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FYI

7 Jun

Sorry for the lack of blogging lately.  Life is busy, and we have been battling ringworm in our house for about two months.  It has been “lovely”  just barrels of fun  Our son apparently is fungal prone (doctor’s wording) and got ringworm of the scalp yet again.   (He also had it last spring.)  Yesterday after another trip to his doctor, we picked up his second round of medication. 

What was different this time around was that he “shared” it with others.  My husband, myself, our daughter, and poor ol’ nana all got numerous spots on our neck or arms.  I went to the dermatologist not knowing what mine was at first, and the doctor said that ring worm of the scalp can spread to others on the skin.  It’s the same fungus.

So why am I writing about this here…well everyone in our house got ringworm except… Noel.  I found that amazing.  You would think she would have gotten it too, but she still has not gotten any spots.   It just goes to show that HIV medication does wonders.

Making Weight Progress- more meds

25 Oct

 My two new favorite words are Megace and Reglan.  These new medicines have made an AMAZING difference with our daughter.  She has been on Megace for almost a month and our doctor added Reglan a little over a week ago.  Megace works to increase a person’s appetite and Reglan helps with nausea, reflux, and delayed stomach emptying. 

Reglan is known for some pretty serious side effects.  After finding out that the risk of side effects were low due to a low dose and short duration, we decided to give Reglan a try.  She improved some with just Megace, but we saw a definite improvement with the Reglan added.  We will still need to go to our GI appointment in January to see what he thinks is going on.  But these two medicines have helped her to begin to eat.

Our daughter for nine months would barely eat or drink anything.  Everyone has been a little baffled by her.   She has some sensory issues and oral motor delays which may have contributed to her lack of appetite, but these medicines seemed to have turned everything around.  It is like a switch turned on in her head…like “Oh, I need to eat food.”  She is also drinking more than before.   It has been exciting and amazing at the difference in our little girl.

Since she is eating more, her bite is getting stronger, and her chewing is improving. She had only been eating things that would kind of dissolve in her mouth.   But last week she really began chewing food and even ate some meat.  This has been a huge relief to our family.   Just seeing her really eating is the most wonderful thing…still messy but sooooo wonderful. 

We hope that after she stops these medicines after 3-4 months that she will continue to eat.  It is our prayer that this will jump starts her eating and that no more medical interventions will be necessary.  We will want to rule out any GI problems that have contributed to her problems.  I suspect nausea from her HIV meds are at least partially to blame for her lack of desire to eat.  There is always the possibility that she will stop eating after she is off these medicines.  But for today we are just happy to see her eat.

I don’t know for sure that amount of weight she has put on yet, but we are seeing and feeling visible differences.  Her face looks fuller.  She has a little tummy now.  She feels heavier and more solid.  Our doctor would like her to put on about 5 pounds.  We will see if we get there, but things are definitely looking up for our food issues.  We would really like to help her overcome this obstacle in her life.  We will see if we have turned the corner for good.

Life Before Meds and Us

27 Jul

Since coming home with our  precious child, I have often thought of a few questions.  What if there were no HIV meds?  What if Ethiopia did not get aid or help with HIV medications?  What if our daughter was not given HIV drugs starting at age one?  Would she have been alive at age two for us to adopt?

In May, Jen posted about HIV stages.  When I read about the stages, I thought…I wonder what our daughter’s stage was before she started on medications.  Well, I recently found a document from the WWO-AFO Worldwide Orphan Foundation  -Ethiopia that notated about her HIV stage.  Dr. Sophia Mengistu, the clinic’s doctor, noted that before starting medication our daughter was  diagnosed with the  HIV virus, a severe immunosuppression(CD4 percentage 9),WHO Pediatric Stage 3 with moderate malnutrition (under wt and stunted with BMI<3). 

We knew our daughter could not have been doing well before medication.  Her little body still shows signs of being affected by the HIV virus prior to medication. 
So what was Stage 3 life like for her???

We were given a painful glimpse into her past through two photographs.  An AWAA family traveled in Dec. 2008 and took pictures of children at the Kidcare Orphanage (They now don’t allow this.)  Anyway, I looked through this family’s online photo album and saw two pictures of our daughter just after she had turned one (Dec 08 was the same month she started her HIV meds).  She was sleeping in a crib and looked horrible.  Her face is sunken in, and she was tiny and sickly looking.  To be honest, she looks dead in the pictures.  I wept when I saw her photo.  She was so little, so young, so sick, and so alone.  I wept for our daughter painful past but also wept for HIV orphans still waiting for a home. 

We saw what Pediatric Stage 3 looked like for our daughter.  Life before medication didn’t look like any life at all.  From the looks of her one year old photo, she would not have made it to her second birthday and her adoption if it weren’t for HIV medications.  I praise God for the Worldwide Orphan Foundation and other organizations that help Ethiopia care for its HIV population.  I praise God for getting our daughter care so that she could live and be adopted into our home.

You have probably heard of the Lazarus Effect , where there is a huge difference once a person starts on HIV medication.  Well, we have seen it first hand.   From her Stage 3 photo to now is amazing.   Once lifeless in a crib to our home where she loves to read books, feed her dolls, play with balls, be tickled, dance to music,  play with  jewelry, and especially loves giving kisses and hugs to her family. 
What a difference medicine can make! 
What a difference a home can make!
What a blessing!

