Joseph, Noah, Zoe Joy, Elijah, Nathanael

Nathanael’s Medical Condition


Nathanael’s Medical Condition

Nathanael was diagnosed with “Infantile Spasm”.

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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 in these four posts : 1 2 3 4.

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.

UPDATE April 2007

200th Day on the Ketogenic Diet, check out Nathanel’s progress here!

 

MILESTONES

Read some of Nathanael’s Milestones (Progress Improvements)!

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

Nathanael’s Doctors  & Specialists
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

Speech Therapist – Melissa Peters

 

Previously Consulted

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

 

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Ivy says:

Hi there, I was doing some findings on foot solutions and found your blog posted on Schein and eventually read this post. Hope your son is getting healthier day by day. Do take care of yourself as well!

shamini says:

My son 1 year and 4 months ready almost progressing level very slow, not even turn or not yet start to crawl. He under medication and doctor also can’t find his disease. he has global delaying and epilepsy started 5 months old. he also going for Fisioterapy and taking alot of vitmin but still no improvement.Hope u send ur email address and thank you.

Mary Ann says:

Hi, your son is just like my 3 year old daughter who was diagnosed with idiopathic epilepsy specifically epileptic spasms when she was 2 months old. Is it ok to get your email address? I would like to seek your advice and help on different interventions. She has global delay as well. Her seizures has lessen and improved but still has mild episodes twice or thrice a week. She has 3 medications: phenobarbital, lamictal and topamax. She’s undergoing OT and PT as well. I hope you can send your email address. Thanks so much!

evelyn yap says:

is really good to hear ur son progressing everyday. my daughter is 8yrs old now but when she was an infant she had a rare and agressive tumour called haemangioma kassabach merrit. she couldnt breathe and had to be ventilated. she was on full dose of steroids everyday and interferon medication and even vincristine medication for cancer.
when she was out of all the critical problem, i was not aware of her delay of development at all as she was my first baby. i did not know who to go to until one day i realised something was wrong with her as she doesnt talk much but hitting and scratching alot of babies and children wherever she goes.
then i always had to apologise to the other party. so i decided to look for a specialist at her age of 4yrs old! i went to dr.teoh hsien jin to dignosed her and to my surprised her report came out to say her development was so much delayed and was around 1-2yrs old of development. then i started to remember she started walking at the age of 3 yrs old and starting her speech around 3 1/2 yrs old after i started her schooling at age 3 yrs old.
i started late for her early intervention. but till now i never give up. i still bring her to ot and speech therapy. she even attending kumon, ballet,art, music(piano) and soon she will start her modern dance. in her school she swim 3 times aweek. i was very proud of her now and she did really improved alot these 3yrs.
another matter i would like to stress out to you is that now ur son is young, get him ready for his development as much as u can cos wen you come to 6yrs old there will be more problems for you especially his education and finding a perfect school for him.
in malaysia, the main problem for school is that they tend to isolate the special needs from the normal children. i had started looking for a school for her since she was 4yrs old till we found her present school-Tanarata International Schools. they have good teachers to guide them and the best about this school is they never treat them as a special needs student but equally with the other children
my daughter learnt alot from the normal children from her skill of speech and social skills. is a good sign though.
so i hope as a mother with special needs never ever give up on them and the need our support and encouragement forever.

daren says:

Dear Building Rainbows & Rebekah

Tks so much for your encouragement. We can only take each day one step at a time, and with Him guiding us every step … we’re bound to reach the “promise land”. 🙂

Rebekah Khoo says:

Im so encourage by your endurance and faith in God. He is indeed miracle working God. He is our healer! physical,emotional & spiritual.
One day, we all shall reach our Canaan, the fullnest of His blessings if we do not give up.
All praise & glory to God.

build rainbows says:

I am so happy for the blessings your family has received. God is truly good. Prayers do help make miracles.

The world is filled with miracles, and people who want good for you. Sometimes you don’t even know them.

Stay well, and blessings to you !