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Wednesday, April 20, 2016

My son after GBS

I am writing this post more for parents whose children have/had Guillain-Barré syndrome, or GBS for short. Since this disease is rare and information is scarce, I know how hard it is to find first hand information out there. I also know that there are some who post in forums and search engine sites but if you're like me who doesn't fancy reading exchanges through forums, then this post is for you.

To give you an overview, here are my boys details:

>He had his MMR booster/vaccination on June 13, 2014. He was 1.1 years old at that time
(After that, I cannot remember exact dates but here's what happened)
>He developed cough and flu like symptoms on June 16 after we went swimming in the river
>We did self-medication of anti-biotics on June 22 due to on-off fever of 38-39 degrees
>His fever stopped but his physical condition got worse after that and by June 26, he was much much weaker and couldnt stand up
>The first pedia misdiagnosed it as dehydration and we started on fluids on June 26 but since he wasnt getting better, we brought him to another doctor on June 30
>He was confined on June 30 and diagnosed with GBS on July 1
>We started with IV IG on the night of July 2 and stopped on July 6
>He was discharged on July 8 and did Physical Rehabilitation until September 2014(3 months)
>He was able to walk again in October 2014
video
The first day he was able to walk again ^_^

Here are info that I still remember from our hospitalization

> My son vomitted on the last night of the IV IG procedure. Doctors said it is not a normal response to the IG so they deemed it safe to continue the intake. He also vomitted the day after that and though the doctors think it might be caused by overfeeding, I think it was due to high blood pressure because at that time, my son's bp was ranging from 110-120/80, pretty high numbers for a toddler. IV IG causes high blood pressure since its basically concentrated form of blood/anti-bodies.

> Doctors told us that he will be able to walk approximately 6 months to a year after he was discharged though he was able to do it in 3 months. They say that GBS progresses more quickly in younger patients but the good side is, since their bodies have not been exposed to "damage" from unhealthy food, alcohol, etc., they also recover more quickly, which was the case for him since he had it so young. We take this as a big blessing from God because I have watched videos of GBS patients in hospitals who were bedridden for MONTHS.

Life Two Years after GBS

Now, our son is up and about and people who never knew his illness wouldnt know that he had to face such a condition. However, we believe that his body has not "fully recovered" from the trauma of the disease because

1. In those 3 months that he was unable to walk, we view it as a recuperating process, meaning that when he was able to walk in October, he was back to his old self in June. Thus, we technically lost about 6 months in development since he was not able to move forward for 4 months and because he was still recuperating as time went by, his over all development only continued a few months after he was able to walk again. Thus, when I look at my boy who is 2 years and 11 months old, I believe his over-all development is closer to that of a 2 year and 6 month old boy, given that he was able to catch up a bit from the delay. His peers are much taller than him and are able to talk more. However, I believe the situation also enabled him to develop his socio-emotional skills better- because he understands sharing, time outs, saying sorry and remorse, as well as pretend play(which I normally saw in 3 and 4 year olds when I was a teacher).

2. It is hard to look for scientific evidence for it but I think trauma caused him to be delayed in speech and other areas of development. I am constantly looking for mothers' accounts that say that after a traumatic experience, their child seemed unwilling to try to talk. GBS was traumatic for our son in 2 accounts- he understands the medical staff's work and fears all of them from doctors to nurses to medical technician and he remembers the experience of being unable to walk during and after the sickness. At present, our son would only talk a few words- family members, a few animals, food he likes and for the rest, rely on gestures to express himself.
video
Such a water baby! A video at the beach of informal speech practice

3. Be wary of some doctors, because not all are genuinely interested to help you. 

Given the rarity of the disease, curiosity and technicality gets the better of some doctors, and to date we experienced 4 doctors. 1) During our hospitalization, we encountered a doctor who rated my son's physical movement as 0(I believe on a scale of 1/5) and it was really really upsetting, seeing my son exert effort to move his legs. 2) A different one, a resident(who I believe has not encountered a pediatric GBS case before) asked me over and over again information about his history, information she would been able to see on the chart.

Afterwards, it was extra hard to find pediatricians that we trust and believe can cure our son's sickness unrelated to GBS. 3) One profusely argued with me about the connection of vaccines and the syndrome. 4) Another treated my son like a fragile glass and concluded that he is ultra-sensitive and thus prohibited from getting sunlight, eating chocolates and doing anything else that might be dangerous or cause allergies. She even advised us to lessen salt in our dishes, which as far-fetched as it may sound, seem to come from her desire for me to lose weight given that I'm overweight and had nothing to do with my son. It took a while of trials and errors before we were able to find the perfect fit, a doctor that we trusted to truly be able to cure him for other diseases and illnesses. 

I'll end this note by saying that experiencing GBS was one of the hardest yet meaningful experiences my husband and I had as parents. It's one of those things that you wish came with a manual but at the same time brought out the best in us, and show us that other than what we have previously done, we are capable of more love as parents. 

If there are other things you wish to discuss or simply want to talk to somebody about the experience, feel free to drop me a line!

Cheers!

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