Appointment with new neurologist

So, finally, after exactly 2 LONG months of having no neurologist at all for Jayden, he had his appointment with the new one over at Children's hospital. Of course, it wasn't smooth sailing, although I'm beginning to believe it's some sort of Johnson family omen. Or perhaps the devil trying to see just how hard I am willing to fight for my son. Long story short, Jayden's Tricare referral got lost in the shuffle of paperwork and daily faxes. New Orleans is very low on pediatric neurologists so the offices are jam packed. That's when you have to depend on those computer systems. However, in order to depend on one, you gotta know how to USE one! The receptionist at the neurology clinic asked me to call the general pedi to get it faxed over. The nurse over at the pedi's office couldn't locate the referral for the Dr we were scheduled to see. Instead of returning my call, she just didn't do anything. I called twice and the receptionist called the 3rd time. Still no referral. The neuro nurse called and the nurse at the pediatrician's office told her that we didn't have a referral to see Dr. C, it was for another Dr. So the nurse came out and told us that we were scheduled to see the wrong Dr and that we'd have to see Dr. M next week. Oh hell no!! See, we were scheduled all along to see Dr. M this morning at 10am. When Jayden was discharged from the hospital last week, we rec'd a call from the clinic stating that we should not come to the appt to see Dr. M at 10 and instead take him to the Metairie clinic to see Dr. C at 2pm. I immediately called the general pediatrician's office to check on the referral and she checked the system and saw that he did indeed have a referral to see Dr. C and she faxed it over that same day. That's the referral that was lost somewhere. So I pitched a fit. How dare they even think of sending us home to wait ANOTHER 7 DAYS to get my son seen b/c of a mistake someone in their office made. I understand that the nurse and the office manager's hands were tied, but unfortunately, they had to be a sounding board. I actually had to just say "Let me walk out of here before I go to jail." b/c I seriously felt like punching something. I snatched my cell phone and called the pediatrician's office and demanded to speak to the nurse. The receptionist said she could take a message but I said "No. I've left 3 messages and now the neurologist is about to cancel my child's appointment. I need the nurse on the phone now." I was put on hold for about 3 minutes and then the receptionist comes back on the phone and says she has a referral for Dr M. I said, he also has another referral which is for Dr. C. She goes through it again and says she sees one for Dr. A. No, that's the Dr who we are no longer seeing. She looked again and said "OH!! HERE IT IS!" OMG. I headed back inside and asked that receptionist to grab the nurse and they hounded the fax machine and finally, at 3:45 (his appointment was scheduled for 2), the referral came through. Lord...

So, anyway, I walked in there feeling bad about the way I had to act in order to get him seen, but hey at least he was finally being seen. And the best thing about it all...Dr. C was totally worth the wait. Yeah, I know I could possibly be jumping the gun, but I had a bad taste in my mouth for the previous neurologist from the very first visit and less than a week later we were looking for a new neurologist. Dr. C apologized for the referral issue and went to work getting Jayden's history and the names of the medications that he has tried and the ones that didn't work for him at all. The Dr told us that there are still several medications available that we can try him on (which was a relief b/c the last Dr told us that his chances of having his seizures medically controlled were slim...ugh)and we still have several options before having to pursue surgical options. She wants him to have a 24 hour video EEG done soon. She's adjusting his medication and going to attempt to eliminate the ones that he's taking that are simply not helping at all. We discussed the benefits of a vagus nerve stimulator so that we will know that it's definitely an option for Jayden should the medications not work for him. She told us "We are not going to give up on him. We will stop the seizures or work on reducing the frequency b/c it CAN be done, we just have to figure out how."

Before we left, she gave me her PERSONAL email address b/c she simply does not rely 100% on her office staff b/c they are not 100% reliable (example #1, the referral.) She wants me to keep in touch with her via email while he's weaning on to the new medication and to keep her posted on any abnormal reactions. She told me that her emails go straight to her phone and she checks it often. That is so very reassuring to me, you have no idea. She recently completed her residency over at Tulane so she worked with Dr. Nelson (our 1st WONDERFUL neurologist who relocated) and his wonderful nurse Marc and she mentioned how much she misses Marc b/c he was an excellent nurse. To which I agreed! I still call Marc when our backs are up against the wall and even though Jayden isn't his patient anymore, he does what he can to help! I told her I believe Marc spoiled the both of us, lol! Before we left, I apologized to the nurse once again about getting so upset in the waiting room and both she and the Dr chimed in and said "Oh don't be sorry!! That's your son and you are going to fight for him no matter what. We understand." Thank you Lord. I needed to hear that SOMEONE understands b/c for 4 long months we dealt with a Dr that simply did not understand and didn't care to try and understand. I'm so glad we are starting the new year with a new Dr and a new outlook.

