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mamaof2
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I am looking to connect with other parents with a child with WD. I have a 9 year old boy that has been diagnosed with PDD and WD.

Explore topics in this discussion:

Autism Liver transplant

28 replies

mgraper1

I have 2 sons with WD. They are now older but were 12 & 17 when diagnosed. I would be happy to connect with you.

Mary

Amy4

I have a 17 year old with WD. He was diagnosed in August 2007. We just got back from the University Of Michigan for treatment. I would be happy to talk to you

mamaof2

At what age were your sons diagnosed?

mgraper1

They were 12 & 17. The older one has always dealt with WD very well but the younger one (now 21) is an ongoing challenge. What challenges are you facing with yours?

Mary

mamaof2

Well, we just started (about 2 months ago) treatment, but I am having a hard time just because he is already neurologically sensitive due to his Autism spectrum disorder. I am having a hard time putting into perspective what life is going to be like because no one I know ( I work in health care) knows of anyone with WD. At least with his Autism, there is some type of community to bring families to together to support each other through the process.

mgraper1

I think you should e-mail me directly and if you wish we can exchange phone numbers. I am also the president of the WDA and I think I can help you further this way.

Mary
mltgraper@aol.com

Rose5

Hi Mary - and everyone else...

seems your all on the other side of the world to me....:(
I am in Australia and I hope the help they have here is just as good...
I have just been diagnosed with my 15yr old daughter who has started on Penecillamine...she has the liver biopsy next week so we will know more then about how far it has progressed tho her neurological report came back ok...

Would it be ok if i emailed you as well please ?? as i have so many questions ....

thanks Rose x

mgraper1

Rose
Yes, absolutely please e-mail me directly!

Mary

vcross

Mary,

I have a 15 year old with WD. She is having neurological symptoms but they are telling me it is not Wilson's related. How in the world do I know for sure?

Victoria

mgraper1

Victoria
If your daughter has a confirmed diagnosis of WD, then I think it should be considered. Can you give me a few more details please. If you prefer you can write me directly. I really need a lot more info to help you sort this out. Please write.

Mary

mom2six

Hi! I have an 8 year old son who was diagnosed with Wilson's at age 2 1/2 yr. My oldest daughter had Wilson's, un beknown to us, at age 14. She had an emergency liver transplant. One had to be found within 12-24 hours or she would have died. All her organs failed, she was in a coma at that time. Long story there. Thank God she hung a little longer. One was found at the 36th hour. Such a scary, scary time!!
Anyone else out there have a simular situation of not knowing they, or someone they know, has/had Wilson's??

collegemom

I am knew to this site becasue I just found out that our 5 year old has WD. She was one and a half when we knew something was wrong but doctors wouldn't listen to me and said it was becasue she didn't eat enough. (OK, I won't get started!) Anyway I kept pushing and sure enough she has WD. She had a liver biopsy last week and we don't have any results yet. Her liver enzymes are close to the 100 range and her ceruloplasim is 9.5.

What is so funny is that the rest of us were tested and her big sis, 11 has it. Well atleast they think from her liver enzymes being so elevated and her cer. being 9. THey are waiting for the genetics tests to come back before doing a liver biopsy. You could say that her little sister saved her life, becasue we probably wouldn't have known she had it before it was to late.

Now they think my husband could have it. His cero. was 19 (not real low, but raised concern). He is having genetic testing too.

What a crazy last few months. I can't imagine if we had caught my oldest daughters too late. I am so happy that I followed my instinct and pushed the doctors.

Hope to hear from others soon. I have meet one other person that had heard of this disease and her father-in-law died from it because they caught it to late.

Thanks
Collegemom

mamaof2

I knew that something wasn't right with my son. Always trust mommy intution! He is on the Autism Spectrum and everyone thought that he was just getting worse. I work in health care and my pedi was on maternity leave and I turned to a co-worker who pointed me in the right direction and called in a few favors for us. Within a month we had genetics and the liver biopsy done. My 7 year old is a carrier, he's dodged the WD and Autism, he is very lucky and he knows it.

