Be Careful What You Wish For

Well, Friends, here we are again in the world of the unexpected and bizarre.

As of last update, we were waiting for Nathan to come off of some meds and adjust to the new meds in order to get a feel for his new baseline. Would he be better or worse than where he was 3 weeks ago? Our prayers have been for Nathan to become less sedated even at a price of more seizures. The last two weeks have been a series of ups and downs with bizarre behavior for which we cannot explain. Is it caused by some new type of seizure, a medication side effect, or something else? I have sat up with him night after night wondering if he is going to come out of what may or may not be a seizure and have driven myself crazy with worry and guilt for initating this medication experiement.


While waiting for the neurologist to return from his vacation, we tweaked his meds a little, but after a day or two, he would settle right back into a pattern of uncontrollable movement patterns with his arms, legs, and head, paired with constant moaning/crying vocalizations, lip smacking, irritability, and insomnia.


Ok - we did wish for less sedation. But we didn't mean this...


So, last week, we went in for an emergency EEG to see what was going on with his brain this time. My fear was that whatever we did, had made things truly worse. Low and behold - his brain waves have improved quite a bit. Most likely due to this new medication. We think this is the result we were hoping for, but nothing can ever be easy or simple with Nathan.


Which leads us to why the behavior change? We think it is probably due to one of three things (or a combo) - 1) a side effect of the new medication, 2) improved brain activity that allows the real Nathan to shine through, or 3) a movement disorder that was hidden underneath the fog of the seizures/meds.


The neurologist was quite pleased with the improved EEG results and said that often times when he fixes or improves one brain issue in a child, it creates a new issue that was always underlying, but masked by the other. And now, our sweet little, quiet Nathan may be a high maintenance, insomniac, that cries all the time. We now have to get to know the new Nathan.



We are again tweaking the med dosages and moving the sedating ones to bedtime in hopes that he will once again sleep through the night. We are adding melatonin and a muscle relaxant to help with the irritability and possible movement disorder. However, we have found that the muscle relaxant relaxes the heart and lungs too much, so that may not be a viable option for Nathan.

I wrote the above paragraphs several days ago, but forgot to post. As usual, Nathan has continuned to be unpredictable. We are getting a bit more sleep, thinking that the melatonin regimen is helping. Nathan is awake much more of the daytime (good thing), but he is often irritable still and sometimes cries all day and night for no apparant reason (bad thing). He is having fewer big seizures (good thing), but many more little myoclonic seizures (bad thing). His teachers are impressed with the new and improved (read ALERT) kiddo, but they do not sit up with him at night with worry. He has increased tone which helps with strength for holding up his head and pushing himself backwards in his gait trainer (good thing), but his increased tone is also causing tighter muscles and worsening torticollis (bad thing). We will keep plugging along and the only thing I'm sure of is that by the time I write again, things will be different.

Thanks for all the prayers and well wishes, and for following this recent saga of Nathan's.

Luv, The McCues

Nathan's Seizures

Hi Folks. Just a quick update to let you all know that Nathan is home. He actually came home late Friday night after I decided not to stick around with the night shift. As of my last blog entry, Nathan was having a lot more myoclonic seizures on day 3 of our experiment. We had added back one medication, and I was relieved that he had fallen into a deep sleep for the night. Well, Friday morning, he woke up and went into status grand mal seizures. It was very scary for awhile. After giving him high doses of valium, he calmed down and slept for a little bit (about 45 minutes). The neurologist then added back another med and adjusted his Vegus Nerve Stimulator to what is called 'rapid cycling'. That means that he went from getting 20 seconds electrical stimulation to the brain every 3 minutes to getting 15 seconds of electrical stimulation every 20 seconds.


Then he woke up, and began having status clonic seizures. The doctor added more drugs to get his brain to calm down. This experiement was about eliminating drugs, not adding. Ugghh. I can only say that when you are watching your child seize, you want nothing more than to stop it anyway possible. So, pumped full of drugs and now electrical brain stimulation every 15 seconds, Nathan decided to take another nap. The rest of the human population would have slept for days after all of that. Nathan woke up after 2 hours and resumed what I consider to be "just a crappy seizure day". That means it is not our favorite type of day but one that we are used to and know how to handle.


