Sleep Study: The Results

I met with the sleep study doctor Ajayi (MD, FCCP, FAASM, D, ABSM... to be exact) yesterday. He said the same thing that all doctors say about Jett: "He is the most (fill in the blank) of any child with DS I have seen in my career." In this case, it was "the best sleep study results" he'd ever seen in a person with DS. To understand why I requested the sleep study, see Jett's Sleep Study: Mommy's Nightmare.



General Sleep Info:



During sleep, we pass through five phases of sleep: stages 1, 2, 3, 4, and REM sleep. NREM Stage 1 is very light sleep; NREM Stage 2 has special brain waves called sleep spindles and K complexes; NREM Stages 3 and 4 show increasingly more high-voltage slow waves. In NREM Stage 4, it is extremely hard to be awakened by external stimuli. The amount of time spent in the deepest stages of NREM (Stages 3 and 4) change from childhood through adulthood. In fact, this change is prominent during adolescence, when about 40 percent of this activity is lost and replaced by Stage 2 NREM sleep. In addition to these changes, the percentage of time spent in REM sleep also changes during development. Adults spend almost 50 percent of their total sleep time in stage 2 sleep, about 20 percent in REM sleep, and the remaining 30 percent in the other stages. Infants, by contrast, spend about half of their sleep time in REM sleep. According to the chart below, a child Jett's age would spend 30% in REM sleep on average.









Sleep in DS:



Although obstructive sleep apnea is seen in only 0.7 to 2 percent of all children, a previous study based on 53 children and adults with Down syndrome between the ages of four weeks and 51 years old (an average of seven years old), found an incidence of sleep abnormalities as high as 100 percent in some cases.



In untreated people with DS, the REM sleep is greatly diminished. Their REM may be in the 2% range. Subjects with DS show a significant reduction in percentage of REM sleep, a marked delay in first REM latency and a statistically significant decrease in high-frequency rapid eye movements during REM sleep. The percentage of REM sleep in humans can be considered as an index of brain "plasticity" and the high-frequency REMs can represent an index of the brain ability to organize information, which is vital for learning and memory.



Also, children with DS show a clearly decreased peak amplitude of growth hormone during sleep; this causes the poor physical development in these subjects and might be related to the occurrence of sleep apnea. Obstructive sleep apnea has also been repeatedly reported in these children; however, if obvious risk factors are absent, children with DS tend to show the presence of central sleep apnea which is caused by a probable dysfunction of autonomic control at a brainstem level.



In people with DS a significant occurance of central, as opposed to obstructive, sleep apneas was found which also showed a significant age-related increase. Central apneas were mostly preceded by sighs, occurred more frequently during sleep stages 1 and REM, and were often organized in long sequences of periodic breathing. Sleep structure was not significantly modified by apneas and oxygen desaturation. It is hypothesized that the increase in central sleep apneas is related to a dysfunction of central respiratory control at the brainstem level in DS (Ferri et al., 1997).



The presence of central sleep apnea induced a further significant increase in low-frequency and very-low-frequency components of heart rate variability, similarly to the effects of the presence of OSA already described in the literature (Schiomi, Guilleminault, Sasanabe, Hirota, Maekawa, et al., 1996).



This final study is additional evidence for impaired brainstem function in DS which is demonstrated by abnormalities in brainstem auditory evoked potentials, abnormal presence of central sleep apnea and impaired balance between sympathetic and vagal control of heart rate variability during sleep.



Finally, the altered balance between the sympathetic and vagal systems can be viewed also in psychophysiological terms, following the ideas of the so-called "Polyvagal Theory" (Porges, 1995) which states that the vagal system does not represent a unitary dimension and is formed by two distinct motor systems. The first one is the "vegetative status" originating in the dorsal motor nucleus, associated with passive automatic regulation of visceral subdiaphragmatic functions, the second is the "smart vagus", originating in the nucleus ambiguus (NA), associated with the active processes of attention, motion, emotion, and communication, with supradiaphragmatic target organs. Thus, the changes reported in the autonomic function of subjects with Down syndrome, together with the already reported changes in central control of respiration (Ferri et al., 1997), might be physiopathologically connected with the basic mechanisms of their developmental psychomotor problems.



