EEG results

Jayden's EEG results are still abnormal. The Dr reported that "nothing has changed", meaning that the abnormal brain waves are coming from all areas of his brain and not just one localized region. Unfortunately, this does make it hard to find the correct medication for him. Certain anti-convulsants work best for certain regions of the brain, but in Jayden's case, it's his entire brain so it's going to take time to find the right combination for him. That part, I understand. What I don't understand is why we have to wait until his follow up appointment, scheduled on the 27th, to change his medication. Our first appt with this Dr was on Aug 26th. At that appt, we told her that Jayden was having AT LEAST one seizure a week and that this had been going on since June. I've read (and the Dr actually told me this!!) that the longer seizures are left untreated, the harder it is to control them. So if she knows his seizures are not controlled at this point, and she knows that his EEG is still unchanged, and she knows which medication she wants to wean him off of and what she wants to replace it with, then WHY is she making him (and us!!) wait another week and a half to make the changes? Why not give us the instructions on how to wean him and how to start the new meds and then followup with us on the 27th to see how he's doing? Honestly, I feel AWFUL, as if I'm dictating how this DR should be treating my child and she's been at this for over 20 yrs. I am not even close to being as experienced as she is, and I am SURE that she knows what she's doing and why she's doing it. However, as a mother, I think an explanation of WHY would help me at this point. To them 12 days is just another week or so. To me and my husband, 12 days is another 2 or more seizures that we know we will have to witness and be strong for.

Jayden hasn't been a patient of this new Dr for a month yet, but I know that I am already the mom that they roll their eyes about when they get a message from me. I'm the mom that they gossip about and despise. I know this b/c I have had to call to leave messages at least twice a week for them ever since Jayden 1st saw the Dr and had the 6 minute long seizure that same night. Now when I call, the lady at the call center knows me by name and says "Do you need to leave another message for Dr. A?" Yesterday, I said "Yes, and I promise you I wouldn't be calling this often if they would just return my calls!" It's true, I have to leave at least 2 messages before they return my call and God forbid I miss the call when they finally return it. It's freaking ridiculous! I don't want to be that mom. I have stopped and ask myself, am I calling too much? Since his 1st appt on Aug 26, I called 3 times about his 6 minute long seizure before they finally returned my called. I called twice about getting his prescription renewed before the nurse finally returned my call. Then I called twice about his EEG results and to find out if we needed a followup appt before my call was finally returned. Then, I missed the call from the Dr about the results and I had to call twice before I actually got a call back. One message never does the trick for them, so it's not me, it's them and THEY are annoying me! I mean, what mom is not going to call to answers for WHY her child is having seizures so often. What mom doesn't want reassurance that it will be okay? What mom is going to just wait around, for a month, on a Dr to finally decide what needs to be done with her baby who is having seizures so frequently that he's missing at least one day of school a week?!?! I don't know of any. It makes me wonder if the Dr and her nurse even have kids...

It's frustrating, to say the least. But now I will count the days until the 27th and pray for a decrease in the seizures soon. Until then, I need to go and take care of my little guy who was just checked out of school early b/c he had a seizure during breakfast.

EEG scheduled

I was able to get in touch with the Neurology department at Tulane Hospital today and the scheduler was able to get us on the schedule for Thursday morning. I confirmed the date, but she still needed to call the nurse over at Jayden's Drs office to have her to call for the authorization from Tricare and to have her to fax over the order. I do believe it would have been MUCH easier for the nurse to call Tulane herself, but oh well, it's done. I'm still not understanding why he needs a 4th EEG done, though. We KNOW he has epilepsy and we KNOW that his seizures are breaking through the current meidcations. At this point, I have no idea what information she is trying to find by doing a 4th EEG. He has to be sleep deprived for it so we will keep him up until midnight on Wednesday and send him to school on Thursday morning. Then we will pick him up early and head over to Tulane for the EEG scheduled for 11:30. The hard part will be keeping him awake for the ride to the hospital. His genetics appt is scheduled for next Tuesday. If we don't start to get some answers or, at the very least, some medication adjustments or changes, we will be switching doctors.

My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.

On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)

Deprived

So today was Jayden's EEG. It was scheduled for 12:45 and the Drs office advised us to have him sleep deprived for the procedure b/c they would like to see some readings while he is asleep and using a sedative could have possibly affected the results. So, thus the adventure began last night. My husband and I stayed up with Jayden until a little after midnight and I woke up with him at 4am. Getting him up at 4 was not an issue (for him). 24 hour Noggin is awesome!! He was singing within 20minutes of being snatched out of bed. At 6, he asked to watch Spiderman 3, so we (he) watched that and then we watched some Michael Jackson videos. I could tell he was sleepy, but he wasn't going to give in to sleep, which was good for that point in time. One thing I found out today is that my boy is SO lovable when he is deprived of sleep. He just kept running up to me and throwing his arms around my neck and giving big, fish mouth kisses. Oh so sweet. Perhaps he was thanking me for allowing him to skip sleep??? LOL! We got to the hosital at 12:30 and registered and were sent up to the EEG area. He was still running around, sliding on the floor, and screaming to hear his echo. I honestly didn't think there was any chance he would fall asleep. We were called back and Jayden had to lie in a hospital bed and had about 20 or more electrodes attached to his head. He FREAKED out over having the electrodes placed on his head. It was so sad to watch. I know it didn't hurt him, but he just did not like it one bit. He would scream and cry and then remind himself that he was a big boy. Poor thing! After he was completely hooked up and had his head wrapped up, I was able to get on the bed with him and put his head in my lap. He screamed, kicked, cried, and pulled electrodes off during the first 10 minutes of the EEG. I told him that his wires were his spiderman webs and he said ok and settled a bit. He would whine every now and then but soon I saw his eyes get heavy and he quickly fell asleep. The rest of the test was a breeze. We won' get the results until sometime next week, so I'm praying or the best.

We got home and I put my sleepy boy in his bed and he immediately fell asleep. I took a 2 hour nap and got up to have dinner. Now Jayden is asleep, 30 minutes early after having a HUGE meltdown over bathtime. He drank his milk in bed and then told us night night. Went to bed without a fuss. Now it's my turn!