Eat Happy!

Eat Happy!


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Friday, October 12, 2012

Dancing to Elmo

Before Ian's sleep study

YouTube Video

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Cruising in the Firetruck

Having fun driving

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Doing Nebs during Virus

Treating viral induced asthma

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Dinosaur Cruising

Having fun with the Dinosaur

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All in a Week's Time


I suppose Ian’s sleep study went as well as a sleep study could. He hated the “prepping,” of course and didn’t enjoy sitting for 15 minutes while everything was being set up. He looked like one of those electrostatic balls with all the beams of voltage sprawling out everywhere. There must have been 25 electrodes. That doesn’t sound like a lot, until you put them on a two year old.

The electrodes are attached with stickers on the skin, and conducting paste on the scalp. It reminds me of the paste we had a kids with the paddle applicator attached to the lid. It was sort of gritty and clumpy. He also had to wear 6 electrodes or so on his face, adhered by stickers. He really loved those!!! The ones on the skin seemed to be more of a nuisance than bothersome. When they were all in place, the technician wrapped a gauze bandage around his face and scalp to keep the electrodes covered. He looked like the cutest little mummy I had ever seen. The gauze even covered his ears and chin. Only his eyebrows to mouth were uncovered. The lady then took all the wires to the back of his neck and twisted them, much in the way an electrician ties all the wires together. Velcro kept them in place so they wouldn’t tangle him during the study. He also wore two small velcro belts around his chest and belly. These monitor movement from breathing.

Ian at the Sleep Study shortly after the small nosebleed

Once that was completed, it was time for bed. I knew Ian was going to have trouble calming down. I stayed next to him for a while until he fell asleep. It wasn’t too long. He was tired and had exerted himself a bit being upset from the prepping. Ian sounded snuffy shortly after falling asleep. I could hear the mucus moving around in his sinuses. I went over to check on him and found he had another bloody nose. He had been having a few the last couple of days. It seemed to be a combination of the tissue fragility from the oral steroids for the wheezing, the nebulizer usage to help him breathe, the cold windy air here on the east coast right now, and the sensitivity from the viral irritation. Thankfully, it was a small nose bleed that only was a minor disturbance for him. He fell asleep again quickly.

Once Ian was asleep, I knew the nasal cannula and sensor were coming to monitor mouth and nose breathing, CO2 emittance, and O2 levels. I had a bad feeling. Ian couldn’t keep his NG tubes in at two pounds. I knew the cannula would be a problem. It went in smoothly while he was sleeping, but needed reinsertion a couple times overnight. The report stated “Difficulty accepting cannula.” It comes out four times in eight hours in a two year old that is constantly rolling around with all that crap on and it’s “difficulty accepting?” Whatever ladies.

In the morning, Ian was just as unhappy taking it all off as he was putting it on. It was mostly fear. The paste and electrodes are not painful, but are uncomfortable when not knowing what to expect. Ian was tired of someone “messing” with him. We did need to take a shower right away. The clinic had one where we could wash Ian’s hair and remove most of the paste. He didn’t like that much either. Soon, we were on our way home and he was happy to return to his own bed, own tub, and his own toys. 

Ready to go home after the sleep study

We were able to have the report read shortly after the study. As expected, Ian performed poorly. It seems that a combination of issues are concurrently causing problems. I’ll lie out the details first.

Breathing Patterns
-Obstructive Apnea: 0.1/HR
-Central Apnea: 1.2/HR
-Mixed Apnea: 0.0/HR
(Total Apnea Index 1.3/HR)
-Hypopnea Index: 9/HR
(Total Apnea-Hypopnea Index 10.3/HR)

Obstructive Apnea is airflow impedance or diminishment during sleep because of physical obstruction of some kind. Central Apnea refers to the cessation of the breathing signals from the brain. Mixed Apnea refers to the combination of the two together. Some degree, while small, is considered within normal limits. Hypopnea refers to shallow breathing. There are reductions in airflow but no cessation of breathing.

