Ryan is Hepatitis C+

14 03 2011

(Guest post from Nora, Ryan’s mom.)

courtesy sugar daze

As a little girl, I dreamed of being a wife and mother with a home filled with children. 

When I realized that “prince charming” wasn’t showing, I knew I could still be a mom.  When I set out on the journey alone, I thought it would take forever, however I was a lucky one.  I signed with an adoption agency in June of 2002, and my son was born in August 2002. 

When the agency told me they had a birthmother looking for a single mom, I questioned why? In speaking to the birthmom she said “she had grown up in a household where her parents fought a lot, so her thought was if there was one parent she was ok with that.”  Anyway, it worked out great for me. 

 The agency told me the mother was a drug user and had hepatitis B and C.  I thought “OK so what does that mean?”

I was able to get the birthmom’s medical records as well as my son’s records, once he was born, and have then reviewed.  At birth, my son’s blood was non-reactive to hepatitis C and of course he was given the vaccine for hepatitis B.  OK, non-reactive that’s good right?  Well it really doesn’t mean anything except that the virus is not active as of right now, and we would have to wait until he was 15 months old to run further blood work. 

 When I was asked if I still wanted to adopt him, I thought they were crazy, well of course.  He was my son, it was meant for me to be his mom and my blessing from above.  We plugged along with him over the first year having some issues, having to be withdrawn from the drugs he was born addicted to, having a bout of meningitis, bladder infections, a lot of virus issues etc.  Then the dreaded 15 month time frame was here. 

Ok we went and had the blood work and I just knew in my heart that since I had been told that there was less than a 1% chance that he would have hepatitis C that we would be doing this just to get the all clear.  I remember it was right before Thanksgiving and I was going into the mall to shop when my cell phone rang.  It was Ryan’s pediatrician who was a friend that I had worked with over the years.  I couldn’t believe what I was hearing, his blood work was positive for hepatitis C.  What, say that again?  You have to be wrong, right? 

No, he wasn’t wrong.  He told me to enjoy the holiday and he would see me right after.  Enjoy the holiday, are you kidding me, how would I ever enjoy anything again? 

You see for me the first 15 months of my son’s life was spent dealing with the other issues, and not ever really thinking that we would have to deal with HCV.  I didn’t really know a lot about it and my first thought was “Oh my God, I am going to have to watch my child suffer.” 

Well over the next week I began researching and reading everything I could on hepatitis.  By the time Ryan got in to see the GI specialist, I knew we had to run a genotype screening and viral load blood work.  I was in an attack mode and wanted my baby fixed.  Well I wish it was that easy.  The GI physician here at our local Childrens’ Hospital told me that there was not much info on children dealing with this disease and he would follow Ryan with blood work and ultrasounds every six months, and at age 3 we would treat him. 

WHAT, I wanted something done now.  Of course I realized in my mind that that was not the protocol and that I had to trust the doctors.  That was hard for me, I wanted to be in control over what happened with my son, not this horrible disease that could be eating away at his liver.  How would I allow it to go on for another 2 years before we did anything?  Of course, now I realize the harshness of the treatment, but at that time I just wanted it not to be true.  I prayed that I would be strong for my son and be able to gain as much knowledge as I could about this monster living within his blood and liver.  

(Ryan is finally in treatment.)





Sabina Gets Active Against HCV

10 03 2011

(Guest post in a series from Sabina, our 15-year-old friend living with hepatitis C.)

Dear Readers,
 
Yesterday, I had my fourth interferon shot! And I didn’t feel any pain.

Yes, I was anxious but when I actually got the shot it was easy. So far, I’m lucky that I have not had any symptoms after the shot.

Sometimes I get headaches, nausea, and tired from the ribavirin pills. But I still feel upbeat and I’m really glad that so far I can do the sports I love to do.

Courtesy: Meredith James Johnstone

Last Tuesday, I started dance classes for the first time and I’m having great loads of fun. This Friday I have tryouts for volleyball. I’m excited for that. I don’t know if I can keep up both sports but I’m going to try.

Beyond sports, I feel like I’ve been able to do most activities and work at school. I haven’t missed any time, although I’ve been pretty tired. I’ve been going to bed early, like around 8 instead of 11.  That’s a big difference but I’m tired and I get to the point where I can’t keep my eyes open any more. This makes it harder to get my homework finished, but if I work on managing my time I can get everything done.

My parents say that if I get too tired I will have to let some activities go. I realize I shouldn’t overwork myself. But it feels good to be active and to have goals set for myself. 

One question I have for my readers is this—are there any other kids out there who are like me and going through this or thinking about getting treated? What are your views? What are the obstacles you are running into? And are you having any serious symptoms? I would love to hear from other people.





