Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Son w/ possiable WD

Nessaberg
0 Recommendations

Hello,
I just have some questions about WD. My 15 yrs old son has been sick for about 4 weeks. His symptoms are very tired, jaundice, pains in the stomach. We have had 3 cbc and liver panels. His belirubin (SP?) was at 4.9 and was told that was very high. After the 3rd visit to the doctor he tested him for WD. The test came back abnormal and we are being sent to a GI doctor. Since our last visit my son has been have 3 to 4 nose bleeds a day. Has even been sent home from school. he has always had these nose bleeds but never so many so often.I am not talking about small nose bleeds but his can last for 45 to 60 mins and just gush. We had his eye's checked and no K.F. rings. They did an ultrasound of his liver and I was told nothing to scary showed up but that was also the same day they referred us to a specialist. His has also been diagnosed with ADHD and ODD at the age of 7. We go to the doctor on the 16th and was wonder what questions to ask?

Explore topics in this discussion:

Heart failure Jaundice Wilson disease Fever Pain Cirrhosis Hepatitis Syprine Adderall Liver transplant

21 replies

debbay54

If possible when he is having a nose bleed check his BP a friend of ours had the same type of bleeds and his BP was off the charts high..just a thought.

pedsrn9999

My son is 21 and just received a liver transplant 6 months ago approximately 8 weeks after his WD diagnosis. Since then he has developed bone marrow issues. Have the docs done a CBC recently and checked his platelets? They also need to do a PT and PTT and INR to cleck for clotting. When the liver doesn't work the PT, PTT and INR can become severly abnormal and he won't clot like he should. Good luck with everything!
Shirley (proud mom of 5)

Scribner

What WD test came back abnormal? Did your son have the DNA for WD done? Has he completed a 24 urine copper test? The KF rings are not seen in all WD patients (my son has them, my daughter does not). I would also suggest asking for a liver biopsy - after you determine his clotting factors - my son did not have any ability to clot - they had to do a trans-juggular liver biopsy and my daughters clotting factors were fine -they did a normal biopsy through the side. If there is no clotting - they are at a high risk for internal bleeding so they do it through the neck. My son also experienced the nose bleeds, tired, stomach pains, jaundice. The jaundice reflects that the liver is not functioning properly and that alone would make me jump into action - I am sure the specialist will do that - but you may have to be a bit persistant. I say that because I myself pushed the specialists - I felt they were taking too long. The DNA test takes a while to get back. The waiting for the results is probably one of the most frustrating things I encounterd. Get as much done as you can and as quickly as you can. My son - it was too late for him. He became sick in July and found ot the end of July that he had WD - he started Syprine and by the end of August he was so sick, he was life flighted to Mayo Clinic and received a liver transplant on September 1st. My daughter tested positive for WD and is currently on Syprine and her copper is coming out at huge levels. Her liver is enlarged, and she had a biopsy done and they think that they caught her early enough and that the damage is not permanent. That is why I am emphasizing to you the importance of getting things done quickly - most WD cases are never known about until the symptoms are so bad and there is some permanent damage. You may have caught things early enough that there is no permanent damage - I hope that is the case for your son. I will pray for you and your son and hope you have some answers after the doctors appointment. No matter what pops into your head while doctoring - ASK the question - the only dumb question is the one you didn't ask! Hugs and well wishes are being sent your way.

Nessaberg

They did a blood test for WD. His ped's Doctor has referred us to a Specialist at Boys Town Research Center in Omaha. They have already talked about a liver biopsy. We are to find out more at the next doctor's appt. This is all new to me but after reading about wd it makes since. I am even beginning to wonder if he even has ADHD. He was having trouble paying attention in school and had episodes of anger. So they labeled him with ADHD and ODD. The tiniest things can set him off and he is normally a very sweet kid. I am sorry my thoughts are so scrambled but these past few weeks have been stressful. Is weight loss normal? no appetite? I have no family history to help him because I am adopted and his father has never been a part of our lives. I have spoken to him when the doctor asked me to find his father. At that point I knew we were looking at something serious because he would have never asked me to do that if it wasn't. My son also has SVT. It's has to do with the heart and the way it beats. He was having episodes of rapid heart beats 180+ per min. They found this last year and said it was because of his Adderall. When he became jaundice they thought he might be having heart failure but the heart is fine. So we are just waiting for Monday to see what the specialist says.

Nessaberg

We had a PT and PTT and IRN test done yesterday. The results came back with in normal limits but on the low side. I wish I could get some straight answers. I'm not stupid and I do have a medical back ground so I do not know why they will not explain more.

ChetAtoZ

My daughter (27) was diagnosed in December with WD, she also suffers from an eating disorder. Since Oct 2007 she has had 2 siezures. To make a long story short, my wife (in medical field) was convinced that there was something else going on besides the eating disorder. Many test were done but nobody put it all together. We found a very good liver doc and within about 30 minutes of reviewing her files he suggested WD. Did a 24 urine and liver biopsy and both were very indicative for WD. Treatment has begun but she is allergic to the meds. Now slowly trying to get her to tolerate them.

I guess what I am saing is that you need to push because WD is not exactly the first thing they think about unless you push it might be too late.

Nessaberg

Well, We had the copper serum test done on Monday the 16th and he did his 24hr copper urine over the weekend. We should have the test results back later today or tomorrow. He is still jaundice and it has been 5 weeks now. I really hate playing the waiting game. On a good note he did feel good enough to go to the movies with some friends on Friday night. Saturday and Sunday he slept a lot, tho. He said That going out was fun but just tiring. I feel so sorry for him sometimes. He is only 15 yrs old and should not have to plan his life around this. I feel he is going to miss out on so much. I guess these are just normal mom feelings right? Well I will let you know the results when I get them. Thanks for letting me Vent..