-Apnea and Hypopnea Related Arousals 7.9/HR
-Arousal Index 30.9/HR
-Arousal and Awakening Index 34.3/HR
-Spontaneous 11.1/HR
-Respiratory Event Associated 7.9/HR
-Periodic Leg Movement Associated 9.2/HR
-Total Awakenings during the study 26

Arousals are brief interruptions in sleep which occur from sleep related disorders, breathing changes, or can be spontaneous. Arousals bring you to a lighter stage of sleep. If the arousal lasts more than 15 seconds, it becomes an awakening. Ian’s arousal and awakening index was pretty high. The movement of his legs and hypopnea are greatly contributing to his ability to remain in a deeper, more restful sleep. The results show that Ian “woke up” 26 times in 7.6 hours.

Periodic Leg Movements
-Periodic Leg Movement Index (Sleep only) 16.3/HR
-Arousal Associated 9.2/HR
-Frequency of Periodic Leg Movements (Awake and Sleep) 28.3/HR
-Leg Movement with Arousal Index 15.3/HR

Ian was diagnosed with Periodic Limb Movement Disorder. This is very similar to Restless Leg Syndrome, but applies to sleep only. I noticed during the study that Ian was very restless and was moving his legs around a lot. They did seem to disturb him. It was interesting to see the correlation with apnea and hypopnea occurrences.

Oxygen and Carbon Dioxide
-Oxygen Levels between 90-98%
-Time under 92% 1.8 minutes, 0.4% of sleep time

Ideally, blood oxygen levels are above 92. Above 95 is considered excellent. I remember being in the NICU with Ian and watching the numbers drop into the 60s and 70s. The NICU alarms would beep at 82. it was great to see that Ian was keeping his oxygen levels up despite the hypopneas and apneas. Ian’s carbon dioxide levels did not accumulate. They are unsure if this is because of actual results, or because of his inability to keep the nasal cannula in for a specific period of time. Also, irritation from the cannula can create mouth breathing.

Sleep Stages
-Sleep Onset Latency (Time to fall asleep) 28 minutes was within normal limits
-REM sleep (dream sleep) Latency (onset) 215 minutes, normal 80-100 minutes
-Sleep Efficiency Decreased at 81.1%
-REM Sleep Total 13%
-Slow Wave Sleep (Stages 3 & 4) 9.1%
-Total time awake after falling asleep for the first time 75.5 minutes

Ian did not spend enough time dreaming in REM sleep. About 20% of sleep time should be dedicated to REM. The arousals and awakenings keep Ian from spending enough time in the REM stage. He also took longer to get to REM sleep... mostly because of the arousals and awakenings keeping him in early sleep stages. Ian only slept 81.1% as efficiently as he should be. He is not getting the rest he needs from sleep. Sleep stages run Stage 1, Stage 2, Stage 3, Stage 4, REM sleep. Stage 3 & 4 are considered slow wave, deep, sleep. As mentioned before, 20% of sleep is typically in REM sleep. Stage 2 sleep should include 50% of sleep. Stages 1, 3, & 4 encompass the remaining 30%. Ian spends 9.1% of his sleep in Stages 3 & 4, leaving over 20% for Stage 1, which is too much. Because of the arousals and awakenings, Ian spent too much time awake during the study.

The final conclusions stated that Ian has severe obstructive sleep apnea with sleep fragmentation. This mild-moderate-severe guideline is variable amongst clinicians. however, with the hypopnea included, Ian falls into the severe category. He was also diagnosed with periodic Limb Movement Disorder. We have yet to speak with anyone about this and I am curious to hear what they have to say, how this is correlated to the apnea and hypopnea results, and whether it is even something we need to be concern about.

