Insights on Recurrent Pneumonia: Risks in Kids with Developmental Delays

It’s a deadly disease. While pneumonia can be treated, the risks are higher for a child with developmental challenges.

Here's why:

There are communication difficulties with a developmentally challenged child that can possibly lead to two problems¹:

1. delay in the recognition of respiratory problems; and 
2. difficulty in establishing the precise diagnosis.

If you are parenting a child with global developmental delay, you probably understand the challenges we encounter when it comes to accurately identifying medical concerns.

When you’re dealing with a case of recurrent pneumonia in a child with developmental delays having multiple episodes in a year, it becomes more important than ever to learn about prevention and control.

Here in the Philippines, pneumonia takes the lives of many children each year. The Department of Health reported that pneumonia is the number one leading cause of child mortality². Data from the DOH 2010 records is presented below.

Before we keep going, you should know that Eira was vaccinated with pneumoccocal vaccine, Prevnar. 

She received the vaccine when she was a little over one year old. Unfortunately, for whatever reason, she was admitted for pneumonia soon after the vaccination. It’s not the first time she had pneumonia and we’re not saying the vaccination was the culprit for her hospitalization.

December 2011 | Eira spent the holidays @ San Pedro Hospital, Davao City | Diagnosis: Pneumonia

But she continues to suffer from recurrent pneumonia despite the vaccination.

Eira’s recurrent pneumonia could be caused by many other factors. For one, she is diagnosed with asthma. Asthma triggers could lead to viral infection and progress to pneumonia. But I guess, that is something we may never find out for certain.

September 2017: At 7, Eira still suffers from recurrent pneumonia | Shot in SPH Davao before going in for X-ray

A parent's perspective: Understanding pneumonia

From a parent dealing with pneumonia several episodes in a year, here's what I understand.

When infection reaches one or both lungs, the airways swell resulting to a buildup of mucus or fluid in the air sacs making it difficult to breathe because the airways are blocked and oxygen could hardly reach the blood. That’s why, we cringe at the first sign of colds or cough.

Pneumonia is a bacterial or viral infection of the lungs... it causes inflammation of the air sacs in one or both lungs.³

In Eira’s case, as soon as she catches colds or starts to cough, the mucus build-up takes just overnight and her body goes into relapse. Her temperature quickly heats up, breathing gets faster and labored with wheezing sound, her appetite reduced (if not completely gone), and in some episodes she throws up any food or fluid intake and begins to dehydrate. 

Timely and proper management is crucial.

In most episodes we experienced, she acquires viral infection when exposed to a human carrier, or in some cases triggered by asthma attacks; and that progresses into bacterial infection requiring treatment with antibiotics.


We have to constantly watch out for anyone carrying viral infection that could quickly spread simply by coughing or sneezing and transmitted to her. Pneumonia could also be caused by fungal infection, a rare case.

Thankfully, Eira never had pneumonia caused by fungal infection.

Image Source: tabletsmanual.com

The above image shows you the anatomy of the lungs to have a better understanding of what pneumonia looks like. It usually begins after an infection in the upper respiratory tract moving to the lungs.

Fluid, white blood cells, and debris start to gather in the air spaces of the lungs and block the smooth passage of air, making it harder for the lungs to work well.⁴

Breathing gets difficult the moment infection sets in and fluid fills the air sacs in one lung or in some cases, both.

In our series of ER rush, emergency responders who knew us would quickly check for Eira’s SO₂ (blood oxygen saturation) level. They use a handy pulse-oximeter. It measures how much oxygen the blood is carrying and indicates the health functions of the lungs.

More often than not, Eira’s dropping SO₂ levels require additional oxygen support.

Prevention and control: Responding on time with proper management

I should stress that medical management may be different for every child. 

Eira’s condition may not be the same with your child’s. It’s important that you consult with your pediatrician specializing in pulmonology and discuss what you can do from home as first responders to care that may help prevent or control the progress of your child’s recurrent pneumonia.

