11 Responses to “Special Needs Discussion – Infectious diseases”

1. frustrated Says:
   March 21st, 2011 at 8:16 am

   Hi

   This is more of a heads up to everyone to simply not believe the Chinese paperwork. Even when queried. Reading all of last week’s posts, that has been clear!

   We adopted our daughter 3 3/4 yrs ago at age 11.5 months. NSN.

   We had her paperwork reviewed by Dr Johnson at U Minn before adoption (despite fact we are not in the USA) and he indicated a worry about her Hep B status. China confirmed she did not and had not had Hep B. We went ahead but made sure everyone had all the Hep vaccinations.

   On arrival home we had a full blood work up done (again not done in our country but we did it anyways) and it transpired that not only did she have severe lead poisoning but she also had had Hep B but had generated the natural antibody to it. It was probably vaginal transmission. We have been given a photo of her at a couple of weeks old and she clearly shows all the signs of Hep.

   We and the Ped also found IV scars on her etc. She was EXTREMELY traumatized by doctors surgeries for nearly 2 years after we got home, which we date back to her early experiences in China and each visit clearly put back our attachment in the early stages. (That and being forced to drink iron supplements for 6 months!)

   We are very lucky she does not have the virus now but I wanted to post our experience as it is absolutely essential (in my opinion) that everyone have their children tested for everything when they get home even if costly or not done in your country as you simply cannot trust the paperwork you are given. And it is essential that our children have an accurate medical history in so far as we can go. Our country’s medical system simply took on face value everything in the Chinese paperwork as true. Virtually nothing on it was true.

   If we had left it as is, she would not be the healthy child she is today.

2. MamaToOne Says:
   March 21st, 2011 at 9:03 am

   We adopted our daughter in 2010 and she has Hepatitis B. So far it is completely a non-issue. She was 14 months old when we got her. We made sure to get vaccinated before we went. The vaccine is a 3 shot series and in most states in the US, it is required that children in daycare or school have this vaccine. So the majority of people are protected from ever getting it. Hep B is also really only transmitted through blood or sex. So even if someone isn’t vaccinated, the chances of transmission are very slim.

   We have our daughter monitored by a Pediatric Gastroenterologist every 6 months. They do a full round of blood work and an ultrasound of the liver to monitor liver damage. Right now, there is no need for treatment. Should our daughter’s bloodwork ever indicate that her body is starting to fight the disease, we may have to start a round of anti-virals. The reason we wait is because if the body is fighting the disease, then it is also killing the liver. While the body is not fighting the disease, the liver is fine.

   You cannot look at a person and tell that they have or have ever had Hepatitis B. There are no outward signs of it.

   All in all, this is quite an easy SN to deal with. My daughter is healthy and looks perfectly fine. She has no restrictions on her activities. You would never ever know she was sick.

   At some point in her life she may face liver damage. This is rare in children though. It doesn’t happen to everyone with Hep B, but for those it does happen to, it’s usually when they are older, often middle age or older. And even then it’s not a death sentence.

   This is a very misunderstood disease and I wish more people would consider it.

3. mallmarie Says:
   March 21st, 2011 at 9:24 am

   I adopted my third daughter at age four from a waiting child list, her special need being HepB. Like most of the HepB children in China, the virus had probably been transmitted in utero by her birth mother. HepB is quite prevalent in all Asian countries…it is estimated that over 400 million Asians test positive for the virus.

   This is an amazingly easy condition to deal with. Once a year, my daughter has an abdominal ultrasound (to look for any possible liver damage) and bloodwork. She is now nine years old and has always been extremely healthy – has not missed a day of school in over three years. While her viral load is high, her liver enzymes have always been normal and no treatment is deemed necessary. If her bloodwork ever reveals an elevation in her liver enzymes, she will be treated with one of the excellent new antiviral medications (entecavir).

   There is an ongoing controversy as to whether it is advisable to disclose a HepB child’s condition to family members, friends, acquaintances, the school, etc. When my daughter first came home from China, I disclosed only to her doctors and the preschool, which I felt was necessary. As time went on, I have become more open about her HepB status – mostly because I do not want her to feel it is anything to be hidden or cause her any shame. I have not run into anyone, anywhere that treats her differently or avoids her because of her condition.

   As far as precautions are concerned, HepB is not transmissable through casual contact. It is a blood borne illness. While it is not advisable to share toothbrushes or nail clippers (and who would do that anyway!) there are no special precautions regarding food utensils, drinking out of the same cup, etc. any more than would be normal and hygienic for anyone with or without a communicable disease. The rest of the family (myself and my other daughters) are vaccinated and have our titers checked periodically. All school children and school employees are vaccinated as standard procedure in ALL schools, so there is no danger of transmission in school.

