Monday, November 11, 2013

Since Health Insurance has been a topic of conversation lately; let me tell you a story...

There has been a lot of talk about ACA/Obamacare and problems getting and keeping insurance ... It has me worried that this is just the calm before the storm.  Although we haven't had our enrollment yet, my employer has told me not to worry.  And I shouldn't have to - we get our health care through my employer which is a group of over 200 employees, and with that I pay through the nose for a decent HMO.  Usually, I love my HMO, however, recently we experienced our first problem that put Jenelle in a life threatening situation.

Insurance policies are changing everyday, and it seems we keep paying more out of pocket.  With an HMO, more hoops are added to jump through; especially when drugs that were once approved now need special "authorization."  Our problem started last month when I tried to re-fill Jenelle's Vimpat.  NOTE - Vimpat is not a newly prescribed drug for Jenelle, but rather a drug that she has been taking successfully for nearly 4 years.  When I went to Target on October 15 to get her monthly supply... by the way, I LOVE my Target Pharmacy (located at Irvine North on Jamboree in Irvine) for reasons that will reveal themselves as this goes on... I was informed that our insurance, Aetna, did not "approve" the refill.

At first, it didn't really phase me.  "Oh, I must be a week early" I thought.   I usually make a trip to Target Pharmacy, which is now 5 miles out of my way since our move, at least every two weeks to pick up Jenelle's medications.  I know their staff very well, and we are usually on a first name basis.  I left that day with the other prescriptions that were ready and didn't think anything of it.  When I got home, I realized we were down to 4 pills of Vimpat.  I was not early and something was wrong with the authorization. 

I went to Target the next day, and they tried to run it again.  Again, it was denied - this time, it said they were waiting for "authorization" paperwork from Dr. Shields at UCLA.  So, give that I had two days left, Target gave me 6 pills to carry us over a few days until the insurance glitch worked itself out.  Some pharmacies would demand I pay the full price and then reimburse me later.  My Target doesn't do that to me if only for the way that they truly care for Jenelle.  By the way, my Target (Irvine North on Jamboree) has two fantastic employees who really understand the ways of the insurance billing world.  Anna and Stephen.  Go there, ask for them and thank them for all they do for Jenelle.  So with a 3 day supply in hand, Anna and I agreed that she would call the doctor and work on it.  I thought nothing of it until I got the mail that weekend.

That weekend I received a 6 page letter from Aetna explaining that they were denying coverage of Jenelle's Vimpat... a drug that she has already been taking for nearly 4 years ... because,

"Coverage of the requested drug can only be authorized if:

  • The member has a diagnosis of partial-onset seizures.
  • The member has documented concurrent therapy with one of the following: Carbamazepine, divalproex dr/er/sprinkle, gabapentin, lamotrigine, levetiracetam/ER, Oxcarbazepine, Phenytoin, Topiramate, valproic acid, or zonisamide."
You've got to be kidding me, right?  Aetna presumes to know more about my daughter's seizures than her own doctor... who also happens to be one of the top pediatric neurologists in the world?!  Where the hell did they come up with this?

So, at this point, it just so happened that we were going to UCLA that week.  I went back to Target, told Anna I'd work on it too, and got another 6 pills for another 3 days.  At UCLA, I spoke to Dr. Shields's nurse Sue, and she pulled her file, found the paperwork - realized it had been completed incorrectly by an intern - and said she would take care of it.  On a side note... Sue gave me a sample packet of Vimpat, so we were covered for 7 more days, assuming it would be no problem to reverse the denial.  And yet, another week went by and nothing changed... Vimpat was still being denied.

After Halloween, we were still getting denied, even with UCLA filing a second appeal.  We were getting down right desperate as I was literally going to Target every 3 days for 6 more pills.  Finally, I made a call to Aetna on my own.  I got a really nice man named "Bob" who said he understood my frustration, and could fix it in 5 minutes if only the doctor would simply call him.  Well, we were delayed a bit as Dr. Shields at his staff were out of town for a seminar.  6 more pills to hold us off.  I was seriously getting frantic.  We absolutely could not afford the $1,260 out of pocket payment for the drug.  I am so very grateful to Target for their patience and their help. 