QueenofCopper

Hey there Nessaberg
I was very tired also from my WD, I went to a nutrionist, she was the one who told me about the wilson's disease association. imagion that she was not an MD and she knew about the association. To make a long story short, she picked me up from the exhaustion.
I also had severe nose bleeds as a child. i was on geritol for the iron loss. Hope this all helps.
God bless
Denise

Nessaberg

The funny thing is as a child I suffered from nose bleeds like my son and when I was 13 I had liver problems but they never found a reason why. I have had no trouble since then. Kind of makes you wonder. Still no results from the tests was told it should be friday for the 24hr copper urine.

pedsrn9999

{{{{hugs}}}}....I so totally "get" the "mom" thing. My son turned 21, had his whole life ahead of him, was in college and had a nice job, had a great social life and dated. One morning, 6 months ago, he woke up jaundiced and ended up with WD and a transplant. Since then it's been one complication after another. We've spent the majority of the last 6 months in the hospital. We are back in the hospital again and it just breaks my heart to see him so down and out. I hope they figure out what is going on with your son soon and are able to give him what he needs to feel better.
Shirley

Nessaberg

Well, We got the test result back for his 24hr urine test and copper serum test. They didn't give me any numbers but ordered a liver biopsy asap. I got the news at 3 pm and was called by the hospital by 3:45 pm with the date for the biopsy. He goes in Tuesday the 10th of March. Should I call and ask what the test numbers were? I just kind of froze when the doctor said biopsy. What will the biopsy show and what are they looking for? Does this mean he will need a transplant? I'm just trying to take it all in.

pedsrn9999

Yes! Definately ask what the numbers are and ask for hard copies of the labs. Keep them in a notebook for future reference. You may change providers somewhere down the line and they will come in handy. Biopsies are not terrible compared to some of the other tests that can be ordered. The biopsy will show how much copper is in the liver and how much damage. However....don't count on the biopsy. When Dimitri had his biopsy they did not get enough tissue to determine if he had WD. The decision was made based upon all his other labs. They did the transplant based upon his labs and it was a GOOD decision. If you need any questions answered I am not only a mom of a son with WD but I'm a nurse practitioner and I'll be happy to translate any test results or questions into "normal" language for you. Continued hugs to you and your family.
shirley

Nessaberg

I called to see what his copper urine results were and the nurse told me 69. I then asked what is normal and she said 90-100.But then turned around and said his results were normal. Normal for what? does anyone know what number is normal for WD diagnosis? And if his results are normal why the liver biopsy next week?
Just so confused...

Heron

Hi,

I have WD - was not diagnosed until age 53, when liver symptoms became such that I couldn't ignore them. Before that, I had some minor episodes and subtle things that I couldn't explain, but wrote off. I also had been tested for high liver enzymes and a liver expert ignored my low ceruloplasmin and ruled out WD, with the result that when I was diagnosed two years later, I had full blown cirrhosis. The doctor who ignored the ceruloplasmin result also documented that I did not have cirrhosis at that time.

So it's good that your son is getting tested! I suggest strongly getting copies of all the results and looking at them yourself. Nurses have told me some really strange things about test results on more than one occasion. Even less nurses understand WD than doctors. In many places, hospital labs will give you copies of your or your child's results if you simply walk in and show them ID. You don't even need to go through the doctor's office.

One more thing, if you've had liver problems yourself, you should think about getting tested too.

Good luck with everything and let us know what happens.

Ann

Based on my own

Nessaberg

Hello,
It's me again. So I went and picked up copies of my sons lab tests today. His Ceruloplasmin in the first test was 16 in the second test 14. his 24 hr copper urine was 69. His total Billirubin has been between 2.4 to 4.8. He has low Alk phos that number has been between 80 and 88. Normal is 150 to 500 mg/dL. his calcium levels are 10.6 also in the high range. I really don't know what all these numbers mean or what they show. The doctors are not being very helpful. I can get no straight answers. if it is bad I wish they would just tell me instead of keeping me in the dark. He has his liver biopsy on Tuesday. I hope they give me some answers then. I am so worried about him. He is so tired and still yellow. Last few days he has been complaining of migraine headaches and stomach pain. He is losing weight. He was running a low grade fever last night too. I do not want to be an over protective mom but i also don't want to look over something that may be important to his health. Thank you everyone for being here and answering my questions.

Heron

Hi,

What's the normal range given as for 24 hour urine copper?
What was his serum copper?

Has he been tested for other kinds of hepatitis (Hep A, B, C, etc.?)

Hang in there; I know it's very scary when you know something is wrong but you don't know yet what it is. Many of us have been there, including me. Hopefully the biopsy will get you the information you need.

Ann

Ann

Nessaberg

He has been tested for hep and mono both came back negative. The normal for 24hr Copper Urine is 90- 100. But that is what the nurse told me. I never got a number for the copper serum test but will ask tuesday at his biopsy.

RajeshKumar

Hi Nessaberg,
The normal values for 24hr urine is 20-50ug .
Rajesh.

Nessaberg

Thank you for the info. That would mean his was high right.

RajeshKumar

Yes it is a little high but not enough to make it WD even the CP(14-16) is not very low so it could be that he is only a carrier but the biopsy should be more conclusive.If have not already been to, go to the below site and you will find useful information which should help you. www.wilsonsdisease.org, hope this helps you.
Rajesh.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You