The neuro was leaving town for the weekend and wrote discharge orders to go home when we felt he was stable, yet offered to let Nathan stay the weekend given his instability. The night shift was not the most proficient, and his nurse was rather intimidated by his situation. The carbohydrates and miserable cot were wearing on me, so we packed up and went home at 10pm figuring that we can always call 911 if he went back into status seizures. The neuro also left me with a regimen of medication options should we not be able to stop a seizure with our usual means.


The happy ending here is that we stayed home all weekend, did not add any more meds, and his seizures have settled into typical crappy day seizures. It will take a couple weeks to work all the meds in and out of his system to see what his new baseline is. Until then...

Nathan's August Hospital Update

Hello Again Friends of Nathan! For those of you that follow along on Facebook, you may already know that I’m hanging out this week at the hospital with Nathan. This was a planned visit – not an emergency, but in many ways everything feels like an emergency with Nathan.

Nathan’s seizures have continued to be just as bad, and some days worse, than before the Vagus Nerve Stimulator was implanted in April. We have not seen any improvement from this device yet, however the neurologist continues to caution us that it can take up to a year to provide any benefit. We continue to hope and pray that he is right.

After many debates with the neurologist on medicating Nathan, we have decided to change the approach. Nathan has been on 4 major anti-convulsant medications for over a couple years and we still see between 25-100 seizures daily. On top of that, he has to deal with many of the undesirable side effects of these meds including sedation, excess saliva production (aspiration risk), gum overgrowth, impaired GI function, etc.. Our goal with Nathan has always been quality of life, and since he cannot tell us what he wishes in this regard, we base our judgment on our own desires. I truly believe that he does not wish to be highly sedated all the time even if sometimes I wish I could be sedated (LOL) and even if it makes his challenges easier to bear. My heart absolutely breaks each time I look at pictures of him when he was 2. Even though his respiratory health was much worse, he had a smile that could light up a room and his eyes were open & alert a lot. He moved his arms and legs to music and coo’ed when he was happy. Now, he is so mellow, sleeps alot, and rarely opens his eyes widely or smiles spontaneously. Even if he could be more awake & alert at the expense of incremental seizures, perhaps it is worth it to Nathan to get those simple joys back. We did not make this decision lightly, but did decide that we would try to quit the medications in pursuit of getting back Nathan’s personality.

So, that brings us to the hospital. It is impractical (per our experience) to slowly wean Nathan off of anti-convulsants at home. It takes too long, and we end up over-reacting to changes in seizure activity. We decided, with the neurologist, to put him in the hospital, hook him up to a video EEG monitor for a few days while taking him off of his meds in a cold turkey fashion. The downside of this method – well, there could be a lot of downsides – status seizures, shock, withdrawal, etc. But Nathan faces most of those risks on a daily basis anyway. Now, we don’t always see eye to eye, but as an experienced Epileptologist, we do allow our trusted doctor to call some of the shots some of the time. That means we have acquiesced to let Nathan switch to one new anti-convulsant through this process and pending the results of our experiment, are open to going back on some of the meds if necessary.

As I write this blog entry, it is late in the day on Day 3 of this experiment. Nathan has been taken off of his 4 original meds, started the 1 new med, and restarted 1 of the original 4. All was going quite well until today when we dropped my least desirable 2 meds. His seizures took a fast downward spiral. I’m not happy about that, but am glad to have the information that at least one of the two was possibly providing a significant benefit. Now figuring out which of the two, or perhaps the cocktail of the two is our next challenge.

The other discouraging tidbit is that this renowned epileptologist has never seen EEG results comparable to Nathan’s. Apparently when Nathan is seizing, his brain waves become more typical. When he is not seizing, his brain waves are very jumbled like you would expect to see when you are having a seizure. Now, how does one treat that? We still know that fewer seizures means higher quality of life, but even if we stopped the seizures, his brain activity would still be pretty messed up.

I don’t know what the next 24 hours has in store for Nathan, but we will keep chugging along to finish this experiment that we started with the best possible course.