Soon, we learned that the second appeal was denied.  At that point I called Aetna again and arranged a conference call with Nurse Sue.  I explained to Aetna that stopping the drug cold turkey would put Jenelle into status epilepticus thus most likely landing her in the hospital in the PICU... and how would they like to pay for that?  Further, stopping a drug that was already working, and that she had been taking for nearly 4 years might ruin the effectiveness of the drug.  Nurse Sue chimed in that Aetna's denial of this drug was literally putting Jenelle in a life threatening situation and that if the Aetna would not approve it, her only advice to me was to get an attorney.  What do you know?  Aetna listened, but not without insisting that Nurse Sue provide a letter from Dr. Shields stating that the situation was life threatening.  Two days later.. APPROVED!  Almost in time for her November refill!

Sue and I agreed... Target was the hero in all this.  They not only spent lots of time dealing with Aetna, but they continued to provided Jenelle with her mediation, even if I had to drive 5 miles out of my way every 3 days to get it.  I am a customer for life!

And I realize, I am fortunate to have health insurance through my employer, and to not have to worry about the cancellation letters people are getting right now.  The scary thing is that this is only the beginning of the changes we are seeing in health care because of Obamacare.  I truly feel sorry for my friends getting cancellation notices... and in my gut I know, things are not going to get better anytime soon.  OK, off my soap box. 

As for an update on Jenelle - she had a grand mal the early morning after Halloween, and then vomited later that day.  Her absence seizures are still unstable, but we are thinking the grand mal was due to illness as opposed to the other things going on.  Still waiting for the Video EEG to be approved... hopefully we'll hear something soon, unless Aetna has other ideas!

Thanks for the continued prayers!

Friday, October 25, 2013

Updates from UCLA for Mommy & Jenelle

Yesterday, Jenelle and I made the trip to UCLA for follow up appointments.  Jenelle's appointment was first at 11:00, where we met with Dr. Shields nurse Sue Yudovin.  Of late, Jenelle has been very quiet and to herself.  Sue noticed immediately that she was not her usual happy self and wondered if it was due to seizure activity.  After a lot of discussion about recent events including our trip to CHOC via ambulance, we decided we need more information rather than simply increase medication. 

So, right now, Dr. Shields is going to order a 24 hour Video EEG to be done at UCLA so we can see if Jenelle is having sub clinical seizures that we are simply not seeing, or of there is any new seizure activity.  Her last Video EEG was approximately 3 years ago, so it's time.  We are hoping to get that done before Thanksgiving, but of course it all depends on insurance ... and the availability of hospital beds.  We also talked about the possibility of implanting a VNS (Vagus Nerve Stimulator) which could be used to stop cluster seizures instead of relying on Diastat and other meds. I think we approached the idea of the VNS a few years back, but it was put on the back burner in light of my cancer.  Of course, a Video EEG will be necessary to determine if she can be a canidate for the VNS, so we'll kill two birds with one EEG, hopefully!  We are going to keep her medication levels on hold for now in case we need major changes after we get more information from the EEG.  Please send some positive thoughts that this gets approved quickly.

As for me... my labs were perfect!  We still don't know about the results of my cancer screening as that takes a week or more, but most likely in light of my recent numbers, it will be clear - knock on wood!  As you may recall, I've been having bleeding and clotting issues recently that they were trying to stay on top of.  All of my clotting numbers were normal as were my platelets, so things are good!  I go back in 4 - 6 months for another follow up and am poised to hit my 5 year cancer free anniversary without a hitch! Wahoo!

That is all for now - I'll post more as we get a date for the EEG.

Tuesday, October 22, 2013

11 Years Old!

I know this is going to be a fantastic year for our Jenelle; after all, 11 is my lucky number so it has to be hers as well!  Wow, 11 years old!  8 years ago, I could never possibly imagine this day, yet here we are.

So, what's new for our girl?  Well, since our infamous ambulance ride to CHOC in early September for the 35+ minute seizure, we've still been battling too many cluster seizures (absence seizures).  So much so, Dr. Shield's Head Nurse Sue has decided to see us before our scheduled appointment in late December.  We will travel to UCLA on Thursday for that follow up.  As of now, Jenelle is completely off Felbatol, and on a fairly strong dose of Onfi at 15mg twice a day.  Since that status seizure in early September, we've used Diastat twice more, which is 3 times too many in the last 6 weeks!

