Under the shadow of Your wings...

"How precious is your loving kindness, God! The children of men take refuge under the shadow of your wings." Psalm 36:7

On 23rd September 2015 we took J for his 6 month follow-up to the neurologist. The examination included an EEG. 

No trace of epilepsy could be found. The kid is completely healed! 

Thank you Jesus!!

Don't think you have to reach a certain "level" of faith for God to answer your prayers. Just ask Him!

"For thou hast been my help, and in the shadow of thy wings will I rejoice." Psalm 63:7

Ask, Seek, Knock - All Praise to God!

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened." Matthew 7:7-8

We found out about Dr.Michael Lippert, a well-respected Paediatric Neurologist through Matthew’s Friends in May 2014 but the waiting list for an appointment was already full for the year by that time. Out of the blue we received a call from Dr. Lippert’s office on Monday 18 November 2014 – due to a cancellation they had an opening! Praise God!

And the outcome?

• The initial diagnosis was incorrect and subsequent medication for almost a year totally unnecessary.

• J’s actual condition is twofold – potential Benign Rolandic Epilepsy (BRE) and as previously suspected, Periodic Limb Movement disorder (PLM).

• BRE is a “child epilepsy” which J will most probably outgrow by the age of 12. Because he never before had and most probably never will have a seizure, it is categorised as “potential”.

• J’ will be systematically taken off Tegretol over a period of three months.

• The PLM will be monitored.

This is such a relief! Thank you Jesus!

We still need to seriously address J’s learning challenges. Dr. Lippert indicated that J will have to work very hard but that physical development is also very important for him. We are currently considering a number of options to address these issues.

J also passed grade 1 with a decent report. All the praise to our Mighty, Only, God!!

Always trust in God and don’t be afraid to ask questions!

“Behind my life the Weaver stands and works His wondrous will - I leave it in His all-wise hands and trust His perfect skill."

Awesome Healer

Mar 9:23  "Yes," said Jesus, "if you yourself can! Everything is possible for the person who has faith. {9:24}  The father at once cried out, "I do have faith, but not enough. Help me have more!" 

There will be a special prayer meeting on Friday 7, 2014 at 19:00 and laying on of hands for little J. We pray that the Almighty Father will heal him completely.

Please keep us in your prayers!

Joh 14:13  "And I will do whatever you ask for in my name, so that the Father's glory will be shown through the Son. {14:14} If you ask me for anything in my name, I will do it."

Contradictions

"Uncertainty is a very good thing: it's the beginning of an investigation, and the investigation should never end" - Tim Crouch

We made an appointment with a paediatric neurologist who had one look at the EEG and immediately informed us that J does not have Petit Mal. She also mentioned that the "abnormal" wave patterns might even be normal (?!). 

The neurologist prescribed Tegretol, which was to address the "abnormal" focal wave patterns. The theory was that if Tegretol had a positive effect, J probably suffers from epilepsy, if not - back to the drawing board. We were also instructed to monitor the body spasms, which everyone assumed at the time were epilepsy seizures.

During the same time we contacted a specialist dietician, who worked out a low Glycemic Index (GI) diet for J. Literally, overnight, J's concentration span improved and the excessive tiredness disappeared. We are still astonished at the improvements J showed since his sugar intake was limited! Do yourself a favour and visit the GI Foundation. Also check out this and many other documentaries about sugar.

During a six week period J was weaned off Epilim, while the Tegretol dosage was systematically increased. The bed-wetting stopped completely but the body spasms continued. Although lower in intensity, the actual quantity of spasms throughout a sleep cycle, remained the same. Monitoring right through the night revealed that J was almost constantly moving his body (e.g rolling, pulling legs up, etc.) - no wonder he was so tired in the mornings!

We discovered a magnificent Android application called Vibration Monitoring. We placed a mobile phone on top or even underneath J and was able to get a rough idea of spasm intensity and frequency. Using a video camera, we were able to monitor J for three whole nights during the six week period. By doing this, we were able to monitor potential spasm changes as the medication dosages were altered.

After showing our results to the neurologist in October 2014 she decided that J should undergo an extended, overnight, video EEG.

And the result? 

•  The latest EEG profile (Tegretol dosage at 600 mg) was identical to the first EEG profile, which was done prior to any medication administered. There was absolutely no change. 
• According to the analysts, there was no correlation between the spasms and the "abnormal" waves. We are still not convinced about this finding.

