I have been posting information on my Facebook all month about AVMs since it is AVM awareness month (September is aneurysm/AVM awareness month; Oct is just AVMs). I had reached a point where I got to talking about symptoms or associated diseases/conditions and whatever else. I was posting links about HHT/Osler-Weber-Rendu and I was looking for pictures of a particular type of HHT, a discoloration known as cafe-au-lait. I was actually lucky enough to find a picture of a boy who had two marks on his face. One of these marks was the cafe-au-lait mark and the second was a small telangiectasic mark that was similar to the one I had on my chest that “exploded” the day I had my cerebral bleed (this was how I learned about HHT and AVMs). In my search for this picture, I came across pics of other types of HHT and symptoms, signs, what it may look like in some cases and all that jazz, and I saw this line of pics of tongues with little bumps on them. A few months ago I asked my older sons doctor about his tongue, why is it so bumpy? He said it looks like Strawberry tongue but then brushed it off. When I got home and went Google crazy, I saw the usual: nothing serious unless (this long list) of symptoms is also persistent, which he had no other issues so I, too brushed it off. When I saw this line of tongues, however, I flashed back then checked my sons tongue to see if it was still bumpy. It is still bumpy but he has not been sick at all.
Here’s my twist
After thinking about my kids tongue for about a day, I started to wonder what other things or signs I could have been missing. Now, I know that being a parent coupled with my own health issues will push me to be bizarrely observant to every little mark or funny head feeling my kids mention or that I spot, so I acknowledge a heightened level of paranoia but after what happened to me with my AVM and it’s rupture and the physical state the rupture has left me in, I cannot deny my instinct to worry or note a sign of “trouble.” I ignored them with myself and now look at me…
So, I go to Google with this question of whether or not HHT is somehow connected to a defect my oldest almost died from when he was only 28 days old. Pyloric stenosis is when the muscle at the bottom of the stomach connecting to the digestive tract is too tight, causing the baby’s food to build up until it overflows, forcing the baby to vomit quite violently. The food cannot pass through the body to make its exit in no other way than back up again. When he was diagnosed, it was after my crazy butt brought him to the children’s hospital too many times, fed him with a syringe for about a week and brought him to his pediatrician every other day for two weeks or so. All of this amounted to severe dehydration, collapsed veins and arteries and weight loss in my son. I was freaked because I knew something was wrong and nurses and doctors only “took care” of him because I kept pushing for them to test until they finally discovered that I was not crazy. An upper G.I series revealed that he had pyloric stenosis and ta da! mommy is not crazy! Hugs all around, just be careful of that I.V sticking out of my son’s head because he was so dehydrated the only ‘open’ vein left was in his head. A 4 hour procedure corrected this defect and he’s been fine ever since.
I thought of this, I think of it often actually, when I started thinking of his tongue and these tiny lines on his nose which his doctor swears is not HHT. So I Googled to find out if HHT is at all related to pyloric stenosis. And…so far, it’s not. BUT, what I did find out was that I am not the only one out there asking about this. I found two forums right off where this question had been asked. I’m not the only one connecting dots here, at least. I don’t have a clue what to think. I’m very worried about having passed on some horrible defect to my children. Pyloric stenosis is not hereditary but neither is an AVM (most types that they know of, anyway) but HHT is hereditary and if both are related to AVMs then it would only increase the chance of one or both of my sons being diagnosed. For me, seeing the answer “no” to these questions on forums is not clear enough. The fact that people are asking the same question I am is enough for me to wonder how “sure” science is that A.) AVMs are not hereditary and B.) pyloric stenosis is not at all connected to HHT. AVMs and pyloric stenosis are not very common (AVMs being much less common) so it makes me question even farther the validity of whatever study they may have conducted to deduce that the two conditions are not connected.
For now, I will stifle my worries but I will fill the void of wonder with information while I wait for Skas’ next check-up. Ugh…being a parent is a life filled with nothing but fear and anxiety!