THANK YOU to all who made donations towards Jenelle's goal for the CHOC Walk.  We woke up early last weekend and walked a 3K through the park... however, the best part of the walk was when Jenelle got excited to ride the tram... her favorite ride at Disneyland.  In all, she raised $685, and our team raised almost $2,000!  It was a wonderful day - here is a photo of our team:

Team Stradling Yocca Carlson & Rauth at 6:15 AM! 

On Sunday the 20th, we celebrated Jenelle's early birthday with family.  We had tacos... Jenelle's favorite... and an ice cream cake from Cold Stone Creamery!  It was a perfect!  Here are some photos for you to enjoy! 

Mommy & Jenelle

Jenelle & Daddy

Aunt Shelly holding Jenelle as we sang Happy Birthday

Oreo Overload Birthday Cake!

All the cousins - Anthony, Trevor, Aiden, Jack, Kiersten, Aunt Shelly and Jenelle

Thank you all for the love and prayers all these years.  I'll update again after our visit to UCLA. 

Friday, September 27, 2013

Almost to the end of Felbatol, and we are battling pesky cluster seizures

As we get close to the end of our almost year long wean of Felbatol, things are getting much more interesting with Jenelle's seizures.  This month, we've had a trip to the new CHOC ER via ambulance for a 35 minute absence seizure, and we've used Diastat twice. 

Our ambulance ride took place on September 7 during one of Jack's Pop Warner football games.  It was a very, very hot and humid morning, but not as hot as it had been.  Jenelle was somewhat hydrated and had just had her morning meds.  Under our Ez-Up, Jenelle took an interest in sitting with Grandma.  As we got her up from her chair, she fell to her knees and became very uncooperative.  After a few moments of trying to get her to stand, I realized she was having an absence seizures (petite mal seizure.) We began to time it, and Jenelle was unresponsive for almost 4 minutes.  She came out of it and was able to sit in Grandma's lap, but then started seizing again for another 3 minutes. 

Fortunately, Jack's football team had an EMT on stand-by and located near where we were sitting.  When Jenelle started a her third, lengthy absence seizure during that small 15 minute time frame, I knew we were going to need to administer Diastat.  We called over the EMT to help us monitor her heart rate after giving Diastat.  To my surprise he also had oxygen, so we used that as well.  Jenelle did not respond to the Diastat like she usually does, and did not seem to wake from her seizure state.  Once we approached the 9 minute mark, I called 911.  At that point, I didn't want her to fall into status epilepticus (constant seizure state), and was thinking that blood work and other tests would help us figure out what was going on.

I wish we had called 911 sooner than 9 minutes.  Because we were at the back of Foothill High School on the football fields, the ambulance had a tough time finding us and took almost 10 minutes to arrive.  So now, the one seizure was going on 20 minutes, not including the initial 8 minutes of short seizures she had before that.  Epilepsy advocates always tell you to call 911 after 5 minute for this very reason.  After the 20 minute mark, a seizure can start to inflict brain damage.

Once the paramedics arrived, I explained where we were in the seizure, and that I wanted her transported to our local Children's Hospital ER.  I was hesitant to give the second dose of Diastat because that would really lower her heart rate and oxygen levels, so I asked the paramedics what they wanted to do.  They weren't convinced that she was seizing - even though everyone knows that Mommy is always right, right?  They agreed to transport her but felt she was sleeping in a post-ictal state.  On our way from the field to the ambulance, I kept pointing out her twitching, and the electricity I could feel in her arm.  Her vitals were fine and her pupils were responsive, so the paramedics still didn't believe me.

In the ambulance, I insisted that we consider giving the second dose of Diastat.  The EMTs were still unconvinced that she was still seizing, but agreed to give her a smaller dose of Versed (3mg).  As the ambulance started out and was moving down the street; the EMT administered a needle into Jenelle's shoulder and started to inject the Versed.  Before he could finish the injection... Jenelle bolted into an upright position on the gurney, sighed, and was once again responsive.  This goes to show that you should never underestimate the parent of a child with epilepsy... we know our kids better than anyone!  The EMTs were stunned and said, "Well, I guess she was seizing! Mom, you were right!"  After a few seconds, she fell back onto the gurney and slept the rest of the way to the ER.  I overheard one of the senior EMTs talking later to a rookie EMT who had been on the job only 3 weeks.  The seasoned EMT said, "In your entire career, you may never see seizures like the one you just witnessed again.  Very rarely do they require transportation, and they are very hard to spot!" 

