I couldn't wait to get home to post this as I feel this is the place I post my daughter's results when they make me sad and you all understand.
This morning I received a phonecall from Sick Kids telling me that I needed to bring my daughter in for blood tests today. I have to admit that I have known for awhile that the time was drawing close, but deep down inside I was afraid of what they would say.
Anyway, they told me to stick around as they would not want me to get home and then they would have to ask me to come back. I think I know what they were trying to say.
Well after my daughter had her bloodtests she wanted to stay in that department because they all know her and make a fuss of her.
When my phone rang I braced myself only to be told that her ALT which was 780 2nd July 2014, was now 55, her AST was 1205, was now 70 and her GGT which was 276, was 113 and I should go home. I wanted to shout from the rooftops. Instead I kept thanking the nurse practitioner!!!! I haven't been this happy in ages. Yes, I know for a normal person the numbers are considered high, but my daughter's numbers have always been high!!!
I AM A VERY HAPPY MUMMY.
I noticed you e mentioned sick kids is that Toronto, thats where we go but I am not always told what his numbers are and what they mean. We are still fairly new to this. Do you just ask for the numbers. Glad to hear your daughter is doing so well.
Yes, it is Sick Kids in Toronto that my daughter attends. Who do you see? What does your child have if you don't mind me asking?
How lovely, Princess D. Thanks for sharing your good news. :)
That's awesome! What treatment has your daughter been on since her earlier elevated results? We saw similar improvement after putting my daughter on Urso, plus a cycle of Vanco. Her levels stayed down after we stopped the Vanco but then started shooting up when we pulled her off the Urso.
My son see Dr Kamath for PSC and Dr Walters for UC, we are scheduled to go in on Thurs for ultra sound and regular clinic visit.
I don’t have very good internet because I am up in Tobermory and only get 1/2 hr a day and it’s pretty spotty.
HI Princess D's mommy
I am so happy for Princess D and you that she is doing so much better! Thanks for posting good news...we can always use the good news too as it gives everyone a lift too! I am going to have to check what you posted about diet and supplements again so I can start to follow that regime. Take care and hope you find a special way to celebrate!
Happy Mummy! Glad to hear... That feeling is awesome! Do you think you would be up to writing a few sentences about ASTs, ALTs and GGTs for those who may not know what they should looking for or how to read lab work. There have been almost 200 people who have looked at your post yet only a hand full have responded... I think it would be helpful and I don't think I would do an accurate job. Thanks. God bless.
I hope your daughter is one of those unexplainable patients that reverse the disease process. There are miracles, even the doctors admit that. So, why not your daughter? Positive mental attitude, joy for even the smallest things each day, is so important when dealing with PSC or any other chronic illness. Something in me told me the day I was diagnosed with PSC that I was going to beat this disease. I was near death when I got a transplant. It's 2 1/2 years later and my hepatologist said my liver is a "superstar" he wished all his patients had. He was referring to my liver function test scores, which are so good. I take a minimum dose of rejection medication and have no rejection issues.
I look forward to seeing a post from you in the future that your daughter is in remission and back to normal health.
That is SO AWESOME PrincessD. There is nothing better than hearing things have gotten better. Pray things continue to improve! :)
I know any time the labs are good compared to the last lab-it is a reason to be happy :) I hope things continue to get down to normal, that would be wonderful. So happy for your family. Did meds help with this or did she have an ERCP with a stint put in to help drain things? This is good.
What are ALT, AST, GGT. in relationship to PSC. I need any and all info I can get to present to my gastroenterologist… I feel like I am in a dark tunnel!!!
Thank you Stephen. I have learned some important info to help me with my next appointment. I’m sure as busy as my specialist is he will educate me accordingly.
Thank you for all the lovely posts. It means alot. I apologise for not being around for awhile, but with Summer and my daughter doing so well I guess I got carried away. In addition every time I signed on my laptop had issues and I would get frustrated and log off!!!
In answer to one question, no it was my daughter's diet that helped her numbers in such a drastic way. I couldn't believe how much she had improved. One doctor had suggested I increase her steriods, but I didn't and instead was really strict about her food and went the natural route.
You all are amazing people and I know how hard your journeys are. I thank you for taking time to read my posts and sharing your experiences.
Take care of yourselves and the ones you love.
Hi- does this mean that she continues to do well? I hope so!!
Dear Mom To A PSC Teen,
She was doing amazingly. We had a BRILLIANT Summer. The seizures, bleeding etc became a thing of the past, then the first week of school came and my daughter contracted the virus. That knocked her side-ways and had a dominoes effect. The bleeding came back the second week and the seizures. The third weekend she got the other virus that was going around her school. It was so disheartening. In addition to that my daughter thinks she is a duracell battery and cannot sit still, so as soon as she feels better she has to run around, sing and dance until she crashes. It is part of her trait. LOL She is doing alot better, but I am trying to rebuild her brick by brick. I had become less strict and was no longer insisting she had the smoothies etc. I could see how well she was doing and took it all for granted. I probably shouldn't have done that. The only thing that I had remained adamant about was the "gluten-free" and "dairy-free" products.
Thank you for asking.
Take as always,