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Nathanael Lee


Zoe Joy Lee
Lilypie 1st Birthday Ticker
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts

Wednesday, August 29, 2007

Good News! Weaning off Medication


Good News! Great News! No more medicine! YAY!

Both of Nathanael's doctors (Prof Ong & Dr Choy) has now recommended that we begin weaning off Nathanael's medication. Currently he is on Epilim 200mg BD and a Co-Factor called Carnitine.The entire process will take 3-4months. This is a crucial step we are taking. It's a BIG step of FAITH! We will have to monitor him closely.

Please continue to pray cos we will need all the prayers from U guys. As most of you who has been following Nathanael's journey will know that he has been placed under this special treatment called Ketogenic Diet for almost a year now. He will be on it till 2009.

We wanna thank God that Nathanael has showing tremendous improvements! We're so thankful. Each day he is so amazingly different. Each day is better! GOD is GOOD!
To all the parents out there whose child is on this diet.....we know it is not easy but PRESS ON-keep on persevering ya! Dun give up. Feel free to call or mail us. We would live to connect with you! :)



Tuesday, April 10, 2007

Nathanael's 200th Day on Ketogenic Diet

Amazing ... 200 days have come and gone and Nathanael is doing well on his Ketogenic Diet. In fact Nathanael looks forward to his meal periods and thru his Meal periods he actually is motivated to "work" to get his food.

Initially (September 2006) when we started on the Ketogenic Diet we were apprehensive. Afterall we have tried so many things. So so so so many things to try and help control the seizures in Nathanael.

Not knowing that as we were reaching the end of our rope of Options in dealing with Nathanael's seizures, the Ketogenic Diet worked! Nathanael is Seizure Free !!!

We must add, that after reading tons of information, books, documentation of the Ketogenic Diet, that there was only a 20% working chance that the Diet would work on a child. Given the odds, we feel that it not by chance, nor by probability, but it is indeed a Mircale of God in Nathanael's life!

Since the stop of Nathanel's seizures in October, we have seen him achieve his Milestones, as he development progresses ahead each day.


We are BLEST by God because :

  • Nathanael seizures has stopped
  • Nathanael doesn't mind the food. (He's eating nearly the same cycle of Food and RCF Milk for the last 200 days), and he looks forward to his meal periods :)
  • Nathanael is responding positively to his therapies and showing improvements every day
  • Nathanael has stopped one of his Anti-Epileptic Drug (AED) - Frisium (Clobazam)

Thank you for your Prayers, Support and Love towards Nathanael and our Family. We thank you for being Strong with us as we go thru this absolutely amazing chapter of our lives. God is indeed our Strength and our Hope and our Portion! :)

We wanna BOAST of what God has done in Nathanael's life. We wanna Shout God's Fame that in this 200 Days God has been Faithful each day of Nathanael's life!

Thank You JESUS ... NO MORE Frisium!!!!

ONLY GOD can do this in Nathanael's Life ......

My God Is So Big

So Strong And So Mighty

There's Nothing My God Cannot Do


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Tuesday, September 05, 2006

Nathanael's next step - Ketogenic Diet

We will be starting Nathanael on the Ketogenic Diet sometime by end September.

We will be going to the General Hospital Kuala Lumpur (GHKL) or as some has aptly corrected us its now known as the Hospital Kuala Lumpur (HKL) [apparently its not that General anymore]

We are awaiting for the confirmation dates from both the Dietian and Metabolic Doctor on the dates and Nathanael will have to hospitalized for this procedure to take place.

Unlike what we normally know as a "diet", this is not just an abstinence of food, but a mathematically calculated diet done at all times to ensure that the correct amount and correct type of food is given to Nathanael. Can u imagine, we can only be one gram off the scale of what we are to feed him. So you can imagine how intense it can be.

In future, once we commence the Ketogenic Diet, we cannot just feed him off the table with whatever that we are consuming, we have to be extremely careful.

For those of you who want to know more about the Ketogenic Diet, Click Here.
We did an excerpt from a really good Book called the The Ketogenic Diet – A Treatment for Epilepsy


But in Brief .. read the paragraph below to get a clue!