At the ER, they ran blood work and urine tests - both of which were normal.  They contacted Dr. Shields at UCLA, and he gave us instructions to increase her Onfi to 15mg at night, and 10mg in the mornings and to hold off on lowering the Felbatol dose another week or more.  Jenelle was released from the ER 4 hours later and slept most of the evening.  Ironically, one of our players had been at the ER for a broken arm just prior to our arrival.  Jenelle was wearing one of Jack's old jerseys, so when she arrived, a nurse saw her and said, "What's with the football kids today?!"

Jenelle did pretty well the rest of the weekend, and during school that week.  However, a week later on Sunday, she slipped into a 7 minute absence seizure at home (first a 3 minute seizure, then a 4 minute seizure less than a minute after.)  I quickly gave her Diastat and she came too much like she did in the ambulance.  I'm not sure how long she had actually been seizing at the football game the week before, so our delay in giving Diastat decreased the chance of our stopping the seizure.  Because I didn't wait at home, she responded much quicker. 

Since increasing the evening dose of Onfi, I felt Jenelle was starting to stabilize again as we were seeing less lengthy absence seizures.  On Monday, I decreased her Felbatol dose again, and towards the end of this week (including today) we are seeing more seizures.  I e-mailed Dr. Shields' nurse this morning, asking if she wanted to increase Onfi again.  She agreed that an Onfi increase would help, and that we need to see Dr. Shields sooner than our scheduled appointment for end of December.

During all this time, we also had Jenelle's annual IEP.  There are some things happening with that to update on, but this has been long enough, so I'll save it for later.  Last Sunday, we celebrated our niece Kiersten's 6th Birthday at the Santa Ana Zoo.  Jenelle had a wonderful time riding the carousel like a big girl.  I hang onto these moments of normal to help me through days when her seizures are out of control and I wish I could read her mind.

That is all for now.  Please say some special prayers that the coming weeks of the Felbatol wean are uneventful for our girl and her seizures.  I hope it's only the medication, and not the start of something new.  Thanks and I'll keep you posted!

P.S. I know that many of you are personal friends of ours on Facebook.  Prior to our trip to the hospital, we had plans that evening to attend my boss's 40th birthday party which was taking place on a boat in Newport Harbor.  The whole family was invited with kids too!  However, prior to that weekend, Brett and I agreed to make arrangements for a nurse to watch Jenelle at home that evening as we were not comfortable taking Jenelle on boat cruise on the water.  We had plenty of time before the party, and even hesitated about going.  However, Jenelle had been well drugged, was sleeping well and in good hands with a registered nurse.  We decided to go to the party as planned and spend a much needed evening with Jack. 

During our ambulance ride, I posted an update on my Facebook page asking for prayers because at that time, Jenelle was still seizing.  Now, if we are your friends on Facebook, and your "newsfeed" settings on Facebook are set to "most popular" updates instead of "most recent" updates; you will see updates that have the most "likes" and "comments" at the top of your newsfeed.  Of course, my post about Jenelle had an overwhelming amount of response, so my  update remained at the top of the newsfeed for many of our friends who's newsfeed settings are set to "most popular."   However, later in the evening, many were very confused when they later saw Brett and I post photos of the evening sunset, and about cruising the harbor with friends; thinking that we had insensitively left Jenelle alone at the ER.  Believe me, that was far from the truth.  I hope this information is useful about Facebook, as opposed to being defensive about our parenting.  Things change in an instant with a child with special needs.  We always appreciate the love, prayers and support we get from everyone... and we apologize for any confusion on Facebook.

Tuesday, July 30, 2013

Please excuse my absence... life has been BUSY!

Well, I know that I'm long over due for an update, especially when I log into the blog to type this update and can barely remember my password!  Gee, where did we last leave off?  End of April?  Wow, if you blink things change real quick!  I think to make it easy, I'll give you updates for each of us - Sit tight, this could be a long one!