For us, at the first sign of viral infection, our pulmonologist stresses the importance of keeping the airways open.

Before we started her on Seretide, she was given Meptin. It’s a bronchodilator that helps keep the airways open for 24 hours. It helps ease her breathing.

But recently, it seems that her asthma attacks cannot be sufficiently controlled with a regular steroid inhaler with salbutamol neb (reliever med).

So, we shifted to Seretide per doctor’s order.

That means we’re skipping on Meptin. And that’s because seretide contains a combined active ingredients: salmeterol and fluticasone propionate that already helps reduce the inflammation in the lungs and keeps the airways open.

The device above is called a babyhaler. If your pediatrician recommended the use of a babyhaler on your child, make sure you learn the proper technique of using the device. The video below is a helpful demo with Ann Toother, a Clinical Nurse Specialist (Respiratory) on how you should properly use the babyhaler when delivering medication.

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What we do from home controlling pneumonia

As parents, we should be equip with proper education on how to properly respond on time during emergencies to control and prevent the progress of pneumonia.

• Treating acute breathing emergencies… 

The nebulizer kit has always been our good friend during emergencies at home. When breathing gets troubled, tight or difficult, treatment with Salbutamol Nebule Solution using a portable nebulizer provides quick relief to the lungs as it quickly delivers the medication directly to the respiratory tract and helps prevent respiratory problems from developing.

Tip: Use the baby mask from the neb kit for optimized treatment effect.

Recommended for you:

OMRON MicroAIR U100 Portable, Pocked-Sized, Silent Mesh Nebuliser 

• Medication container capacity: 10ml maximum. 

• Easy to assemble, simple preparation 

• Wide medication compliance  

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• Keeping fever down… 

Fever is the body’s natural response to threats such as viral or bacterial infections. While it is a good sign that shows your body is putting up a good fight against infection, it’s important to keep it down when the body temperature rises. Eira usually hits 38 to 39 degrees and at one point her fever reached over 40 degrees despite the antibiotics and paracetamol.

Risk for convulsion is high during peak points of fever.

So we don’t simply rest our faith on paracetamol alone in keeping fever down. Applying cold compress on the whole body has been an effective method in breaking a fever. With Eira, it’s only a matter of minutes after applying cold compress then her temperature goes back up again. That makes it more important to monitor and continuously apply cold compress to keep her body temperature low.

• Hydrating… 

The risk for dehydration when your child loses appetite or when there is fluid losses is common.

This is important: Our pulmonologist cautions against giving children Gatorade for purposes of hydrating. It contains high level of sugar that can make diarrhea worse, according to pediatrician Jo Ann Ryhans.

We give Eira pedialyte. This is recommended by her pediatricians. It helps prevent dehydration and replace losses of nutrients and electrolytes when vomiting or sometimes suffering from diarrhea. It contains balanced levels of salt and sugar made-to-measure for the needs of children.

Special Note: Consume Pedialyte within 24 hours after opening.

Do you want to try Pedialyte?

Call to Order: +63-908-8958-814

Shipping anywhere in the Philippines!

But we keep a sharp eye in observing her condition. There are cases when dehydration is severe and she needs IV insertion at fast drip. Be quick to know if your child is severely dehydrated and call 911 if you observe these signs--

• lethargic, or sleepy
• dry lips
• does not urinate in over 12 hours
• weak, or nauseated
• labored or tight breathing
• vomiting
• pale skin

Notes: Eira is also partially diagnosed with RSS, so when she begins to lose appetite and refuses to take in any food or fluid within four hours, it’s our cue to ER rush because she could be at risk for hypoglycemia. 

I’m sure you know your child better. If you feel that something is not right, don’t think twice and take your child to the nearest emergency clinic.

• Controlling fluid losses… 

A bad episode of recurrent lung infection has Eira on lots of fluid losses. Stomach disorder causes her to throw up at every attempt to intake fluid or food. We’re always ready with Domperidone. It’s an oral medication to prevent reflux and relieve symptoms of vomiting and possible nausea and loss of appetite. In episodes of viral infection, this usually works and she recovers her appetite soon after a full rest.