The Ketogenic diet is a special diet to help children treat epilepsy seizures/fits.The name ketogenic means that it produces ketones in the body (keto = ketone, genic = producing). Ketones are formed when the body uses fat for its source of energy. Usually the body usually uses carbohydrates (such as sugar, bread, pasta) for its fuel, but because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. Ketones are not dangerous. They can be detected in the urine, blood, and breath. Ketones are one of the more likely mechanisms of action of the diet; with higher ketone levels often leading to improved seizure control.


So we ask that you pray along with us on our next step of the journey to help Nathanael cure his seizures. We will update you further on the confirmation of the dates and more details in the Blog. So keep coming back.


The picture above : Tks Daniel, took it from your Flickr website. It was such a great picture taken during our recent Healing Rally in church. Thanks!!

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Friday, September 01, 2006

The Ketogenic Diet

Many of you are asking us what is this Ketogenic Diet that we are starting for Nathanael, so we have put some documentation together from a book and some internet websites.

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B R I E F S U M M A R Y

The Ketogenic diet is a special diet to help children treat epilepsy seizures/fits.

The name ketogenic means that it produces ketones in the body (keto = ketone, genic = producing). Ketones are formed when the body uses fat for its source of energy. Usually the body usually uses carbohydrates (such as sugar, bread, pasta) for its fuel, but because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. Ketones are not dangerous. They can be detected in the urine, blood, and breath. Ketones are one of the more likely mechanisms of action of the diet; with higher ketone levels often leading to improved seizure control.

The typical ketogenic diet, called the "long-chain triglyceride diet," provides 3 to 4 grams of fat for every 1 gram of carbohydrate and protein. It will be a tough diet to keep and maintain as we will have to be totally strict about what Nathanael eats, and we have to keep providing him the proper diet with a +/- 1 gram difference from what is calculated.


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FULL DETAILS
Excerpt from “The Ketogenic Diet – A Treatment for Epilepsy”

Every child and every family who embarks on the ketogenic diet dreams of a total cure. Sometimes their dream comes true. Unfortunately the ketogenic diet does not result in a success story for everyone. Almost half of all children who start the diet stop during the first year. Some stop because the seizures have not improved sufficiently to make their efforts worthwhile. Some discontinue because of illness, noncompliance, or because the diet is “just too hard”.

The diet is less likely to work in the presence of a structural lesion, but still can be given a try before surgery. Its role in the treatment of infantile spasm is not known.

Consideration on who would be a good candidate for Ketogenic Diet
- 70% of people who have a single seizure will never have another
- 70% of those who have a second seizure will have their seizures successfully controlled by medication
- The ketogenic diet begins to be an option worth considering when two or more medications fail to bring about seizure control, or when medications cause unacceptable side effects
- If a first medication fails, the chance that a second or third will also be ineffective rises
- For approximately 20% of children with epilepsy, even the newer medications are either ineffective in controlling seizures or have unacceptable side effects. There is little evidence but much hope that the next new medication will provide better seizure control


What is Ketogenic Diet?
It is a rigid, mathematically calculated, doctor supervised therapy. It is high in fat and low in carbohydrate and protein, containing three to five times as much fat as carbohydrate and protein combines. Calories and liquid intakes are strictly limited. This diet should not be attempted except under close supervision by a physician.

The ketogenic diet improves control of seizures in more than half of the children who try it. Only 10% of children with very difficult-to-control seizures have their seizures completely controlled, but one third have their seizures mostly controlled, most have medication reduced and some become free of medication.

Fats in the Body
The human body has been designed and modified over time to meet potential emergency conditions. Thus the normal person has stores of energy in reserve (glucose and glycogen) to use when food is not immediately available. If no new sources of glucose are available within 24 to 36 hours, these stores are used up and the body begins to burn energy that it has stored as fat.
Fasting has been recognized as the mans of controlling seizures since biblical times. But fasting as a treatment for seizures has one major drawback, namely people cannot fast indefinitely because they would starve to death! The body would run out of fat and then burn its own muscle (protein). Even if seizures were controlled by fasting, they often would return when a normal diet was resumed.

The ketogenic diet simulates the metabolism of fasting body. A fasting person burns stored body fat for energy; a person on the ketogenic diet derives energy principally by burning fat in the diet rather than from the more common energy source, carbohydrate (glucose). As the water content of a fasting body is lower than normal, so the ketogenic diet limits liquid intake and lowers the water content of the body.