Well, since the surprise of our new CP diagnosis, Jenelle has been going through multiple evaluation sessions with California Children's Services (CCS).  The CP diagnosis qualifies her for services, which we hope will become helpful in the future as she needs orthopaedic equipment.  While the areas where Jenelle falls behind are more prominent during such evaluations, I find it useful to review what she is doing and see how far she has come.  We are still waiting on the report from CCS, who finalized the evaluation on July 8.  The medication Dr. Rosenfeld prescribed for her movement issues seems to be helping her mobility.  He decided to continue it at twice the dose and she seems to be doing well.

On July 1, we saw Dr. Shields for our 6 month evaluation.  He was very pleased to hear that her seizures have remained under control while we've been decreasing Felbatol.  I mentioned that just before our visit, we were seeing more Absence seizures so he decided to increase her dose of Onfi to 5mg in the AM, and 10mg in the PM.  In the weeks since making that change, we've seen fewer seizures as a whole, which is always a great thing... which leads me to the next topic... MOVING!

The Move:

We had been renting our last home and we were on a month to month lease after our two year lease had expired.  To our surprise, just before Mother's Day the owner decided to sell and the home had 4 offers in three days - two of which were cash!  Welcome to the real estate market in OC!  Once again we had to scramble to find a single level home in Tustin Unified to accommodate Jenelle's needs.  Luckily, we found a wonderful single level home a mile away, but also in the high school boundary where we want Jack to attend High School.  Prayers answered!  The new home is lovely, bigger and allows Brett to have his own private office for work - something he didn't have before.  This is helpful as Brett seems to work more from home these days... I'll get to that in a moment.

So far we are settled in, and with the stable seizure control Jenelle is doing really well with all the changes.  Her room is bigger so I am keeping some of her toys in her bedroom and in her designated play area in the family room.  There are times Jenelle walks on her own to her room to play by herself.  She seems very comfortable, and very happy.

Oh yes... Brett:

For a few months now, Brett had been experiencing a lot of pain in his neck.  Shortly before the move, he started to notice his arm and left hand getting numb, with tingling sensations.  He decided to get it checked, and what do you know - he needed surgery!  Yep, Brett had a bone spur on his neck that was jamming into a nerve into his spinal column; thus causing nerve damage in his left arm!  Looking back, I wish I had gone with him to the appointment with the orthopedic surgeon.  You see, Brett and Jack are traveling to Cooperstown on August 7 for a week long baseball tournament. Brett is the coach, so when discussing surgery, he wanted to make sure he'd be OK to travel to New York.  "Sure" says the surgeon... 6 week recovery period, you'll be fine to travel.

Well, to say the surgery was uneventful would be an understatement.  It took place 4 days after our move, so to say we were a little stressed is also an understatement.  Remember that Brett was borderline Type II Diabetes?  Well, just prior to surgery, they checked his blood sugar and it was 290... fasting!  It also didn't help that he failed the EKG.  The anesthesiologist really wanted to post pone surgery.  His words, "You look like a fit 44 year old man, but on paper you are an 80 year old woman!"  Great.  After much debate, they went ahead with the surgery.  Brett wanted to be recovered by his trip to NY, or so he thought.  As for the Diabetes, he is on medication right now, but because of the pain medication he needs to take with the neck surgery recovery; his numbers are automatically going to be high.  He will take a baseline fasting blood test this Friday and we'll go from there withour regular doctor.  He is also seeing a cardiologist on Monday to get that checked as well.

As for the surgery - he can feel his hand again, and there is a different kind of pain mostly from surgery, but not like what he had.  Turns out, the surgeon placed 3 screws into the front of his neck to relieve the pressure on the spinal cord, and he is wearing a neck brace and restricted from driving until our next visit in OCTOBER!  Yes, this is why I should have gone initially... to ask these types of questions.  Well, he is doing well, working from home and actually with Jack on summer vacation, it helps that he is home with him.  The only big problem is that he just can't drive.   


Jack has had a pretty good year so far, and thankfully even though we moved to a new school boundary, he will get to stay at Utt Middle School for 7th and 8th grade.  He really didn't like the idea of changing to a new school with the move, and for a moment he looked like he was going to have to move to a new school, but thankfully it all worked out.  What middle-schooler would want additional angst in changing schools?

