Updates, Updates - Part 2

I was going to talk about me or my oldest son, but lately, I have been so wrapped up with the situation around my youngest son, I decided to go with his updates next.

I am not really sure where I left off. There is a litany of disorders: Dysautonomia/POTS, Delayed Sleep Phase Syndrome, Moderate Obstructive Sleep Apnea, and Chronic Fatigue Syndrome. Now, add to that the podiatrist's belief that he has early degenerative bone disease (fancy way of saying arthritis) in his feet and ankles. He is only 12.

All of this adds up to one homebound child. No school, no sports, no friends over for long periods, and since he fainted after visiting a friend's house for only 3 hours on Saturday-waking up to not even remembering going to the friend's house, there seems there will be very little visiting out either.

With all of this, add: 1. the three medications (down to two as of today, since one was causing insomnia); 2. a supplement to safeguard the liver and another to lubricate those degenerating joints; 3. the physical therapy twice a week to keep his muscles going; 4. the special high salt diet; 5. the at least 2 liters of fluids every day; you would think that we would not want for anything from doctors or insurance companies.

And yet, we have been through 3 pediatricians, 4 neurologists, a cardiologist, a pulmonologist, an orthopedic specialist, a sleep specialist (she is still around), a developmental pediatrician (still hanging on), gastro doc (gone), and 3 behavorial counselors (all gone). Now add in the physical therapists and a podiatrist.

Then, last month, I received three denials. One was from Social Security. Yes, he has a disability, but it is not severe enough. Yeah, right. The second was from the insurance company that was positive giving him an electric wheelchair would suddenly result in injury, death and destruction. So, no, you can continue to push around a 200lb boy by yourself. And I have yet to hear the reason behind the denial of the orthotics for his feet.

You can imagine that I am steamed and deflated at the same time. This necessitates the dreaded appeal process.

The appeal process with its additional clinicals, special letters from doctors and 90 days of calling back and forth for feedback is a major drain. And, I was already slated to go through this, so we could drive to Virginia to see yet another specialist.

So, here on my plate is 4 appeal processes. Someone come and haul me away!

But, back to my son. He, on the other hand, had begun to adapt, and is finally showing signs that he will make the best of his sudden changes in life. Of this, I am proud. A year ago, I would have wondered whether we weren't going to need a brief stint in a mental ward. He had gone from a bright, sunny, almost athletic prodigy from birth until 7 to a zoned-out, lethargic, overweight depressive by 10, and by 12, a fainting CFS sufferer with the mind resembling what one counselor called early Alzheimer's. His emotions were so raw and scary that I feared for his sanity. A year of counseling got all of us to cope with what we still don't completely understand. We are all ready to do what we have to do, even though no two days seem to be the same.

He has a Home and Hospital tutor from the county that comes 3x a week for two hours at a time. I am certain that he is NOT on the same level as the other children but I don't remember my 7th grade World Cultures (it was called Social Studies back then!) either. He will understand some algebra, have read through a book of poetry and will master creating Powerpoint presentations. The fact that most of his memory is unstable every time he faints makes it more profound and miraculous every time he passes a test.

And... I shall embarrass him in cyberspace. He has an online little "girl" friend. Yes, puppy love comes to the Unique Family! You can't say her name without a smile coming to his face. "Finally," he gushes, "someone like me!"

My heart almost breaks each time he says it. I hold back the tears and say without a cracking voice, "Of course, you are wonderful. Who wouldn't like you?"

Then the mother kicks in. Will he ever be able to drive? Go on a date? Get married? Hold down a job? These are questions I may literally have to wait 10 years for answers to (80% of children with dysautonomia go into remission in their 20s).

Then I look at the stack of denials and instructions for appeals and remind myself of my most important job. Make sure he has what he needs to succeed now. One day at a time.

One more tidbit to this update.

As we were slowly returning to our car from P/T today, he lets me know that I should be proud that my "greatest" accomplishments were turning out fine. He was referring to himself and his brother. I balked for a minute. Ha! Will my children be my "greatest" accomplishments? How about my career and my writing and what I give back to the community?

"Nope," he said. "What could be greater than a human life able to stand on their own?"

I teared up again.

Nothing, my lovely son. Nothing.

Updates, Updates - Part 1

Lately, this blog has centered on me. Sorry about that. Maybe it is me all the time that needs the most advocacy! LOL!

Today, I want to start giving the updates for everyone else in the house.

Let's start with the hubby. He's Stubborn. As you can see, he needs a capital S.

We have had the CPAP for three weeks now and do I not wake up every morning between 3am and 6am, because he is tossing, turning and NOT wearing the mask!