What does this mean?

• Tegretol has zero effect (in J's case) on the "abnormal" waves.
• If the analysts are right it means the spasms probably indicate some sort of sleep disorder (e.g. Periodic Limb Movement disorder).

What now?

• The neurologist prescribed Ritalin to address J's attention span problems, but kept Tegretol at the same dosage.
• Currently,we're still not sure what is going on. We have so many questions:
• If the epilepsy medication does not have any effect on the "abnormal" EEG waves, why take it? 
• Are these "abnormal" waves causing brain damage? 
• If so, why not try something else. 
• If not, why bother taking Tegretol?
• Our next appointment with the neurologist is in November - we will keep you posted!

Experience: that most brutal of teachers. But you learn, my God do you learn. - C. S. Lewis

Beginnings

Be merciful to me, O God, be merciful, because I come to you for safety. In the shadow of your wings I find protection until the raging storms are over. - Psalm 57:1

In January 2014 J started his first year in primary school. Shortly after we received a letter from his teacher regarding problems J experienced, which included attention span. We sent J for a battery of tests - hearing and eye tests, occupational therapy evaluation as well as an orthodidactic assessment. Both the occupational and orthodidactic therapists indicated that there were definite underdeveloped areas.

We don't elaborate much on our experience with occupational therapists on this blog, save to say that it was the closest we ever came to financial rape. We know there are very good, very competent occupational therapists out there - we just haven't met them yet.

We consulted a paediatrician about the reported problems as well as J's bed wetting, which increased dramatically.

J's paediatrician sent him for an Electroencephalogram (EEG) early in March 2014, which indicated the following abnormal focal temporal waves. 

A subsequent Magnetic Resonance Imaging (MRI) scan showed no abnormalities, however. The paediatrician decided that J probably had Petit Mal (absence seizures). J was put on Epilim (Liquid) and we were told that the problem will probably go away in about two years. This was not acceptable to us. If one doesn't know what it is, how can one predict that it would go away? You have to know it before you can ignore it ... right? 

However, it seemed if J's concentration span improved and the bed-wetting stopped. 

The paediatrician then prescribed Epilim (prolonged release tablets) and in about a week's time, J's concentration span started to falter and in about two weeks time the bed-wetting was back with a vengeance. Blood tests (which were frequently conducted) indicated lower sodium valproate (Epilim related) levels with the prolonged release tablets. Although J was put back on Epilim (Liquid) the bed-wetting continued, thereafter. 

Overall prominent symptoms during this period were:

• Excessive tiredness
• Short concentration span
• Slight, medium and heavy body spasms
• Paleness
• Bed-wetting
• Nausea and stomach ache, supposedly medicine-related

"Courage, dear heart" - C.S. Lewis

Signs

"Hardship often prepares an ordinary person for an extraordinary destiny." - C.S. Lewis

Even when J was a baby he would sometimes appear drawn into himself. During these instances he would stare in front of him with a slight frown, looking very serious. We always joked that he will probably become a minister due to his seriousness. 

When J was about three years old, his kindergarten teacher indicated that he frequently didn't react to instructions or even voices for that matter. She suggested that we take him for a hearing test. We knew J didn't have hearing problems but we took him for tests anyway and the audiologist confirmed that J's hearing was normal. Everybody else's response was: ... "come on he is a 3 year old child for goodness sake!". 

In April during his fifth year, another teacher indicated that J was very slow in completing tasks, did not follow instructions through and had problems with attention. We took J to a therapist, who indicated that, except for some minor reflex underdevelopment, there were no serious problems. Everybody else's response was: ... "come on he is a 5 year old child for goodness sake!". 

We noticed that J would have spasms during his sleep. For example, a tell-tale sign that J fell asleep was a single initial shoulder jerk. More spasms (shoulders, arms legs) followed during a sleep cycle, which varied in intensity and frequency.

At about age six, occasional bed-wetting started but there was no pattern we could detect. And in anyway - J was just a small child for goodness sake!

“Isn't it funny how day by day nothing changes, but when you look back, everything is different...” - C.S. Lewis

Light

Daddy I'm happy;

I'm bursting with light;

I'm shining like the sun;
no shadows hide in me;

not even behind my heart.

- Beautiful J