Jett's Results:



Sleep summary



The total time in bed was 411.5 minutes. With a total sleep time of 306.5 minutes. Sleep onset latency was 59.5 minutes (The normal time he goes to sleep was an hour after lights out.) with a sleep efficiency of 74.5% (nl>85%). The percentage of sleep time spent in stage N1, N2, N3, and REM was 15.7, 39, 23, and 22.3% respectively with an REM latency of 87 minutes (nl 75-120 minutes). The patient had an arousal index of 10.8 (nl<12) with an arousal awakening index of 10.8 (nl<15). The number of REM awakenings was 0.



Cardiac summary



The average heart rate asleep was 102 bpm. EKG showed normal sinus rhythm.



Respiratory summary



The baseline oxyhemoglobin saturation was 96% with the lowest being 93%. The percentage of sleep time with oxygen saturations between 90-100% was 100%. The apnea index was .4 (nl<1) while the apnea/hypopna index was .4 (nl<1). There were a total of zero central apneas, 0 obstructive hypopneas, 2 obstructive apneas and 0 mixed apneas recorded. Sleepiness scale was 11. (Maybe because he falls asleep in the car and because he may fall asleep if you lay him down in the afternoon?) Toddler/DS snore scale was 4.



Apnea index .4

Apnea/hypopna index .4

Lowest respiratory oxyhemogloblin desaturation 93% with obstructive apnea

Arousal awakening index 10.8



Movement summary

The plm (periodic leg movement) index was 2 (nl<5) The plm arousal index was .4 (nl<5)



Interpretation:

This was a normal study the patient has primary snoring with sleep fragmentation.



Suggestions:

Followup with sleep clinic for further evaluation and management at age 3.



Dr. Ajayi said that he woke up 11 times an hour (sleep fragmentation) when 10 times is normal for a child his age so it's nothing to be concerned about. He said he had adequate NREM for the growth hormone to be released and the highest REM of any DS child he had ever seen (in 11 years).

As for snoring, Jett doesn't snore. He did a little that night because he had been crying for an hour and therefore had some congestion..

Would have liked the REM to be 30%, but I can't complain about 22.3%!



For more info on REM sleep and Ginkgo and how it connects to Down syndrome, see Teresa Cody's blog post: http://changingmindsaboutdownsyndrome.blogspot.com/2011/02/can-sleep-be-as-easy-as-gb.html



Related Posts



Jett's Sleep Study: Mommy's Nightmare

Ginkgo: The Hows and Whys for Down Syndrome

Stimulating Growth

Nontoxic Bedding

Jett's Sleep Study: Mommy's Nightmare

March 17, 2011



During REM sleep, your brain takes daily information from your short term memory and stores it in your long term memory. But, because of chemical imbalances, people with DS have much less REM than a typical person, which contributes to impaired memory. If you can't build upon what you learned that day, you have to start all over again the next day. It's very difficult to get from A to Z when you don't remember A.



That's partly why Jett takes ginkgo throughout the day and at night since it's proven to help restore REM in mice with DS. For more info on REM sleep and Ginkgo and how it connects to Down syndrome, see Teresa Cody's blog post: http://changingmindsaboutdownsyndrome.blogspot.com/2011/02/can-sleep-be-as-easy-as-gb.html

So, I needed a sleep study to see how Jett's REM compared to that of a untreated person with DS and to a typical person. Does he need more ginkgo overall? Does he need an extra dose in the middle of the night? (Gingko has a half life of 7 hours, while the biloba part, most importantly, has a half life of only 3 hours.) Do I need to teach him to swallow a time-release capsule ASAP? Is it having any effect on his REM at all? (I'm working the assumption that, prior to using ginkgo, Jett's REM would be similar to that of an untreated child with DS.)



Additionally, Jett's growth is not up to par and since growth occurs in deep sleep, I was also curious to see just how much of all the other stages of sleep he was getting. Perhaps his lack of growth is because of too little deep sleep; or perhaps another chemical imbalance is causing the growth hormone improper production, release or utilization. Either way, I have to rule out each thing until I can find the cause. I need an exact problem before I can find a solution.



And now for the sleep study...



We showed up at 8pm with a suitcase full of toys, books, food -- anything I thought we might need in a nine hour period. The very-patient-lab-tech, Brian was very patient. He had a lot of patience. That must be the number one quality in a children sleep study technician.... Patience and perseverance....