The first reason/excuse is that he keeps forgetting. The second one was it was suffocating him. Huh? How can something supplying oxygen to your lungs, brain and body suffocate you? He has a full face mask and anybody who has every seen these things knows they are huge. Not the thing to feel claustrophobic in.

I reminded him that he needs to wear it at least 4 hours a night for it to even be effective...

The third reason/excuse came after my speech. "Well," he said, "I must be doing at least 4 hours, so that's why it is off by the time I start waking you up."

You have to have been there to see my blank, staring face. "How can you have it on for 4 full hours, " I retorted, "if you don't go to bed until 12am or 1am!?!" "And, then start tossing by 3am!?!"

Do you know the old saying, "Charity starts at home?"So does advocacy.

So, we then had a good sit-down with the other two Hosers in my house and everyone contributed to the conversation. I sat in the corner like a determined arbitrator and advocate, armed with the computer ready to spew out the evils of untreated OSA. I really didn't need it. My two other Masketeers know first hand what can happen. By the time, they finished with him, he slunked away, like a properly admonished child and the next night, I slept until 7am!

I want to really celebrate, but this is not over. Why, with the amount of Depakote he takes is he still having breakthrough seizures at night? And, if he is feeling like he can't breathe, are they exacerbating his condition or because of it?

His neurologist told me, we may never get it where he is seizure free. Why? I think it is time for a follow-up and ask some hard questions.

As for the anxiety/depression disorder, he is AWOL on that, too. Hasn't seen the therapist in months. In his defense, we have been a little tight and the therapist cost $40.00 each visit. But he has also stopped the meds.

*Sigh*

To give him credit, he has not slipped back into the mood swings, which were surreal and dangerous to watch. But, he is also not advancing. He is battling this condition alone. Not good.

Here's where if anyone has suggestions, I am willing to listen. I still believe he has so much to offer, but is stuck. Like a broken record (remember those? No? Okay, like a scratched DVD) that can't get past a certain spot. Anything anyone thinks they can suggest, please do.

Tomorrow, I will discuss Andrew, the light of my life and I think, my greatest accomplishment.

Take care,

Judi

Kids, Sleeping and Cognitive Functioning

Okay, I hadn't planned to put to articles about kids and sleep back to back, but this is an exception.

This article below outlines what I believe destroyed my son's life as we know it. I know that sounds dramatic, but we are trying to build a new life where the old one is going, going, gone. I don't get angry about it that much anymore, but I believe, if one doctor had asked me about snoring and sleep issues or paid attention when I DID say something, my son's life might be different right now. Notice I said, "might." No one knows, but with the information I have now, things could have been very, very different.

Please read and pass on to anyone you think needs to know this.


Cerebral oxygen saturation linked to cognitive function variation in children with sleep-disordered breathing.


By David Holmes

14 October 2008

Am J Respir Crit Care Med 2008; 178: 870-875

MedWire News:

Factors influencing regional cerebral oxygen saturation may interact to explain the sources of variability in cognitive function of children with sleep-disordered breathing, researchers report in the American Journal of Respiratory and Critical Care Medicine.

About two-thirds of children with snoring or obstructive sleep apnea (OSA) have some level of cognitive deficit. "However, the frequency of apnea events during sleep does not predict cognitive deficit and does not correlate with the degree of cognitive deficit,” Raouf Amin (Cincinnati Children's Hospital Medical Center, Ohio, USA) explained.

He continued: “Such a paradox raised the question of whether there are some variables that we do not traditionally measure in the sleep laboratory that might modify the effect of SDB on cognition."

To investigate further, Amin and team used infrared spectroscopy to measure the degree of cerebral oxygenation during sleep in 92 children aged 7 to 13 years, including 14 control children without sleep-disordered breathing, 32 with primary snoring, and 46 with OSA. The team also measured blood pressure and additional sleep diagnostic parameters.

They found that children with snoring had a significantly lower regional cerebral oxygen concentration than healthy children. However, paradoxically, they found that children with OSA − usually considered a more severe from of sleep-disordered breathing − had significantly higher regional cerebral oxygen concentrations than children with snoring only, and higher levels than controls.

"During normal sleep, when breathing appears to be stable, there seems to be higher oxygen in the brain among children with sleep apnea compared even to normal children," said Amin.

The finding may be attributable to the fact that sleep apnea raises blood pressure, according to Amin. "Children with sleep apnea have higher blood pressure compared with children who snore. This may explain why paradoxically we find higher oxygen levels in children with OSA."
David Gozal (University of Louisville, Kentucky, USA) wrote in an accompanying editorial that the findings showed that “neurocognitive deficits are not just in the brain matter but involve the cardiovascular system as well."

"By taking into account the role of blood pressure in regulating the amount of oxygen concentration in the brain, we might have a better understanding of the relationship between sleep-disordered breathing and cognitive deficit," concluded Amin.