Tuesday, February 27, 2007

Our trip to UCLA!

As you know, I got the word last Friday that we were finally approved for our visit to Dr. Shields. Brett has been out sick the last few days, so Jenelle and I made the trip to UCLA yesterday to see Dr. Shields on our own. I think Dr. Shields was disappointed at bit as he enjoys talking sports with Brett. However, our appointment went well and as usual he was thrilled to hear of Jenelle's improved progress.

Since we last saw Dr. Shields, Jenelle has had a 25% weight gain (8 pounds total!) so she was in desperate need for an increase on her seizure meds. He was shocked as to how much she has grown. Dr. Shields got to witness first hand Jenelle's strength and uncontrolled movements and agreed that we should be concerned with her possibly hurting herself. But at the same time, compared to almost 2 years ago, the change in her is nice to see. I told him about her increased seizures and he felt it was definitely the weight gain.

We now have a plan of action and it was not what I had expected. We are going to increase Jenelle's Felbatol, which has been her main seizure drug, and the one with the best results. She will now be getting 1,000 mg a day. I had hoped we would increase her Tranxene (the Valium like drug that keeps her calm and helps her sleep) but instead Dr. Shields wants to take her off it completely. While I argued that it was the only medication we had to get her to sleep, he felt she had been on it too long and there are other drugs we can use for sedation purposes. His exact words were "trust me" and he explained that because Tranxene is a valium like narcotic, she really shouldn't be on it for this long. We're going to do a very slow wean off this drug as he explained that there could be a potential for "withdrawal" like symptoms. We're going to decrease by a half a pill every month until our next appointment - so in essence it will take 6 months to completely take her off the drug.

This drug wean could cause some instability in Jenelle's seizures (i.e. - they could increase) but Dr. Shields really wants to know if the Felbatol is helping all of her seizure types and if mono-therapy (using only one drug) could be beneficial to her behavior and development. Our next appointment is scheduled for August, and at that time we may discuss using psychotic drugs for our sedation needs and behavior problems. And of course, he assured me that he is a phone call away should things get out of hand.

There are times when Jenelle is sick or has vomited medications that I am comfortable playing with her medication, and in the last month I've been very tempted to increase the Tranxene on my own. However, I really felt uncomfortable making a change like that without Dr. Shields' direction and after our discussion yesterday I'm glad I held out and didn't increase it on my own.
The results from the a-typical Rett test were not available yet, and Dr. Shields wanted to run a platelet count and liver function panel to monitor her Felbatol levels, so Jenelle had another blood draw yesterday afternoon. This one went perfectly and without any problems. I told Dr. Shields about the problems getting the appointment approved and he simply shook his head. He said he wished their was a way to make insurance companies see the harm they are doing to other patients when they require such un-necessary appointments. I think we're preaching to the choir on that! ;)

Please keep Jenelle in your thoughts and prayers that the changes in medication go smoothly over the next 6 months. We should hear something soon on the Rett test. As always, I'll keep you posted!

Sunday, February 25, 2007

I am a Hot Wife groupie!

And I've got the t-shirt to prove it!

So, last night after posting our Sunday Six, I was reading some of my favorite blogs and came across this lovely t-shirt for sale at Dad Gone Mad! Instantly, I knew I had to have one as the original "Hot Wife" is my personal inspiration! ;)

Want to know how I got it so fast? Well, Danny (aka Dad Gone Mad) and I have mutual friends. Our friend is known on Danny's blog as "Adam the Ambulance Chaser". When I ordered my t-shirt at 10:00 p.m. last night no less, I left a note to the seller to "save me the postage and give it to Adam for delivery!" Sure enough, this morning around 10:00 a.m., Adam shows up at my door, cute little bag in hand with my adorable shirt! How's that for service!

Of course, I hadn't showered in two days and the coffee hadn't kicked in... so an hour later after making myself presentable, Jenelle and I took this photo to send to Danny. Jenelle is the biggest Internet celebrity I could find at the time, and she is wearing her hot pink hair clip too!

