Rescuing my son: Testing for Sleep Apnea

On August 2011, I started my journey to find answers to what happened to my son while he was hospitalized on January 2011. So I began to talk with Tommy's ENT. She suggested to do a sleep study to find if he had sleep apnea. Sleep apnea causes sensory issues and kids with Trisomy 21 are at a higher risk for sleep apnea. So I contacted the Down Syndrome Center and they order the sleep study. The sleep study was schedule on November 13, 2011.


Understanding what is Obstructive Sleep Apnea
According to the organization Sleep for kids, "when snoring is loud and the child is having difficulty breathing, it may be a sign of a more serious disorder, obstructive sleep apnea.  Sleep apnea is characterized by pauses in breathing during sleep caused by blocked airway passages, resulting in repeated arousals from sleep.  Sleep apnea has been associated with daytime sleepiness, academic problems, and hyperactivity.  Treatment for sleep apnea is available."


The date arrive
We got admited to the hospital at 7:30 pm. I was a little concerned that it would bring bad memories to Tommy and he wouldn't cooperate. I did everything it was recommended by the Neurologist division to make our experience more placent. So I brought Tommy's favorite blanket,  favorite pajamas, his best friend "Elmo" and so on. The same day, Tommy had his first cold for the fall/winter season; therefore, I had to bring his *asthma treatment, too.


Getting ready to the sleep study
It took a little while because the wiring it had to be placed on Tommy's head, chest and back. Tommy was playful and cooperative with the technicians, completely opposite of what I was expecting.  We were ready to go to bed at 8:30 pm and the lights went off! The sleep study began:

Sleep Study 
Time in bed: 9.1 hours
Total Sleep: time 7.8  hours
Sleep Efficiency 85.6 %
REM Sleep: 19.2 % TST
Average Oxigen Saturation: 94%


Waking up
Tommy fell asleep at the same time than usual, but he didn't sleep the amount of time he usually sleep at home. He began waking up when the technicians had to come to the room to check on the wires. He couldn't sleep after 4 am, when he usually sleeps until 6:30 am.

He is lucky for having a beautiful hair.

After the wires were removed, a quick bath

was enough for his hair being shinny again.

Sleep Study results
"Slept restlessly but hand only a very slight increase in the frequency of obstructive events. Normal sleep quality with much (RMEM3) and REM sleep... Snoring was rare and mild..."


We are very happy with the results of Tommy's sleep study, considering he had a cold and was congested that day. His results also reaffirm to me what The National Association for Child Development has in their website about sleep apnea in kids with T21: "It has been said by some experts that 100% of children with DS have sleep apnea. But studies have shown that this is not the case. While the numbers are fairly high at 45%, not all children with DS suffer from OSA (Obstructive Sleep Apnea)." I can say, according to my son's sleep study results, "Not all kids wit Trisomy 21 has sleep apnea. Their percentages for having sleep apnea is higher than for their typical peers, which means monitoring sleep apnea should be recommended, but it doesn't mean your kid will have it."


Sleep apnea has been ruled out as a possible cause of our son's sensory processing issues.


Resource for parents:
The organization Sleep for kids is a service of the National Sleep Foundation. Their website has good information that  explain everything, we as parents can do, to help our kids having good sleep habits. 




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*Because Tommy has viral asthma, a simple cold can trigger his asthma. But the whole fall/winter season Tommy hasn't have any asthma episode. Just running nose and sporadic cough when he has had a cold, no wheezing. So he may be growing out of the asthma. We will know for sure in his next appointment in May.

Rescuing my son: Ruling out the possible cause

Getting  the diagnosis for Sensory Processing Disorder is one more label we have to deal with; but at the same time, it was the first step for me to find an answer to what happened to my son while he was hospitalized.  I have also realized this label  helps to get grants from non-profit organizations and services through the school districts. The way I see it:  the better you know your enemy's strategies, the better you can contra attack. So this label helps me to fight back for my son in our chromosomal war. 