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.

PROGRESS!!

Finally, a post with great news :)

Jayden has been regressing a lot lately due to the increase in his seizure activity. One of the main things we noticed the he lost was his ability to identify the alphabet. It may sound very trivial, but it is very disturbing to see your child go from spelling out words to not being able to identify a single letter. It's extremely hard for me b/c Jayden expressed a love for alphabets very early on. I have a vivid memory of carrying him out of Kohl's one evening, when he was just 2 yrs old when all of a sudden I hear him say "K...O...H...L!" Of course, I know he had no idea what he was spelling, but he saw letters and identified them! And this happened all.the.time. He would pick up the newspaper and start calling out the letters in bold print. Also, I have an Aeropostle shirt that Jayden loves. It has "AERO" on the front and he loved to spell it out. I also have an Air Force shirt with big "AIR FORCE" on it and Jayden would spell that out and then say "Daddy" :)So letters were a big deal to him and it was very painful to watch him lose that. Every letter became B. Even the ABC song was now "B B B B B...." :( We would show him flash cards and every letter to him was B. We tried two letters at a time...A and B, and we would tell him to say A when he sees the A card. He'd repeat after us, but when asked what the A was, he would say B. My Aero shirt meant nothing to him anymore. Letters meant nothing to him anymore. I was very discouraged and worried about him. His teacher told me it wasn't yet an age appropriate skill, but his neurologist did agree with me that the lose of that ability becomes a concern when neurological issues come in to play b/c the brain is being affected.

So in true fashion, I took it upon myself to help my baby :) I ordered him the Leapfrog Learning DVD set. It comes with 3 DVDs (Let's Go To School, Letter Factory, and Talking Words Factory) and alphabet flashcards. It took a while for the set to come in, but it actually came in on the day we left for Panama City, just last Thursday. Jayden instantly loved them. The entire 4 days we spent in the hotel, he requested the DVDs. Whenever he asked to watch a movie in the truck, we turned on the Letter Factory. Before we left Panama City, on Labor Day (only 4 days after watching the videos), Jayden pulled the flashcards out of the box. They were still packaged so of course the only card he could see was the letter A. Remember, before these videos, all letters were B to him. He walked up to me and handed me the cards and said "Mommy, A!!" SO PROUD!! And as if that wasn't enough, last night we were chatting with my mom while she was proofreading nursing notes for her job. Jayden picked one up and grabbed my mom's face and said "You hear me?" (we ask him "Can you hear me?" very often b/c of his staring spells! lol) and then started "reading" the notes to her. On the bottom there are a few sentences in bold, black ink and Jayden pointed to the letters and identified just about all of them!! And this was only 7 days after being introduced to these DVDs!!

I am NOT expecting or even hoping that these DVDs teach Jayden how to read (although these DVDs are highly recommended for teaching early reading skills and is MUCH cheaper than Your baby can Read!). I am simply trying to help him to regain his love for letters. It was something he enjoyed prior to the seizures stealing that from him. His little brain is still so vulnerable, still growing, so there is still hope that he can regain skills that he has lost (or will lose). This is one step in the right direction for him and it certainly puts a smile on my face!

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 :)

I'm Done.

First of all, let me apologize for what is about to follow. I need to vent. I just need to get this out, so I have to come to my blog...

Yesterday morning, before I even typed out that blog, I called and left a message for the nurse. The way this clinic works is that there is one front desk for every specialty clinic in the building. They take the message and email it to the correct nurse. Even if you miss a call (like I did today) you call back to the front desk and they send another email simply stating that you returned their call. Totally frustrating. Well anyway, my message yesterday was that Jayden was almost out of Topamax refills so we needed a new prescription called in. I left the name of the pharmacy and the number. I also asked for an update on the EEG that the Dr was supposed to be calling to have done sooner than the 16th. Of course, no one ever called me back. I wasn't surprised, but I was hoping that the nurse was smart enough to call in my child's seizure medications before he ran out with a 3 day weekend ahead. I called CVS and they checked the system and said that he had a prescription for Topamax on hold that they could fill. Since it was on hold, I knew it wasn't called in by the new Dr. It was on hold from Jayden's previous Dr from a mistake that was made by the pharmacy a few months ago. However, I waited until I got to the pharmacy to be sure. I was right. The prescribing physician was his previous neurologist. So I had the medication, which is great, but I was (and still am) angry at the fact that they didn't even bother filling his medication. Thank God I was silly enough to wait until he was completely out, but we leave for Florida tonight and he did not have enough to last the weekend. So I called again this morning. Oh yeah, I know I am the aggravating parent of the clinic now. I don't give a shit at this point. The nurse called me a few hours later but I missed her call. I called back and had to do the message circle again. She called back an hour later with a huge attitude. She immediately started to defend herself for not calling me back.