Impacts on Functioning: Swallowing, Breathing, Speech

As we move on to how this affects Ian in others ways, many unforeseen correlations appear. I knew that the tonsils and adenoids would be causing swallowing trouble. We found out at the ENT a few weeks ago that they would be causing sleeping problems, as well as significant breathing problems. Recently, I discovered through a support group that many small children with severely enlarged tonsils and adenoids have speech delays. Without the resonance and oral-nasal ability to make certain sounds, speech is unable to develop the way it should. I realize this does not happen in all children.... but if there is a small chance, it probably effects Ian in some way. I imagine Ian’s entire oral-nasal-esophageal region has been held back by a combination of things, including ENT troubles.

Yesterday at Physical therapy, I mentioned the sleep study. I like every provider to know what is going on, even if it is not related to their specialty........... because it always ends up impacting Ian somehow. This was no exception. The PT and I had been discussing Ian’s issues with proprioception and spatial awareness, as it pertains to his body (more on that in a minute). As it turns out, Ian’s difficulty with knowing where his body is in space and how it relates to things around him, is exemplified by his disrupted sleeping patterns. When Ian does not rest well, his body is unable to calm itself during the day. He becomes accustomed to always being on the go and being at a “heightened” level of activity. Therefore, he seeks this during the day. He looks for stimuli and feedback that give him strong responses.

The PT explained it very well when she asked “Have you ever just been so tired that you couldn’t calm yourself down or relax?” On many occasions, I have been so tired that I couldn’t stop laughing, or even running around cleaning things. It is the same with kids. Even babies get “overtired” and then cannot calm down to fall asleep. This is the same type of response for Ian. She explained that as his sleep improves, we will most likely see an improvement in his sensory input/output.

Physical Therapy/ Occupational Therapy Details- Sensory
(Sleep, muscle movements, senses, pain, weighted vest, and SMOs)

We are very blessed to have an awesome Physical therapist would has a lot of experience in Occupational therapy as well. You may be asking why a PT would be treating Ian for these issues. The reason is that his shoulder girdle is weak. His muscles are not strong enough to keep his scapulas moving in the right direction. For example, Ian has troubles pulling things and holding himself up. If we place Ian on his belly and lift his legs, he will not hold himself up with his arms.

A good bit of this trouble is associated with Ian never crawling. However, I need to add that not all “non-crawlers” have these problems. Ian has a secondary issue contributing, the proprioception/spatial awareness issue. Also, his abdominal muscles are weak because of gastric surgeries. Another category we focus on is vestibular awareness (head). Having Ian lying down with movement, or hanging upside down helps him understand where his body is.

Some might say that these things are no big deal, and they will work themselves out on their own. Well, that’s great........ if they aren’t causing issues that are impacting other areas of life. Ian is struggling with muscle group usage and even sleep troubles because of it. This isn’t something to be ignored. The PT was explaining how kids like Ian have little perception of pain.

This is something we always knew was there. Ian has a very very high pain tolerance. While some of this is an internal “battle wound” from all of his medical aches and pains, some of it centers around his sensory issues. Ian often falls and cracks his head on things, cries for a minute or so, and then runs away. Case in point...... yesterday, Ian fell at PT and cut his forehead. There was very little blood. He ran over to get a kiss from mommy while he was crying, pouted for a few seconds, and then went racing down the hall to play on the balance beam....... meanwhile, I large goose-egg develops on his forehead. This was of no concern to Ian. He takes lots of falls and never seems bothered.

While many may think this to be normal, this next one seeks to prove otherwise. Ian is now in a head-butting phase. it doesn’t matter if it is people’s legs, couches, toys, or walls and chairs, Ian seeks strong feedback from banging his head. This is not good. Not horrible, but something to work on.

With Ian experiencing such high levels of pain at such a young age, there is concern about his perception of pain in the future. He may already be doing it now. With his sense and thoughts of pain developing, he isn’t learning an accurate sense of pain. What we find painful, Ian may blow of later in life. It is important for us to remind him what shouldn’t feel right. We once told a feeding therapist that it would be great when Ian is older and can tell us when his belly doesn’t feel good, or if his bowels are hurting him. She responded with “He may, but he may not.” She explained that what he is feeling has become “normal” to him and may not be described as painful down the road, because it is what he has always felt. If you have nothing to compare it to, you don’t know that it doesn’t feel right.

