Down syndrome apnea - sleep study 3

Six months after tonsillectomy and adenoidectomy (T&A) my son was still having mild apnea (see second sleep study here). With our ENT doctor, we decided to wait and monitor apnea. Here we go again, third sleep study one year after the last study, and 18 months after the T&A.

We had our third sleep study in February 2013.

So, the results of our third sleep study. Not so mild anymore. Apnea-hypopnea index went up again from  2.7  to 6.3 per hour. The good news - normal REM, normal sleep pattern, baseline oxygenation above 90% at all times. We were told there is a good chance the adenoids have grown back - we have to go to the ENT to check for this. Meanwhile we need to do something about the apnea. Apparently we can still get away with refusing CPAP (the apnea is still considered mild), but we were offered either nasal steroids (Flonase) or some asthma medication (Singulair). None of the choices are great - Flonase may affect growth, Singulair may affect behaviour. I happen to take Flonase on a regular bases for my chronic rhinitis, so we were slightly more comfortable with using Flonase. We've been using Flonase for a month now. As I mentioned, my son's apnea is pretty asymptomatic so we don't see a lot of changes. But he sleeps well, definitely better than before the T&A.

Total Recording Time (TRT):   486.6min.

Total Sleep Time (TST):          426.0min.

Sleep Efficiency Index (TST/TRT): 87.6 %

Sleep Latency:     48.5min.

REM Latency:     195.5min

Wake after Sleep Onset: 11.0min

Total Arousals: 169

Arousal Index: 23.8/hour

Sleep Stages

Stage 1 Minutes   32.0 %TST    7.5     Normal %TST 5-10

Stage 2 Minutes 170.0 %TST 39.9     Normal %TST 45-55

Stage 3,4 Minutes   126.5     %TST    29.7     Normal %TST 10-15

Stage REM Minutes   97.5.0 %TST    22.9     Normal %TST 20-25

Respiratory Events

Obstructive Apnea number 1

Obstructive Hypopnea number 44

Mixed Apnea number 1

Central Apnea number 7

Apnea-Hypopnea Index : 6.3/hour

 

Down syndrome apnea - CPAP or no CPAP

At this point my son has mild apnea, with no symptoms. He sleeps well, has no behavioral issues, good developmental progress. Sleep apnea is a very serious condition that needs to be addressed aggressively, I totally believe that. For many CPAP is the best and only solution. However, we were offered CPAP and refused. Again I'm not a doctor (just a parent obsessing over issues), but I'm worried about long term use of CPAP in children (maybe even adults) with DS. The best I can explain it is this: my son has some degree of facial hypotonia. CPAP is a device fitted snugly on the face - basically pushing on the muscle, bones, etc. And, because of poor muscle tone, nothing pushes back. I'm afraid that long term this will have an impact on his teeth, on face bones, on skull.

And just to show you this is not a crazy idea.

Craniofacial changes after 2 years of nasal continuous positive airway pressure use in patients with obstructive sleep apnea.

Journal: Chest
Article published: 2010 Oct;138(4):870-4.

Tsuda H, Almeida FR, Tsuda T, Moritsuchi Y, Lowe AA

Abstract

BACKGROUND: Many patients with obstructive sleep apnea (OSA) use nasal continuous positive airway pressure (nCPAP) as a first-line therapy. Previous studies have reported midfacial hypoplasia in children using nCPAP. The aim of this study is to assess the craniofacial changes in adult subjects with OSA after nCPAP use.

METHODS: Forty-six Japanese subjects who used nCPAP for a minimum of 2 years had both a baseline and a follow-up cephalometric radiograph taken. These two radiographs were analyzed, and changes in craniofacial structures were assessed. The cephalometric measurements evaluated were related to face height, interarch relationship, and tooth position.

RESULTS: Most of the patients with OSA were men (89.1%), and the mean baseline values for age, BMI, and apnea-hypopnea index (AHI) were 56.3 ± 13.4 years, 26.8 ± 5.6 kg/m(2), and 42.0 ± 18.6/h. The average duration of nCPAP use was 35.0 ± 6.7 months. After nCPAP use, cephalometric variables demonstrated a significant retrusion of the anterior maxilla, a decrease in maxillary-mandibular discrepancy, a setback of the supramentale and chin positions, a retroclination of maxillary incisors, and a decrease of convexity. However, significant correlations between the craniofacial changes, demographic variables, or the duration of nCPAP use could not be identified. None of the patients self-reported any permanent change of occlusion or facial profile.

