Sleep Issues in Children

If you go way back to the beginning of this blog, I brought over some links and articles regarding sleep issues in children. This is always a very big concern in our home, because of young's son inability to have good sleep experiences.

I realize I am jumping around a bit in this blog (yesterday, new apps, today sleep!), but I have yet to figure out how to put blogposts into groups and categories. Once I do that, this jumping from subject to subject will be better organized.

In my daily perusal of medical journals (yes, I have strange hobbies!), I came across these two article titles:

Cognitive Abilities May Be Affected By Childhood Sleep Problems Persisting Through Adolescence

and

Underlying Sleep Problem Linked To Attention-Deficit/Hyperactivity Disorder In Children

I know reading medical jargon and study results is not everyone's cup of tea, but when it affects your everyday life, you get smart and interested really fast. Basically, the sleep world finally woke up and realized that a lot of the issues with cognitive function and performance can be linked to faulty sleep habits, patterns and brain wiring/firing. In our case, my young son barely seems to have a circadian clock. He was diagnosed with Moderate Obstructive Sleep Apnea and Delayed Sleep Phase Syndrome. It looked like narcolepsy (before he got his CPAP machine) and insomnia, which is kind of impossible to have.

The big issue is that this has DEFINITELY affected his cognitive functions, executive functioning and memory. His short-term memory is shot and long-term is sketchy. He can not draw inferences and his brain stubbornly refuses to make leaps of connection from one subject (or even word!) to another related subject (or phrase!). Teaching him is very difficult (on bad days, I say it is non-existent) and I struggle to keep information flowing and relevant.

Okay, I am getting off subject. This is not about my son, per se, but is about awareness. Parents, please listen to me. My son went through the usual diagnosis of ADHD for years. However, though the behavior is similar, it is NOT the same disorder. My son remains unresponsive to ADHD meds. In fact, he is on Concerta (also took Ritalin for awhile, but made the sleep phase problem worse!), but it does not increase focus or attention. Makes him more hyper actually.

The point I want you to take away today is sleep disorders are very real. They have very real symptoms that mimic other disorders. And most doctors are not thinking "sleep disorder" immediately. This is changing.

I had the chance to attend a sleep conference last year in D.C. sponsored by the Sleep Foundation. There I heard the latest research into sleep disorders. Out of that meeting came the recommendations for doctors to begin asking questions regarding sleep for children as young as 2 years old, especially if there were hyperactivity symptoms.

Sleep issues are real. Here in the Unique Family, we live through it everyday. Three us (out of 5) wear CPAPs (hubby fights wearing his. Grrr!). All three have memory and cognitive issues.

Pass this along to anyone you think it might benefit. Also, let me know, anyone in your family/Friends that you are concerned about?

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Updates, Updates Part 4

Wow.

Life seems to have change 180 degrees since I last posted in this series of updates. I am still saving myself for last. This one will be on my sister.

Background? Okay.

My sister is 10 years younger than me. She used to be the "popular" one. You can tell I am an introvert and she was an extrovert, because when we were younger, people would say, "I didn't know you had an older sister."

I didn't go out much, loved to stay home, read and draw. She was the opposite. Ballet lessons, movies with friends, playdates, sleepovers. You name it, if it was an event, she was there and probably knew half of the people.

She was always battling with her weight. With diabetes heavy in my family, battling weight is not a good thing. I do, too, but her battle outstripped mine. But something else bothered me, but I could never put my finger on it.

I won't go into the hard years, even though I know they shaped who she is. Those skeletons can rattle, but I'm not touching them. Suffice it to say, by the time, she reached Baltimore with me in 2004, she was over 300 lbs, sick and barely working.

I won't pretend I know all of what is going on. For years, I begged parents and then my brother (who received guardianship over her once my parents were too ill to care for her) that someone have her tested. For anything. Something was wrong. She could barely hold down a job, only lived on her own once for a year and didn't have a car.

Did anyone listen? Of course, not. Judi is that flaky, weird, out there sibling who talks too much, thinks she knows everything and is always trying to get someone looked at.

