mother § baby need help

[Lynn2]

I went through 7 invitro cycles to get my baby boy.  It was the happiest time of my life with his first birthday next week.  I decided to try for a sibling for him and went through the infertility blood testing.  They called me and said I had hep c.  Worse than that my baby has also tested postitive.  They did not test for this in the past it is a new requirement.  We both have type 2b.  My question is on the viral load.  Mine is 10 million range and his is in the 2 million range.  What do these numbers mean??  Is there any treatment for my baby.  They told me I was a candidate but I have not me w/ GI doc.  My baby does not go for another week and the waiting is killing me.  Please help with any info you have.

[cuteus]

The fact that is now a requirement in some procedures to test for hep c is encouraging news, great news.

I probably was infected with hep c during my last pregnancy, did not test my child until last year when my dx came in, she is 15 and negative.  It is a low risk of transmission, but it sadly happens. I am sorry it did in your case. There are others in this forum, gwithhepc, who is in a similar situation. Hopefully she will drop by and give her experience with this.

You will learn a lot from this forum,  we are mostly hepc sufferers with a very caring nature and many here had gone through great lengths in researching studies to link us  with.
Mostly, we share our own personal experiences with hep c
good luck to you

[scruffy]

Be patient for an answer cause weekends can be quite slow on the forum. Good luck.

[TravelGrl]

Dear Lynn,
  I have not posted in many months, but reading your post and knowing exactly what you are going through I will share some knowledge with you.  My daughter also tested positive for hcv...she was 4 when we found out.  She just turned 16..Also contracted virtically from me at birth.  

  I was told by many doctors that a good amount of babies and young children will clear the virus on their own...That is the first good news for you..She is still just under a year and has a good chance of spontaneous clearing...Next good point is that you both are infected with genotype 2.  This is the easiest type of hcv to get rid of.  I believe treatment time is still six months with an 80% (or more) cure rate.. As opposed to genotype 1's, who need to do treatment for at least a year or more now..So don't get crazy yet.. Make sure you get the baby to a good pediatric hepatologist with experience in hcv. And you need to see a hepatologist for yourself.  As I said, type 2, seems to be a weaker strain of the virus and easier for most to get rid of.  

Good Luck to you and baby...I do know your pain...

Jodi

[TravelGrl]

Forgot to mention that Yes! they are treating children now too.  So if you decide you want to treat your baby, there is treatment for her/him. I also suggest treating while they are youngest...Just my opinion.. I have found out dealing with this illness and trying to treat when they are teenages is very difficult.  Too many things seem to get in the way...Like now we are dealing with whether or not she can go to college if we don't get rid of this nasty virus...etc...So if the choice is yours to treat while they are young...My suggestion to you is do it!!  You don't want to have to deal with...high school, college...the timing just never seems right as they get older.. Hopefully your baby will clear on his/her own and you won't have to deal with any of this...

Please keep me posted..I wish you only the best!

Jodi

[Indiana]

I'm sorry to hear that you both have this. The good news is that they have found this out BEFORE you 2 have problems/symptoms. Your Genotype does have the best success rates (80+%). The viral load means nothing as far as the damage levels go. It only means something when you try to treat and then only in the time it takes to clear.
One thing I want to STRESS is for you to get and keep your own copies of ALL tests and results and keep them in a folder at home for each of you. You will both be seeing many different docs and these copies become invaluable when you need answers. It also gives you something to refer to when you try to make sense of all this stuff and make decisions. Get Those Copies!
Here is a copy of an old post written by Majneni(one of our "oldies") with a list of good sites that you can look at for information to start you off. Learning about this will help to take the fear away.......
________________________________________________________________

Hi,
Sorry you're dealing with Hepatitis C, but welcome.
Relax, this is a slow moving disease, and there's a lot you can do. Make sure you have a good doctor (preferably a gastro-enterologist or hepatologist) to work with you. You're going to need this doc for a while, so make sure you have good communications. Good luck, and come back here with your questions and comments.
Here are a great bunch of web sites where you can get informed.
Don't go crazy: the information on these web sites should be the same, so read just enough.

Get the basics on the FAQ's of these general HCV sites:
http://www.liverfoundation.org/ (American Liver Foundation)
http://www.natap.org
http://www.hepnet.com/hepc.html
http://www.cdc.gov/ncidod/diseases/hepatitis/c/fact.htm
http://www.carbonbased.com/cbcblood.htm
http://www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm
http://www.battlinghepc.com./
http://www.hepcassoc.org/links.html (many links)

http://www.themedicineprogram.com/info.html (helps pay for meds if you can’t; may be restricted to USA)
http://www.hepatitismag.com (bimonthly magazine)
http://WWW.clinicaltrials.gov (about ongoing clinical trials/US)
http://janis7hepc.com/index.htm (a wonderful memorial to a woman who lost the fight; great general and specific information)
http://hepatitis-central.com/hcv/labs/toc.html (explains labs)
http://www.hepatitis-central.com/hcv/liver/scoring.html
(Liver Damage grading chart)
http://hepatitis-c.de/viraload.htm (Viral load info)
http://www.jacksonwalter.com/hcv/comboguide.htm (The Combo Survival Guide from A-Z. Very funny and informative, written by 3 women who did the pre-Peg therapy. Re: side effects)
http://www.natap.org/2002/easl/slideShow/sld001.htm

In addition, you can usually get specific information about specific medications by searching the web using the keyword, "name of medicine."
Good luck!
Maj Neni

[LvdByGod]

