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Tuesday, November 25, 2014

Gullain-Barre Syndrome and your role as parents

And the blogging backlog continues! :P

I was all set on writing an entry about all things mushy about our recent ordeal six months ago but I realized that it aint gonna help anybody but myself. Writing about mushy things would help me vent out the emotional pain I experienced while Reese was in a hospital. Meanwhile, writing about our experience on the actual disease could and might help others, so here I am, telling you about it.

I wouldn't go all technical about the disease because you can read that elsewhere from people who are more qualified to tell you about it but here are our personal notes about things that we(hubby and I) think might have played a part or symptoms regarding his disease.

1. Medical staff just refuse to give babies vaccines when they are sick but they fail to highlight that vaccines can actual make them prone to be sick.

GBS usually stems from cough and in Reese's case, we believe he had a cough because he had immunization two days before we went swimming, and the combination of the two contributed to him being sick. Sure, you can say that the fault remains with us in allowing him to swim (which we believe caused his cough) but still, I think the vaccine made his immune system weaker. So the questions linger in my mind: What if we waited in giving him the vaccine? What if we didnt let him swim too long? For now these are all what ifs, but to those of you who are only about to have their children's immunization, it can spell a world of difference.

2. Doctors are brilliant people but they are people nonetheless, so they can make mistakes and their mistakes can be graver given the nature of their work.

Reese's pedia diagnosed him to be dehydrated and we couldn't blame him- his lips were dry and chapped, he didnt have energy, his face was drooping. He recommended for Reese to do oral rehydration without requesting for a test confirming his electrolyte level. We followed his recommendation for three days and when Reese didnt improve, we were advised to go to a different hospital. Nonetheless, always be vigilant about the doctor's course of action and dont hesitate to ask if you feel like something is not right.

3. Do not second guess your instinct as a parent. Do what you feel is best for your child.
From the time that Reese's symptoms started to get worse, Arnold and I couldnt decide on what to do-whether to bring him to the doctor immediately, to wait out a few days, to self medicate and so on. After that, we promised to each other that we would never second guess again and bring him to the hospital once symptoms to any sort of disease become evident. Their symptoms worsen very quickly but in the same they also recover very fast so the best way is to diagnose diseases early so they can be addressed as soon as possible.

Like I have said time and again, Reese having had GBS was the hardest ordeal we had to go through and we wish that in as much as we can(given our limited resources), we can share our experience to ensure that fewer and fewer people will deal with this disease. We are happy to say that Reese has surpassed the doctor's projections that he will be able to walk again within 6 months-1 year after his hospitalization, because he was able to do it in four months. 

He lost a lot of weight then but he is literally back on his feet and bubblier than ever :)

I hope these bits of info help you. Please do not hesitate to contact me if you have concerns/questions.. God Bless us all!

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