HCV+ Teen Tells It

24 02 2011

My name is Sabina, I live in San Diego, and I’m 15 years old. I have had hepatitis C (HCV) for about 13 years now and I have just recently decided to get rid of it and started treatment.  

On MLK day I’m happy to say that I celebrated my first full week of being on the treatment. And let me tell you it wasn’t as bad as I thought it would be.

I started the treatment on January 10, 2011, and now I take two drugs. Every Monday I have to give myself a shot at night. When I was about to get my first shot, I was so nervous and scared. I thought the needle was going to be inches big but it wasn’t. The needle was an inch if not half an inch big. And it didn’t hurt one bit. But still I’m scared for every Monday to come.

Every morning I take pills after breakfast, and in the evening I take another dose after dinner. And so far I haven’t gotten any serious symptoms. Though everyday I get headaches in the evening that really hurt, but as I was doing some research I found out that it’s better that you don’t take medicine to try to make it better. Instead you should eat and drink lots of water, and it really does help.

From talking to people that have gone through the process before, some tips I learned were carrying a water bottle around with you is smart so you can always have water to drink, to not overreact if something happens because its happens to everyone, and to make sure you tell your parents everything from itchiness to headaches to how you’re feeling.

Something that I’m always concerned about is forgetting to take my pills every morning and evening. But you don’t need to worry about that. You should know that if you forget to take your pills in the morning you should never take 4 that night at once. All of that medicine at once can put a dent into your body.

Another thing that I’m worried about is my sports. But I was told from the doctor that after a few months I should be ready to go back to my everyday activities and sports. I’m a volleyball player and club season is coming up, and the doctor says I should be healthy enough to play. Great news, huh? So if you are a sports person don’t stress about not playing.





Ryan and HCV

7 02 2011

Ryan’s mom Nora talks about Ryan and his daily struggles with the difficulties in treating hepatitis C infection.

Listen now!


Right-click here to download podcast (7.5 mins/3mb)





Canker Sores

3 01 2011

Dr. Mary Beth, PKIDs’ advice nurse, explains the difference between canker sores and oral herpes, and what you can do to relieve the pain.

Listen now!


Right-click here to download podcast (5min/2.5mb)





Got Flu?

13 12 2010

Dr. Mary Beth, PKIDs’ advice nurse, helps you get through nasty influenza.

Listen now!


Right-click here to download podcast (6mins/2.5mb)





Got a Cold?

29 11 2010

Dr. Mary Beth, PKIDs’ advice nurse, offers tips on relieving some of those cold symptoms!

Listen now!


Right-click here to download podcast (5.5 min/4mb)





Medicine: Modern v. Ancient

18 11 2010

As the number of Americans with no health insurance soars and more people use the emergency room as a primary care clinic, it is no wonder many Americans have the jitters about healthcare.

With all the news coverage and grim forecasts, it’s easy to forget that many aspects of modern medicine are dramatically superior to days of yore.

Take Arcagathus for example: the first doctor in Rome, he was widely admired until word got around that his use of knives and cautery was more likely to bury the patient than heal him.  Thereafter, he was known as the “Executioner.”

Nowadays, we can be grateful that physicians have to go to school and learn all sorts of ways not to harm a patient before they’re allowed near one.

Modern medicine may be expensive and over-prescribed, but as a rule it doesn’t contain heroin.

In the late 1800s, Bayer added heroin to their cough suppressant for kids, and boy did it work.  But after a few years, people noticed the hospitals were filling up with addicts.  They still weren’t coughing, but what a trade-off!  By the early 1900s, Bayer pulled the drug.

On the upside, and at about the same time, Bayer brought aspirin to us, and where would we be without it?

Reports from two centuries ago of experimental treatments by the surgeons of the Royal Navy provide additional perspective on today’s healthcare woes: One pneumonia patient had pints of blood removed in an effort to cure him—it was called bloodletting. He still managed to expire, confounding his surgeon.  Another Royal Navy favorite was “tepid salt water baths.” Surprisingly, there were never any survivors of this therapy.  One poor sod who fell overboard and nearly drowned had tobacco smoke blown on him as a cure.  He did survive, but ended up hospitalized for pneumonia.

In ancient Mesopotamiaa sorcerer would be called in to determine which god caused what illness in a patient. Having identified the god, the sorcerer would attempt to send it away with charms and spells.  We do not have accurate records as to the success rate of this treatment.

The Egyptians believed mightily in the practice of medicine and left copious notes on papyrus for following generations.  Dr. Bob Brier shared some of their cures in his book, Ancient Egyptian Magic. After reading a bit, our mood elevated, our perspective shifted, and we decided to just shut up and soldier on, happy with the modern medicine we have.

