Help Aidan to Fight with His Illness

Update posted by Arif Perdana On Oct 06, 2019

Taking care of my son for almost a month made me realize that understanding medical terms is important. In his book, Law of Medicine, Professor of Medicine from Columbia University, Siddharta Mukherjee said that the discipline of medicine concerns the manipulation of knowledge under uncertainty. Medicine relies on human judgments and is not free from bias. He also noted that a medical test can only be interpreted sanely in the context of prior probabilities and any tests has false positive and false negative.

Aidan's case made us as parents learnt a lot about the things have been happening to him. During the extremely exhausted situation, we forced ourselves to find and read reliable medicine articles and books. We discussed with ones who are in medical field. We realized that clinical judgments play essential roles on patients' condition rather than purely looking at tests and scans.

From what we observed and assumed, what Aidan had at the first time he was admitted to hospital, he looked like shivering/tremor rather than having seizures. Our assumption is then confirmed by another doctor. We have also read reliable literature and talked to nurses and understand the previous similar cases that they have encountered. Aidan indeed was shivering instead of seizures. Not all body shaking like shivering is caused by seizures. Shivering normally does not last longer.

Then, a big question mark always come to our mind. Why didn't the doctors do more clinical observation at first. Instead, what they were doing was running a battery of tests immediately. Even when Aidan was in the first one hour at hospital, they immediately did CT scan. When he apparently looked like to be back to a normal condition after four hours being admitted to hospital, the doctors decided to take his spinal fluid. In retrospect, why didn't they do the EEG test first rather than taking the spinal fluid? I was shocked at that time when the doctors said they want to test Aidan's spinal fluid. At the same time I didn't know what to do cause no one I know I can consult with. What I did then was agreeable to the doctors' advice. Overtime, I then really disappointed with the way the doctors treated my Son. At the end, all the tests and scans then came with negative results and no critical issues including what the doctors expected about autoimmune. They did not seem to do the tests and scans judiciously.

However, the things have happened and I cannot reverse it. The medication given to Aidan was strong medicines which will take time for doctor to lighten and completely remove them and let him to recover from the side effects. I realized that the decision to transfer Aidan to another hospital should be much earlier. In retrospect, had he been here earlier, he would have more judicious treatments and recovered quickly. Aidan is stable, he can cry loudly, he start to breath normally. He, however, still needs time to be physically active.

The doctors here now do the tests and scans judiciously. They use the tests and scans to confirm their prior knowledge and clinical observation to increase their probability of making decision under uncertainty. As Mukherjee noted, "Prior knowledge” is what is at stake when the doctor observes patients behaviour, weighs evidence and makes inference rather than immediately ordering multiple tests and scans. Mukherjee then stated that the “prior knowledge” is the kind of thing that old-school doctors do very well, and that new technologies in medicine often neglect.

As a wrap up, I came across to what Siddharta Mukherjee experienced when he was an intern, a resident and a fellow in oncology at Massachusetts General Hospital, US. He stated clearly in his book.

“I had never expected medicine to be such a lawless, uncertain world. I wondered if the compulsive naming of parts, diseases, and chemical reactions—frenulum, otitis, glycolysis—was a mechanism invented by doctors to defend themselves against a largely unknowable sphere of knowledge. The profusion of facts obscured a deeper and more significant problem: the reconciliation between knowledge (certain, fixed, perfect, concrete) and clinical wisdom (uncertain, fluid, imperfect, abstract). " (Mukherjee, 2015, pp. 8)

Update posted by Arif Perdana On Oct 03, 2019

Last Wednesday, NUH expected to discharge my Son at least two weeks from paediatrics ICU. However, at KPJ Puteri, after five days treatment from last Thursday, my Son has been discharged from ICU to High Dependency ward. So far he is doing alright. He still needs time to recover his breath. After extubation last Sunday, he breathed hardly and noisily cause his throat muscle was swollen and had phlegm, but now is getting better. His body temperature now range from 36 to 37. We hope it can be back to normal around 36. We were a bit worried cause his hand and neck had short muscle jerking, today. It also takes times for his body to recover, because the medication side effects are too strong. The doctor takes more clinical approach due to his experience of taking care of 25 previous cases similar to my Son. He decided to lighten some medication from yesterday. While he is more awake and can cry, he looks dizzy and tired. He also needs more time to recognize his parents as well. Hope he is getting better day by day.

Update posted by Arif Perdana On Sep 26, 2019

As the bill increasingly crazy, we cannot stay any longer at NUH to recover our Son. The closest hospital that can recover our Son is at KPJ Puteri Hospital in Johor Bahru. In this hospital, NUH doctors know a doctor that can take care my Son. We do our best to recover my Son here. Hopefully, in the next few days Aidan remain stable, therefore, he can be recovered in normal ward.


Update posted by Arif Perdana On Sep 23, 2019

As of today, Aidan has no seizures for almost 48 hours and no fever for more than 48 hours. This is a positive sign, however, Aidan is still under sedation. I got the second opinion from a Professor of Medicine of NUS. He said that Aidan's condition is temporal and he is sure that Aidan can be back to normal.

I discussed with doctors, when Aidan can be discharged from ICU? The doctors said that he needs to be at ICU at least for two more weeks. This was really shocking me. I debated with doctors, what is the reason? They are worrying the seizures will be coming in again. How did they come up with this prediction? I cannot really accept the argument, since all the tests that the doctors done so far has no critical issues. As of 23 September, the bill has reached SGD 62K. I cannot really stand with this condition. The costs have been a big burden for me. So far I have paid SGD 32K from my personal fund and SGD 10K from fundraising. I need to talk to doctors tomorrow morning to execute my Plan B to transfer Aidan to Indonesia to lower the costs for Aidan's recovery.


Update posted by Arif Perdana On Sep 21, 2019

Doctors have started the medication to cure Aidan's autoimmune. Doctors have given Aidan IVIG, steroid and ketogenic diet since yesterday afternoon.

Update posted by Arif Perdana On Sep 20, 2019

Aidan's doctors said two possibilities of Aidan's fever and seizures, infection and autoimmune. Infection (the causes remain undetected), autoimmune (may be at first he got infection, then his body reacted to the infection whereas the infection itself might have been dissapeared). If the doctors can make sure the infections are not in Aidan's body anymore, doctors will decide to cure the autoimmune. Otherwise, if the autoimmune is cured but infections are there, it will be dangerous.

Today, Doctors are taking another sample of spinal fluid to check for the missing viruses or bacteria. This test is to make sure no infections occur anymore. After that the doctors will give Aidan Immune globulin intravenous (IGIV). It is a sterilized solution made from human plasma. It contains the antibodies to help his body protect itself against infection from various diseases. IGIV also helps to calm down the autoimmune. After that, doctors will give Aidan steroid. When Aidan will be discharged from ICU remain uncertain.

Update posted by Arif Perdana On Sep 19, 2019

Aidan was expected by the doctors to be discharged from ICU today. The doctors removed the breathing tube to see whether or not Aidan can breath normally. This is because the medication to control the seizures makes him very relax and cannot breath normally. Aidan was stable for the last 48 hours. No seizures anymore. When the doctors removed the tube, Aidan was breathing hardly and noisily. The doctors were concerned about that. Aidan throat muscle close to the cheek was floppy and swollen. The doctors then decided to put the tube again to Aidan.

Our positivity then suddenly changed into worry again because Aidan must be at ICU until he will become stable.

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Anonymous

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wishing Aidan a speedy recovery..

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Get well soon

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Maya

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Please take care of yourself too

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