CONCLUSION: The use of an nCPAP machine for > 2 years may change craniofacial form by reducing maxillary and mandibular prominence and/or by altering the relationship between the dental arches.

Down syndrome apnea - sleep study 2

Six months after tonsillectomy and adenoidectomy my son was scheduled for a second sleep study. In children with DS is not uncommon for apnea to persist after T&A.

We had our second sleep study in February 2012.

So, the results of our second sleep study. Apnea-hypopnea index went down from 7 to 2.7 per hour. Good, but this is still apnea. The REM got way up. This is great. At this point we were given the option of waiting and monitoring the apnea, or considering CPAP (continuous positive airway pressure). We politely refused CPAP and are scheduled for the third sleep study soon.

Total Recording Time (TRT):   509.8min.

Total Sleep Time (TST):          404.5min.

Sleep Efficiency Index (TST/TRT): 79.5 %

Sleep Latency:     15.5min.

REM Latency:     198.5min.

Wake after Sleep Onset: 88.5min.

Total Arousals: 101

Arousal Index: 15.0/hour

Sleep Stages

Stage 1        Minutes   69.0     %TST    17.1     Normal %TST      5-10

Stage 2        Minutes   136.0   %TST    33.6     Normal %TST    45-55

Stage 3,4     Minutes   70.5     %TST    17.4     Normal %TST    10-15

Stage REM  Minutes   129.0   %TST    31.9     Normal %TST    20-25

Respiratory Events

Obstructive Apnea          number 0

Obstructive Hypopnea    number 17, average duration (sec) 10.6

Mixed Apnea                 number 0

Central Apnea                number 1

Apnea-Hypopnea Index : 2.7/hour

Respiratory Effort Related Arousals (RERA): 16

RespiratOry Disturbance Index «apneas+hypopneas+RERA)/TST): 5.0/hour

Oxygen saturation awake: 97%

Nadir oxygen saturation during sleep: 84%

End-Tidal C02 awake: 39.6

End-Tidal C02 asleep peak: 48.7

Percentage of time with End-Tidal C02> 52mmHg: 0.0

Periodic Leg Movements:

Periodic Limb Movements with arousals: 0

Periodic Limb Movements : 0

Electrocardiographic Monitoring: Average heartrateasleep: 87

Down syndrome apnea - tonsillectomy and adenoidectomy

Two weeks after our sleep study we were scheduled for a T&A (August 2011). In preparation for the surgery we had a cervical XRay to check the atlanto-dens interval. It was within normal limits. It is really important for the anesthesiologist to know if it's safe to extend the neck during the surgery and to be on alert for possible complications due to the muscle relaxing effects of anesthesia. Seriously, there was an article published about two weeks ago about a 7 years old boy (did not have DS) who had undiagnosticated  atlanto-axial instability and who developed quadriplegia after an elective surgery to remove his tonsils and adenoids. We were told by our ENT and the anesthesiologist that even with the normal results, they will still be very careful and will operate with the neck in neutral position.

Our surgery was short and painless. The recovery was everything but. We spend the night in the hospital, which is standard procedure for children with documented apnea - they have too much air all of the sudden and apparently that's not good either. The insurance did not want to approve the stay, but our ENT (which we love) send them a bunch of literature and convinced them.

So, about the recovery. The pain lasts 10 days. It's not like there is a lot of pain in the first days and then is gets better and better. No, the pain lasts 10 days. I highly recommend around the clock medication - we alternated ibuprofen and Tylenol every 3 hours. I know that some surgeons do not recommend ibuprofen for fear of bleeding, likely ours did - Tylenol alone just doesn't cut it. Don't worry if and what your child eats. He needs to drink. Ice cream was our friend. A really nice tip we got from the blog below was to use Tylenol suppositories during the night. It really helps if you do not have to wake the child. Remember, around the clock means around the clock - we set the alarm in the middle of the night.

After the recovery was over - sleep improved a lot. No more waking in the middle of the night. Tongue protrusion  which is an ongoing issue for us, got so much better, almost immediately after surgery.