What fun!

Friday, February 23, 2007

Finally, some good news!

Our appointment for Dr. Shields on Monday has been APPROVED! WOO HOO!

Wednesday, February 21, 2007

And yet, another marathon!

Well, I jinxed it. But not in the way I thought I might - we're still waiting for word that our visit to Dr. Shields next Monday is approved. However, when I asked for "positive urine thoughts", I should have instead added "and an easy blood draw as well!" As I mentioned in my last update, the metabolic tests were approved and I had to take Jenelle to Quest Diagnostics to turn in her urine sample and have blood drawn. According to her doctor's orders, Jenelle had to be off her Bi-Citra Supplement (the one she gets for her metabolic acidosis) for 3 days, and she had to fast for 6 hours. We stopped her Bi-Citra on Tuesday and I took her to Quest on Saturday for the blood draw. Miraculously, I was able to get almost an ounce of urine for the sample, and Jack thought I was a being silly jumping up and down around the house celebrating.

So we arrived at the only Quest location open on Saturdays to find a huge line. After waiting 45 minutes, they took our written orders and told me to wait. Another 20 minutes and they called our name. Thinking it was our turn to draw blood, I was surprised when they instructed me to go back to the front desk. Apparently, the tests ordered by Jenelle's doctor couldn't be done on Saturday. They had to be delivered to many different locations the same day they were drawn, and that just couldn't happen on Saturday. And one specific test was only to be drawn on Tuesdays or Thursdays, according to my insurance. To say I was frustrated is putting it mildly. Our doctor didn't warn us of this, and it would have been a little more convenient if they had looked at my orders when I arrived.

At this point, Jenelle was starving and had been off Bi-Citra for 3 days as instructed. Surely, if they were open on a Saturday, then they had a way to deliver the specimens on a Saturday. No such luck. Then, they explained that they couldn't draw "children" on a Saturday. And this from a lab that was directly across the parking lot from Children's Hospital of Orange County. Seriously? I then asked what they were going to do with the urine sample and they first explained they would have to toss it. I was not going to give up using a good sample so I agreed to allow them to hold off on one of the two tests ordered for her urine, and they said they could run the other test because it was a routine procedure done in their office. So after trying my best to persuade them, we left. I kept Jenelle off Bi-Citra through the weekend and took her back to a different Quest lab first thing Tuesday morning. Again, I had to wait at least 45 minutes. Not because the lab was crowded, but because they had to "research" how much blood they needed for each specific test. The silly thing about that is they had copies of the order from Saturday - don't you think they could have done that before now? Once they determined they needed 9 vials of blood, they took us into a special room for the draw.

Ironically, I should have known we were out of luck when the phlebotomist remembered Jenelle from when she was a little baby. She said, "Oh, this is the baby I could never find a vein on!" Nice! I re-assured her that Jenelle hasn't had a blood draw problem in a couple years as her veins were much bigger than they used to be. Sure enough, Jenelle turned into a turnip, and it took 5 sticks to get the needed 9 vials. Jenelle fought real hard and ended up scratching me in the process. As we left, our new "not so favorite" phlebotomist asked me to kindly never return because she felt like an evil vampire woman for torturing Jenelle so much.
Oh yes, that one urine test we decided to wait on? Turns out Quest can't do it at all! I have a call into her doctor to find out what to do next. We may need to take her to Children's Hospital Los Angeles to drop off the urine, or hopefully they can take it at CHOC. I'm sure that will require special authorization as well. Either way, we'll need another sample. Please keep those fingers crossed once again!

Jenelle is doing really, but her seizures keep increasing. That appointment at UCLA can't come soon enough… hopefully on Thursday I'll hear word that we're approved. Her school informed me on Tuesday that Jenelle's new favorite drink is chocolate milk! They've been teaching her to use a straw and they said they've seen the most success with chocolate milk! Jack doesn't like chocolate, so I may have to pick some up next time I make it to the grocery store. Anything for our sweet little girl!