When Brian walked in, I was cleaning out Jett's nose. Jett held up his little nostrils so I could more easily put in the nose drops, use the Nose Frida, etc.



Brain was impressed with his cooperation. "I applaud the fact that you're cleaning his nose, but later on, when he's crying, it'll all start all over again and you really won't be able to keep him totally clear."



"Oh," I said, "but Jett doesn't cry. Unless he's in dire pain, or something." Brain nodded his head, hopeful, but not he least bit convinced as I assured him of Jett's angelic nature.



Next, I had to distract Jett while Brian taped, wrapped, braided and glued 25 wires -- that's twenty five wires -- to Jett's wiggly, bobbing head, face, neck, back, waist and foot. This procedure took 45 minutes.



Brain was quite impressed with Jett. He said that he's done this to a thousand children and Jett was definitely one of the easiest. (He also remarked on his amazing cognition and motor skills as he busily played with the inflated hospital glove and flipped through the pages in his book.)

That turned out to be the easy part.

(Sorry for the blurry pictures!)

Once the bed was all prepared (allergy-free sheets, etc.), Brain said, "Okay, now I have to put on the last wires. (HUH?) This one in particular is the most annoying, but one of the most important. It touches his nose and hangs over his lip. (HUH?) It monitors the respiration and lip movement, etc. So before breastfeeding, you'll have to lift it up, very carefully, like this... (HUH? In the dark??) I've put extra strong tape on it to make it'll stay put. You can lay in the bed with him until he's asleep, but then you need to leave him and only come back when he wakes up -- not moves or moans, but wakes up."



I'd spent the last year developing the habit of attending to Jett's every little breath, whimper and sigh, around the clock... "Okay," I said, "Sure, I can do that."



After what felt like an hour and 15 minutes of rocking, singing and back patting, Jett finally fell asleep. As he was drifting off, I could hear children from other rooms crying. I slipped out of his (super noisy, plastic sheet lined) bed, ate a sandwich, checked my email and settled into the twin bed nearby. I was excited about the prospect of sleeping without him kicking me for one night.



I laid on the pillow and sighed deeply. Then Jett woke up -- rolled over -- with head up looking around, touching the bed clothes in search for me. It took about 20 minutes to get him back down. Back out of his (super noisy) bed, 20 minutes later he's awake again... This time screaming and crying all wrapped up in the wires... I couldn't see anything so I had to turn the light up a little bit to get the wires untangled. He was crying and crying and crying and crying and crying. I don't know how long it took me to get him asleep... An hour? He finally fell asleep on me and I carefully slid him off on his own again. I was ready to call the whole thing off. He woke two more times shortly after. Screaming, crying.



It was that stupid nose wire that was driving him crazy! He telepathically insisted that I take it off. So I did -- Brian wasn't kidding about the strength of the tape! After three rips, I got it off. Jett screamed bloody murder! But he finally settled down, rolled on his stomach and I got back into my bed.

Jett woke again at 5:30 am. Brian came in and said that he got enough data and we could leave. Yea!!!!! He said that it actually went very well and many kids never do fall asleep and have piercing blood curdling cries. He said Jett did great. I couldn't imagine that they'd get good data from it, but, at that point, I didn't care one single bit. I just wanted to LEAVE.



Even though I ripped off the tape and wires surrounding his nose and mouth, Brian said he still got a good reading because when Jett turned over onto his stomach, the mouth and nose sensors were in the correct position!



That traumatic night lowered Jett's immune system enough that Jett now has his first cold in his life. I sure hope the data we get was worth it!



UPDATE: Jett does not in fact have a cold. He's teething! He was up all last night and well, so were we.



Related Posts



Jett's Sleep Study: The Results

Ginkgo: The Hows and Whys for Down Syndrome

Stimulating Growth

Nontoxic Bedding

Ginkgo: The Hows and Whys for Down Syndrome

Supplementing with Ginkgo Biloba is the first step to getting your child's brain chemistry in order. In experiments with a mouse model of Down syndrome, researchers at Stanford University discovered the main culprit to brain dysfunction in people with DS. They found that the GABA receptors, which regulate inhibition in the brain, are over-active. This means the receptors are ON continuously. As a result, the nerves in the memory and learning area of the brain aren't able to fire. In other words, the nerves are shut down. To compensate for increased activity of the GABA receptor, they successfully used Ginkgo, a GABA antagonist, to turn it down.