This blog is the best source of mom advice post T&A. Great tips.

Down syndrome apnea - sleep study 1

We are very lucky that my son is very healthy and he doesn't have the problems associated with DS. Except for sleep apnea. It was always an issue. He had apnea of prematurity at birth. For the longest time every time we mentioned to our pediatrician that something is off with my son's sleep our worries were kind of brushed off. Finally, when my son was 3 years old, we had our first sleep study. It is not a pleasant experience - not for the child and not for the parent. It turned out that my son had moderate apnea. In terms of his symptoms - he did not snore, he was not tired during the day, he was sleeping in a weird position with the neck super-extended, and he was waking a lot during the night.

We had our first sleep study in August 2011.

So, the results of our first sleep study. I'm not a doctor, but apnea-hypopnea index 7/hour is not good (most doctors think 1 is too much in children). Also, the sleep pattern is completely off. He spends 4.5% of this sleep time in REM compared to 20-25% normal. This is the stage when he dreams, when his mind is supposed to really relax, when everything he learned gets stored in long term memory (or something like this) - it's really important. Conclusion - tonsillectomy and adenoidectomy, or T&A.

Total Recording Time (TRT):   518.8min.

Total Sleep Time (TST):          422.5min.

Sleep Efficiency Index (TST/TRT): 81.8 %

Sleep Latency:     7.5min.

REM Latency:     212.5min.

Wake after Sleep Onset: 86.5min.

Total Arousals: 88

Arousal Index: 12.5/hour

Sleep Stages

Stage 1        Minutes   54.5     %TST    12.9     Normal %TST      5-10

Stage 2        Minutes   246.0   %TST    58.2     Normal %TST    45-55

Stage 3,4     Minutes   103.0   %TST    24.4     Normal %TST    10-15

Stage REM  Minutes   19.0     %TST      4.5     Normal %TST    20-25

Respiratory Events

Obstructive Apnea          number 2, average duration (sec) 10.5

Obstructive Hypopnea    number 47, average duration (sec) 12.1

Mixed Apnea                 number 0

Central Apnea                number 0

Apnea-Hypopnea Index : 7.0/hour

Respiratory Effort Related Arousals (RERA): 19

RespiratOry Disturbance Index «apneas+hypopneas+RERA)/TST): 9.7/hour

Oxygen saturation awake: 93%

Nadir oxygen saturation during sleep: 83%

End-Tidal C02 awake: 33.0

End-Tidal C02 asleep peak: 50.1

Percentage of time with End-Tidal C02> 52mmHg: 0.0

Periodic Leg Movements:

Periodic Limb Movements with arousals: 0

Periodic Limb Movements : 0

Electrocardiographic Monitoring: Average heartrateasleep: 95

Keep the cold away

It is not winter yet, but I am getting ready. My son always ends up having to take a couple of rounds of antibiotics, because any little cold ends in pneumonia. I am getting better at preventing this and hopefully we will have a good winter. Here is what I am using to get him through the winter.

Nasal spray with xylitol - really amazing. I wrote about this before, still the best remedy I've found for runny noses. You can buy it, or make your own using this recipe. More about xylitol benefits, uses, and safety here and here.
Zinc, vitamin C and echinacea - for about 10 days to increase metabolism. I like the lozenge by Windmill, they have a good amount of zinc.
Elderberry syrup - every day or when the cold starts. You can buy it, but also make your own using this recipe.

Massage therapy benefits

After too long a pause, we restarted giving my son massages. There is so much research showing the benefits of massage therapy for children.

Children with Down syndrome improved in motor functioning and muscle tone following massage therapy
Journal: Early Child Development and Care
Available online 25 Jun 2007 (doi: 10.1080/03004430500105233)
Maria Hernandez-Reif et al.

Abstract
Twenty‐one moderate to high functioning young children (mean age, two years) with Down syndrome receiving early intervention (physical therapy, occupational therapy and speech therapy) were randomly assigned to additionally receive two 0.5‐hour massage therapy or reading sessions (control group) per week for two months. On the first and last day of the study, the children’s functioning levels were assessed using the Developmental Programming for Infants and Young Children scale, and muscle tone was assessed using a new preliminary scale (the Arms, Legs and Trunk Muscle Tone Score). Children in the massage therapy group revealed greater gains in fine and gross motor functioning and less severe limb hypotonicity when compared with the children in the reading/control group. These findings suggest that the addition of massage therapy to an early intervention program may enhance motor functioning and increase muscle tone for children with Down syndrome.