Thanks again for the positive thoughts and prayers, and for taking the time to read my last update. I appreciate your support and sympathize with many of you who have had similar experience with HMOs. What a nightmare!

I'll keep you posted after our trip to UCLA!

Friday, February 16, 2007

The Marathon of HMO Hoop Jumping!

Sit back and relax… go get something to drink if you like…this is going to be a long one.

I feel it is my duty as a parent and care-giver to a child with special needs to educate you on my recent and quite outrageous dealings with another world also known as HMOs. Although I’m somewhat superstitious about dishing out these details before receiving final "authorization approval," I feel an urgent need to tell you about all the crap we’ve been dealing with of late regarding Jenelle’s insurance. You will be amazed, outraged, and you will shake your head.

As you can imagine, Jenelle has a lot of specialists and is routinely seen every 6 months or so. She has a lot of appointments coming up, and the most important being with our beloved Dr. Shields at UCLA at the end of this month. Unfortunately, I’ve been trying to get this appointment approved by our insurance since approximately March of last year.

Let me give you some background. At the beginning of 2006, our insurance switched from Health Net HMO to Blue Cross HMO. Yes, I’m using the company names here because I think it is the public’s right to know what these companies and the medical groups that subscribe to these companies are forcing their patients to do. While with Health Net, Jenelle was a member of a medical group known at "Gateway." Hopefully if you are familiar with HMOs, then you will know what a "medical group" is; basically it is a group of doctors for Jenelle that are considered "in network" and thus OK for Jenelle to see assuming her primary care doctor has referred her properly.

As you can imagine, Dr. Shields at UCLA is not a member of our local network. In April 2004 our original Neurologist (who was a member of Gateway medical group) officially referred her care to Dr. Shields at UCLA (a.k.a. "out of network") and all was well in the HMO world. This referral was appropriate because he had exhausted all of his expertise, and Jenelle is simply too complicated. When our insurance changed in 2006, Jenelle’s "medical group" changed as well from Gateway to St. Joseph Affiliated Physicians. Basically, same doctors, different group. Our problems lie more with St. Joseph than they do with Blue Cross. Both Health Net and Blue Cross have been great about paying the bills, though I think Health Net was a little better, in my opinion.

When the transition was made from Health Net to Blue Cross, Jenelle was already an established patient with Dr. Shields and had appointments pending. Blue Cross provided us with a "transition" assistant who approved her existing appointments to UCLA back in February 2006, and allowed us one follow up visit which occurred in July 2006. Initially, St. Joseph denied the request but Blue Cross over turned that decision. So, this meant that our upcoming appointment for 2007 were not yet approved. When her primary care physician submitted the request for the appointment with Dr. Shields, it was immediately rejected by St. Joseph.

I made many calls to protest. I even got a letter from the head Neurologist at CHOC (the "in network" Neurology Clinic) confirming that Jenelle’s Epilepsy was best treated at UCLA. None of this worked. Officially, St. Joseph demanded that Jenelle be seen by a Neurologist "in network" first, before they would approve her to be seen by Dr. Shields. After I realized they weren’t budging on the issue, and knowing we were quickly running out of time, I then made numerous calls to CHOC Neurology and to our primary care doctor to try to get Jenelle seen as quickly as possible. Of course, that visit had to be approved as well. None of the doctors could understand why the existing appointment with Dr. Shields couldn’t be approved. Jenelle has chronic, catastrophic Epilepsy and should be properly monitored by an Epileptologist. CHOC Neurology does not have an Epileptologist. She is already an established patient with Dr. Shields and has been for almost 3 years after initially being referred by CHOC Neurology. It just didn’t’ make any sense.

Finally, I made one last plea to the director of St. Joseph. I was told point blank "Because Jenelle has not been seen at CHOC Neurology while being a member of St. Joseph; we cannot authorize Dr. Shields at UCLA until she is physically seen by a Neurologist within network (at CHOC)." Basically the Director told me to "Get an appointment, take her to CHOC, have them take her vitals, have them "confirm" she has Epilepsy, and then ask them to make a special referral request to be seen by Dr. Shields at UCLA." Seriously, confirm she has Epilepsy? What, am I making this stuff up?