Sensory Processing Disorder  does share many symptoms with several other disorders, and many times kids are misdiagnosed with autism. Therefore, It is important for parents to rule out any other possible causes of the child's symptoms. To rule out the causes of my son's regressions and worsen of his sensory issues, I worked in conjunction with a Chriropractor, a Nutritionist and the local Down Syndrome Clinic. We checked several areas:

• Spine Cord alignment. Spinal cord is the highway to pass sensory information from the brain to the body. If there is a misalignment the pathways between the brain and the rest of the body, the sensory information received  from the sensory system is not decoded properly from the brain; therefore, wrong information is sent to the body, resulting in inappropriate behaviors from the person.  Checking the spinal cord aligment of a child should be done for a Pediatric Chiropractor Specialist. In our son's case, we found a Chiropractor with experience in kids with different needs. 
• Sleep apnea. Sleep apnea is linked with sensory disfunction because the brain doesn't get enough oxygen. Sleep apnea is common in kids with Trisomy 21. An ENT or a local Down Syndrome Clinic can get a referral for a sleep study to check for Sleep apnea.
• Allergies or sensitivity to food. Food allergy/sensitivity Signs that a child may show are constantly picking at his nose or a rash around the mouth, which can be confused with chapty skin because of cold weather.  Blood work should be done to determinate if the gut is processing foods properly. This is a blood work, and insurance may not cover for this test. The test  E95 Basic Food Panel (Ig3 and Ig4) test 95 foods, so it allows to have a wide spectrum of food should be avoid it the test comes back positive for food sensitivity. The specialist who can help in this matter is a Nutritionist who specialized in AHDD/ADD/ SPD.
• Antlanto-axial Instability. The neurologic manifestations of symptomatic AAI include, but not limited to, Loss of muscle strength and sensory deficits. Because kids with Down syndrome have a higher riks for AAI, it is important to check as a possible factor of the sensory issues. A Neurosurgeon or Orthopedic surgeon are the specialist who can dignosed AAI. A local Down Syndrome Clinic can get a referral for a Neurosurgeon or Orthopedic surgeon.
• Nervous system test.  The nervous system is responsible for every activity in the body. Therefore, a biochemical imbalance can affect the nervous systems. The test is done with saliva or urine samples. A NeuroReset™ Program is a medical program that uses Neuro Science for a unique Assess and Address™ approach to create a person customized health protocol. A nutritionist, speicaliased in AHDD/ADD/SPD, is the professional can help to find if there is a biochemical imbalance in your child's brain.

The areas we checked were based on my son's genetic disorder, Trisomy 21, and SPD. I shared the areas we looked into it to rule out the possible cause because when I was desperred looking for help, I didn't find a guide where to star. In my following post, I will give detail information about the studies, tests and the results that linked us to the answer that I was desperately looking for.

A few words to parents:
SENSORY PROCESSING DISFUNCTION STOPS DEVELOPMENT. If your child is already developmentally challenged this will interfere in your child reaching his full potential and achiving his or her IEP goals will be even harder. Ruling out the cause, it is crusial to find the right treatment for your child. 

Great accomplishments

Hi, It is me, Francis. Remember I was doing a lot of things in my last post, well I am doing a lot now. My mommy took me to my 6 month old check-up and the pediatrician thinks I am doing thinks for a 9 month old baby. He even asked my mommy if she was sure I am 6 month old and not 9 month old. My pediatrician said I am developmentally advanced baby and this may be a reason I can not sleep for long period of time and I fight to fall asleep. My mommy and my daddy feel they are not enjoying me because at 6 months I don't like to be held anymore, I prefer to be exploring around. Some of the milestone I accomplished earlier were:
- Sitting independently at my 5 months
- Picking things up with pincer grasp (thumb-finger) at my 5 months.
- Crawling at my 5 1/2 months
- Pulling up to stand at my 6 months
- Stand up without support for a few seconds at my 6 months
- Standing up while I am seating on a little step stool at my 6 months
- Begining to cruise. It just started last Friday Feb. 10 at the end of my 6 months