I never imagined living in this medical world. Before Nathan, I only knew of the epilepsy you see in the movies. Before Nathan, I never knew that a person could have 100 seizures a day. I never knew that you could go into a seizure and not come out. I never knew that the smartest doctors in the world have no idea how to treat it, or that my child could have brain wave patterns that have never been seen before. I never knew the most absolute gut wrenching feeling that I got today when I overheard another family get a diagnosis of "infantile spasms" for their baby. I never knew how much research is truly needed in this field and am shocked at how many people I know today, 5 years later, that have been diagnosed with one or more forms of epilepsy.

To end on a lighter note, I’d like to share some hospital humor.

1) A healthy/fit looking man in his thirties takes the last remaining handicapped parking spot, which is also the only van accessible spot in a HOSPITAL parking lot. When I ask him if he is leaving, he says “No, just got here. Borrowed the placard from my Dad so that I could get a good parking spot” as if I'd be impressed with this illegal move. Then he asks me if I’d like him to move so that I can park my van and get my child out on his 5 foot wheelchair ramp. DUH.

2) I receive a Ketogenic diet hospital meal for Nathan. The ketogenic diet is a seizure control diet which consists of ZERO carbohydrates. On the tray is a lump of mashed potatoes, a huge pile of corn, and a side dish of ice cream. I do not think that is ZERO carbohydrates. Good thing that Nathan cannot eat orally. Perhaps the hospital dietician read it wrong and thought the diet was supposed to be ALL Carbohydrates. Either way, should they really be serving all those carbs to anyone?

3) A woman pushing her IV cart and coughing up a storm asks me to hold the elevator door for her so that she can go outside to smoke a cigarette.

4) And last, but not least, 3 medication errors in 2 days. Ok – so this one is not humorous. It is a public service announcement to not let your loved ones stay in a hospital unsupervised.

Well, that's it for now. Nathan has stopped seizing now for what I hope to be a good nights sleep. Good night to all.

Nathan's Recovery

It's taken me awhile to write an update on Nathan. He has been recovering quite well from his surgery two weeks ago. In fact, as of tomorrow, he will no longer be under any physical restrictions (imposed by the surgeon, that is). His incisions look great, considering. The first few days were rough as he had a tough time keeping medications and food down, and he ran a fever on and off for about a week. The worst part was removing the bandages after 4 days. They were stuck so tightly to his skin, that I think the pain of removing the bandages was as bad as the pain of the incisions themsevles. Since then, he has been doing amazing - he's such a trooper for what he goes through.

The VNS was turned on to a low constant voltage on Day 2 and will be increased every 1 to 2 weeks for the next couple months. The neurologist continues to tell us that we may not see any improvement for 6 months to one year, or even two years. That is a long time to wait to see improvement or even know if this was successful. But, we went into this all knowing and understanding that the success rate is not high for Nathan's type of epilepsy. We will just continue to hope and pray. There are other side benefits that may show over time such as improved behavior or mood and increased alertness. For now, his seizures are the same as they were before. Some days they seem worse and some days slightly better, but that is how it has been for the last six months.

The biggest challenge now is trying to find a rehab vendor to help us get new wheelchair straps for Nathan. The vendor that my insurance company switched to this year would see nothing urgent about a house burning down. Our earliest emergency appointment is still 2 weeks away. I was able to get my insurance company to agree to let us go back to our old company for his existing rehab equipment, but apparantly they don't want our business. After 2 weeks of phone calls and emails offering to pay cash, I cannot even get any response. So, in the meantime Nathan has to use inappropriate constraining straps. We have modified them a bit ourselves, but he really needs some that do not pull tight across his incisions or his newly implanted device. His only method of transport is by riding in the wheelchair in our van, so it is not an option to leave him out of the wheelchair in the meantime. What a frustrating industry!!!

We are now turning our sites to a much needed family vacation to Disneyland in early June. The last trip to Disneyland was wonderful for Nathan, his disposition, and his seizures. We look forward to another fun filled adventure. More to come on that later.

As always, thank you all for your kind words, prayers, and support as Nathan went thru this procedure. It is some higher power that keeps Nathan going and you are all part of that for our family.