Additionally, Ginkgo will help restore your child's REM sleep, which is important for memory retention. Untreated people with DS show a significant reduction in percentage of REM sleep, a marked delay in first REM latency and a statistically significant decrease in high-frequency rapid eye movements during REM sleep. The percentage of REM sleep in humans can be considered as an index of brain "plasticity" and the high-frequency REMs can represent an index of the brain ability to organize information, which is vital for learning and memory.



The average REM of a typical one year old child is 30%. When Jett is on ginkgo, his REM is at 22.3%, which is remarkable. His doctor said that Jett's sleep study results were the best he had ever seen in a person with DS.



Products



The liquid ginkgo is harder to dose because the strength is not equal to the solid form. Teresa Cody does not recommend that you use it. If you do, however, make sure it's alcohol free. Honeycomb has an alcohol free liquid version (that I used with Jett until I found out about the dosage). If your infant is not eating solid foods yet, you may want to use the liquid version.

Ginkgo liquid: http://www.nutrivene.com/view_item.php?id=244

For liquid dosage, you can go here: http://www.riverbendds.org/index.htm

On the left side of the screen, click the folder "Supplements & Drugs" and then the folder "Ginkgo" and then the folder "Dosage."



Time Released Ginkgo that Teresa Cody uses: Natural Sunshine.



I use this brand: Ginkgo Biloba http://www.vitacost.com/NSI-Ginkgo-Biloba-Extract-120-mg-300-Capsules I don't use the standard name brand Gingkold, but it has the same ratio and ingredients.



Link to more expensive brand that they used in the actual study: http://www.vitacost.com/Natures-Way-Ginkgold If you buy the Ginkgold tablets instead of the NSI, capsules, you'll have to crush the tablet...



Use only standardized products, as their level of Ginkgolic Acid is reduced to under 5 ppm (parts per million). Non standardized products can cause serious allergic skin reactions due to higher amounts of Ginkgolic Acid content. These two statements show that the product you are using is standardized: "24% Ginkgo flavone glycosides and 6% terpene lactones" or "Ginkgo special extract EGb 761"



Standardized products also guarantee a fixed amount of terpene lactones, including Bilobalide, which is the active component in the therapy for Down Syndrome. If you are using a product that doesn't state one of the two above mentioned things, contact the manufacturer or discard it right away.



Word of caution: if your child is suffering from epilepsy or another seizure disorder, talk with your health care provider first. See side effects below. If you email me, I can get you in contact with several moms whose babies had seizures (unrelated to ginkgo) but are now taking it with no problems.



Dosage



Minimum dose is 2.5 mg per pound to see results. 2.5mg x 18.5 lbs = 46.25 mg. Each capsule is 120 mg. Your goal is to get him taking this 3x a day, about 7 hours apart, with the largest amount before bed. Once he's old enough to swallow pills, you'll move him to the time released tablet that he can take it once in the morning.



This is a conservative introduction. You can modify it as you wish. But wait at least a week before you introduce anything else.



Week 1- give him 1/4 of a capsule (30mg) in the morning. (Always introduce a new thing in the morning so that you can best notice & deal with any side effects.)



Week 2- give him 1/4 of a capsule in the morning & 1/4 of a capsule 7 hours later. (GB has a half life of 7 hours.)



Week 3- give him 1/4 of a capsule in the morning & 1/4 of a capsule before bedtime. (During this period, your child may have a change in sleeping patterns, but it will get back into a normal pattern in a week or so.)



Week 4- 1/4 of a capsule in the morning, 1/4 of a capsule 7 hours later & 1/4 of a capsule 7 hours after that. (That's 90 mg.) If you see that he is easily bruising, then cut back on the amount.



Once you get to week 5, you can increase it as he gains weight.



Jett hasn't experienced any adverse effect of the ginkgo and he's been taking it since at least 4 months of age.





I would love to switch to time release, but Jett can't take tablets yet & grinding would defeat the purpose. So, I'm giving it about every 7 hours. When he awakens early in the am, I give it then because it usually is about 7 hours after I last gave it. It seems to allow him a little more calm sleep for the rest of the morning. (Plus, the less he thrashes, the more I sleep!)