HERES AN VERY SMALL ARTICLE BELOW THAT TALKS A LITTLE ABOUT WHAT  TRAVEL MOM IS SAYING ABOVE AND THERE MAY BE SOME NAMES ON IT OF PEDIATRIC DR.S OR CLINICS OR THE SOURCE OF THE STUDY INFO THAT PERHAPS YOU COULD USE IN A SEARCH TO GUIDE YOU ON TREATMEMT FOR INFANTS...(CUT AND PASTE)

...THIS IS THE ONLY ARTICLE I FOUND HANDY...PERHAPS OTHERS WHO WENT THROUGH THIS HAVE MORE CONNECTIONS...TREATING INFANTS AND SMALL CHILDREN IS AN AREA THAT I'M NOT SURE ABOUT AND I'M NOT SURE WHAT THE SAFTEY INFO (EFFICACY) IS FOR THE STANDARD TREATMENTS IN SMALL CHILDREN...YOU COULD LOOK AT THE PEGASYS/COPEG AND SHERING PEGINTRON SITES (BELOW) TO SEE IF THEY HAVE PRODUCT INFO ABOUT TREATING INFANTS OR SMALL CHILDREN...YOU COULD WRITE THEM TOO AND ASK IF THERE ARE ANY STUDIES BEING DONE ON THIS,BECAUSE THE TREATMENT CAN BE DANGEROUS...ALSO,PERHAPS OTHERS HERE KNOW MORE ON THIS SUBJECT...YOU MAY HAVE TO GET A PEDIATRIC SPECIALIST WHO SPECIALIZES IN HCV IN BABIES...


HCV Genotypes and Pediatric HCV Infection:

http://www.hivandhepatitis.com/2004icr/39easl/documents/0426/042604_hcv_4.html

ROACH PEGASYS:

http://www.rocheusa.com/products/pegasys/index.html

SHERRING PEGINTRON:

http://www.pegintron.com/pegintron/index_combo.html

AS FAR AS YOU GETTING TREATMENT; STANDARD PROTOCAL RIGHT NOW FOR TYPE 2 IS 6 MONTHS ON PEGASYS OR PEGINTRON AND RIBAVIRON...IT IS MUCH BETTER TO TREAT THIS BEFORE IT TURNS TO MED-HIGH FIBROSIS OR CIRHOSIS...THERE ARE MUCH BETTER OUTCOMES TO FUTURE LIVER HEALTH REVERSAL...HIGH FIBROSIS AND CIRHOSIS IS THE HARDEST TO REVERSE...AND CAN LEAD TO FATAL OUTCOMES AND LIVER CANCER...

OUR THOUGHTS AND PRAYERS ARE WITH YOU BOTH...PLEASE CONCIDER JOINING US DAILY FOR SUPPORT...WE CAN HELP YOU LEARN THE BASICS AND KEEP UP TO DATE ON NEW APPROACHES...PLUS WE JUST PLAIN CARE ABOUT YOU AND YOUR BABY...LUV AND CONCERN, SANDI

[cghamm]

I did my best to reply to your questions on Endoscopy. It's located in athread called "Travel" down the page on 5-5-04. Let me know if you find it, and let us know when you're going to get it done. It's important.
Regards,
Craig

[GwithHepC]

Lynn2:

I was infected when I was an infant from a blood transfusion (as best I can tell) 37 years ago and my daughter, who is now 13, was also infected by me when she was born.  We both just found out last year.  I have mild fibrosis (Stage 1-2) and she has none (Stage 0).  Both my hepatologist and my daughter's recommended we wait to treat.  There are studies indicating that people infected as infants do remarkably well for at least the first 35 years: <A HREF="http://archive.mail-list.com/pkids/msg03534.html">here is one.</a>  Unfortunately, as with Travelmom's daughter, Amanda, this is not always the case, but in general, most do.  A great website with information on children with hepatitis is: <A HREF="http://www.pkids.org/">www.pkids.org</a>.

As for treating children, combination treatment is approved for children using regular interferon; pegylated interferon is not yet approved by the FDA for children.

I know it's natural to worry, but your son has time on his side with this, and you both are lucky that you are Genotype 2.  Try and relax today and enjoy Mother's Day!

Cuteus:

Thanks for emailing me!  

Everyone:

HAVE A GREAT MOTHER'S DAY!!!!!!!!!!!!

(Tallblonde: especially you)

G

[LvdByGod]

hi craig, thank you so much for the info on the endoscopy. it was so helpful to me....i havn't been on the board that much for the past few days because i have been at the hospital having all sorts of testing done...i still have a c-scan and the endoscopy yet to go...i think i posted a another note to you somewhere else on the board since your endoscopy information...i hope you can find it...i can't remember what i said or where i posted it...it's somewhere arround here...sorry...

thanks again,  that info really meant alot to me and it's good to know i have someone who has tread this ground before me...

by the way how are your varises now and when do you get them relooked at...?  i'll have to reread your post and see if you already told me in your note...my brain is fried these days...sorry...sandi

[t2622b]

Mother and Baby,
I adopted a 2 year old who was born to a Chronic Hep C mother.  He tested + for the Hep C antibody but has continued to test - for the actual Virus (HCV-PVR)  They say that some children have spontaneus remission and that is what they say happened to my son because he is almost three and never shown any sign of the disease. They also said that children tend to fight it off easier than adults so maybe your little one will.  I wish the best for you and your baby I know how scary this can be.  My son's birth mother is dying from liver failure.  I don't say this to scare you because the chances are extremely low for this.  She refused treatment and continued using methodone and alcohol so she just expidited her illness.

I will keep both of you in my prayers.   I hope you find peace with this and understand that it is not the end of the world.  You will find lots of encouragement on this sight.  I come hear just for encouragement and to see who needs the extra prayers.  These guys are everyday people dealing with and extraordinary illness.