Nathan's Post Op

Dear Friends & Fam,

Thank you all for your prayers and well wishes for Nathan. He made it through his surgery today like a champ. Everything went smoothly including the surgery occuring on-time despite an afternoon slot. The surgical procedure was a success, assuming all heals well. The success of the VNS will not be known for some time. We will have the device turned on tomorrow by the neurologist and will see where we go from there. We could see results soon, after a year, or not at all. I'm going to take the rainbow we saw on the drive home as a good sign that there is pot of gold at the other end of this journey.

We are thrilled with how today went. Anethesia is very scary for Nathan, and it went very well. He was taken off of oxygen about 1 1/2 hours into his post op recovery. Although he did not want to wake up for a very long time, we finally got him roused enough to bring him home. He's doing okay so far. He is very tender in both of his incision areas and unfortunately vomitted up his pain & seizure meds tonight at home. Hopefully we will be able to get some more meds in him in a few hours and keep them down.

We encountered some wonderful nurses and doctors today and were especially thrilled with the child life specialist that brought Nathan a CD player to listen to while waiting to go to surgery. Such a nice touch in the hustle & bustle of a hospital.

We are also so very touched by all the prayers and well wishes from all of you. Thanks to all of you of and an extra special thanks to Amy & Barb for taking care of Madison & Zach this evening.

We will post more when we know more.

April Update

Happy 5th Birthday to Nathan. Wow – it’s been an amazing five years for the little man. His birthday was over one month ago, on March 1st, and I’ve been meaning to post about his general well being and birthday ever since.

Nathan’s birthday celebration was pretty low key as he was still sick. As usual, we celebrated his birthday with the McCue clan. We also had a very nice visit with Auntie Glo from Indiana a week before his birthday.

Nathan was sick for 2 months starting in January, but dare I jinx it to say that he is doing better? He was on oxygen for 2 months which was a really long stint. We never got a real diagnosis or cause of his symptoms despite millions of tests. Ok, maybe not millions, but it sure felt like it. He would spike a really high fever every 2-3 days, was incredibly lethargic, and had constant low oxygen saturation levels. We ruled out pneumonia, and a host of other infections. So, we rode it out like most of his challenges and we are now enjoying his sweet disposition again.

Unfortunately the seizures are still really bad. Maybe worse than before the illness. It’s hard to tell. We took him off the new seizure med he started (the one with blindness as a side effect). We didn’t think it was helping and the timing coincided with his illness. Not saying there is a correlation, but definitely a coincidence. After we stopped the med, he began to get healthier. We may try it again down the road, but not right now.

Nathan's big news is that we finally have his surgery to implant a Vegus Nerve Stimulator (VNS) scheduled on Monday. Yikes! That's in just 2 more days. The procedure should be pretty straightforward (for a neuro-surgeon, that is), but the anesthesia is always scary. And then there is the risk of infection. And then he will have a device implanted in him forever. We so hope it works. This really is the last available option we have for seizure control at this point in time. We’ve done everything else and hope that if this does not work that medical research will progress to the point that we have a better treatment for epilepsy in Nathan's (and so many other children's) lifetime. It is so incredibly heartbreaking to watch seizures take away a little of someone's congitive development and life day after day.

We would appreciate your prayers and well wishes for a safe surgery, speedy recovery, and most importantly to Nathan - improved seizure control. He is very blessed to have so many people that love him in his life (and so are we). The surgery is scheduled for 1pm at Sutter Memorial Hospital on Monday.

Thank you as always....

I’ll post sometime after the surgery to let you all know how it goes.

February Health Update

Just a quick update in hopes that sharing bad news will turn our karma back around. Just a few days after I posted the last blog gloating about Nathan’s good health, he became ill requiring constant use of oxygen, suctioning, and TLC. The urgent care docs initially diagnosed him with pneumonia, but the pulmonologist disagreed. So, we put him through painful shots of Rocephin (1 in each thigh) at the urgent care center and then put him on another antibiotic which caused horrible diarrhea - all for nothing. Turns out he has a bad bronchial virus which has landed him back on constant oxygen and landed me back in battle with Apria, our DME provider, to get oxygen delivered, fix Nathan’s malfunctioning pulse oximeter, and deliver his other needed respiratory supplies. Arggg!