In case you’re curious about what was written on some of that papyrus, read on, but do not try this at home:

Cure for Indigestion

  • Crush a hog’s tooth and put it inside of four sugar cakes. Eat for four days.

Cure for Burns

  • Create a mixture of milk of a woman who has borne a male child, gum, and ram’s hair. While administering this mixture say:

Thy son Horus is burnt in the desert. Is there any water there? There is no water. I have water in my mouth and a Nile between my thighs. I have come to extinguish the fire.

Cure for Lesions of the Skin

  • After the scab has fallen off put on it: Scribe’s excrement. Mix in fresh milk and apply as a poultice.

Cure for Cataracts

  • Mix brain-of-tortoise with honey. Place on the eye and say:

There is a shouting in the southern sky in darkness, There is an uproar in the northern sky, The Hall of Pillars falls into the waters. The crew of the sun god bent their oars so that the heads at his side fall into the water, Who leads hither what he finds? I lead forth what I find. I lead forth your heads. I lift up your necks. I fasten what has been cut from you in its place. I lead you forth to drive away the god of Fevers and all possible deadly arts.

Modern healthcare certainly has its problems, but at least today’s patients are free of spells, tobacco smoke and bloodletting. Is that better than a 4-hour ER visit? You be the judge.





Lessons Learned from Botswana’s AIDS Fight

16 07 2010

In the early to mid-’90s, life expectancy in Botswana was 65 years. Ten years later, it was below 40 years of age due to the impact of AIDS. The children of Botswana were also affected by the pandemic. To date, nearly 100,000 children have lost at least one parent to AIDS

Faced with such losses in a country with a population under 2 million, and determined to save its people, the government took action and the Botswana-Harvard AIDS Institute Partnership (BHP), was founded.

The Institute provides training and research, and acts as point of contact for the efforts to reduce HIV/AIDS in Botswana. In 2001, simultaneous to the opening of a state-of-the-art lab funded by the Institute, the government launched the Masa (or “new dawn”) treatment program, buying antiretrovirals and making them widely available at no cost to infected citizens. The research capabilities of the BHP, along with Botswana’s HIV/ AIDS education, prevention, and treatment efforts, are unparalleled and show impressive results.

Key factors in Botswana’s fight against HIV/AIDS include:

  • International and national funding and research partnerships (represented by the Botswana-Harvard AIDS Institute)
  • Coordination of education efforts at the national level, and targeted to specific populations including school-age children, pregnant and new mothers, and high risk adult populations
  • Education outreach including targeted mobile outreach (involving peer-to-peer education and counseling)
  • Focus on enrolling mothers in the program to prevent mother-child transmission of the disease.

Stemming the tide of mother-to-child transmission of HIV is crucial in halting the spread of disease. In Botswana, peer-to-peer enrollment in the government-sponsored prevention and treatment program slowly increased maternal participation from under 10% to just over 33%.

Both the Masa and the Botswana-Harvard Institute aren’t easily replicated in countries without a similarly high level of financial and governmental support, but the lessons learned can still be applied.

Although it’s unlikely that most developing countries have the resources to accomplish what wealthy Botswana has done, it is a bit of bright news in the otherwise depressing struggle that is HIV/AIDS in Africa.





Placebo Effect

14 07 2010

The placebo effect. For some of a certain age, that phrase brings to mind the M*A*S*H TV show, where Col. Potter and his docs ran out of pain medication and ended up using sugar pills until their supply was replenished. It worked!

OK, it was pretend, but it also works in real life.  Sometimes.

Whether it’s called the “meaning response” or the good old “placebo effect,” we end up in the same place—a fake treatment potentially causing a real, positive result. 

Dr. Harriet Hall wrote a piece featured in skeptic.com that compares various studies done over the years. In it, she indicates that the placebo effect is real for some.  Sometimes, the problem and the effect are self-reported, but not measurable using objective data. Other times, the results are measurable, suggesting there may be a  neurobiological response causing the positive result.

Some scientists, like Dr. Mark Crislip, do not believe there is a placebo effect. 

The whole thing can be rather confusing.

As parents, we know that placebos or something like them work.  How many of us have given a small child a sip of sugar water or a piece of candy and promised it would make the pain go away?  And then it did.  Subjective?  You bet!

Some of us have children living with chronic diseases, and we employ subterfuge on occasion to get over the small bumps in that road—nothing claiming to cure, just a little something to ease the pain or discomfort.

Is it real?  Is it ethical?  We each have our opinions.  What do you think?








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