Jack finished his last year of Little League and although he was voted onto the All Star team, Williamsport wouldn't approve his playing with the All Star Team at our new league.  He was asked to practice with the All Star team and we supported them at every game.  I can't believe the Little League days are behind us with Jack, and that he will be starting high school in two years.  He is growing into an amazing young man, and really, really loves his little sister.  I couldn't be more proud of him.


Well, if you recall, I went off the "happy pills" back in August.  Well, the depression creeped back and hit me pretty hard in April and May.  During this time I was also suffering from a lot of sciatic back pain, and of course the stress of the impending move.  I finally bit the bullet and realized that my life is not normal, and that given all the stressors I have in life, anti-depressants are going to be a necessity.  I had my 6 week follow up with the doctor last week, to see if the dose was appropriate.  As I sat there and told the doctor with a laugh and smile about our recent move, Brett's surgery, my being the family taxi driver, and God knows what else; she smiled and said "If you can sit there and laugh and smile about all this, the pills are working - I've sent in your re-fill!"

People always say that I share so much of our lives here at this blog, when in actuality... it's not even half of what is really going on in our lives.  I do realize the world is reading, and I do hold back lots of personal things.  However, I am willing to share issues like my depression because I know for fact, from comments and e-mails, that many of you are in similar situations.  Just knowing someone else is going through something similar can help.  I hope I am that hope for anyone in the same position.

And finally... while I am still cancer free, I've had some issues of concern that led me back to one more visit with Dr. Territo before her official retirement.  With the back pain came new bruising and fatigue.  I have been bruising in random places like behind my elbow, and on my chest, etc.  Well, having survived blood cancer once, I don't take these symptoms lightly.  UCLA agreed and got me in for a follow up very quickly.  They ran some blood work and found that I am having some clotting issues (Iron Binding Capacity, Ferrtin and possible DIC).  Now, this could be related to lots of things like all the pain killers and Aleve I had been taking for my back pain; or it could simply be how my body is reacting post-chemo/post cancer.  I have a follow up in August and we'll know more then.  For now, don't worry unless you have something to worry about! ;)


As a bonus for not updating in a while, here are some photos for you to enjoy! Thank you as always for the positive thoughts and continued prayers. I'll keep you posted - I promise!

Here I am with the doctor that saved my life - Dr. Mary Territo at UCLA. She officially retired as of July 1, 2013~  I will follow up with a new oncologist in August. And yes, I am holding a kleenex because I broke into tears when she told me she was retiring!

Brett and Jack after Jack's last official Little League game.

Jenelle on 4th of July.  Sitting so pretty and tall.

Jack on 4th of July.
Me and Brett (with his neck brace) on 4th of July.
Brett's neck after surgery. (He's taller too!)
Brett's first trip out to dinner after surgery.

Slider our cat enjoying the new back patio.

Jenelle bowling with cousin Alison.
Jenelle with her YMCA Aide Geri and a snake!

(This blog update took me 4 days to compose!)

Monday, April 29, 2013

Orthopedic Evaulation

Jenelle had an appointment this afternoon with a new orthopedic doctor.  We were referred to Dr. Rosenfeld at CHOC because Jenelle's last Scoliosis x-ray showed a slight curve, and of course, we've been dealing with her para paresis (left leg shorter than the right).  If you recall, Jenelle was diagnosed with this last July when we realized her leg was an inch shorter, and foot a shoe size smaller.  At the time, she was fitted with an ankle brace to keep her longer leg from pulling inward, and a lift in the other shoe to help her balance out.  Unfortunately, we lost the lift a few months ago, but Jenelle has been managing well without it.  Also, Jenelle has had quite a growth spurt since the new year, and I was thinking her legs have finally caught up - it appears I was right!

Jenelle has never been followed by an orthopedic doctor and I was pleased to finally get some answers today.  The new doctor said that Jenelle's legs are now even, but her left foot is still a bit smaller.  That can happen to anyone really.  We had a new x-ray today to compare to the last one took in August, and as it turns out her back is straight and fine.  Of course, because of her issues, we will want to keep an eye out for future scoliosis, but for now she is fine.

