7 year old boy desperately in need of help

Dear Angels out there in the world,

I really in need of help by anyone who can help to cure or at least ease the pain of a 7 year old boy.
My friend's son is boy who has been suffering with an unknown disease however few doctor diagnose him as an epilepsy/meningoencephalitis/encephalitis. The boy's name is Shane, firstly i will expalin from the beginning of the story...

1st seizure:
On 8th of April Shane was playing computer game at his home around 2pm. Suddenly he felt his right arm & leg started to twitch, explained the boy, he felt as he has been electricuted. The first experienced he was able to talk, walk, act normally. Then the second one he started to get more worried, then the thirs one is more painful where started to cry and his right arm & leg stiffed as if an epilepsy. He then immediatly sent to the nearby hospital (PIK), where the doctor checked and prescriped him with 3 kinds of medicine, one of them was Depakene. He was told to take it regularly twice a day. He was able to do normal activities for the rest of the week.

2nd seizure:
On 18th of April. Shane was lying sitting down on the table and resting his head on the table. Out of sudden he fell of the chair and started to have a seizure, this time was more severe. His whole both hands and legs hardened, face too, and he was unconsious. He was given a massage on the neck with an onion (chinese remedy) and slowly he consious. This steps repeated 3 times and on 2nd/3rd seizure saliva started coming out of his mouth. He then immediatly rushed to the hospital (PIK), during the trip to the hospital he was consious but weak.

Shane was hospitalized for 4 days in the hospital. Medication gaven was Depakene, Stesolid, and others (vitamin & fluids infusion). Shane conditions was healthy and able to get off the bed walk, run, talk and other normal things. An EEG test was done on the 2nd day and the result was, the left Temporooccipital complex wave is slow and high voltage and repeatedky on the left Parietocentral. He then taken home, eat medicine at home and off from school for another 4 days.

3rd seizure:
On 27th of April. Since the 2nd seizure he was fine until the 27th. Shane had a seizure but not as heavy as the 1st and 2nd. Since it has been more than a week since last visit to the doctor, he was taken back to doctor just for check up, doctor said it is still fine as long as he keep eating his medicine. Up to now he was still taking Depakene regularly and same dosage.

4th seizure:
8th of May - till this moment i'm typing 24th of May. Shane seizure repeatedly for about 4 times and each time about 10 minutes long. The seizure was mostly on right side of his body, he felt pain and was crying. Again rushed to the hospital and parents instruted doctor to check throughly so he needed to stay in hospital, he was weak. Starting from the second day Shane wasn't able to get off the bed or even sit, basiclly he is like vegetable. From the second seizure Shane used to doctors, one is child doctor and neourologist. MRI was taken on 11th of May and there was no negative sign, everything is normal.

He was kept in this hospital (PIK) for 12 days and on the 7th days had to be in the ICU for 3 days. Since the 4th seizure Shane's condition had gotten worse and worse. Often had seizure, involuntarly movement, and emotional. On the 10th of May the neurologist asked to go on a procedure of Cerebrospinal fluid analysis (spinal tap)/Lumbrical Punture (LP) to check for virus and the result was good, no infection. Starting from the 3rd day in PIK hospital, his both eyes are often staring on the right corner and clinching/locking/biting his teeth (twice bited on his lips till swollen). On 12th he's blood was taken for test for 5 types of Herpes complex virus and CMV, all result comeback negative. During the last 4 days in this hospital, the doctors seems to given up on the kid but did not admit it, instead requesting take on more tests. We opposed their request and waited Shane's condition to be a little bit better so that we could transfer him to another hospital. Because during the last days in PIK hospital we consulted with one of the best child neurologist doctor in town and he said he could help Shane's condition to be better or even cure it.