But with bacterial infection, it’s always necessary for antibiotics before she recovers back to health with restored energy and appetite.

Some helpful tips for prevention

• Serve healthy foods
• Encourage active play
• Identify and avoid allergic triggers
• Create a habit to wash hands before handling food and eating
• Upon arriving home, instruct to wash up after a few minutes of rest
• Avoid allergic triggers such as powder, pollens, fabric conditioners, scents, etc.
• Seek advice from pediatrician if your child have trouble swallowing
• Make sure your child gets enough rest
• Avoid contact with sick people
• Don't use alcohol heavily

Final Insights

I get it. I cannot bubble-wrap my kid from all pathogens. But the thought of losing my daughter to pneumonia scares the crap out of me. Every time.

So, prevention and control are what we recognize as the two strong shields against pneumonia. And it starts with proper education.

• Recognize the early signs of infection
• Consult with your pediatrician about how you can prevent and control the progress of pneumonia in your child
• Be quick to take note of details you observe and be completely open in sharing the information with your pediatrician during consult for a more precise diagnosis.
• Call it paranoia, but I can recognize the first sign of asthma attack and / or viral infection in my child. Early recognition is one of the keys to preventing and controlling the progress of pneumonia.

I choose to prepare for this battle and win. So, I throw a lot of questions at our pulmonologist that helps me provide better care for my child with developmental delays at home.

Do you have questions, too?

We can ask our doctors and get you answers direct from relevant medical professionals and specialists. Simply fill up the box below for your questions.

If you learned something from this article, please share with your families and friends. Join us again in the next blog!

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References:

¹Seddon PC, Khan Y. “Respiratory problems in children with neurological impairment.” Archives of Disease in Childhood 2003;88:75-78.

²Department of Health. Retrieved on November 24, 2017 from http://www.doh.gov.ph/Statistics/Leading-Causes-of-Child-Mortality

³Asthma Respiratory Foundation, NZ. “Living with Childhood Pneumonia.” Retrieved on November 24, 2017 from https://www.asthmafoundation.org.nz/your-health/living-with-childhood-pneumonia

⁴The Nemours Foundation. “Infections: Pneumonia.” Retrieved on November 24, 2017 from http://kidshealth.org/en/parents/pneumonia.html

⁵Schochet, Peter N. and Lie, Hauw S. “Recurrent Pneumonia in Children.” Pedilung. Retrieved on November 24, 2017 from http://pedilung.com/pediatric-lung-diseases-disorders/recurrent-pneumonia-in-children/

Preparing for EEG Test and Choosing your EEG Clinic

Eira at Metro Davao Medical and Research Center - EEG Clinic | November 10, 2017

After consulting with the neurologist, the next step is an EEG test before starting any medications.

That was the doctor's orders in Eira's case. For others, neuroimaging studies (CT or MR scan) may be necessary.

What is EEG?

An EEG tracks and records brain wave patterns. Small flat metal discs called electrodes are attached to the scalp with wires. The electrodes analyze the electrical impulses in the brain and send signals to a computer that records the results¹.

Preparing for an EEG test requires a little bit of conscious effort. Karla Blocka¹ suggests the following steps when preparing for an EEG test:

• The night before your scheduled EEG test, wash your hair. Do not apply any hair products.
• If you are taking any medications, consult with your doctor if you should skip your medications before and during your EEG test. It is also recommended for you to submit the list of your medications to the technician performing the test.
• You should avoid food and drink with caffeine. It is recommended abstain from caffeine for at least eight hours before the procedure.
• Usually, you have to sleep during the procedure and your doctor may advise you to deprive your sleep like what Eira’s neurologist recommended. For children (and it may also apply to adults), a mild sedative is given to help relax and sleep before the procedure starts.

Choosing EEG Clinic

If you are in Davao City and needs an EEG test, we recommend you schedule your EEG at the Metro Davao Medical and Research Center (MDMRC).