My son is just starting to complain about the meds. He takes 13 pills a day and he has been asking how long he will have to do this for. Not like I blame the kid.

doonie

Hi,
I have a 2 and half year old that we are testing to rule out Wilson's. She has some neurological symtoms, and her blood copper was a little high. The liver ultrasound came back fine, as did the brain MRI.
Do you have any advice about conducting a urine test on a kid who is not yet toilet trained? Looks like most people go through this at an older age.

So far it's been challenging with the bags. Maybe I should just toilet train her.

Thanks,
Doonie

mamaof2

My son had a liver ultrasound that came back normal and indeed had WD. With a child that young, I'm surprised that they aren't going straight to genetic testing. I agree that it is really hard to collect urine with a child not yet potty trained. I haven't got any suggestions other than the bags and/or foley catherization for uring collection.

doonie

Thanks - I've not heard of the catherization, but sounds like something to do only when there's no alternative:). Something new to know.
We are going tomorrow to a genetisist in metabolic disease, so maybe she will be able to provide some answers.
I've been video taping my daughter to get her tremors and stiffness, as well as her general movement on tape for the doctor to see, because the visible tremors and stiffness comes and goes. Her shakiness is something I can feel when I hold her. At least for the moment I have lots of home video.

Thanks!

collegemom

My daughter had a normal ultrasound also. The doctor wouldn't have even checked for Wilson's if I hadn't pushed. He kept saying that her liver would look bad and she would have liver enzymes in the thousands. I am so frustrated with him! Good thing that he referred us to the liver care team or I would have given him a piece of my mind. I kept trying to tell him her other symptoms and he said that I would have to tell her ped. because he was only a GI doctor and didn't deal with the other things. UGH!!!

Anyway, I can't imagine having to do a urine collection on a two year old. It was hard enough for my 5 year old to understand that she had to pee in one hat but if she had to poop it couldn't go in the hat. OK, so I am talking about bowel movements, I am sorry! :)

It feels good to talk to other parents dealing with the same thing as me. Our children are going to be stronger after all of this!

My oldest is very scared because she is watching her little sister going through all of this and she doesn't want to do it. She is in 5th grade and being different is not a good thing for a girl that age.

Better go for now. Can't wait to keep chatting with you all.

mamaof2

My 7 year old can't watch my 9 year oldget blood drawn or see him in the hospital. He totally freaks out. It's hard to watch your sibling go through all this. We have been consulting with a family therapist to help him deal with all the feelings that come about. It has really helped he learn how to listen to his concerns about himself and his brother.

mom2six

Hang in there Mamaof2 and anyone else with young ones who are dealing with WD! I know first hand how hard it is to go through all this with such young ones. My son was 2 1/2 years old when diagnosed, he is now 8 1/2. Before you know it years will have passed and you'll look back and wonder with amazement how you got through it. But you will!! And so will they. I think one of the hardest parts is collecting the urine in those bags. That was our only option so that's all I know and can't offer any another suggestions on collecting.
God Bless us all!

collegemom

We just got the liver biopsy results back on our five year old. The good news is that we caught is early and she only has mild inflamation. The bad news is that the tissue sample showed her copper level at almost 1800. Normal is 10-30. I can't imagine if I hadn't kept pushing and got the diagnosis what her liver would have looked like in a few years. Finding the right medicine for her is the challenge now. She is too small to swallow pills and that is the only thing that trietine (sp?) comes in. I had to buy the zinc at a natural foods store because none of the pharmacies carry it and her insurance won't pay for it yet. If the insurance won't pay, it will be almost $100 a month for her to be on the zinc. I just hope I got the right thing for her.

Now we just have to pray that our 11 year olds liver is OK. I am sure it is, but we may have caught it just in time. She will go in for a biopsy in a few weeks. They are waiting for her genetics test to come back positive, but her liver enzymes are in the 100's and her cerl. is 9. They were pretty sure she has it, but wanted to make sure. We had no idea that anything was wrong with her. If it hadn't been for her little sister we still wouldn't.

THanks for listening!
Bobbi

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