In the meantime, we started the new seizure med (the one that can cause blindness). My mental timeline was to give it 1 month and if there was no significant improvement we would take him off of it to preserve his vision. It is impossible to reach any conclusion when Nathan is sick as the seizures are usually much worse when his body is stressed. So, while Nathan has been battling a fever on and off, he has also been battling absolutely miserable seizures. In between, we will have a good day where we see only very small tonic seizures and think that the new drug is working. But my conclusion after 2.5 weeks on the med is that I have no idea if it has or if it is going to help at all. We don’t want to throw in the towel without good data, so I guess we will have to leave him on the med for longer to monitor.

Lastly, many of you have asked about Nathan’s surgery. It was scheduled for today – Feb 1st. But the illness has set us back at least one month. He will not be cleared for surgery until he is off of the oxygen for several weeks. No one knows when that will be since rebounding is tough for him. We will wait and see and keep all of you posted.

Oh – and one last complaint while I'm venting. My health insurance company dropped the Rehab company that has provided every last piece of rehab equipment for Nathan – wheelchair, hospital bed, shower chair, gait trainer, stander, etc. for the last 5 years. All of these items require constant maintenance and adjustments by trained technicians. The company we were working with was not spectacular, but it will not be easy to start over after 5 years. Nor will it be easy to obtain maintenance on our current equipment. I tried to schedule a wheelchair adjustment last week for his armrest that is jammed only to be told that the earliest will be mid-March. Huh?? Are they serious?? What about Nathan's arm?

WHO MOVED MY CHEESE?

Please keep Nathan in your thoughts and prayers for a rapid recovery / seizure improvement and me for the strength and patience to deal with all the health care bureaucracy while worrying about Nathan every second. Thanks for tuning in and following Nathan's journey. Nathan is blessed to have such a supportive network of friends and family.

Happy New Year

Happy New Year, Friends! Nathan’s blog has somehow turned into an annual update - our last update was right after Nathan’s 4th birthday and he will be turning 5 in just another month. Wow! The good news is that we have not had much bad news to write about it. So, what better way to start the New Year than to reflect on the blessings we have had through 2009.

Nathan had an entirely hospital-stay free year. Yippee. Nathan has remained stable in most every medical facet this year. He has also grown a lot. At 40 inches and 35 pounds, our everyday life keeps getting more challenging as he still does not help with any weight bearing or shifting. Nathan probably had a few mild & undiagnosed pneumonias in the past year, but nothing that made the radar screen. He was suspected of having the H1N1 virus, but he came thru it like a champ. And since the diagnosis was unconfirmed, we even took him to wait in line with the rest of Sacramento at a county clinic for the H1N1 vaccine (which is another story that I won’t even delve into). Despite a significant worsening of his bone density and a severe osteoporosis label, Nathan has not fractured any bones this year. And although we still carry an oxygen tank with us everywhere we go, he has rarely had to use it except when ill and while sleeping. I’m afraid to unbolt the tank from his wheelchair in case that jinxes us into needing it. His apnea has worsened, and the docs are considering removing his tonsils and adenoids to help his breathing. We will be doing some more tests to determine if this would be beneficial. Nathan’s hip dislocation progression has slowed down which means we are still holding off on any major hip operation. We will continue to re-assess every 6 months, however he is already sitting sideways crooked and one leg is longer now due to the amount of subluxation of his left hip.

Despite all the good health karma we have had this year, the one constant that hangs like a dark cloud over us is Nathan’s ever worsening seizure disorder. Nathan will experience a few good weeks on the seizure front (which means <20 seizures per day), but then he will have multiple bad weeks of up to 100 seizures per day. This seizure disorder (Lennox Gastaut) has a nasty reputation and seems to live up to its name in Nathan. All the functional gains Nathan makes seem to get wiped out when the seizures escalate. Our lives often feel like the movie “Groundhog Day” – the same thing over and over. Or one step forward and two steps back which is worse than Groundhog Day.