This was recommended to us by our neurologist for two reasons:

1. It’s the cheaper option. It only costs approximately Php3, 250.00. But with Eira’s PWD (persons-with-disability) ID, we only paid a little over Php2, 800.00.
2. The EEG results come with a detailed report-type copy of the reading. They print every page of the recording and this is what our neurologist was after to have a comparative reading with the next EEG tests scheduled yearly for us. We were told in other hospitals, we will only get the summary report of the reading, not the the print copy of the entire recording.

The service at Metro Davao Medical and Research Center’s EEG clinic was commendable with helpful and accommodating staff. They helped us through the entire process of the procedure for a convenient experience.

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References:

6Blocka, Karla. 2017. “EEG (Electroencephalogram).” Medically Reviewed by Deborah Weatherspoon, PhD, RN, CRNA on September 14, 2017. Retrieved on November 16, 2017 from  https://www.healthline.com/health/eeg#overview1

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Seizures and Epilepsy in Childhood: A Guide

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Epilepsy in Children: What Every Parent Needs to Know

Description: From a leading neurologist, experienced nurse practitioner, and registered dietician comes the complete guide to help your child achieve and maintain a high quality of life.

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Children with Seizures: A Guide for Parents, Teachers, and Other Professionals

Description: This concise, accessible handbook for families, friends and carers of children with seizures provides all the information they need to approach seizures from a position of strength.

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Experiencing The First Seizure Attack

At 7, Eira experienced her first seizure attack.

There were no signs. At least to our untrained observation skills.

Diagnosed with global developmental delay, we had a list of things to worry about including recurring pulmonary infection, low muscle tone, failure to thrive, speech, genetics and other areas of development. We never anticipated a seizure attack.

We should have.

Then, a week ago, it was just sudden. Her body dropped limp and unconscious from a sitting position. Her skin turned pale and her face blue-ish. For parents like us, who have been a frequent flyer to the ER, that was our cue to another ER rush.

She was already non-responsive but her eyes were open and seemed wide awake.

We were clueless that she was having a seizure attack, but she did not exhibit body convulsion. We did not suspect a seizure episode because we never knew until now that there are different types of seizure. Some seizures like the type Eira experienced does not necessarily have to be dramatically convulsive with rapid, violent shaking movement of the whole body.

What we should have realized early on is that a child with developmental delays is at greater risk for seizure attack.

As we drove to the nearest hospital, I kept on tapping her back and reaching inside her mouth for any object she might have swallowed. 

Big mistake. 

I could have put her in greater danger by forcing her tongue down. Thankfully, ignorance towards proper response to seizure attack did not cause her condition to get worse. 

And all it did to her was help release a quick burp. But no one should take chances like that.

A brief look into treatment history

Prior to her first seizure episode, we’ve been treating her recurring lung infection, fighting fever due to the infection. We were also working on her nutrition to improve her weight gain.

She lost so much weight fighting pneumonia after pneumonia.

The first seizure episode occurred on the 10th day that we were giving her antibiotics. We’ve been working with her pulmonologist to strengthen her lungs, prevent triggers and fight infection.

But we could not point to a single cause that would have provoked her seizure attack. She had no irregular activities, no fever, and had her meal two hours earlier.

Post seizure side effects

In the ER, her heart rate was elevated (although she’s always been tachycardic, which means her heart beats faster than normal). They also heard crackles from the lower right lung (back and front areas).

These are all typical observations after a seizure episode, says her pediatricians.

Soon after we took her home, she was feeling lethargic. She seemed exhausted and rested all night. It’s another common response following a seizure attack, mostly among those who had generalized seizure attacks.

These details are important to specialists; and if you are about to see a neurologist, you might want to keep notes of details to share with your doctor for proper diagnosis and optimized treatment.

First neuro consult and initial diagnosis

We had our first neuro consult four days after her seizure following the referral from her pulmonologist. Eira’s first seizure attack was not repeated up to the time of this writing.


I have no clue if it ever recurs.