I do give Jett more than the minimum of GB. At 16.8 lbs, he is getting a full capsule a day, 120 mg. I slowly working him up to the full potency of one of my capsules: 120 mg spread throughout the day. Teresa Cody, of CMF, said once you see easy bruising, you have to back down on the dosage.



Explanations of how/why this works:



http://changingmindsaboutdownsyndrome.blogspot.com/2011/03/sleep-part-i.html



http://changingmindsaboutdownsyndrome.blogspot.com/2011/02/can-sleep-be-as-easy-as-gb.html



Research



Here is a great study about the relationship of GABAa (Ginkgo helps restore proper use of GABA) and the production of REM. The full text is available at this link

http://jn.physiology.org/content/92/4/2198.full

The idea that are kids are asleep and not having proper REM state is pretty profound. One needs REM at night to consolidate memory.



GABAA Receptors Inhibit Acetylcholine Release in Cat Pontine Reticular Formation: Implications for REM Sleep Regulation



Jacqueline Vazquez and Helen A. Baghdoyan

Department of Anesthesiology, University of Michigan, Ann Arbor, Michigan 48109



Submitted 2 February 2004; accepted in final form 10 June 2004



ABSTRACT



receptor This study used in vivo microdialysis in cat (n = 12) to test the hypothesis that gamma aminobutyric acid A (GABAA) receptors in the pontine reticular formation (PRF) inhibit acetylcholine (ACh) release. Animals were anesthetized with halothane to hold arousal state constant. Six concentrations of the GABAA receptor antagonist bicuculline (0.03, 0.1, 0.3, 1, 3, and 10 mM) were delivered to a dialysis probe in the PRF, and endogenously released ACh was collected simultaneously. Bicuculline caused a concentration dependent increase in ACh release (maximal increase = 345%; EC50 = 1.3 mM; r2 = 0.997). Co-administration of the GABAAagonist muscimol prevented the bicuculline-induced increase in ACh release. In a second series of experiments, the effects of bicuculline (0.1, 0.3, 1, and 3 mM) on ACh release were examined without the use of general anesthesia.

States of wakefulness, rapid-eye-movement (REM) sleep, and non-REM sleep were identified polygraphically before and during dialysis delivery of bicuculline. Higher concentrations of bicuculline (1 and 3 mM) significantly increased ACh release during wakefulness (36%), completely suppressed non-REM sleep, and increased ACh release during REM sleep (143%). The finding that ACh release in the PRF is modulated by GABAA receptors is consistent with the interpretation that inhibition of GABAergic transmission in the PRF contributes to the generation of REM sleep, in part, by increasing pontine ACh release.



Possible Side Effects



From Drugs.com:

"There have been published case reports of generalized convulsions and vomiting within several hours after ingestion of large amounts of ginkgo nuts/seeds, including in young children and healthy individuals with no known personal or family history of epilepsy. Many more cases, including fatalities, occurred in Japan in the 1930s to the 1960s during a food shortage when ginkgo nuts served as an important source of food. Some investigators have suggested that the amounts of ginkgotoxin in commercial extracts are too low to exert a detrimental effect. Nevertheless, a case report describes two elderly, previously well controlled epileptic patients who presented with recurrent seizures within two weeks of initiating treatment with a ginkgo extract. Both patients remained seizure-free several months after discontinuing the extract, with no alteration to their anticonvulsant medications."



http://www.drugs.com/drug-interactions/ginkgo-biloba-with-prozac-1115-648-1174-10621.html



The active ingredients in Ginkgo biloba extract account for its antioxidant properties and its ability to inhibit platelet aggregation. Consequently, this herbal product is promoted for use in improving cognitive function and blood flow. To date, however, at least four reports of spontaneous bleeding in association with use of Ginkgo biloba have been published.



One report described a 70-year-old man who presented with bleeding from the iris into the anterior chamber of the eye one week after beginning a self-prescribed regimen consisting of a Ginkgo biloba concentrated extract (Ginkoba), in a dosage of 40 mg twice daily. His medical history included coronary artery bypass surgery performed three years previously. His only medication was aspirin, in a dosage of 325 mg per day, which he had taken since his bypass surgery. After the spontaneous bleeding episode, he continued to take aspirin but discontinued the ginkgo product. Over a three-month follow-up period, he had no further bleeding episodes. Interaction of the ginkgo product and aspirin was considered the cause of his ocular hemorrhage.



