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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Alt, ast, ggt and esr


#1

Hi,

First let me thank you for reading my post. I have written before. I have a beautiful little seven year old daughter who was diagnosed with Primary Sclerosing Cholangitis, Ulcerative Colitis and Kidney Disease.

We have faced a number of challenges, but she always "appears the picture of health", conflicting of course with her lab results.

On 16/01/2014 her results were:

ALT: 184

AST: 129

GGT: 163

ESR: 39

On 28/01/2014

ALT: 465

AST:649

GGT: 319

ESR: 67

I have been told her ALT, AST and GGT should be in the 40s. We have had a rough few months. (Yet again). I was really upset when I got these results, but I decided to push it aside and continue to throw the surprise party I had planned for her. Now that it is over, I am writing here because I know some of you would understand what I am going through. Like I said before my daughter dances around smiling as she goes and doesn't not realise what she is facing and fighting. I try to be diligent. I have changed her diet and read as much as I can, but sometimes when I believe I am doing all I can to keep her healthy, her numbers do funny things and I get disheartened. Then I have to put a smile on my face and start the climb again. The people around me don't understand how worried and stressed I get. They see a "healthy child" and probably think I am delusional.

What do you do when you keep getting negative news? In December my daughter had a iron infusion because they said her haemoglobin was low. Then on 24th December she had to go back because it was still too low. In January they told me her Haemoglobin had gone up, but her Ferratin was too low. She had three more infusions. Then when they did her last one on the 28th January 2014, they said her Ferratin was now 21 and a child's should be in the late 30s to 40s. That was the day I noticed that her numbers had increased substantially. They called the G.I. on call and he said as she was not displaying a fever or pain to send her home and as soon as she had any of those symptoms I was to bring her back. I was really upset at first, but at the moment I am trying to take a different stance. Which is not always easy.

I look forward to you response.

PrincessD's Mum


#2

Dear Big Steel,

I am sorry to hear about your situation and your wife's health. Things must be extremely difficult for the two of you. I can only imagine what you must be dealing with.

No, I am not familiar with the "Spoon Theory", but I will look up the site as soon as I get off here.

We are somewhat lucky. My daughter has been under the care of Sick Kids since the 16th April 2010. She had exploratory surgery on 8th May 2010 and she was admitted for further testing. That whole month we spent in and out of hospital. She was finally diagnosed with PSC, UC and later on Kidney Disease. She has had many trips to Sick Kids since then. The main issue is she doesn't complain and only her blood tests allude to what she is going through. I am constantly reminded by her doctors that "She will never get better!", but I have to believe that they will find something one day.

Thank you for your kind words. It is not always easy and coming on here and reading sometimes helps.

Take care for now Stephen.

Kind regards,

Mel x


#3

Dear Stephen,

You are very kind. I promise to do the same.

Take care for now.

Mel x


#4

Good morning Stephen,

How are you on this wonderful Sunday morning? How is your wife? Things are alright I suppose. I don't know if I had told you, but my daughter came down with what seemed like the flu. I nursed her back to health and then by the Friday I started feeling under the weather. I tried to ignore it, but it turned into the full blow flu and I am only now recovering. I only have the cough etc left, but it is really taxing. Apart from that we are both fine. She has lost some weight and as of Friday night I noticed that she is having an Ulcerative Colitis flare up. I am trying to monitor it. She isn't complaining, but I can tell from her stools.

It is lovely hearing from you as always.

Mel x


#5

Dear Stephen,

You are a bit like me. Once the sun is "out", I am instantly smiling.

Thank you for your kind words as always. No, we don't get the "flu" shot. Every time I took it I would get serious reactions and then because of my daughter's compromised situation being on the immune suppressant, I have opted out.

I am hoping not to. I usually watch her and try natural remedies. If they don't work, then I guess we will have to. Initially when she had "flare-ups", I would panic and rush her to Sick Kids, but they told me to watch her over a few days and get back to them. I then learnt that I could do things that could help her recover faster. So I try.

I am glad to hear that your wife is fighting.

Take care for now.

Kind regards,

PrincessD's Mum