On the 12th day which is 19th of May we moved Shane to PI hospital. The reason we moved him because of the incompetent doctors at PIK, malpratice, and instead of getting healthy the poor boy's physical condition have gotten worse. At PI the doctor was very friendly & profesional (know what he is dealing with). He told us that instead of finding the virus, firstly the epilepsy should've been taken care. Since the epilepsy wasn't handle promptly (by increasing the epilepsy medicine dosage everytime seizure occured), the boy is know suffering from Encephalitis and Choreoathetosis. Medicine that are given to fight Shane's epilepsy are Phenylbarbital, Luminal, Dilantin, and Stesolid (the last 3 med and Zofirax and antibiotic had already been given since the 4th seizure on the day he entered ICU at PIK hospital). On the 2nd day at ICU the boy had fever up to 39 degree celcius. Since he entered PI hospital his seizure and involuntary movement are getting less (from once to twice a day). Eventhough this a good sign, he is still weak and unable to get up from the bed and what worried the family most is, he is still having seizure and unable to talk or see focusly.

Help:
1. What kind of sickness/disease?
2. What is the cause of this kind of illness?
3. Is it inherited from parents/grandparents?
4. What tests are needed?
5. What kind of treatment needed?
6. Can this type of illness be cured and has no mental affect in the future?
7. What if it is not epilepsy?
8. Which one was more important, find out the virus first (PIK hospital) or cure the epilepsy first (PI hospital)?
9. What else could the family do?
10. Any other ideas?

Please help us to the answers to this killing puzzle. The family desperately in need of advice, support, and a cure for Shane.
On behalf of Shane's family, i would like to thank you deeply from my heart.
Please contact me directly at willrola@hotmail.com

Kind regards,
William

By IngridGuerci
Posted May 24, 2009 at 11:50 am
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Most of us here at this group are survivors of all different types of encephalitis; the others are caregivers. We do not have the professional, technical information here but you might want to go to www.encephalitisglobal.org and read some of the information there (this is our 'official website') or you might want to go to: http://www.encephalitis.info/

Ingrid/NYS
HSE 12/95 (I was 45 years old)

By WendyStation
Posted May 24, 2009 at 5:26 pm
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Hello William...
We are not medical professionals here...we are encephalitis survivors, caregivers and family members.
Some un-professional responses to some of your questions follow...

1. What kind of sickness/disease?
Encephalitis means inflammation or swelling of the brain.
2. What is the cause of this kind of illness?
Encephalitis can be caused by many things, including the bite of a mosquito. Please review the website of the Encephalitis Society http://www.encephalitis.info for a list of causes.
3. Is it inherited from parents/grandparents?
No.
4. What tests are needed?
5. What kind of treatment needed?
Basic treatment is rest and monitoring the patient.
6. Can this type of illness be cured and has no mental affect in the future?
Once the inflammation/swelling subsides, the medical professionals can test and measure what damage was done. In many cases, any skills lost can be re-learned.
7. What if it is not epilepsy?
8. Which one was more important, find out the virus first (PIK hospital) or cure the epilepsy first (PI hospital)?
9. What else could the family do?
The family can only be patient and supportive, and research to learn more.
10. Any other ideas?
Have the family join this discussion forum!

By willenium
Posted May 25, 2009 at 5:31 am
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Dear Ingrid,

Thank you so much for directing me to the sites gaven above.
I did not post any comment on http://www.encephalitisglobal.org because it's the same admin as inspire.com.
However i did send email to http://www.encephalitis.info/ regarding Shane's situation.

Regards,
Will

By willenium
Posted May 25, 2009 at 5:35 am
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Dear Wendy,

I really appreciate the answers u provided above. Do you know directly which doctor handle best for Shane's condition? If u dont mind maybe u could let me know the doctor's contact.

We are just so confuse, it seems the road ended just like that. It's very painful seeing Shane on bed for more than 2 weeks now.

Thank you so much.
Kind regards,
Will

By WendyStation
Posted May 25, 2009 at 12:23 pm
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I cannot recommend any physician, Will. I live in Canada, and was treated 10 years ago.
Is Shane in hospital now? I assume the biggest problem at the moment is seizures, yes? I hope the doctors can find the proper medication for this problem.