Drug interactions



(Aspirin, warfarin (Coumadin), ticlopidine (Ticlid), clopidogrel (Plavix), dipyridamolePersantine)



Ginkgo biloba may also interact with warfarin (Coumadin). A 78-year-old woman who had been taking warfarin for five years after coronary bypass surgery suffered a left parietal hemorrhage after using a ginkgo product for two months.5 No change was noted in her prothrombin time. The intracerebral bleeding was attributed to the antiplatelet effects of ginkgo.



In another reported case,6 a 33-year-old woman was diagnosed with bilateral subduralhematomas after almost two years of ingesting Ginkgo biloba, in a dosage of 60 mg twice daily. Her other medications were acetaminophen and an ergotamine-caffeine preparation, which she used briefly. While she was taking Ginkgo biloba, her bleeding times were 15 and 9.5 minutes. Within 35 days after she stopped taking the ginkgo product, her bleeding times were normal (three to nine minutes).



An additional case of spontaneous intracerebral hemorrhage was reported in a 72-year-old woman who had been taking Ginkgo biloba, in a dosage of 50 mg three times daily, for approximately six months.7 No history of head trauma could be elicited.



Until further information is available, patients who are taking garlic, vitamin E,8 warfarin, aspirin or other drugs with antiplatelet or anticoagulant effects should be cautioned about potential interactions with ginkgo products. Patients who are taking ginkgo products should be counseled to inform their physician about unusual bleeding or bruising, new-onset headaches or vision changes.



------



Jett is on the complete protocol plus heart meds (Digoxin & Enalapril) and suffers no side effects. His recent CBC shows his platelet count is a little low. My pediatrician is not concerned, but agrees that I should be watching carefully for any bruising, which I haven't seen.



------

First, ginkgo has been used for over 5000 years.



Second, ingestion of too many Ginkgo seeds has been known to cause seizures. The ginkgo we, in the US use, is not in that form. The reports of seizures have are from Japan, because they consider the Ginkgo seed a delicacy. The methylpyridoxine has been cleaned out of the extracts sold in the US.



Third, herbs are highly regulated. A high quality Ginkgo product such as Ginkgold, or Nature's Way products would be the smartest route.



Fourth, to be on the safe side, patients treated with agents that can lower the seizure threshold should preferably avoid the use of products containing ginkgo biloba.



From Drugs.com:

"There have been published case reports of generalized convulsions and vomiting within several hours after ingestion of large amounts of ginkgo nuts/seeds, including in young children and healthy individuals with no known personal or family history of epilepsy. Many more cases, including fatalities, occurred in Japan in the 1930s to the 1960s during a food shortage when ginkgo nuts served as an important source of food. Some investigators have suggested that the amounts of ginkgotoxin in commercial extracts are too low to exert a detrimental effect. Nevertheless, a case report describes two elderly, previously well controlled epileptic patients who presented with recurrent seizures within two weeks of initiating treatment with a ginkgo extract. Both patients remained seizure-free several months after discontinuing the extract, with no alteration to their anticonvulsant medications."



http://www.drugs.com/drug-interactions/ginkgo-biloba-with-prozac-1115-648-1174-10621.html

-------



Ginkgo page on the Einstein Syndrome Website



Sources

http://www.umm.edu/altmed/articles/dementia-000046.htm



Related Posts



Sleep Study: The Results

Jett's Sleep Study: Mommy's Nightmare

Cure for Down Syndrome?

Changing Minds Foundation Protocol

Jett's Complete Protocol

EGCG Green Tea Extract

Longvida Curcumin

Why Rhodiola Rosea?

CMF Protocol: Prozac

Fermented Cod Liver Oil

Coconut Oil Info and Recipes

Fats & Oils

Alzheimer's Disease & DS: Connection and Treatment...

Thyroid & DS Go Hand in Hand

Nosodes: Homeopathic Alternative to Vaccines

Antibiotics: Alternatives & What to Avoid

Getting Organized: A Medical Notebook