Massage therapy by parents improves early growth and development
Journal: Infant Behavior and Development
Available online 11 September 2004 (http://dx.doi.org/10.1016/j.dr.2005.12.002)
Tiffany Field et al.

Abstract
This study assessed the effects of moderate and light pressuremassage on the growth and development of young infants. A recent study by Diego, Field, Sanders, and Hernandez-Reif (2004) showed that persons who were given moderate pressuremassage, as compared with persons who received light massage or vibratory stimulation, experienced a decrease in heart rate, EEG changes associated with a relaxation response and positive affect, and the greatest decrease in stress. In the present study, mothers were instructed to massage their newborn infants once per day using either light or moderate pressure. The infants’ growth (i.e., weight, length, head circumference), sleep behavior, and performance on the Brazelton scale were assessed soon after birth and at one month of age. As compared to infants who received a light pressuremassage, infants in the moderate pressure group gained more weight, were greater length, performed better on the orientation scale of the Brazelton, had lower Brazelton excitability and depression scores, and exhibited less agitated behavior during sleep.

Preschool children's sleep and wake behavior: effects of massage therapy
Journal: Early Child Development and Care

Available online 7 Jul 2006 (doi: 10.1080/0300443961200104)
Tiffany Field et al.

Abstract
Preschool children received 20‐minute massages twice a week for five weeks. The massaged children as compared to children in the wait‐list control group had better behavior ratings on state, vocalization, activity and cooperation after the massage sessions on the first and last days of the study. Their behavior was also rated more optimally by their teachers by the end of the study. Also, at the end of the 5 week period parents of the massaged children rated their children as having less touch aversion and being more extraverted. Finally, the massaged children had a shorter latency to naptime sleep by the end of the study.

Antibiotics. Again.

The xylitol worked great for sinus infection, but unfortunately, my son got an ear infection from his last cold. So, back on antibiotics (second time this year). He usually gets mild antibiotic induced diarrhea, and I try to control that with probiotics. This time I'm adding zinc too. I've read a couple of articles showing the benefit of using zinc in small children in order to control diarrhea.

Down syndrome supplements

March 3rd, 2012

There is circumstantial and anecdotal evidence that some supplements may be particularly helpful for Down syndrome. At the moment, mainstream doctors/pediatricians do not recommend supplements targeted for Down syndrome. With no particular help from our pediatrician or developmental doctor, we were left to do our own research and take our own decisions. So, this is what we did.

Please, do your own research. I do not recommend these supplements here, as I am not a doctor. I'm only sharing our experience. 

List of supplements my son takes now:
Morning: longvida curcumin,  ginkgo biloba, omega 3 with D3, probiotic (alternate Culturelle/ Garden of Life every 3 weeks), B12
Evening: ginkgo biloba

What you need to know:

• Ginkgo needs to be Standardized Extract containing min. 24% Ginkgoflavonglycosides and 6% Terpene Lactones. 
• Curcumin needs to be longvida for increased bioavailability.
• Omega 3 needs to be mainly DHA.

After we introduced longvida curcumin we've noticed an increase in speech. This is very subjective, of course, my son was ready to talk more anyway. His teacher also commented on how much more he's talking. After we introduced ginkgo in the morning, the nap was significantly reduced. After we introduced ginkgo in the evening, the night sleep was reduced by an hour. His energy levels stayed the same, so I really think his sleep got more efficient. I'm very pleased with this effect, since the main reason I introduced ginkgo was to increase REM sleep, which is supposed to help with memory consolidation. Before ginkgo, my son scored 5% REM during a sleep study (vs. 25% typical for age). This is often the case for children with DS.

What we did:

• decided to wait until 3 years old. Some parents start very early and it seems fine.
• did a lot of research/reading. See list below.
• considered only supplements with solid safety record. 
• decided against Prozac, Focalin XR
• I tried each supplement first for a couple of weeks - just looking for weird side effects.
• introduced one supplement at a time.
• introduced supplements in the morning.
• introduced at lower dose, increased gradually

When giving curcumin, ginkgo and omega 3, clotting tests are recommended after 3 months on supplements to check for unforeseen interactions between the three. I'm also planning to ask for zinc levels check. Research shows that zinc levels may start to decrease starting from 4 years old in children with DS.  I'm keeping in mind the risk of sulfation deficiency, but I don't think will be a problem at the current dosages.