By anaspal
Posted May 25, 2009 at 6:31 pm
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Hello dear...wishing you the best for the child!my son suffered from encephalitis 3,5 years ago.now he is 6,5.he was a totally normal child...anyway,as far as i know doctors try to "cure" epilepsy,because they only know how to deal with herpes encephalitis.and that is zovirax.they dont have antibiotic for other type of E. my sons exam also look fine at the beginning..mri clear,exams clear,any positive virus.only his eeg was disorganised from the beginning.the 3rd mri showed the inflammation on the left side.the first 2 weeks he could communicate,etc.but after spending 23 days in icu he couldnt do a simple thing.doctors can only help the body protect itsself,so that enemy could leave with the least possible damage..one think i wont forget is that doctors couldnt decide if they sould give cortizon,because of the fear of herpes,despite the fact that all exams were negative.i strongly believe that this would have helped my child not suffering for so long and having the best of a recovery...
find as many information as you can!!!
im not a doctor,am just telling u how easily things went wrong for us and its not rare...
hope god help u all
be strong and have faith!!!!

By willenium
Posted May 26, 2009 at 11:47 am
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hi wendy,

i was living in vancouver before. but now im in korea for work projects, however shane is treated in hospital now at jakarta indonesia. i will visit jakarta on friday tho.

yes, shane is still in hospital up to this moment. infact i got a call about 2 hours ago that shane had anothe seizure (last seizure was 2 days ago).

right now we can only pray for God's mercy and God uses the doctor to conduct in a proper way.

thank you for ur advice

By willenium
Posted May 26, 2009 at 12:07 pm
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Dear anaspal,

i hope the best for ur son and we will help to pray for ur son. if i may ask, why did it take 3 times MRI in order to identify the inflammation? u mentioned on the left brain, does his eyes staring to right corner side and seizures mostly right side of his body? coz shane is experiencing right side more, thats why doctor assume that the damage is shane's left brain (shown on his eeg that there is a strange wave activity on his left brain).

for seizure med, shane is taking: dilantin, luminal, Phenylbarbital, tregatol, stesolid, depakene.
is ur son also takes these medication?

for now we can only keep our faith with this doctor and pray to God every hour of the day.

thank u so much for ur support

By anaspal
Posted May 26, 2009 at 6:26 pm
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Dear willenium,everything begun on 27/02/06 with a status epilepticus 12 days after his 2nd MMR immune shot.the 1st MRI on 2/03/06 clear.the 2nd MRI on 6/03/06 clear.the 3rd on13/03/06 not clear.I think that happened because it was in the beginning,so some time was needed in order to show the inflammation.when the damage is on right you see reaction on the left side of the body and the opposite.about the eyes,i heard that the corner eyes watch is where the damageexists.if he looks up-right corner,the problem is right...but i dont know it for sure...during that period in hospitals he took epanutin,depakine,manitol,zovirax,stesolid(they use that in order to stop big seizures-3 minutes and more,to avoid damages.after that the child sleeps),dormicum,12gr g-sferin(once),phenobarbital,barbitan,tazocin,fentanyl,adrenaline,tegretol, kanevron.now he is taking keppra and lamictal.as u understand the medicine all doctors use are the same...
hope i helped in a way,anything else you need i ll be at your disposai,
hope you understand my writing(im greek),
God will help you,we all pray!!!

By willenium
Posted May 30, 2009 at 1:01 pm
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Dear anaspal,

i just visited to shane again today, i spent whole day in the hospital. i've left him for 6 days for business trip and he is still in the same condition. im speechless and tired, i dont know what to do.

while i was there his temperature was 41 degree celcius and he had a seizure that lasted for about 20 mins. he was given stesolid & tegretol. 1/2 hour after taken the medicine he was still having involuntarly movement. i video taped during his seizure & 1/2hr after taken the medicine, could we post video in this website?

thank u for accompanying me in this situation.
greatly appreciate it.

By anaspal
Posted June 3, 2009 at 6:14 pm
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Dear willenium,
how things are going?anything new..,his temperature?i cant understand after so many days why is it so hard to control at least his fever!!!and what they are waiting(doctors)for..and leaving him having big seizures?as far as i know they should give stesolid after few minutes.not just staring him for 20..the thing is that the boy will go home,but in what condition?and docs will continue their lives...after all that the family has to face and deal with it in the best way...anyway,did he have another mri,other exams?hope to hear from you soon!
wishing the best!!!!!!!!!!!

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