Ian is a child who is constantly exhibiting a large amount of energy and activity. While everyone says “That’s how little kids are,” and “Well, he’s two,” and “He’s just being a boy,” Ian is above and beyond that category a lot of the time. Sometimes he is very low key and the average active child. Unfortunately, a lot of the time, Ian is what they call a “hurricane kid.” With his body seeking constant stimuli, he isn’t always aware of what is around him, or what might be consider dangerous. As a result, he misinterprets things both ways. He will steer clear of things he thinks are harmful (gooey, cold, sticky things) and will ignore, or not realize things that are dangerous (running down stairs, climbing on unstable items, seeking excessive touch stimuli such as pain from a head-butt to mommy’s leg).

When Ian runs, he puffs out his chest, swings his arms rapidly, and lifts his head up to the ceiling. It is actually very adorable. But, finding out why he does this wasn’t so adorable. We are in the process of working with a weighted vest. These vest, or suits of amor as I call them, are designed to apply additional pressure and weight. The theory is that by exaggerating the sense for him, instead of having him seek it out, helps to make him aware of how his body should be while doing “normal” activities. Ian performs very well with the vest. The minute it is removed, he goes right back to the behavior. We are in the early stages of using this as part of his therapy. 

Example of a weighted vest

Ian sporting his awesome "armor" at PT-OT
Overall, Ian exhibits a lot of behaviors that purposefully seek high feedback. We are fortunate that they are limited to touch and taste at this point. He does not seem to have any visual, auditory, or olfactory sensory issues. 

On a separate PT note, Ian will be fitted for SMOs. The “supra-malleolar orthosis” is designed to correct loose, floppy, flat feet. Ian smacks his feet a lot when he runs and stomps for strong feedback. His feet are very flat from the hypotonia (low tone). The SMOs will help him create an arch in his foot and allow him to position them properly when he walks. Right now, Ian is rolling in onto the side of his foot because the arch in not strong enough to support the underside of his foot and hold it up. This position is called pronating. The SMO will fit inside of his shoe and comes up just below the ankle bone.

Ian never leaves a boring moments in our lives. We continue to move forward with whatever he hands us. He still smiles and has tons of fun, no matter what happens. he always ends up making friends with the doctors and nurses.

Preschool is going well. Picture day was today and it took a lot of convincing to get him to smile. Thanks to the Gymboree cheer “Hiiiiiiiiiiiiiiiip-Hooray” while we bang on our legs and then throw our hands up in the air, he finally threw out a smile. The virus seems to be moving on out, and not too soon. Today was the first day he didn’t have an enormous coughing fit when he woke up. We take it slow in the mornings and I let him call the shots on when he feels ready to do things.

The new food routine is working out wonderfully so far. It has been a few weeks since we started. With the exception of the virus-cold scenario, things have been running smoothly. The retching has ceased at this point and we are praying every minute of every day that it will stay that way. Ian is always changing things on us, so we never now what is coming down the pike next! 

Ian has picked out his own Halloween costume this year and has decided to be an Angry Bird.  it didn't take long for him to repeatedly pull that one off the shelf.  We are going to put store bags inside to poof him up a little, but here is a preview.

A "Not-So-Angry" Angry Bird

This is the cutest Angry Bird I have ever seen!

I know this was a long post, but it has lots of information included about so many issues, which all seem to be interrelated. As always, thank you for all the support and love. Please contact me anytime if you have questions or if you think your child may be experiencing the same trials. I’m always here to help! I have listed resources at the end of this post, but will also be including them in my PAGES that include resources.

Sleep Study Report:

Sleep Resources:


A Feeing Therapy Session

A small part of Ian's feeding therapy yesterday...... A so-so day.

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