Baby with HepC need help

[t2622b]

Hey guys,  I posted this question on the other Hep C support site and I am not getting a response so I thought I would try a different route as I am worried about my daughter.  My two year old adopted daughter tested + for HepC and is Genotype 1b.  She is constantly complaining of stomach pain.  She gets on the floor in the fetal position and tightens her entire body and cries.  She does this for minutes or even up to 30 minutes.  Her liver enzymes are in the High 70s ALT and AST but her viral load is in the 100, 000s so not too high.  I worry that this is her liver hurting her.  We have exhausted every other diagnoses for this pain.  She has a Hepatologist out of Texas Childrens and he can't tell me for sure if it is the liver or not.  He says the liver IS inlarged but doesn't look too bad on the ultrasound.  He said the only way to really know is a biopsy.  What do you guys think?  I don't want to do it if I don't have to.  Isn't it extrememly painful??  Help me please I have to make this decision soon and am helpless

Thanks

Worried Mommy

[triggertime]

Your post has touched my heart. The only thing I can offer you is my prayers. Not only for your daughter but for you as well.

triggertime

[dancegirl54]

I dont know if you have been on the pkids forum, it is specifically for parents of kids with chronic or other illnesses. On the hep side there are countless parents with adopted kids with HCV and HBV,  You can probably get support thats more specific to your child's age.  They also do Q& A calls with prominent pediatric hepatologists.  My kids are older but I still got lots of help and info there
Lisa

[amommy]

Hi there,
I am the mom of a child with hep c as well, so I completely understand how you are feeling and what you are going through.  I am unsure whether I would do a biopsy on a child that young.  I have not had a biopsy done on my daughter.  On the other hand, she does not exhibit any of those symptoms that your child is exhibiting.  That might be enough to sway me to do the biopsy.  Are you comfortable with your child's doctor?  If not, that is the first place to start.  SWITCH!  We have a fantastic pediatric gastro and essentially, at this point, she does not need to see my daughter until we have decided to treat her.  Having gone through treatment myself, I can't say that I am in any rush to put her through the same.  Anyway, I just wanted you to know that you are not alone out there.  I don't get on this site too much anymore, but something was pushing me here today and I think it was your post!  I'd be happy to keep in touch with you if we can figure out a way to do that.  

[zazza]

I have not been through a biopsy myself, due to a clotting disorder. But I am a mother, and as such I would like to know what I and my child were fighting against. If the doctors approve of a biopsy, I would want the information it would give us. Knowledge is power.

[SJL]

Have you researched to see if their is such a thing as a Pediatric Hepatologist or Immunologist? I would hope that their would be for small babies and children. I am sure the University can answer this for you. If your hepatologist appears to be to busy for you, even though he is suppose to be the "top gun" in his field, ask to see another one. You are hiring this Doctor and if the fit is not right and you feel that way, it's time to find another Doctor. I am also going to a University Hospital, Shands in Gainesville, FL. I have a team of 4 Specialists on my case and they are all fabulous. Time spent with them has never been an issue. Go in with a list of your questions and tell him from the beginning that you want to go over them. Push for answers to your questions-you have to almost take over the appt. to get their attention. I am so sorry for you, this has to be difficult. As for the stomach ache, I feel that milk upsets my stomach and gives me a terrible hurting feeling. Let me know if I can do any research for you, I would be glad too. Be persistent and get those answers.
SJL

[charm27]

Im sorry I couldnt help except for giving you info on an adult having a biopsy. If you feel he doesnt have enough time for you..then maybe you should possibly look into another doctor. However unfortunately we all know how busy physicians are. If you like him as a doctor then you need to weigh it out and perhaps stick with him. Of course your decision as to the best interest of your daughter. Just want you to know I hope and pray that you will find an answer.

There is always someone on the forum that will reply to your post.
Please let us know how the little angel is doing. OK????

Good Luck

[t2622b]

Thanks for your input.  I was worried that no-one would respond.  I know I am not a regular here but I have come on the site here and there for advise so I really hoped I would get some help.  I am going to see the Hep doc again on Wednesday of next week.  He is the head of the Pediatric Gastroenterology dept at Texas Children's Hospital.  He seems to know his stuff but he doesn't have enough time for us.  He is always sooo busy and I feel like he doesn't answer all my questions.

Thanks again

[charm27]

I am so sorry to hear your daughter has HCV. Please know that I hope all works out for her very soon. We are all adults here and none of us are doctors. I  saw your post and was very touched by it. For us adults a biopsy is a painless procedure. I dont thik anyone except your physician-hepatolgist will be able to give you answers

If it were me I would MAKE SURE Your daughter is seeing a top hepatologist.
I wish you and your child all the luck in the world.

We all hope for a cure soon.