03 November 2009

The eyes have it... seeing into the future

I have blogged in the past about the fact that my beautiful (very healthy and strong) 10 year old son developed Uveitis in June 2008, and it's been a on-going situation.   His eyes are clear (have been for a few months now) because he gets a weekly injection of Methotrexate which is keeping his body calm (suppressing his immune system) so that all stays well.  We will not know the TRUE situation until at least June of 2010 when his rheumatologist will access if it is ok to take him off this medication.

I am blogging about this again today as we prepare for next week's visit with the rheumatologist.   Last week he saw his Ophthalmologist and all was good, however I will always take it upon myself to re-research Uveitis which is a RARE, serious medical vision condition that only afflicts a couple thousand children per year in the United States.  You can go from one school to another and NOT find ONE child with the condition, that is how rare it is.   Given it's rarity, you have to be certain that your child is being tended to by doctors who are familiar with the condition and know how to treat it.  Uveitis accounts for 10% of the cases of BLINDNESS in this country.  That is a signficant number and not to be ignored.  It needs to be treated CORRECTLY.

One of the contributing factors to blindness is neglect.   Often times people hear about it and don't take it seriously.  The treatment routine is one that must be addressed aggressively and diligently in order for it to be successful.  It's a frustrating routine, but one that must be adhered to.

I make it my duty to keep up with all the news and I belong to a few support groups (and I keep in touch with the Uveitis Foundation) to see if there are any new discoveries towards helping to treat the condition.  This is what EVERYONE should do when they are afflicted with ANY illness (even little ones like the flu, diabetes, etc.   Never take anything for granted.

As I blog about this, I know NO ONE out there who reads this blog will even feel connected to this illness because of it's rarity.  My goal is not to find a connection to the illness, but to ENCOURAGE any and everyone who has a child with an illness to make it your priority to research the condition and find out all that you can do.  Doctors can do but so much, but you can lend some aid to your child in the process too.  I don't want any surprises in the future (since it is a mysterious condition that can go on for a lifetime) and I want to BELIEVE that I took all the steps to learn as much as I can about the condition. 

It can get very expensive between doctor visits, medications, and foods/supplements, but diet is KEY in many cases, especially with Uveitis which is an inflammation issue.  What occurs is a build up of cells in my son's eyes (because the immune system thinks something is wrong -- why?? - we are still trying to learn why??? )  and so we need to TRY to keep the inflammation from happening, which the aggressive steriod eye drops addresses, but the METHOTREXATE ultimately addresses with the immune system.  As you can see -- it's MASK, a BANDAID and not a CURE.   NOT a CURE.


Foods, supplements and stress relieving exercises.   Helping your child to ease their STRESS is very important.   Children suffer with stress just like adults do, and there have been many cases where STRESS triggered a condition.

We continue to monitor him and check for Juvenile Rheumatoid Arthritis, which is very typical for kids with Uveitis.  I BELIEVE that my efforts to help my son stay well do HELP immensely.   I also make sure that he gets exercise.  Consider if I did not monitor his diet and he did not exercise --- we could possibly have MORE issues to deal with (bad nutrition, weight gain.... stress). 

Good health is not just about saying, "I am totally healthy and there is nothing wrong with me,"  it's also about MANAGING a pre-existing condition to the BEST of your ability.   I will never ever forget the fact that the rheumatologist told us that many times in cases of Children with Uveitis, the parents have been negligent in caring for their child.   I suppose it may seem easy to overlook it and think all is ok because your child "LOOKS" ok, but what about what is going on inside those eyes??????   Seeing is TRULY believing!!!!!  I know I owe it to my son to stay on top of the care of his VISION so that he can SEE into his FUTURE

Be proactive no matter what is going on!

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