Does your child have an hemangioma or a vascular malformation? If so, I hope that our story is of some help. First off, I have no formal medical training or background, well not with people anyway.
The majority of my knowledge stems from my continuous search for information in regards to my son's particular problem.
It would take many pages to explain his entire medical history. If anyone has specific questions or remarks, please feel free to write to me at the email address given, or contact me through ICQ #52327384
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YESTERDAY
Doug has always been a quiet child. Content with a few toys, he can play by himself for hours without getting bored.
Never fussy and never complaining, he was and continues to be, the perfect child.
At about the age of 18 months, I started to notice a change in my son's diet. I didn't think much of it at the time, all babies change their habits and patterns.
He was taking a long time to eat coarser foods such as meat. Some of his favorite foods were becoming less and less enjoyable.
He was three and a half when we became aware that something wasn't right. One night, he awoke screaming in pain saying that his tongue hurt.
When I asked him to stick out his tongue, I was horrified.
It was covered in a large purplish/blackish mass and oozing blood. We rushed him to the emergency clinic where we were told that he had bitten it in his sleep and to buy him a Popsicle.
Over the course of the next year we went to numerous doctors and specialists. We were told that he was suffering epileptic seizures in his sleep;
he was biting it in his sleep; it was a bruise; and a few other diagnoses that I can not recall.
Around the age of 5, I started hearing the words birthmark and hemangioma.
Almost the entire left side of his tongue is affected. Sometimes purple, sometimes red. Almost always painful and occasionally bleeds.
I had previous knowledge of port wine stains and strawberry marks but that was about the extent of my knowledge.
I look back and realize how little I knew at the time. Today, I could probably write a medical journal.
Early summer of 1992, after seeing a specialist and getting the same dianosis three times, it was decided that he had an hemangioma.
Just before he was due to start school, he needed to be booked for emergency surgery as his tongue was not responding to any of the treatments.
He was to have the hemangioma surgically excised.
We showed up at the hospital nervous and worried. The procedure had been fully explained, but still, we were not prepared for the outcome.
He has always been small for his age, and seeing him in a large gown laying on a huge bed, made my heart ache.
The surgery entailed cutting out the "hemangioma", turning the tongue over and stitching it back together to reform a "normal" shape.
In essence, the bottom would now be the top and the top was on the bottom.
He came out of surgery about 90 minutes later. The biggest intern I had ever seen had my baby in his arms, he looked so tiny.
His tongue was so swollen that it protruded almost to his chin. His eyes were black from having his mouth clamped open, and he was a horrible mixture of facial bruises and
normal skin. I may be making this sound atrocious, but it is what I remember.
He came home two days later to a diet of soup and ice cream. It took almost six weeks before he could eat regularly again. The best thing was that we were told that the "hemangioma" would not come back.
TODAY
For the most part, Doug has received excellent treatment for his specific medical needs.
As with any uncommon or rare medical situation, it is difficult to diagnose as well as treat.
On March 4, 2000, Doug will be 13. He has undergone surgical excision, CO2 laser treatments, anti-inflammatory steroids,
MRIs, pain medications, vitamins and diet changes.
Today, he is diagnosed with having a vascular malformation. As we expected, it will never go away and he will more then likely continue to need touch-up surgery for many years to come.
We have a number of options at this time. Doug is scheduled to have another surgical excision and sclerotherapy on March 20, 2000. This site will be updated shortly after that to review this new part of our journey.
There could be pulse-dye laser treatments in Doug's future. The local children's hospital may be acquiring one within the year.
Throughout the years, Doug has continued to shine no matter what the world throws his way. He takes each day in stride and nothing seems to dishearten him.
He has gone from a small child with dreams of being a "pillow maker" to a young man who aspires to see the moon from "the other side".
He will most likely always be a bit smaller then his peers, but his outlook and his joy in life will keep him shining forever.
He will always be the light of my life.
Doug just recently had another major surgery (Mar 22, 2000). Visit the "history" section of these pages for a complete summary of the procedure and his recuperation.
At this time, June 1/01, we are yet again waiting for another surgery date.
This time for YAG laser, more debulking, scar tissue removal, more cauterization and I may insist on having his tonsils removed.
This site was updated June 29/01
Surgery is booked for October 12/01....watch for an update soon.
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