I just turned 7 month old today, I am currently working on:
- Moving from putting my hands on the floor and moving my but up, over my feet, to stand.
- Drinking from my sippy cup
- Self-feeding by eating organic honey toasted oatmeal cereal with my pincer grasp.
- Putting objects into containers
- Stacking two soft blocks. I am focused on put one block on top of the other rather than knock them down. I need to get more coordination, but I am very persistent like my mommy. 


I enjoy exploring around and go behind Tommy where ever he goes at the house. One of my favorite things are animals and vehicles sounds. I giggles every time my mommy imitates their sounds. It is so 
funny!

I heard my mommy and my daddy talking about me yesterday. They said that they cannot compare how my brother and I have accomplished our milestones because our development is not typical. Many of my milestones are out of the chart for my age because they are for older babies. My brother and I don't follow charts! So stay tune to hear more about my accomplisements in the coming weeks.

Rescuing our son: Checking for Atanto-axial instability (AAI) —Neck X-ray

By the end of August last year, I began to feel more and more uncomfortable because of Tommy's regression. Something wasn't right! I had to find out the cause to fix the problem. So I contacted our local Down Syndrome Center. They checked his chart and the only possibility they found was: Atlanto-axial instability (AAI). The x-rays he had last year show he had a borderline for AAI, so his regressions in his gross motor skills and overall muscle weakness showed after the hospitalization may be linked to AAI.


What is Atlanto-axial instability (AAI)?

"According to MedScape Atlantoaxial instability (AAI) is characterized by excessive movement at the junction between the atlas (C1) and axis (C2) as a result of either a bony or ligamentous abnormality. Neurologic symptoms occur when the spinal cord is involved. The causes of AAI are varied. AAI sometimes results from trauma. Other cases occur secondary to an upper respiratory infection or infection following head and neck surgery. Another cause is rheumatoid arthritis (RA), with its predilection for the upper cervical spine. In addition, congenital anomalies, syndromes, or metabolic diseases can increase the risk of AAI."

What are the symptoms?

AAI could be asymptomatic. According to the National Down Syndrome Congress, "The 13-14% of individuals who have asymptomatic atlanto-axial instability require no special medical or surgical treatment. However, these individuals may want to avoid activities that may put extra strain on the neck. High risk activities include gymnastics (especially tumbling and trampoline), diving, swimming the butterfly stroke, high jump, soccer, and collision sports (such as football). Individuals with asymptomatic AAI should have more frequent medical and x-ray follow-up. For the 1-2% of individuals with symptomatic atlanto-axial instability, surgical stabilization of the vertebrae is necessary. Such surgery should be performed by a neurosurgeon or orthopedic surgeon who is familiar with Down syndrome and who has experience treating atlanto-axial instability."

Do the neck x-rays diagnose Atlanto-axial instability (AAI)?

No, the neck x-rays are a screening and they are not 100% accurate. An MRI is necessary to diagnose AAI. According the the National Down Syndrome Congress, the "Screening for AAI involves both x-rays and physical examination. The physical examination looks for any changes that might suggest pressure on the spinal cord. X-rays of the head and neck are taken from the side (lateral view) with the head in a normal position as well as with the head bent forward (flexed) and tilted back (extended)." 


A space between parts of the first and second cervical vertebrae (atlanto-dens space) of 3 millimeters is considered normal.  The space between 4 and 5 millimeters is considered borderline and more than 5 millimeters is considered suggestive of atlanto-axial instability.

My husband took Tommy to the radiology appointment in Feb. 2011. My husband commented that the technician said that the films may be wrong because Tommy was moving. The results showed that Tommy's atlanto-dens space was borderline. So Down Syndrome Clinic suggested to repeat the x-rays this year.