And now, for the unexpected ... Jenelle has a new diagnosis!  Or really, not new, as she has probably had it since birth.  Dr. Rosenfeld says that Jenelle has Cerebral Palsy.  Now, I know lots of special needs kids that have CP, and Jenelle does not seem to have the spastic problems I see in these other kids.  Well apparently, there is not just one type of CP.

"Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age threeResulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception, and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases."        

Now, Jenelle has never had an official diagnosis - i.e. we do not know what causes her seizures.  We've determined her seizure type (Lennox Gastaut Syndrome), and that her brain in normal on MRIs - but no "official" underlying cause.  CP is not the cause of her epilepsy, but the way CP affects her movements and muscle coordination, could be caused by whatever happened during pregnancy, birth or after.  The good news - her CP will never get worse than it already it.  The better news, a CP diagnosis will finally get Jenelle services from California Children's Services (CCS) which will help us with equipment expenses in the future, if needed.  Dr. Rosenfeld had me complete the CCS application and said he would submit it on her behalf.  All good news.  Dr. Rosenfeld wants to start Jenelle on a very small does of Trihexyphenidyl.  This drug is used to help muscle coordination and might be helpful to Jenelle in allowing her to have better control of her muscles.  We will see him again next month to follow up.

In other news, the wean off Felbatol is going really, really well (knock on wood) and Jenelle has had very few seizures if any in recent days.  We're just about to end our baseball season with her Challenger Team, and making decisions about her school placement next fall.

That is all for now - I'll keep you posted.

Sunday, March 03, 2013

Life is moving right along...

I'm sorry to leave you all hanging.  2013 seems to be keeping pace with 2012, and moving all too quickly.  Here we are in the beginning of March.  Jenelle is doing very well health wise, and very, very well with the Felbatol wean (knock on wood!)  We honestly haven't seen any seizures since Winter break when she was fighting the flu.  It's so wonderful to have some seizures control again.

We have encountered some compliance issues with our School District regarding Jenelle's IEP and program placement.  We have an IEP meeting on March 21.  I truly will never understand why a school district would drop the ball and drag their feet in providing appropriate services for a special needs child as complex as Jenelle.  You can be certain that I've channeled my inner "momma bear" so that I can fight the good fight for Jenelle.  Until the matter is resolved, I will not mention specifics here.  Your prayers of support would be most appreciated. 

In other news, because Jack has moved to a new league to finish his last season at Tustin Western Little League; Brett and I have started a new Challenger Division baseball team there as well.  Opening Day was last Saturday, and we had our second game yesterday.  We have mostly new players to the program registered with this team, and lots of enthusiasm from a very supportive league who is hosting the team at no cost to the special needs families.  Being a part of the Challenger League has always taught me that kids struggle in different ways.  It's wonderful to see them so excited to be a part of a team, and to get to play baseball.  Here are some photos from yesterday's game.

Jenelle enjoying lunch after her game.
JD being Buddy to his friend Lincoln.
That is all for now.  Thank you for the continued positive thought and prayers - please keep them coming for our IEP on March.  I'll keep you posted!

Monday, January 07, 2013

Happy New Year! Latest follow up at UCLA

Happy New Year!

We had a lovely Christmas and New Year's Holiday.  Jenelle really enjoyed playing with new toys and just cuddling with family.  I share photos from the holidays at a later time.

Jenelle had a follow up appointment at UCLA today with Dr. Shields.  He was pleased with our report that her seizures have been under control with Onfi.  I told Dr. Shields about Jenelle small regression on goals from her chaotic seizures earlier this year and that I wanted to give her some more time to catch up.  He agreed that it is good to have the seizures under control, and thinks it's time to see if we can wean her off one of her medications.  I felt that when we tried to wean from Vimpat earlier this year, it made her seizures worse, so we both agreed that Felbatol is the medication we should try to wean.  Felbatol has the worst side effects with potential damage to her liver and other organs, and she's been on it the longest.  Dr. Shields also feels it is important to get off Felbatol before she officially starts puberty.  So, we are going to slowly, very slowly start to decrease her Felbatol to see if we can lower the dose and maintain seizure consistency.

Everything else was good for Jenelle - she weighs 68 pounds and is 53 inches tall.  When Dr. Shields walked into the room, Jenelle reached her hand out for his.  It was very sweet.