Tuesday, July 17, 2007

Look Me in the Eyes

The kids are back in kindergarten, after a Monday off. MC deserve a break because she was a bit weak last Sunday, and papa's 'diagnose' is that it felt like her spleen is a bit swollen. This condition is relative to her having (HS) hereditary spherocytosis.

The condition is closely related with her hemoglobin and bilirubin levels. Thus, the blood tests.
We were watchful everytime she pee, because when it is dark red, then it is abnormal. We might have to bring her to the doctor. In order to avoid that, she must drink loads of liquid; and knowing this she toted her water bottle all over the house. I had to draw a mark everytime she takes a sip, to know how much she is drinking. That is how I religiously watch her. Oh, she had to visit the toilet frequently, but, the main thing is she is drinking.

She was also told not to run wildly around the house, because with her spleen presumed thick, we dont want her to hit it when she fall or bump on something. In our readings about her condition, there might be a chance that the spleen would burst, and we dont want that to happen. Because when it does, it would only end up in surgery.

Known to have affected only people of Northern European descendants, HS is not a well known condition. I was discussing this to one of my friends who during that time was at that time studying for her nursing board exam and she simply said 'WHAT'! She had to google it right there and then. One of my nieces here in Germany have this condition, too. When she had a severe attack while studying in France, she had to explain to them and show them her medical history. Or else they wont know where to start -- which is by making a blood test. Now that same niece moved to a small village in Germany, the small clinic where she's getting medical attention dont have an idea what HS is. She had to again, tell the doctor what to do by showing and explaining her medical records.

Now my husband is also a bit apprehensive for our planned vacation to the Philippines next year. I told him we simply need to bring all MC's medical records and try to explain as much as possible when needed. We have, after all, good hospitals in Manila, too. (He can attest to that as he underwent a successful LASEK surgery in Manila in 2006)

He is also consoling himself to the fact that we can always fly back to Germany for extreme cases. Oh, I am as always, optimistic that everything would turn out fine :-)

Now what is this business about look me in the eyes? This is for people who is curious enough to ask but doesnt bother to really know. When I explain to people who asked why MC skipped kindergarten; or like yesterday in gymnastics, why she wont join the group -- I told them about HS. They would simply not look me in the eyes and would find something else to do or someone else to talk to, to escape my soliloquy. I assume that they are afraid of their ignorance.

As for me, I would gladly shout to the whole world that I am ignoramus, too, when it comes to HS. For I might just find someone who could inform me in simple, understandable terms; why my little girl had to undergo the needle pricks every three months. I have stamped in my mind the practical needs of someone with HS. But other than that, I have yet to fully comprehended HS. All I know is that HS is not a disease, it is a hereditary condition.

I am really bothered that I cannot even explain HS much broader, in my own words. I even have to use links. That I have to call my husband to confirm something, yet he had to call me back as he had to google. Tama ba naman yon? Frustrating, really.

7 comments:

momoftwo said...

Hi there! First, thanks for your visit :)

I have to google HS becoz it sounds foreign to me also. Kakatapos lang namin lecture sa mga conditions sa dugo in Pediatrics Nursing so talagang this is something new.

If I'm in your shoes siguro I will do the same, walang katapusang research gagawin ko. Heck, anak ko nga nag ka cradle cap lang parang di na ako makatulog. I think it's just normal to us (moms alike) to do such thing.

Diary of an irish woman said...

the way I explain it to folks is that my red blood cells are shaped like american footballs or rugby balls instead of nice donut shape. (donuts being popular in America lol). So normal red blood cells live about 160 days. Folks with HS theirs live about 60-120. Now the spleen has a lovely Wave shaped vein/artery going through it and it helps screen all your abnormal cells and take out dead ones and abnormal ones such as dead platelets etc. Now when it comes accross the spherical shaped red blood cell of a person with HS it gobbles it up and of course since so many of red blood cells are shaped wrong it keeps taking them and spleen gets enlarged. Also what happens is because your blood is getting killed off early u risk become anemic. And with all the excess red blood cells dying you also have higher bilirubin levels so can look jaundiced as the liver works overtime to get rid of the excess dead matter kicked out by the spleen. Treatment nowdays is folic acid for kids and they try and avoid taking out spleen if they can. However in a lot of cases they do take out spleen but try and wait till kid is at least 5/6 yrs old as rest of body can then take over function of spleen which is quite important in beating off flus and pneumonias. Its very undiagnosed in Europe even though they think 1 in 5000 people have it. Runs in families and you have 50% chance of getting it from a parent as its autosominal dominant. Its annoying but treatable and even if spleen gets taken out it can be managed with flu shots etc yearly. Hardest thing for me as a kid was trying to understand why I couldnt go to play at hospital and I had to stay in bed. I became an avid reader because I spent so much time reading comic books. Know you're not alone and theres a lot of information out there. Any decent haemtologist knows about it but dont be surprised if you have to educate general doctors as I do all the time.

julie said...

This must be very hard for you and your family Raq. I hope and pray everything would be fine. And if you are coming to the Philippines, where would I find you? :D

ScroochChronicles said...

Hi Racquel!! I can understand how frustrating it can be. And as parents we really have no choice but to find the best ways for our kids to live and enjoy themselves. It's sad that ignorance can sometimes put a damper on our happiness. Not our own ignorance, mind you, but those around us. As for our roles, I think it's a never-ending search for whatever is best for our children :)

raqgold said...

momoftwo - when you discover some info abt HS, you might just want to share them with me! this is really not a well known condition e. thanks!

hi julie -- when we fly to manila, i would find all of you, hahaha!!

schrooch -- i agree with you there. we always want the best for our kids, and why not, they deserve it!

Maryilee said...

Hi, I know quite a bit about HS as I have it as do all three of my children. It really hasn't been all that big of a deal around here. I was sick as a kid, but they treated it as iron deficiency and didn't properly diagnose me until I was 10, at which point, I had a splenectomy.

My first child always looked pale and I asked his doctor about the possibility of him having it too, but the doctor just laughed at me! Well, he was completely wrong as my son became pretty ill when he was three, and then had a splenectomy at age 5. Prior to that we were told no contact sports for him, but he was so young, we hadn't even thought about that.

He is now 21 and in the U.S. Air Force, so it didn't hinder him in any way.

My next son, who was the picture of health, shocked me by also being diagnosed at the same time as his brother since they tested all of us. He played American football and baseball without any problems and all with the okay of his hematologist. His case is rather mild, but he did get really sick when he was ten. He is 19 now and fine. He played football all the way until he was 14. (quit for unrelated reasons).

My daughter is almost seven and other than a couple of mild cases of anemia, has been healthy. She runs, plays, etc and I don't give much thought to it.

raqgold said...

hi maryilee -- thanks for visiting my site, and for the information. HS is not really a known condition that's why it could be misdiagnosed. the problem with HS is that there are at least 2 or 3 diseases that could really trigger the spleen's breakdown -- my niece who has HS almost needed a blood transfusion when she was down with a flu and cold; good thing her blood tests stabilized before it could come to that; but she was really, really weak!