to see if this might help his anxiety. As much as I didn't want to add yet another med, I felt this was important for Jarod's well being. He was started on a low dose of Zoloft by one of the pediatricians familiar with him, also at the recommendation of the developmental pediatrician at Kluge. We had to follow up a month later to see how he was doing. We followed up a month later and when telling the pediatrician the Zoloft wasn't really helping much, he did say that normally he would not treat for something like this but he sees just how much the fear and anxiety is impacting his life so he agreed to continue and he increased the dose. That first night was like a light had been switched on in Jarod and not in a good way either. Behavior was getting much worse and Jarod was doing things at school that were so out of character for him. While I won't go into detail about his actions, he actually got in enough trouble to get suspended on a Friday. At this point, I called the pediatrician's office and the nurse took down my concerns but the doctor would not be in until Monday. The following Monday, the doctor called and I explained what was going on and asked for a week or two off from school to see if this would help. I must say, we have some of the best pediatricians around who are so supportive and know that we as parents actually know what is best for our kids. He explained that sometimes kids can have a "paradoxical effect" to the Zoloft and we should stop it right away. We immediately stopped the Zoloft and had an appointment the following morning to get in with his counselor.
Jarod went to see his counselor but had not seen her in awhile. She had been helping him work through some bullying issues that were happening at school and has not needed to talk until now. As soon as she saw him, she knew this was not the same Jarod and, along with the pediatricians recommendation, we were scheduled with a psychiatrist that Thursday in hopes of some help and answers.
Thursday arrived and we saw the psychiatrist. He spent a good amount of time getting to know Jarod and explained that sometimes Zoloft and other similar SSRI's will uncover an "underlying mania" so now the work up begins to see if Jarod is bipolar. At this point, my heart is broken, broken because I just want Jarod to catch a break. I mean really, how many more diagnoses and specialists do we need to add to the list??? While I know this is no one's fault, the guilt I feel for requesting the Zoloft is literally eating away at me night and day. On the other hand, I feel fortunate to have found out this information now when Jarod weighs only 75 pounds and not later when he is at 200 pounds and could physically hurt me or anyone else. As mentioned before, behavior was out of control and he was doing things he never would have done like picking up knives, grabbing medication bottles, etc. so this was some scary stuff.
As of now, the plan is to get Jarod's mood stabilized so Risperdal was added and then increased at the second visit. The psychiatrist will monitor him closely and the hope is to get his mood stabilized and then add medication for his ADHD. He has had the diagnosis of ADHD since 2009 but after trying two medications that both caused chest pain and palpitations, we chose to put this on the back burner. Now that he is older, it is time to re-address this and the psychiatrist will try Jarod on Strattera, which is a non-stimulant, in the next few visits. One thing the psychiatrist was really interested in was when exactly the anxiety started. We really noticed a difference after our visit to CHOP in November. Jarod is old enough to be a part of the discussions with all of his doctors and asks his own questions. It was after that visit, we started to notice more anxiety. Later, after talking with Jarod about his fears and concerns, we found out that he was interpreting CHOP as "hi ya", like a karate chop. One of the first concerns from the psychiatrist was using the word "CHOP" with kids. While Jarod is old enough to understand a lot, he did not understand that CHOP was just an abbreviation so we are very careful of this now and if we say CHOP, we remind him just what it stands for.
As I write this, Jarod does seem to be getting back to himself. He doesn't look and seem as "lost" as he was though he is extremely tired and will fall asleep at the drop of a hat. A lot of this is his heart but add to that his medication and this just makes him exhausted. I hope as the days and weeks go by, we will have our sweet Jarod back to his normal self once again.
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