Or, if she is having seizures during sleep as what studies¹ suggest considering that she had not been achieving developmental milestones.

During our first neuro consult, we discussed Eira’s medical history:

Eira was diagnosed with global developmental delay and partially diagnosed with RSS (Russell-Silver Syndrome). The Magic Foundation dedicated in the research and support services for families affected with growth disorders describes this syndrome:

Russell-Silver syndrome (or Silver-Russell syndrome) is a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure.²

Eira’s RSS diagnosis has yet to be confirmed with genetic tests that we left on hold for a little while longer so we can focus to resolve her immediate issues.

[I will talk more about RSS in the next blogs...]

After our narrative of the incident, Eira's neurologist suspected a possible generalized seizure. She needed to undergo an electroencephalogram (EEG) test to confirm the initial diagnosis.

What is generalized seizure?

A seizure episode is “a sudden, abnormal electrical activity in the brain”³ and there are different classifications for seizure. There are seizures that affect just partial part of the brain and there are types that affect both sides.

Eira’s seizure affected nerve cells on both sides of the brain and classified under generalized seizure. This suspicion was confirmed by the EEG results.

What happens during seizure?

Sudden bursts of electrical activity in the brain can cause different responses depending on the affected parts of the brain.

For Eira, I have no way of telling what it's like in terms of thoughts and feelings because she has speech delay and communication is a bit of a challenge.

I can only discuss the physical reaction of her body during the attack. It was like dropping in slow motion; and while it seems she is wide awake, she is unresponsive and unaware of her surroundings. The visible change of skin color turning her pale all over and her face changing to blue-ish tone hints for real trouble.

It was the most frightening part for a first time experience of seizure attack.

Eira just had one seizure episode to the best of our knowledge. Those who experience recurring seizure may observe that each episode occurs under similar circumstances.

Watch the video published by Pfizer discussing seizure with Dr. Freda Lewis-Hall, Chief Medical Officer of Pfizer, and Dr. Travis Stork. It’s a helpful resource understanding what happens during a seizure and what you can do if you see someone having one.

If you watched the video, you probably caught the key takeaways—

• Stay with patient until seizure ends
• Ease them to the floor so they won't fall
• Loosen anything around their neck
• Keep their airway clear by turning them to one side if possible

• Don't stop their movements
• Don't force anything into their mouth to hold the tongue down

Looking back, I regret forcing her mouth open because I was worried she might have swallowed something causing her to choke; but not realizing that I could have caused more danger.

Final Thoughts

I am still horrified learning that my daughter just had seizure. 

But we can only move forward from here and I am more inclined to understanding seizure and how we can control and manage it than to remain petrified that it is indeed happening to our daughter.

We started Eira on a three-year treatment program that could extend up to five years depending on her response.

Every seizure episode has risks for brain impairment, not to mention it is life-threatening. Medical intervention is necessary to treat seizure and prevent any further impairment to the brain.

I’m committed to further learn and understand seizure. You can email me for questions related to seizure or any other neuro-related query and join me again in the next blog for answers from our neurologist.

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References:

¹Fliesler, Nancy. 2012, May 4. “When a child loses milestones, consider sleep EEG studies. Retrieved online on November 12, 2017 from https://vector.childrenshospital.org/2012/05/when-a-child-loses-milestones-consider-sleep-eeg-studies/

²Magic Foundation. “What is Russell Silver Syndrome. Retrieved on November 13, 2017 from https://www.magicfoundation.org/Growth-Disorders/Russell-Silver-Syndrome/#1 

³Medline Plus. Seizure. Retrieved on November 16, 2017 from https://medlineplus.gov/seizures.html

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Recommended Books:

Seizures and Epilepsy in Childhood: A Guide

Description: An award-winning book used as the standard resource for parents in need of comprehensive medical information about their child with epilepsy.

Buy This Book

Epilepsy in Children: What Every Parent Needs to Know

Description: From a leading neurologist, experienced nurse practitioner, and registered dietician comes the complete guide to help your child achieve and maintain a high quality of life.