In 2004, she came to Baltimore, having worn out my brother. She was nearly 30. I hit the ground running with her. Here are some doctors. Here is where to get a job or job training. You can stay with me until you get on your feet. Get to know a circle of friends who will be there for you. Get to know Baltimore.

Two years later, she was still with me, working part-time and had seen not ONE doctor.

I hit the roof. I was about to remarry, give up my little townhome and she had no where to go. This is painful to write, but my sister ended up in the system of homelessness for nearly nine months. I can barely write about that either. A sore spot for only God and I.

We had one good talk before she left in which I told her an old line from old folks who knew better. "God didn't make junk. You are worth something, even if you don't think you are. And, he didn't put you in this family to fail." She cried and it was then, I realized, my sister suffered from depression. Not the light dysthimic type, but full-blown clinical depression.

I again suggested help. And, let her go through that horrible process of homelessness.

It actually helped. She emerged more focused, healthier and motivated. She got a job as a live-in companion for developmentally disabled adults. She bought a car and started taking care of herself. So, I thought.

I noticed her falling asleep everywhere. I mean, sitting up, falling asleep. I pleaded. Get tested. This was after my young son's diagnosis of sleep apnea, and I was on high alert. So, she actually went. Yep, sleep apnea. She had over 40 apneas that night and stopped breathing for nearly 40 seconds. (!!!!) They put her on a CPAP machine and asked her to lose weight. It helped at first, with me insisting on strict usage. She became more alert and could focus better. But, that was not to be the end of her health trials.

July of 2008. I will never forget the month. Trying to get my family into some "culture," I took us all to the Myerhoff Symphony Theater to hear some video game music, played by a full orchestra and 30 voice accompaniment (in my house, you have to think outside the box all the time). The whole family went. But, that beautiful night that saw my aspie son enjoy his first concert, despite the crowds and noise, saw my chronically ill son walk the whole night WITHOUT using the wheelchair, saw my husband sit still and actually enjoy something other than tv, saw us also end up sitting anxiously in the hospital.

On our way out, I heard my sister call my name and as I turned, I watched her fall over and drop to the floor. She laid there for about 15 minutes and then said, I am okay and got up.

She was not okay.

*Sigh* This is hard to write.

The scans showed she had suffered a mild stroke. In fact, before the weekend was out, we would find out that she had suffered one before and three more while in the hospital. Five in total. She is 33.

Her blood sugar was in the 500s.

The doctors looked at her and said, if you don't change, you will die.

There was actually some good news. Each stroke was tiny and left no physical mark. But her memory and cognitive functions have deteriorated.

That was the beginning of change. This is long, so I can't go into everything, but today, she is learning to handle her diabetes. She is on several pills for blood thinning, diabetes and cholesterol. She uses that CPAP, even though the napping has returned after the strokes. She has lost over 30 pounds and is on the good side of 300. She is holding down her job and bought a car. Unfortunately, she still is not treating the depression like it should and is technically homeless as she either works or spends her weekends with us. Her things are still in storage five years later.

I don't know what I want people to take away from this post. This is so hard to write. I continue to stress to everyone, go to doctors. Don't like one, get another one. Treat all of your life, including your emotional one. Be proactive about your health. My sister will always be in danger of a massive stroke that could kill or paralyze her.

But in the end, I think I want to emphasize that depression and possible cognitive disabilities can go undiagnosed and untreated for a person's lifetime. That is what I believe is truly going on with my sister. I stress early intervention for children, so that help can be given early.

And, at the end of the day, we are still taking care of her. She is unmarried with no children. Another member of my little unique family.

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

Children and OSA

In between my posts about my family and our lives with chronic illnesses and disability, I will also post about sleep disorders and how they have affected us.

I love to find articles about sleep disorders and will post them here with links to the original article as well as other sources. Please feel free to comment or leave more information. I so want people to understand how much this can affect their lives or the lives of a loved-one.