   For anyone considering a child with HepB, I would recommend that you be within reasonable driving distance of a good pediatric hepatologist, in order to have your child seen regularly and his/her condition monitored. It is also important to verify that your health insurance does not exclude coverage for the monitoring and treatment of HepB as a preexisting condition (I have paid almost nothing out of pocket, since mine does!).

   Many doctors are confident that a complete cure for HepB will be found within the next ten years. Seventy-five percent of children with HepB are never sick and never experience any negative effects of carrying the virus because their liver does not recognize it as a foreign entity. I would not hesitate to adopt another HepB child in a heartbeat.

4. southslopemama Says:
   March 21st, 2011 at 11:31 am

   We have adopted two girls with Hepatitis B, Kathryn in 2006 and Sarah in 2007.  They are now aged 6 and 5 and both in kindergarten.   Kathryn and Sarah have been a joy to our family and in terms of our daily lives, their condition makes no difference whatsoever!  It is very hard to transmit Hep B, and schools, etc. are supposed to use universal precautions for blood spills etc.  So we have only told the people we are comfortable telling and have not told their school.
    
   My husband and I got the Hep B series of shots before we traveled to China and our biological son got them as a newborn, so we really haven’t worried and in the years since we have brought the girls home  we have not had one incident that made us worry.
    
   We take them to the ped. gastro  for routine bloodwork every six months or so.  She is up on the research and has referred to a hepatologist a couple of years ago for liver biopsies.  These showed no damage to the liver.  Regular screening is definitely important.  At this time they are both absolutely fine and the virus is totally silent now.  In the future if it becomes active/starts attacking the liver, there are treatments available.  We believe that with all the research being done the future is very bright for anyone with Hep B, and already the odds are overwhelmingly in their favor that they will live long, healthy lives with no serious complications!
    
   That is the rosy part.  The not-so-rosy part is that yes, sometimes when I can’t sleep at two in the morning, I do worry about their future…and if it will ever cause liver cancer or cirrhosis…if the girls will be good about getting screenings and not drinking alcohol as adults…so, my other piece of advice is always that yes, as children, this condition is usually super manageable.  It can be more involved as the kids enter the teen years, in terms of treatments.  And, psychologically, despite the great odds in their favor,  you have to be able to live with a bit of uncertainty about the future.  When I say “once in a while I worry” that is the truth…I don’t usually worry on a day-to-day basis at all.  And that, I think, besides having good health insurance and access to the right specialists, is a prerequisite for successfully adopting a child with Hep B.  If a condition like this will cause you to lose sleep worrying over the future, then it is probably not the right SN for you. You want to be able to just enjoy your child and not be constantly worried about the what-ifs. I don’t mean that in a critical way..everyone’s personality is different.  DH and I both feel positive in general about the future for kids with Hep B, and that is why we can easily handle it.  We would have trouble handling some other SNs that others can very easily handle.  Hep B is a bit of a waiting game, and if you like assurances about the future…then maybe not something you want to take on.  But I would encourage you to do a lot of research on it..pkids.org and hepb.org and medlineplus.org ….before completely ruling it out, to see if the small risks of developing serious liver trouble in the future..small, but they are there…are something you can live with.  This SN has worked out great for our family, but I don’t want to sugarcoat anything, either!
    
   I am listed as a mentor for Hep B in the SN room of the forum and welcome any questions at all about it!
    
   I would love to adopt another Hep B baby.
    
   Also, Kathryn’s asthma has been more worrisome than the Hep B–although her asthma is thankfully quite mild.

   My forum name is the same, southslopemama.

   Steph

5. EileenB Says:
   March 21st, 2011 at 3:16 pm

   We adopted our daughter with Hep B when she was 11 months old. We knew her liver enzymes were high, but our IA doctor said that it was nothing to worry about. When she came home, her pediatric GI doctor said that her liver enzymes absolutely were something to worry about. She had a liver biopsy at age 2 and was at stage 2 fibrosis. The stages go from 1-4, 4 being cirrhosis. It was scary that she was already half-way there at age 2.

   We started her on PEG interferon when she was 3 years old. She had a shot every week for a year and had a blood test nearly every week as well. It wasn’t always easy, but she tolerated the treatment very well. At the end of the year, she was NEGATIVE for the surface antigen and had gained surface antibodies. We were so very thankful.

   We leave in 4 days to adopt our second Hep B child. Most children aren’t needing treatment, but since we’ve already been through it before, we feel confident that we can handle it.

   Our daughter narrated a slide show for the Hepatitis B Foundation. She is an amazing girl who never was slowed down by her hepatitis. We are so proud of her.

   http://www.youtube.com/watch?v=NfgD-YY3oSo

6. msc Says:
   March 21st, 2011 at 3:36 pm

   We adopted two children diagnosed as Hepatitis B+ prior to adoption. They are monitored once a year by a gastroenterologist and have blood labs drawn every 6 months to monitor the Hep B status and liver functioning. Currently no treatment is needed.