She said "We cannot call in that prescription for Jayden b/c we didn't prescribe it."

Wait, what?!?!

I said, "I know, his previous neurologist prescribed it and we just happened to run out of refills and need a new prescription called in since he is about to run out and I know that we cannot wait until the EEG b/c he will be out of medication by then and his seizures are already out of control." She then says, "Well when you came in on the 27th YOU told us that he was taking 15mg of Topamax, but you are asking us to fill a prescription for 25mg." I told her, "No ma'am. What I told you was that I was not sure of the mg but I could call you when I got home to check the bottle." I didn't want to turn around and point the finger at her, when in actuality, she went into the computer and it was listed there as 15mg so she went with that. But here is my problem with this...When I left the message I was reading off of his prescription bottle. 25mg. That's what he's been taking. That's what I read off the bottle. So you mean to tell me that b/c what I am telling you is on his bottle of meds does not match what's in your computer, you will NOT call in his medication? Does she know what will happen to my child if we just all of a sudden stop giving him his medication? She the nurse of a neurologist, so you would think that she'd know how serious that would be. But judging from her attitude, I don't think she knew, or she just doesn't give a shit. I told her, "Ma'am, he takes 25mg capsules. I read it from the bottle. He needs more medication." She said okay it will be called in. Thanks! So then I ask if the Dr spoke to her about moving the EEG up. Here goes...more finger pointing and defensiveness.

"No. {insert patronizing laugh}The Dr told YOU to call Tulane and schedule the EEG."

SERIOUSLY?! What is my insurance company paying her for???

I said, "So I just call neurology and tell them that I need my son to have an EEG done?" Nurse, "Yes." I said "Okay, thanks!" and hung up the phone. She is full of it. I cannot call a hospital and request an EEG for my own child without orders from a Dr. Besides that, it's NOT my job!!! That's ok. I'm going to ATTEMPT to call Tulane tomorrow. I imagine I will get several confused receptionists and schedulers (if I even get that far) who will be wondering why I am calling to schedule my child's EEG. Then I will have to call the neuro's office back, leave a message, wait for them not to call back. Then we will go on through a 3 day weekend. Who knows how many seizures Jayden will have had by the time the nurse calls me back. And by then, what's the use of having the EEG moved up sooner. This is unacceptable.

What's crazy is that this Dr is highly recommended and supposedly the best in New Orleans. I truly expected much better care than this for my son. The communication there is awful, and honestly, the Dr needs to find herself a new nurse b/c this nurse is giving her a bad rep. My son has had 4 freaking seizures since he saw her on Thursday, 7 days ago. I have had ZERO support from them and then today the nurse tries to REFUSE to fill his medication. The Dr may very well be the best in New Orleans, but unfortunately I don't think she is good enough for him.

Not Happy

I hate that I am even in a position to have to type this out....

I am not happy with Jayden's new neurologist!

We waited for months and I was SO HOPEFUL! So far, she was not worth the wait. If you read my last post, you know I'm not saying this b/c of her inability to "magically" heal my son and give us answers. I completely understand that she is human and I trust that she has some sort of plan to figure out what's going on with him and how to help him. HOWEVER...

Jayden was off Thursday morning. We actually left out of the house late b/c he was just not himself. He dazed almost the entire 45 minute ride to the clinic. Then when we got there he was very sleepy and lying in my husband's lap (pretty sure he'd had an absence seizure in the car). Well he was fine after a nap and we went over to my parents' house for dinner. Jayden played with his cousin and they even went to sell some of his cookie dough for school to the neighbors. He was just fine. But then he sat on the couch and we were at the dining table and could see him clearly. All of a sudden I heard him whine and I looked over at him. He tried to get off the couch but ended up doing a faceplant into the couch cushions. He cried and reached and the first person to get him was my niece. She sat him up but told me that he didn't want to get off the couch. Thinking back, when he starts having a seizure, he is impossible to easily pick up. It's like his entire body fights you. So she probably thought he was pulling away from her. He cried more and reached for me and I knew he was about to have a seizure (or having it already) so I picked him up and brought him to the table with us. It only got worse from there. He moaned, pounded on his head with his fist, pounded on my shoulder. He was hot and clammy and drooling. And this went on for 6 minutes. 6 long ass minutes. Can you imagine watching your child OBVIOUSLY in pain and you cannot do a thing FOR 6 MINUTES!?! My mom was ready to give him his rescue meds, but honestly, I wasn't prepared. I was worried about how he would react. The Diastat is rectal valium. The nearest hospital is over 20 minutes away. His seizures never lasted this long. I just kept saying, "It's gonna stop. It's gonna stop. It HAS to stop!!" It did stop eventually. But it left us with a baby that was out cold and family full of worry. He was absolutely fine the next morning albeit pretty hyper and uncoordinated.

