Health worries: K1 and K2, 230418

This is what has been going on with K1 and K2, we were rather upset over the past few days, but now we are sort of accepting things and hoping for the best.

As of now, we have ordered the glasses for both the children, and the doc says the improvement in general vision will be perceptible, and that we should keep monitoring the condition every 6 months.

This upset us very much initially, but in a way, there is a relief in knowing that at least for the immediate future, there is nothing to be done.

Message from to our immediate family:

Yesterday (23 Apr 18) during testing for near sightedness and to get glasses, the eye doctors told us that K1 had a congenital condition called Retinitis Pigmentosa and K2 looked like he may have it too. At its worst, this condition causes loss of vision over time that could be complete, or just allow for tunnel vision (blackness surrounding a small area visible due to central retina functioning) by Age 35-40. This was devastating to hear yesterday and overwhelming to digest. The doctor had started telling us to “inform the children that sight is not the only thing in life” and that was very hard to take.

However, today, after taking a second opinion from Dr Savita Arun of Nethradhama, we have some hope that at its best, it could remain asymptomatic without much deterioration or loss or progress a lot slower.

Today, with second opinion, the diagnosis is confirmed for both children. The second doctor said pretty much all the same things that the doctors yesterday did, except with far more positivity. In her 18 years of experience she has seen cases that are totally asymptomatic. She has seen an 80 year old patient who was completely unaware that she even had the condition and perfectly ok vision. She has seen children who came at the same age that ours did, are older now with no reported loss so far.

K1 does already have symptoms in that she has poor night vision – we started to notice this even at Age 2. But the doc today said that her central retina looks healthy and that her vision is good. She said that in unfamiliar environments, she will not be able to navigate in dim light. Yesterday’s doc suggested that she always carry a flashlight with her.

Today’s doctor also confirmed that genetic testing may help understand the prognosis (progress timeline) because there are a great many genetic causes for the condition. She also suggested that while there was no indication of need, for our peace of mind we could get an ENT test done as well.

K2’s condition is much more mild, and therefore, less clearly diagnosed, but changes on the retina still evident. Since it is so clear for K1, there is little doubt as to what it may be for him. She did not suggest that K2’s retina is at an “earlier stage” of the same thing or anything like that – basically his retina could become more affected with time or may not change at all. He has had no vision related complaints.

The doc didn’t recommend ERG (Electro Retinogram) for now because it is an uncomfortable procedure (electrodes inside the eyelid among other things) and if the kids don’t cooperate the results will not be accurate. She also didn’t recommend field testing (sitting in a ball and pressing buttons when they see lights flash around them to determine how much loss there may be) because both appear to have no loss in field vision at the moment. So we shall seek out genetic testing for the whole fam to see how much detail we can obtain regarding what genes are causing this and what science may already be or become available us.

The next step is to get them glasses for their nearsightedness (both have astigmatism and power) and come back for evaluation in 6 months. She stressed a balanced diet for them both, but specified that there was no known way to arrest the deterioration or affect the progress of the condition.That being said, we shall read and will likely ensure our diet contains things like Vitamin A palmitate etc. which have some reported success in arresting the deterioration. Also, we have well known Ayurveda centers specifically for the eyes, so we shall go in for a consultation.

If you know ophthalmologists first hand, or have direct experience with this condition, we welcome your inputs.

Two thoughts that are helping us at the moment:
1) Random crap can happen any time but the more notice we have, the better we can respond.
2) We are more than our bodies.

Please hold positive thoughts for both our kids to retain their vision; to remain as asymptomatic as possible, with either no deterioration over their lives or the least & slowest possible.


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