   The big work in our daily lives are the trauma related emotional and behavioral needs of our children. Attachment, anxiety, and post traumatic stress issues impact almost every moment of our day and the way we function as a family. It has been very hard work and we have made amazing progress, but years later we continue to work hard on these emotional needs. We have been working with Beyond Consequences Logic and Control and this has been a life saver for us.

   A major complicating factor for us with one of our children is extreme medical post traumatic stress disorder. This makes even the simpliest medical interactions impossible. Needless to say blood lab draws or any type of testing are beyond impossible. With a condition like Hep B requiring regular monitoring the medical ptsd has been so stressful for all of us. We are now working with a therapist and seeing some progress there.

   I will add too that these labs are also very stressful and traumatic for our child who does not have the same emotional challenges. At such a young age I was surprised how long that stressful event impressed on the memory.

   So, although the Hep B has been a non-issue for us so far, the medical trauma related to the regular monitoring is a huge issue for us. We were well educated on all of this prior to our adoptions, but living it and reading about it are very different. Of course we would do it all again!

7. sierrasmom Says:
   March 21st, 2011 at 7:09 pm

   My DD was adopted at age 3. Her SN was listed as HEpB+. HepB was the first medical condition we checked on our check list. We had researched it and felt very comfortable even though much about her future is unknown to us. As others have said we don’t think about it at all on a day to day basis. The most difficult part is whether to disclose her condition or not. Although unfortunately I had told some poeple in the beginning, now we don’t disclose it. It is her medical history and hers to share with whom SHE would like to. I did recently tell the nurse at her preschool. She had been going since Sept. and I hadn’t mentioned it but she has been having nosebleeds at home (unrelated to HepB). I have not put it on any of her medical forms for school and did not put it on her forms for kindergarten registration. I work at the elementary school she goes to and the nurse there already knows. She was a person who I asked questions of when we got our referral.
   DD sees a Pediatric GI 2 times a year. Her body does not recognize the virus so it is not fighting it. There is no reason for treatment at this time.
   We don’t freak out, (anymore!!!,) when she bleeds. We clean her up and put a band aid on.
   I do sometimes worry about transmission and I will tell you why. In my 20s I was diagnosed with acute HepB. My body fought the virus and cleared it without me really knowing I had it. The one thing that we never figured out was how I contracted it. I did not do drugs and I was married at the time and my husband was negative. So somewhere, out there I did get HepB from someone or something. So it IS important to practice universal precautions especially if you are working with young children.
   I would adopt another child with HBV in a heart beat. Changes are contantly being made in the medical field and time is on our side!!!

8. Mindy Says:
   March 21st, 2011 at 7:10 pm

   My son was adopted in August 2010 at 31 months of age. He has chronic Hep B (which we knew about in advance) likely transmitted to him at birth.

   Before bringing him home, everyone in our immediate family had their titers checked to make sure we were immune. I’m so glad we did this as neither my husband nor daughter showed immunity to Hep B despite having the full vaccine years earlier. They were both re-vaccinated. We will all have our titers checked again over the years.

   We see a pediatric gastroenterologist every six months. We do bloodwork at our local hospital a week before the appointment and then drive an hour away to the bigger hospital where she works. The two big numbers they look at are ALT levels and HBV DNA (the viral load). A child in the immune-tolerant phase will likely have liver enzymes (ALT) in the normal range (around 40) and a viral load in the millions or billions. This is because their bodies don’t recognize the virus as a foreign entity yet and don’t try to fight it off. The good thing is when they don’t fight it, they also don’t do damage to their liver — basically the fight causes liver cell damage and fibrosis. Many kids stay in this phase for years.

   Our son has shown elevated liver enzymes at his past two blood tests and we are waiting to hear what his viral load numbers are. If the viral load is dropping and his ALT is rising, this means he is likely moving away from the immune-tolerant phase and to the immune-active phase. If this is the case, it means we might start some type of treatment in the next year including an anti-viral and/or interferon shots. We will re-test his blood in six months. If his ALTs are the same or higher (he’s over 200 now) then we will travel to Boston Children’s hospital for a liver biopsy and then treatment. There are a handful of “big” doctors in the field of pediatric Hep B and luckily one of them is in Boston. Boston is a three hour drive from us, but if we do start treatment, we would likely just travel there initially and then work with our more local ped GI who will consult with the specialist at Boston.