So, my next call was to CHOC Neurology for an appointment – begging and pleading for them to see her ASAP so we could keep our existing appointment with Dr. Shields at the end of this month. We were two weeks away and getting desperate. On a side note, Jenelle’s seizures have been increasing of late I think due to her increased weight so we really need this appointment to discuss adjusting her medication. Frankly, Dr. Shields is the only person I trust to change her seizure medications.

So, enter a "new wrinkle" into the mix; because it had been over 2 years since Jenelle was last seen in their office, she was now considered a "new patient" at CHOC, and the earliest "new patient" appointment was 6 months out. Are you still with me? Is your head spinning yet?
Finally, I made a few more phone calls and finally spoke to the CHOC Neurology Office Manager. After hearing our story, she gave us an appointment last Wednesday per a last minute cancellation. So, I took time off work to take Jenelle out of school to take her to CHOC Neurology to be seen (physically). They took her vitals and put us in a room to meet with a Neurologist, Dr. Ishmail. After a long wait, the doctor entered the room with her file (3 inches thick mind you, and that only covered Jenelle through April 2004).

Dr. Ishmail sat down, looked me straight in the eye and said, "I’m very puzzled. May I ask why you want to switch your daughter’s care from Dr. Shields at UCLA to here?" To which I replied, "Oh no, with all due respect, we’re not switching doctors. We’re very happy with Dr. Shields and we have an appointment with him at the end of this month. I’m here simply to waste your valuable time and mine in order to keep my insurance happy." He simply shook his head and agreed to put in the referral to UCLA. A complete and utter waste of time.

Dr. Ishmail is a really nice man and is a general neurologist. He does not specialize in Epilepsy. We talked a little about Jenelle, her seizures, her medications and her amazing new progress. He confided in me that it was his opinion that we were already seeing the very best doctor in the World regarding Intractable Epilepsy like Jenelle’s. I told him I agreed. He handed me a prescription slip with a statement indicating that Jenelle was best treated at UCLA, and we left the office. I will be staying on top of this to make sure the referral gets approved. It must be approved by the end of next week - keeping our fingers crossed that telling you all this didn't jinx it.

In other insurance news, Jenelle was fitted for a new recreational stroller on Monday. She has grown out of the Graco Baby Stroller and this one will work well for our needs. That should take another month or so to arrive now that it has been ordered. And, Jenelle is getting a new safety helmet as her old one is too tight. We also got the "go ahead" to run the tests ordered by the Metabolic Specialist back in January. Jenelle needs to have a blood draw this weekend and submit a urine sample. Please wish us luck on that last part. Our wiggly, giggly girl is quite difficult to bag for a urine sample. Keep your fingers crossed for that as well!

And finally (as you can see below) I got the unofficial word that our insurance has denied our request for her sleep safe bed. Once I receive the official letter, I plan to write an appeal. I think the videos speak for themselves in regards to our safety concerns and needs.

If you’ve made it this far; thank you! Our experience of late is just a sad statement on health care issues in America. Wasted time, needless appointments, begging and pleading while we jump through endless hoops and do tricks to get insurance companies to do what they are being paid to do and should rightfully be doing all along. The saddest part of our experience is that we wasted an appointment on Wednesday that could have gone to another child with more urgent needs. CHOC’s waiting list is already 6 months out - How much shorter do you think it would be really if we didn’t have to waste time going through protocol just to satisfy the medical group’s insane and outdated practices? It’s a shame, and fortunately I know better to fight the system.

I’m not sure what can be done to change the ways of the insurance companies. But maybe getting our story out will help raise awareness that this system needs to be fixed.
Thank you for the continued positive thoughts and prayers. I’ll keep you posted after our trip to UCLA. (and don’t forget to think positive thoughts on getting that urine sample!) ;)

Tuesday, February 13, 2007

Bad news... We need to fight for the Sleep Safe Bed!