On the cognitive front, Nathan has been using an access switch placed next to his forehead for about 6 months now. This has been really cool to see progress. He uses this to activate adapted toys so that he can finally control (or play with) toys on his own. Unfortunately the selection of adapted toys for his functional level is not very diverse or exciting and is incredibly expensive.. He had initially started using his hands to push a hand switch, but he no longer has the strength to lift his hand, push a button, and release the button which are all crucial steps required to use a hand switch. Nathan also recently started using a communication device called the “Cheaptalk” for his school. I wish I could say this was working well, but it really is not yet. The device itself is not the most intuitive and every time you want to change what you are doing, it requires re-setting the mode and messages. We are trying to use it to help Nathan learn to make choices between two things or activities, but he still has a long way to go. We know that Nathan understands a lot more than his body allows him to convey so we just keep trekking along giving him the benefit of the doubt. For awhile Nathan was regularly responding to the phrase “I Love You” with a 3 syllable response that sounds like “I OOO UUU”. Unfortunately, this response is not as forthcoming now as either he is becoming an independent almost 5 year old or his vocalization skills are deteriorating from the seizures. I know it is the latter which breaks my heart every day. Nathan continues to absolutely love being read to, talked to, snuggled, and listening to all sorts of music (and especially his music therapist, Anne). He also enjoys walking around in his gait trainer even though he still needs a lot of support and assistance to make much traction.

We have finally made two gut wrenching decisions for Nathan’s course of seizure treatments. We plan to put him on a medication (Vigabatrin) that causes peripheral blindness. It has been offered to us for 3 years as a medication that holds the most hope for seizure improvement. But for 3 years we have declined it because Nathan’s limited vision is his peripheral vision. We have finally reached that desperation stage. Nathan will start this medication tomorrow when it arrives in the mail thru the FDA controlled pharmacy. The 2nd decision is that he will be going through surgery in a couple weeks to implant a Vagus Nerve Stimulator (VNS). This is a device that is implanted under the skin which delivers electrical stimulation bursts to the brain via the vagus nerve every few minutes – similar to a pacemaker for the brain. We have delayed on this option for a few years also as the neurologists can only predict a best case seizure improvement of 20-30% and it requires a surgery with all the standard surgery / anesthesia risks. Again – I can only say that we have reached that point where we feel that any upside is better than where we are at, even weighing the heavy costs.

The other good news for the year is that we are no longer battling with the school district (that is at least until next school year). We finally hired a professional advocate after fighting an uphill battle on our own for a year and a half. I think a combination of our advocate, the districts’ past blatant disregard for upholding the special education laws for Nathan, and a turnover in administration/staff enabled us to create an improved IEP (Individual Education Plan). There are many other options that we would like for Nathan, but for now we are pleased that the district finally provided assessments whose results semi-accurately reflect his abilities. Based on these results, we now have him on a “Home Hospital” program where his teacher, speech, occupational, and physical therapist all come to our home to work with him. Although it is sad that he no longer gets the benefit of the social interaction at school, he is much more alert during his education sessions and is getting so much more out of it. It is personally tough having so many people parade through our home every day of the week, but the benefits for Nathan are worth it.

Throughout everything, Nathan maintains the most easy going and sweet disposition. He is so accepting of new people in his lives – therapists, teachers, doctors, nurses, etc. and rarely complains except when he is ill. I wish I could say the same about myself (LOL). Madison and Zachary are both adjusting well too. Zachary has finally transitioned into a “big” brother role with Nathan where he is becoming protective and helpful. He loves to run wild with Nathan's wheelchair and we always have to keep an eye on what danger sport Zachary may enlist Nathan in when he is on wheels. Perhaps one day Zachary will run marathons with Nathan in tow. Madison is still extremely nurturing and supportive of Nathan. She is always cheering him on and will hang out with him for hours trying to entertain, make him smile, or help him play with a toy. She is convinced that she wants to grow up to become a "special needs teacher".

Our lives continue to be an amazing journey with Nathan for all the challenges and all the rewards. Thank you all for being part of that journey and for your thoughts, prayers, and cheers along the way. We will try to update after Nathan's surgery.