Here is the first of many posts. Enjoy.

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Though OSA has touched two members of my family, one older and one still a child, I think it is VERY important for parents to know what to look for in their children if/when they suspect sleep disorders.

Children can suffer from daytime sleepiness, but more likely, will have hyperactivity and restlessness. This could be misconstrued to be symptoms of ADHD. I do not have numbers, but my son was one of the many who was told he had and "tested positive" for ADHD, when he had sleep apnea. We even tried a trial of medication (only lasted two months) with no improvement. The side effects were many and more disruptive (insomnia, circadian clock rhythm dysfunction, loss of appetite and headaches) than the hyperactivity.

Below an article reprinted from The Herald News which goes into detail on this very subject. Again, a note of caution for parents. If your child suffers from hyperactivity, don't wait for the doctor to bring up whether your child sleeps well or not. If you have any questions regarding your child's sleep, bring them up to the doctor and don't shy away from this. Sleep apnea is nothing to play with when it comes to a child.


Sleep disorders linked to child hyperactivity

March 19, 2008
By Denise M. Baran-Unland
Special to the Herald news

Talk to a parent with a 2-year-old who is bouncing off the walls and she might apologetically tell you, "He's just overtired."

Flash forward to that same child five years later and that same parent might wonder if her child is hyperactive.

The fact is, he might still be overtired.

Between 1 and 3 percent of children ages 2 to 5 years old have obstructive sleep apnea, according to American Sleep Apnea Association. Left untreated, a child might experience failure to thrive, a number of cardiovascular disorders and symptoms commonly related to hyperactivity, including problems with learning, attention and behavior."

I have a number of patients with complaints of learning disorders," said Dr. Mohammed Saeed Homsi, pediatric sleep specialist at Provena Saint Joseph Medical Center in Joliet. "They think that their children have ADD until I dig deeper into their history."

If they tell me that their child snores, stops breathing or has mouth breathing, I do a sleep study. The parents are usually very surprised that sleep apnea is the cause of their child's hyperactivity and learning disability."

While being overweight may contribute to some cases of sleep apnea in children, as it very often does in adults, by far the most usual cause is enlarged tonsils and/or adenoids, Homsi said.

Yet, because sleep apnea is rarely diagnosed in children, the American Academy of Pediatrics now recommends that all children be regularly screened for snoring.

Sleep study

If the child has signs of obstructive sleep disorder, the pediatrician may order a sleep study or polysomnography. During the study at a hospital or sleep center, the child wears several recording devices --the same as an adult would -- none of which is painful; still parents are required to spend the night with the child, Homsi said.

The recording devices include an electroencephalogram (EEG), which measures brain waves; an electroculogram (EOG), which monitors the different stages of sleep; and electrocardiogram (EKG), which measure heart rate and rhythm. The child will also wear chest bands that sense breathing, monitors that record leg movements and monitors to sense oxygen and carbon dioxide levels in the blood.

If the sleep study reveals the child has obstructive sleep apnea, enlarged tonsils and adenoids -- if present -- will be removed. If obesity is the culprit, the child may need to lose weight.

In certain cases, the child may have to wear an electronic device when they sleep. This is called continuous positive airway pressure (CPAP).While all this may sound scary, the good news is that, with treatment, the symptoms and consequences of sleep apnea are reversible. But if symptoms persist, further exploration is needed.

Obstructive sleep disorder is not the only sleep disorder to plague children and teens, Homsi said.

For instance, the child may suffer from periodic limb movement. Similar to restless legs syndrome, the child periodically moves his legs while he sleeps. This causes him waken from sleep without being conscious of it, Homsi said. Unlike restless leg movement, which is diagnosed from the child's history, periodic limb movement is diagnosed by a sleep study."He will be very sleepy during the day and he will not be productive during school," Homsi said. "Sometimes iron deficiency causes it and sometimes we need to give medicine to control the leg movements. It depends on the result of the sleep study."

(Sorry, I do not have the exact citation link for this page. I will search and try to put these in as I go along.