But unlike fasting, the ketogenic diet allows a person to maintain this fat-burning, partially dehydrated metabolism over an extended period of time.

The ketogenic diet, unlike anticonvulsant medication, it does not appear to have any adverse cognitive side effects. Even children with structural brain disorders such as microcephaly, hypoxic brain damage, prior strokes and developmental abnormalities have had success with the diet.

The ketogenic diet has been most often prescribed for children over one year of age. Children under the age of one year have been thought to have trouble becoming ketotic and maintaining ketosis.

The ketogenic diet must be calculated with precision, prepared meticulously using a gram scale, and followed rigidly.

To optimize the chance of success, the diet must be undertaken with the supervision of a dietitian trained in its use and a physician familiar with tits many quirks. Even seemingly small mistakes such as calculating too many calories into the diet, drinking too much water or using medications that contain carbohydrates (even sunscreen!) can throw off the diet and perhaps bring on seizures.

Success of the ketogenic diet requires the commitment, determination and faith of the entire family.

The ketogenic diet is intended to control seizures. Decreasing and discontinuing medications is only a secondary goal. Improving intellect is a hope and desire, but that is not what the ketogenic diet is designed to do.


How does Ketogenic Diet Work?

The body burns three types of fuel to produce energy. These fuel types are :
- CARBOHYDRATES : Starches sugars, breads, cereal, grains, fruits, vegetables
- FATS: Butter, margarine, oil, mayonnaise
- PROTEINS : Meat, fish poultry, cheese, eggs, milk


When carbohydrates are digested the body converts them to glucose.

Glucose is the fuel source burned by the body to produce energy. When its supply of glucose is limited, the body first burns adipose (fatty) tissue for enegy. IF caloric needs are not met by boy fat, the body then draws from its protein stores (muscle), compromising good health.

The body cannot store large amounts of glucose; it maintains only about a 24-hour supply. Fasting for 24 hours depletes body glucose. Only glucose is depleted, the body automatically draws on its other energy source – stored body fat.

In the absence of glucose, fat is not burned completely, but leaves a residue of soot or ash in the form of ketone bodies (acetone and acetoacetic acid). These ketone bodies build up in the blood.

The ketogenic diet deliberately maintains this buildup of ketone bodies in the blood by forcing the body to burn fat, instead of glucose, as its primary source of energy.

The ketones that are left from the burning of fat are beta-hydroxubutyric acid and acetoacetate. Beta-hydroxybutyric acid can be used by the liver and by the brain as a source of energy. Acetoacetic acid is excreted in the urine and imparts a sweet smell to the breath that has been likened to pineapples.

When ketone body levels are large enough, as indicated by a simple urine test, it is said that the body is “keotic” (pronounced key-tah-tic) or in the state of “ketosis”. Ketosis is also evidenced as mentioned above by a fruity, sweet odor to the breath.

Fat energy is the basis of the ketogenic diet. In the presence of large levels of ketone bodies, seizures are frequently controlled.
[Unfortunately we do not know precisely why the diet works!]




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Source: The Ketogenic Diet: A Treatment for Epilepsy

Web Pages:



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Sunday, January 01, 2006

Nathanael's Fits Diary



Nathanael's 2006 Fits Diary

Below are a graphical representation of the seizures
counted daily from 1 Janauary 2006 to the present month.
Jan 2006

Feb 2006


March 2006



April 2006



May 2006

June 2006

July 2006



August 2006



September 2006



October 2006 only






What happens in a seizure?
Excerpt from Epilepsy Canada

Special cells called neurons help to form an electrical and chemical network in the brain. Under normal conditions, electrical signals move along these neurons. They influence the release of different chemicals which further influence the electrical activity of subsequent neurons. Many external and internal influences can cause abnormal activities in the electrical signals of these neurons. A change in the regular brain electrical activity may result in a seizure. Repeated seizure events may be a sign of epilepsy. (Note: while all forms of epilepsy are characterised by some form of seizure disorder, not all seizure disorders are indicative of epilepsy.)




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Wednesday, February 23, 2005

Nathanael's Medical Condition



Nathanael's Medical Condition

Nathanael is diagnosed with "Infantile Spasm".


