Today was Shelby's first liver clinic since her biopsy. First of all, let me say that she is doing quite well. Last week she went to Camp Winnebago (YMCA day-camp just north of Rockford) and had a fantastic time. I will post pictures when I can. I want to try to get all the info in from today's clinic before my laptop battery dies. My laptop charger does not work so I have to charge up my laptop at Mom's until the new one arrives in the mail. I have 56 minutes left and a whole's days worth of internet surfing (I mean work) to catch up on.
Back to today's clinic. We had some concern about the area of her abdomen where her liver is sticking out lately. Her abdomen has always been large, but this was a new area to be protruding so much. There was no real explanation for it, but some ideas. We found out today that Shelby has gained over 6 pounds since clinic in March! That's a bit much to be explained by a growth spurt. The idea right now is that she has some ascites. The doctor said 1-2 pounds of fluid could be ascites that they could not detect by examining her. It does not explain the rest of the weight gain so we are just to watch that. For the ascites, Shelby is to reduce her sodium intake (so there's less fluid retention). Argh! She seems to crave salty foods and while we try to keep them to a minimum, she does have more than she should (especially when its easy to find a bag of potato chips to make her happy when she can't have what everyone else is having because it has dairy in it). She was NOT happy to hear that news. (Moreena, I need your best tips on finding yummy low-sodium food please!) Also, Dr. Alonso felt that Shelby's clubbing on her fingers and toes was more evident today. That, along with even more spider veins on her face and such low platelets warrants an "scope" to be done. Its been almost 2 years since her last one. Seems her portal hypertension is getting much worse. Dr. Alonso said Shelby is not a candidate for a shunt because her disease is progressing and she probably won't go even 5 years without needing a transplant. Finally, in addition to all that, all of Shelby's current symptoms are because of her portal hypertension. That leads to concern that she is checked by the cardiologist for hepatopulmonary syndrome. She was just seen a year ago by her, but Dr. Alonso wants Shelby now rather than in another year, like was previously planned. Another bubble echo and some pulmonary tests are in Shelby's near future. It will be a busy summer. Not what we had in mind. Shelby will also be having a sleep study probably within the next month to see if she has sleep apnea. If she does, then her tonsils and adenoids will need to come out.
Sorry if this is choppy, but I'm pooped and am going to try to go back and add links to all the medical mumbo-jumbo I threw out there.
6 comments:
Sorry to hear all the news from clinic. Danny's labs came back and his vitamins are low. He's on ADEK and extra D. Now I can sympathize with how hard it was to teach Shelby to take pills. Applesauce did the trick for us. They will test his labs in a month again and he is having a scope in August. I guess he's due, he hasn't had one since 2004.
Mary O.
Mary,
It was Riley that is (still) hard to teach to take pills. Shelby was so young, she didn't worry about it or anything and just took them. Now she can take HUGE pills with no problem. Glad the applesauce worked for Danny!
They ran vitamin levels on Shelby yesterday. I wonder how those will come back?
Wow, 5 years without a scope - good for Danny! Maybe we'll be scheduled on the same day.
Thanks for keeping up on Shelby!
Jenn--Ugh. Low sodium, plus no dairy? Suckage! I'm going to have to wrack my brain a bit to remember our tricks, but I do remember that some chips are sooooo much lower in sodium than others. Other things that you wouldn't think of as "salty" are actually quite high. Soft flour tortillas? Insanely high sodium. Teddy grahams? Also high, even though no salt craving is satisfied by them.
Some just regular, old potato chips are actually OK on the sodium as long as you watch the amount. A lot of "reduced-fat" foods have replaced the fat with a bunch of salt for flavor, so those aren't helpful.
Overall, lots of no-no's and not a lot of treats. Suckage.
Do you remember how Shelby and Annika ate popcorn together at the pool, sucking out every last bit of salt and eating with the same single-minded concentration? Yup. No coincidence, I think.
Also--we brought our own popcorn into movie theaters. Just called them up and explained that Anni was on a low-sodium diet and couldn't have regular popcorn.
I used a stove-top popper with veg oil and kernels, then put on just a smidge of salt afterwards. Actually, Annika really liked some of the popcorn seasonings you can buy in the store, and I could measure those out and use much less because they were so much finer and really stuck to the kernels better.
We made popcorn on the stove pretty much every day. Not much of a hint, but it helped Annika.
Oh Moreena, this is suckage. Not what we expected to hear yesterday. How can we not see a 6+ lb. weight gain? I even marched her back to the scale in clinic to make sure the nurse wasn't wrong.
Yes, Shelby is not happy about the eating situation. Also, how do you make a "meal" for someone who can only eat a few bites, then is full...for 30 minutes...then hungry again?
I don't even know what "normal" sodium intake is for a kid her age. I didn't think to ask until we were on our way home. Isn't that the way it goes. Guess I should e-mail them and ask.
Jenn,
We used No Salt (potassium chloride rather than sodium chloride) for many things when Dan was in his salt free years. Used it on popcorn and for unsalted pretzels - and in cooking. I will check to see if I still have any of those recipes. I also had a food dehydrator and used it to make fruit rollups - appplesauce, rhubarb, etc for fruits. The kids loved them. I would vary the applesauce flavor by adding cinnamon to one batch, something else to another and just plain ones. Made jerky on it too with spices other than salt.
What sucks was making spaghetti for his birthday and making only one batch (salt free) and everyone else's faces and grumpiness when they tasted it! Salt free crackers require special things to put on top to make them tasty. :-)
Maggie
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