   There are a few reasons we will wait another 6-12 months for treatment. 1) About 5% of children his age are able to fight off the virus successfully on their own. We want to give him some time to see if this is what is happening right now; and 2) we just checked our son’s titers for various vaccines he received in China. He showed no evidence of immunity to a few of them (I think polio and tetanus) and he also needs to finish his Hep A and MMR series, so we will need to get those taken care of before we start something like interferon which suppresses the immune system. This is something I wasn’t thinking about beforehand.

   Besides the medical side of things — which despite my paragraphs above, has not been a daily issue at all — the main issue in dealing with Hep B is disclosure. We have only disclosed to a very few people (family and one other couple). I did disclose to the nurse at my children’s school. She is someone I had a relationship with previous to this and I felt very confident in her ability to keep it confidential. She recommended that I not disclose to any other people at the school. She does universal precaution training with all staff and said it should not be an issue.

   We also disclosed to the woman who was to be our son’s daycare provider. She is a very respected childcare provider in our town who had cared for several other children adopted from China over the years. The short story is she freaked out. As background — we live in an area of the country where there are much lower rates of vaccination and it is very easy to get a vaccine exemption for daycare or school. She said less than half of her current children were vaccinated and she did not feel comfortable having him in her care and not informing the other families. We had many discussions with her and overall it was a very disappointing and disheartening experience. I was very surprised by the lack of vaccination in my community and the feeling from others that it is our duty to share my child’s private medical issues in order to educate others. In the end, due to this and to other issues which I’ll discuss next, I actually decided to quit my job and stay home full time with my son.

   The other big issues my son faces, not related to his Hep B status, is significant speech delay. He was in his orphanage for 2.5 years (not foster care) and came home with no first language. He did not babble or say any words in his native dialect. He grunted and pointed. We got him into early intervention right away and were able to get him an IEP when he turned three. He also has oral motor delay (low facial muscle tone) and major drooling. With pretty intensive speech therapy, his is making amazing progress and just started talking up a storm!

   Our new son is the most amazing little boy — he is happy, cheerful, well-attached, and one of the funniest kids I know. He cracks us up all day long!! We have had no attachment issues so far. He is friendly to all adults, but LOVES his mama and daddy. He sleeps great, eats great, loves his big sister and brother, and is an absolute joy to be around. It’s basically a lovefest around here :).

   While it seems his Hep B will likely need more active intervention in the next few years, I would adopt another child with Hep B in an instant.

9. msc Says:
   March 21st, 2011 at 8:46 pm

   I wanted to add to my post above that I am very thankful that from the beginning we had tried to do all of the bonding/attachment work we had read/heard about (thankful for those before us who led the way). We carried our child everywhere, we co-slept, and we did all the primary care for the first 6+ months. Shortly after coming home we also realized I was not going to be able to go back to work. I have been home full time since then and am now homeschooling too. Although emotional needs are still our biggest challenge, I am glad we started that work right from the start.

10. ear Says:
    March 22nd, 2011 at 11:41 am

    We adopted our daughter at age 5 with full knowledge of her Hep B diagnosis. She is currently happy and healthy. She sees a pediatric gastroenterologist once a year. She is currently enrolled in a Hep B study of children which will lead to a second study testing a drug cocktail treatment for children. This treatment has already been found successful in adults in China.

    I wanted to echo an earlier comment on living with a child with Hep B concerning fears for the future. I am sure all parents with SNS suffer from these fears. I have a SNS bio sister and I know my parents worried greatly about her future and even now that my sister who is 40 and married my parents still worry. I think that is the gift of parenthood WORRY. But I echo the fears… I too have spend hours dealing with pent up fear and sadness over who will love my daughter, will potential in-laws be welcoming? And since we are older parents I worry about her developing liver cancer in her adulthood and not being able to be there for her. These worries hurt. Just writing this is causing me to cry, but that is love and the fact of life if raising a SNS child.

    Then there is the fear of reality. The fact that most children with Hep B with certain numbers will live a happy and healthy childhood is the truth and the norm. Most will live a happy healthy life with no complications. That is the truth, I have met many Chinese who are. But then reality strikes. We got a ultrasound result 1 year ago with an abnormality in the liver. The doctor said it was something to watch and that in 30 days a repeat ultrasound would need to be done. My husband is a physician, he received the phone call and was not concerned by the information. I on the other hand I was petrified that my baby daughter was sick and that we had entered a phase of the disease that would be scary. Everyday I was afraid, I mean AFRAID, sometimes unable to carry on with day to day chores. Fortunately the repeat ultrasound showed that the abnormality seen was actually a fold in her liver and my baby daughter was perfectly healthy. A scare over nothing. But it hurt, I couldn’t imagine my baby girl sick or life without her. So this to is what living with Hep B is about.

11. Sarah Says:
    March 24th, 2011 at 11:19 pm

    @EileenB — that video was FANTASTIC. Thank you to you and to Maya for sharing. I seriously cried through at least half of it. She’s one terrific kid!