So, I got the "preliminary" word yesterday that our insurance is going to "deny" the Sleep Safer bed for Jenelle. According to them, its a piece of furniture, and not a hospital bed. Now, I ask you... where else can I find a bed with 36" rails that will keep her safe while doing this... all ... the ... time.

(These videos were taken in succession in an approximate 5 minute time frame.)

Photo Sharing - Upload Video - Video Sharing - Share Photos

Photo Sharing - Upload Video - Video Sharing - Share Photos

Photo Sharing - Upload Video - Video Sharing - Share Photos

Photo Sharing - Upload Video - Video Sharing - Share Photos

Photo Sharing - Upload Video - Video Sharing - Share Photos

Maybe now you can see why we have to let her fall asleep on the floor before putting her to bed. No child should be put to bed like that! I dread the next time she has to be admitted to the hospital. They will have to sedate her just to keep her in the bed... or worse, restrain her.

I'm sending these videos to my insurance and am appealing the denial.

A True Act of Heroism!

I wanted to share this amazing story out of New York where a man saved another man's life after he suffered a seizure and fell from a subway platform onto the train tracks.

*I also want to point out a glaring misconception noted in this story. The man stated that he put a pen in the other man's mouth to keep him from swallowing his tongue during the seizure. That is a misconception - you can not swallow your tongue during a seizure, and in fact, trying to insert an object (like a pen, spoon or tongue depressor) can cause more harm than good.

Other than that, this story is a perfect example of true heroism!

Superman of city's subways

Harlem father leaps to rescue of student who fell onto tracks


Wesley Autrey gives onlookers a big smile after his lifesaving heroics. 'I had a split-second decision to make,' he said. Cameron Hollopeter recovers in St. Luke's Hospital yesterday after his brush with death. Wesley Autrey's daughter Syshe waits for his return.

Diving onto subway tracks, a Harlem father saved the life of a stranger yesterday when he pinned the flailing man between the rails just seconds before a 370-ton train roared over their entwined bodies. "Please, sir, don't move," Wesley Autrey, 50, said as he shoved his body against Cameron Hollopeter, who had tumbled off the platform after suffering a seizure. "If you move, one of us is going to lose a leg or die."

The men, who were jammed face-to-face in a 2-foot depression between the tracks, were unharmed by the No. 1 train that screamed over them, just inches away.

"It's miraculous," Hollopeter's grandfather Jeff Friedman, 55, said later. "He's sedated, but the doctor said he's going to be okay."

Autrey, a construction worker, was having an otherwise ordinary afternoon when he passed through the turnstiles at W.137th St. and Broadway about 12:45 p.m. He was with his daughters, Shuqui, 6, and Syshe, 4, whom he planned to drop off with their mother at Times Square.

The military veteran first noticed Hollopeter, a 20-year-old film student, when he collapsed to the platform after the seizure. Autrey said he put a pen in the man's mouth* to keep him from swallowing his tongue as two women also ran to his aid.

The convulsions subsided and Hollopeter climbed to his feet - but he then staggered and fell off the downtown platform.

"I had a split-second decision to make," Autrey said. "Do I let the train run him over and hear my daughters screaming and see the blood? Or do I jump in?"

Knowing a train was likely to pull into the station at any moment, Autrey tried to pull Hollopeter up. But the fallen man started fighting his rescuer, knocking him dangerously close to the third rail and its deadly 600 volts.

Autrey told the Daily News that after only a few seconds, he saw the lights on the front of the No. 1 train bearing down on him and pushed the man into the trough.

"He was fighting and pushing against me, so I laid on top of him," Autrey said. "The train was probably 2 inches off my back."

Transit officials said the train operator reported to the rail control center that he saw a person on the roadbed upon entering the station. He made an emergency stop and found the men under the second car of the 10-car train.

"Am I dead?" Hollopeter asked, according to the man who saved his life. "Am I dead?"

"I said, 'No, we're under the train,'" Autrey recalled.

"'You're touching me. You feel me touching you? We're very much alive.'"