If some how the regressions would be linked to the AAI, it may due to Tommy's fights against the nurses due to the pressure in his face and neck to keep the oxygen mask on. I didn't know how strong Tommy's was until I saw him fighting back against 4 nurses. So they did what they had to do to keep him breathing. If the AAI got worse because of the fights during the hospitalization and his regressions were symptoms of AAI, the next step may be surgery. So once again, I got armed with courage and got *plan "B" while I was waiting for the appointment on January 11, 2012.


We had to wait about 3 months for  a neurosurgeon see Tommy. Finally, the day for the appointment arrived. we went to  the appointment, but  the neurosurgeon felt he didn't have enough experience with kids who have Trisomy 21. So Tommy was recommended to a other doctor in the Neurologist Division and he restricted Tommy from any activity that could cause rough movement in his neck until the new doctor saw him. We got the next appointment for February 7. It means today! I am glad to say Tommy is out of any risk. The x-rays showed his AAI is 3mm, completely in the normal range. The Neurosurgeon also asked questions about his regressions in the are of motor and we are glad to say Tommy's muscle weakness has improved as well as his balance, very close to were he was before. So new x-rays won't be necessary until he gets older. The current recommendation is every 10 years. So AAI has been ruled out from the list as a possible cause of his regressions and worse his sensory issues. 

Why surgery is the option for symptomatic atlanto-axial instability?

Surgery is recommended because the person can get paralyzed for the rest of his or her life or can die. So there is not doubt in my heart if symptomatic AAI comes across in our journey, I will everything for my son having the surgery. A low percentage of a people with T21 experiencing  AAI need the surgery, but the risk is higher for them than for their typical peers.  A lot of kids with T21 experiencing asymptomatic AAI grow out of it. 

I have to thanks Tommy's teacher, therapists, extended care staffs and everybody at Tommy's Preschool and Day care for caring so much about him when they knew about the possibilities of having symptomatic AAI. They were doing everything they could to keep him safe. This make feel confident to let my precious boy under their care while I am working. Thanks so much! 

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*PLAN B

If my son would have needed the surgery, I wanted the best for him. This means the best surgeon, the best hospital. So I contacted a blogger friend "myspecialks.com." She gave me good information if my son would need surgery. So I want to share it with all parents with a child facing symptomatic AAI:
Shriner's Hospital for Children in Philadelphia has top spine surgeons in the country. One of the best surgeon for AAI is Dr. Amer Samdani, he is currently working in open a AAI clinic. You can contact Dr. Samdani at:

Shriner's Hospital for Children

3551 North Broad Street, 

Philadelphia, PA 19140 

(215) 430-4000. 

Because of the health care of a child with a genetic disorder requires money, we always are worried about medical bills. Shriner's Hospital for Children doesn't reject any patient because of money. Shriner's Hospital for Children pays for all travel and all medical care. I didn't get more information how to apply for them to pay for the medical bills, but it is a great relief to know about it. 

Beating Growth Chart

When Tommy was an unborn baby he had slow growth, but his growth improved without any explanation 3 months before he was born. When he was born he was a good size baby and he has always been in the highest percentiles for kids with Trisomy 21. In the growth chart for typical kids, his growth has fluctuated, but he is always  keeping a good hight for his age. But after the hospitalization, Tommy had a poor growth. I began to be concern because this was another indication something may be wrong. Our ENT wasn't concern because she said is very typical and always his hormone levels come back normal. From not where, I noticed Tommy has grown in the last months. I just noticed today he is taller than a few weeks ago because his pants and shirt look a lot shorter.  I don't care about percentiles, I just care that he keeps growing. I will be writing in the coming months what is happening to Tommy, why the hospitalization affected him so much and he regressed about a year back. Meanwhile, I am so happy he is growing! Spring is coming, so it is time to get new cloth for him!

Regardless any issue my son faces,

 he always does something that gives me hope.