Buy This Book

Treating Epilepsy Naturally: A Guide to Alternative and Adjunct Therapies

Description: Drugs commonly used to treat epilepsy have some extremely harmful side effects. This book is an empathetic, practical, empowering look at treatment options, lifestyle choices, and ways of living well.

Buy This Book

Children with Seizures: A Guide for Parents, Teachers, and Other Professionals

Description: This concise, accessible handbook for families, friends and carers of children with seizures provides all the information they need to approach seizures from a position of strength.

Buy This Book

Will Seizure Slow Down My Seven Year Old Daughter’s Development?

I asked my daughter’s neurologist this question when we went for a consult soon after experiencing her first seizure attack.

What I learned after our neuro consult last week (Wednesday, November 8) is that seizure is typical among children with developmental delay.

The risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about 4 times greater than in the general population1.

An overview on pediatric first seizure, published in Medscape, suggests that a recurrence may not be experienced by most children2. That's a relief...

But a seizure attack could mean two things:

1. an initial presentation of a more serious medical condition; or
2. subsequent epilepsy.

Like every parent, I have questions about how I can help my child from a life-threatening seizure? Then, I also have these questions in mind—

• what does this seizure episode mean for my daughter in the long term? 
• will it further slow down her development?

If you are a parent seeking answers for the same questions we have, I hope this post helps you gain some insights.

What research tells me so far…

According to a neurologist in the Epilepsy Center at Boston Children’s Hospital, Tobias Loddenkemper, MD, he suspects seizure-like activity in the brain at night among some children with developmental delay3.

These spikes of electrical activity in the brain gets easily undetected because “very few physicians have been looking to see what’s happening at night,” says Loddenkemper3.

Excess brain electrical activity at night can disrupt development  — but if found, may be treatable3.

The above image shows Eira’s EEG result. Notice the electrical brain activity in different regions with every wavy horizontal line. See the spiky triangular waves appearing continuously during sleep. This reflects constant seizure-like activities that is not seen in her daytime EEG.

Final Thoughts...

Let’s go back to our initial questions:

• what does this seizure episode mean for my daughter in the long term? 
• will it further slow down her development?

It is good that we consulted with a neurologist earlier than later. 

It means we get the opportunity to manage and control episodes with proper medical treatment. Treatment for seizure usually takes three up to five years. 

From a neuro perspective, if seizure recurs especially at frequent intervals, there could be developmental milestones that may be slower to achieve.

If you suspect your child having seizure attacks, consult with your pediatrician right away, especially if your child has developmental delays.

I’m committed to learn more and understand seizure. 

You can email me for questions related to seizure or any other neuro-related query and join me again in the next blog for answers from our neurologist.

____________________

References:

1Epilepsy Foundation Metropolitan New York. "FAQ Epilepsy and Developmental Disabilities." Retrieved on November 13, 2017 from http://www.efmny.org/faq/epilepsy-and-developmental-disabilities/ 

2Waite, Shelley R. November 29, 2016. "Pediatric First Seizure." Medscape. Retrieved on November 13, 2017 from https://emedicine.medscape.com/article/1179097-overview 

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Recommended Books:

Seizures and Epilepsy in Childhood: A Guide

Description: An award-winning book used as the standard resource for parents in need of comprehensive medical information about their child with epilepsy.

Buy This Book

Epilepsy in Children: What Every Parent Needs to Know

Description: From a leading neurologist, experienced nurse practitioner, and registered dietician comes the complete guide to help your child achieve and maintain a high quality of life.

Buy This Book

Treating Epilepsy Naturally: A Guide to Alternative and Adjunct Therapies

Description: Drugs commonly used to treat epilepsy have some extremely harmful side effects. This book is an empathetic, practical, empowering look at treatment options, lifestyle choices, and ways of living well.

Buy This Book

Children with Seizures: A Guide for Parents, Teachers, and Other Professionals

Description: This concise, accessible handbook for families, friends and carers of children with seizures provides all the information they need to approach seizures from a position of strength.

Buy This Book