Resources we've considered:

• http://www.changingmindsfoundation.org/documents/links.html
• http://gotdownsyndrome.blogspot.com/2009/09/loads-of-information-about-longvida.html
• http://dsdaytoday.blogspot.com/2011/03/longvida-curcumin.html
• http://dsdaytoday.blogspot.com/2011/03/gingko-hows-and-whys-for-down-syndrome.html
• http://changingmindsaboutdownsyndrome.blogspot.com/2011/02/can-sleep-be-as-easy-as-gb.html
• http://health.groups.yahoo.com/group/DS-GB/messages/1?xm=1&m=e&l=1
• http://community.babycenter.com/post/a29912983/how_to_give_longvida_curcumin
• http://sites.google.com/site/superdownsyndrome/supplements/curcumin
• http://sites.google.com/site/superdownsyndrome/supplements/ginko-biloba
• http://sites.google.com/site/superdownsyndrome/gastrointestinal-issues/sulfation-deficits

Virgin coconut oil truffles

3 tablespoons virgin coconut oil (VCO)

1 1/2 tablespoons unsweetened cocoa powder 

1 tablespoon honey

optional - ground walnuts, coconut flakes, date paste

Melt the VCO to liquid. Mix everything together. Spoon small portions. Store in the fridge. 

I have been considering for years adding more VCO to my diet. It's supposed to be some kind of miracle food. Unfortunately, I'm not a big fan of the flavor, so it just seemed too complicated. Well, I've found out that VCO is really good for people with Down syndrome (regulates thyroid function, helps digestion and promotes weight loss). Now I have a really good reason to try it. I've bought some VCO from Trader Joe's and added a teaspoon to my son's meal at dinner. He wasn't enthusiastic (sometimes you can really tell he enjoys his meal), but he ate it, so I was happy. I think he thought this was a one time thing and mommy was entitled to one culinary mistake. By the second day, he took a bite, pushed the plate away and said "mama, bread, cheese". He signed too, so this was serious. Every time I tried after that, I got a similar reaction. I went back online to look for some ideas and I've found the VCO truffles recipe. By the way, the original recipe asks for 3 tablespoons of cocoa, but it seemed unnecessary for my purpose. Well, I've made the truffles and my son eats 2 every morning (it's been around 10 days now). I'm also eating 2 or 3 in the morning and they've replaced my breakfast - they are very filling.

Xylitol for sinus infection

My son had 3 sinus infections in 3 years and a half. Maybe not bad, but to me this is 3 times too many. Not to mentioned that last time it was so bad, he was on antibiotics for 20 days. A week ago it seemed that another sinus infection was coming. The signs were pretty clear - thick, greenish discharge, mouth breathing, night discomfort. I remembered one of the posts from Got Down Syndrome blog, about making a nasal spray for sinus infection.

The instruction was "For 2/3 cup of saline you would put 150mg of Glutathione (either liquid or opened capsules) and 1/4 teaspoon Xylitol (optional). Spray this up the nose as often as you would like!". Never use tap water! I use boiled water. Distilled water should work too. I started researching Glutathione, but I wasn't comfortable using it. Plus you have to buy 50 pills to use one (and is not cheap). But I am more than comfortable using Xylitol, so I did that. I bought Little noses salines spray (just too lazy to make one myself) and added 2 teaspoons of Xylitol (here is the recipe). We used it 4 times a day during the weekend and twice a day on weekdays. My son didn't like it, but it worked great. By the fourth day it was clear we managed to avoid the antibiotics this time. I'm pretty sure it was the Xylitol, but it may be that the infection was not that strong to begin with. We'll see what happens next time.  The reason why Xylitol works is because bacteria can't metabolize it due to its unique carbon structure. Apparently, this kills the bacteria. I feel compelled to mention that I'm in no way qualified to give medical advice, so, obviously, I don't.

Update: we are now using XLEAR Natural Saline Nasal Spray with Xylitol. Ready to use and works great.