Nathanael Lee was born on 22 September 2004. He had a normal birth and was deemed healthy and normal. [at Damansara Specialist Centre]

On his third day of life, he was admitted back into hospital due to jaundice, whilst under observation, our pediatrician (Datin Dr Vasantha) discovered that he had low sugar levels (hypoglyciema)

After a week in hospital, our doctor found that his sugar level was ok, and the jaundice had subsided, and Nathanael was discharged from the hospital.

On our follow up visits (both Nathanael’s third & fourth month) with our pediatrician, Dr Vasantha started to notice that his development skills were slightly slower, and she asked us to seek for a 2nd opinion.

On the fifth month we visited a Pediatrician Neurologist (Dr Malinee) at Pantai Hospital who during consultation noticed that Nathanael was having seizures. She immediately asked us to admit him and informed us that she will be doing tests on him. [Read more on the Tests]

There were many tests done, EEG (ElectroEncephaloGram) , MRI Scans (Magnetic Resonance Imaging) , VEP(Vision Exposed Potential) , EVP, Xray, ECG (ElectroCardioGram), Lumbar Puncture, Eye & Ear Tests, Blood Tests, Metabolic test and some others.

At this juncture, that Dr Malinee diagnosed Nathanael with "Infantile Spasm". /West Syndrome (Form of Epilepsy). She also had a visiting consultant (Dr Choy Yew Sing of General Hospital KL) to join her on Nathanael’s diagnose.

After all test results were back, we switched to a Government Hospital and was refereed to Prof Ong Lai Choo of Hospital UKM.

From mid 2005 until present, we have been consulted by both Prof Ong Lai Choo. She is now looking into Nathanael’s situation.

Nathanael is currently on two anti epileptic (anti convulsant) drugs, Frisium (Clobazam) and Epilim (Sodium Valproate) and undergoing physio therapy, occupational therapy, speech therapy, hyrdo therapy, early intervention classes at HUKM, Spastic Centre and Bridges.

You can view the records of his Seizures in the Fits Diary section.

UPDATE March 2006

Nathanael tried a steroid treatment called IV Methylprednisolone, where he was hospitalized at HUKM for Two days to administer this Treatment. But the Steroids had no effect on Nathanael.
Link1 Link2

UPDATE September 2006

Nathanael started on the Ketogenic Diet at the Hospital Kuala Lumpur, under the care of Dr Choy Yew Sing (Metabolic / Genetic Specialist) and Puan Mariam (Dietitian). We are currently still observing the progress of the Ketogenic Diet in Nathanael. Nathanael was admited into the hospital for 9 days. To view the daily progres, click on the links below.

[Day 1 & Pt2] [Day 2 & Pt2] [Day 3 & Pt2] [Day 4 & Pt2] [Day 5] [Day 8] [Day 9]

UPDATE October 2006

Nathanael has started to go to School. Yes a School, called Bridges which has a program for Early Intervention for Children. Its a once a week visit to Bridges with a one to one teacher. Teacher Dolly is Nathanael's teacher.

UPDATE January 2007

Nathanael is Seizure Free !!! Praise GOD!!!! After starting on the Ketogenic Diet in September, we ran an EEG - ElectroEncephaloGram test in December and we managed to get a report from the Doctors. The EEG report declares that Nathanael is Seizure Free!

We thank GOD for this miraculous healing, and now we need to continue to work on his on-going Development. Thank you for your prayers and support, and continue to pray along.

MILESTONES

Read some of Nathanael's Milestones (Progress Improvements) by clicingk here!

We are thankful for what God is doing in Nathanael as we see Nathanael improving each day.


Nathanael’s Panel of Doctors
With much appreciation to the Medical Caregivers below

Doctor Specialist
Datin Vasantha Matthews - Child Pediatrician
Prof Ong Lai Choo - Child Neurology
Dr Choy Yew Sing - Genetics & Metabolics
Datin Teoh Su Lin - Ophthalmologist
Dr Joseph Alagaratnam - Ophthalmologist
Dr Cila Umat - Audiologist
Dr Loganathan - ENT Specialist
Pn Mariam - Dietician



Therapist
Physio & Hyrdo Therapy (HUKM) - Yoke Fong
Occupational Therapy - Ms Teo

Previously Consulted

Prof C T Lim - Neonatologist
Dr Malinee Thambayah - Child Neurologist
Dr Vigneshwary - Child Neurologist



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