Autrey, who was trapped under the train for 20 minutes before workers turned off the power, said he could hear his daughters screaming.

"My daddy!" they hollered. "My daddy!"

Witnesses said Autrey began shouting at straphangers to be quiet so he could pass a message to his kids. The platform grew silent.

"Let my daughters know that I'm okay and that the man is okay!" he shouted, as onlookers broke into applause.

After the power was turned off, Autrey crawled to safety and used a step on the back of one of the subway cars to climb to safety. He emerged with grime on his right sleeve, hip and back. He said a grease stain on his hat came from being grazed by the bottom of the train.

"I thought he was going to get hit by the train," Shuqui said of her dad. "I thought he was going to be dead, but he's alive."

FDNY officials said firefighters helped pull Hollopeter up before paramedics took him to St.Luke's Hospital. Autrey was treated at the scene and then greeted by another round of applause and slaps on the back before he went to visit Hollopeter.

Hollopeter, of Harvard, Mass., is an aspiring director and a freshman at the New York Film Academy. His grandfather wasn't aware of an existing medical problem that resulted in the seizure, he said.

"On behalf of the whole family, I want to say thank you," Friedman said of Autrey. "I want to shake his hand."

Friedman was still stunned hours after the accident.

"For someone who got run over by a train, he looks pretty good," he said of his grandson. "He's a talented writer, but even he couldn't write the screenplay any better."

Saturday, February 03, 2007

She's watching us!

The other day, I was surfing the Internet on my lap top, and Jenelle crawled over to see what I was reading. She was really interested, and kept licking the screen!

And she is doing better on the pulling up, standing/sitting/leaning thing. Here are some photos from last weekend.

And I haven't shared any photos of Jack in a while. Here he is saying "Ka-chow!" while showing off his Lighting McQueen PJs.

Friday, February 02, 2007

The very real statistics

Earlier this week on one of my Special Needs Internet Support Groups, a member informed the group that shortly before Christmas, her ex-husband committed suicide and before doing so took the life of their 7 year old son with special needs. While a suicide can often leave so many questions unanswered, this story leaves me very heart broken and a little angry.

The child had a rare mitochondrial disorder and required lots of assistance. The member mentioned that she and his Father had separated because the Father never could accept having a child with special needs. He continued to help with the child’s care on weekends but ultimately the stress involved primarily caused the break-up.

This loss saddens me and reminds me of the statistics. The statistics for marriage and life while also being parents to a child with special needs. When Jenelle’s issues just started to surface, a well meaning friend pulled us aside and gave us these statistics:

80% of marriages that have a child with special needs end in divorce.
90% of marriages will end in divorce if that child with special needs dies.

Talk about eye opening statistics. I’m a strong advocate for marriage counseling, and we did not hesitate to speak to someone upon being faced with these statistics. I believe we are stronger for having done so. I’m not saying the member of my Special Needs group is a failure for having divorced - I honestly have no idea if she and her husband received counseling or anything like that. With this sad story, I just felt an overwhelming need to get the statistics out there.

Before posting this, I wanted to get find some statistics to share about suicide, and even better if they could relate to raising a child with special needs. I didn’t find any that specific, but the majority of suicides are committed because of depression. And surely, raising a child with severe special needs can bring on depression. It is important to be aware of these facts; whether or not you are a special needs family or know of someone raising a child with special needs. The statistics need to be out there.

I’d imagine that the husband here took the child’s life as a way of ending his wife’s burden of being the majority care giver. Instead of helping her, he has devastated life as she knew it. Her only child and her daily routine are suddenly gone. I can’t imagine her grief and anger. It is just so unimaginable, but yet such a very real outcome surrounding some of the feelings one can experience raising these kids.

So, if you are the parent of a special needs child, or know a special needs family; check in on them from time to time. Make sure they are getting proper respite. Make sure they have coping skills and maybe even give them your ear to vent. The statistics are very real, and it is impossible to survive a life like this without help. If we are more conscious of the very real statistics, maybe sad stories like this would never happen.

OK, off my soap box. :)