So, of course, as would any concerned mother would do after an event like this, I called the Dr to leave a message on the next morning (Friday). My message was that my little boy had a 6 minute long seizure and his coordination is still off and I'm concerned. No one bothered returning my call. Bad taste. We stayed home (or close to home) all weekend b/c I couldn't bare him having a long seizure like that out in public. My strength is breaking. Sunday he had another one. It was VERY short, but strong enough to make him scream out in pain and then pass out. I called again on Monday and this time I said that I left a message on Friday and I didn't get a call back but really need to speak with someone b/c I'm concerned about my son. 2 hours later, the nurse called back. I told her about the seizure and she asked me if he was breathing the entire time. He moaned alot and every now and then he did take a deep breath before he seized again. That's all I could tell her. His face was losing color but it had been that way all day (the color of his face is the first thing I notice on a bad day). So then she says she will tell the Dr and the Dr will give me a call back. Well that was at 10am. 4:30 came and I never heard from the Dr. I called back and left a message asking if the nurse spoke to the Dr about my son. Yeah, I annoyed the shit out of them, but I cannot be timid about this when my child is suffering and possibly having some brain damage done during all of these seizures! If anything, give me a call back for reassurance. Well at 4:55 my phone rang and it was the Dr. I gave her a run down of what was going on and she said that she will call another hospital to see if they can do his EEG sooner than the 16th (the 4th EEG when the first 3 were all abnormal anyway...)but that she couldn't do that until the next day b/c scheduling was closed. Scheduling would not have been closed had she called me back sooner. But I give her the benefit of doubt and say that she was more than likely very busy with patients. HOWEVER, what if my son was an emergency situation?! I'm just not comfortable with that. This conversation with her was on Monday. She did not call me yesterday with any info on his EEG. I called this morning to find out about it. I left a message and I don't expect a call back today. I don't like chasing behind her. It's one thing if Jayden was a 100% healthy child with no serious issues, but frequent seizures is very serious. She should be making a bigger effort to not only get him help but to reassure us that she is working on a plan. To reassure me that the seizures he's having is not hurting him even though they are NOT controlled. To reassure me that the medication I'm dumping into his system twice a day (that is NOT working) is not poisoning his little body. Instead, all I get from her after I track her down is "Let me see if I can move his EEG up sooner, but the main thing we need is the genetics appt b/c I have to know if this is even something worth treating." Um, gee thanks for that reassurance!

I am so sick over this. I feel like I am failing him. His last neurologist was wonderful, despite the fact that he did not specialize in epilepsy. When Jayden was referred to him, he only had the abnormal EEG. We hadn't witnessed multiple seizures until the first (that we saw) grand mal seizure on Thanksgiving Day. After that, the seizures kept coming and he got the diagnosis and Dr. N was honest with us and told us that he needed to refer us to a neuro who specializing in E. But one thing about Dr. N...he returned calls. He reassured us. When Jayden's seizure activity increased, he did something about it. And when Jayden was very sick in April with breakthrough seizures (40-50 seizures a day!!) Dr. N returned calls immediately telling us what to do. He even called down to the ER to let them know that Jayden needed to be admitted when he arrived there. I am so afraid of that happening again while he is under the care of this Dr. She is not easily reached and does not seem to think that we are even deserving of a returned phone call concerning our son's health. I'm not happy with her. Sometime I wonder if I'm expecting too much b/c this is my son. But NO!! What is a phone call? What is a few minutes out of your busy day to let a very concerned parent know that you are actually working on a plan for her sick child? I don't even need the Dr to call me. Pass the message to your nurse for crying out loud. Here we are, going into a 3 day weekend. We have had a trip planned to visit my inlaws in Fl for some time now. We will have to go prepared for Jayden to have a seizure. I can handle the seizures. It's tough (especially the long ones!) but he's so scared when he's having one so I have to reassure him that it's gonna be alright. I only ask the same of his Dr. It's time for me to start the search for a new one...