Taking Liquid Medications- oral aversion?

9 Jul

Joy Despite Difficulties and Taking Liquid Medications – our rough start were about some of the challenges we have or are facing.  Today, I will write about another challenge we are trying to overcome.

When we were in Ethiopia bringing our daughter home,  the nannies had told us that it took a lot of patience to feed our daughter (age 2).  They said she wanted to do anything else but eat or drink her bottle.  We found out real soon how true of a statement that was. She would let us feed her only a few bites of baby food and would only drink about 2 oz of formula at a feeding.  Basically she refused to eat any table food and didn’t drink enough formula.
 
At our first appointment we were told that our daughter had an oral aversion to liquids and foods probably caused from taking her liquid HIV medicines and being focused to take these liquids she did not like.  She was also still in a baby room at 2 because she did not walk or talk so she had not been introduced to foods other than baby food.  A late introduction to solids can also cause or lead to an oral aversion.  The way I understand an oral aversion is basically a sensory issue related to eating and drinking.

So what do you do to help a child get over an oral aversion?

This is where I really don’t have all the answers.  Our daughter is currently a lot better, but we still have a lot of issues with food to work through.  She does put things in her mouth now but won’t always chew and swallow food.  Children with sensory issues also often gag and throw up food, which our daughter also does.  She has over time learned to drink liquids and that is the main way we get calories in her. (I will post more about this later.) 

We are currently working with our physical therapist and speech pathologist to help with her eating issues.  One of the things we have done is used tubing called Thera-tubing.  It is basically plastic tubes of different colors and strengthens that she is supposed to chew on.  They also had us use a tooth-brush and brushed around the outside of her mouth.  They say it helps wake up her muscles and desensitize her mouth.  We have special spoons and try different flavoring on her foods to see if she will like something. 

They say children with sensory issues often like extreme flavors.  The key is finding what flavors she prefers.  The only thing we can tell is that she doesn’t really like sweet things.  She gags on things like cookies, chocolate, ice cream , and donuts.  The main thing she will eat are little veggies, and she seems to prefer salt.  She will suck on a cracker to get the salt off but then spits it out. 

We have also had to let her just play with her food.  That is basically what she did with food for her first few months.  She would break it up, mash it, and (unfortunately for us) threw it.  Her favorite “food therapy” was playing with pudding on a cookie sheet.   She had to get more comfortable with food before she would put it in her mouth.

I really don’t know what else to say about oral aversion.  To be honest all this sensory stuff doesn’t fully make sense to me.  There have been days when I thought…”How will this help?”  But I have followed all their suggestions.   And now after six months home she is getting better, not great but better.  I think over time she will continue to improve, but this problem has been slow one to overcome.  

So did the HIV medications cause her oral aversion? 

Who Knows?  What I do know is that our daughter now has a mommy and a daddy (and a sister and brother) to help her tackle all her problems brought on by her HIV and/or orphanage life.

Taking Liquid Medications- our rough start

21 Jun

When we researched about HIV adoptions, we heard over and over…children with HIV are normal kids, they just take medicine and this is so true!  But…we thought medicine… that is no big deal.  Our oldest daughter has always been great about taking medicine.  She kind of likes medicine.  So we did not think taking or giving medicine would be any big deal at all. Plus our daughter with HIV had been taking the medicine for over a year so she would have to be used to it.  Right???

Well, the area of taking medicine was our major problem the first few months home with our daughter.  We have totally worked through all of our problems now.   So by sharing about our struggles, I don’t want to scare anyone away from a HIV adoption.   Think about it… if a child is struggling taking meds while living in an orphanage, they need a family who loves them and helps them work through their medicine issues.   Our experience should all the more encourage people to take the risk or leap of faith for a precious child.  They may need a family to help them blossom or even to survive.

Anyway, when we picked up our daughter at our agency’s transition home we got all her medication and that night sat her down, measured out the medicine and tried to give them to her.  She would not open her mouth.  Her lips were closed tight.  We eventually had to pry her mouth open to give her meds but she spit or spewed out anything we got in. 

It wasn’t a pleasant thing to do your first night with her new daughter.  It was awful and heartbreaking.  I hate to think back about it.  SO the next day we went back to the transition home and talked with the doctor and nurse.  They said.. “Oh yes! she does not like to take her medicine, she tries to spit them out.”  They showed us how they gave her the medicine and told us she must take it.  They told us that she was just “testing” us.

So the rest of our trip we struggled with medication.  Sometimes we would get it down, but then she would throw it up.  She would scream, cry, and fling her body around to keep from taking these meds.   To be very honest it was sooooo stressful.  We felt unprepared for this.  No one had mentioned that our daughter might refuse her medications.  We felt a little panicky.  We kept think…they are normal kids they just take medicine…what?…taking the medicine is the big thing.

Once we got home we called our PID doctor.  They gave us a few suggestions to try until our appointment.  We tried giving her honey before the medicine, giving her chocolate, putting chocolate syrup in the medicine.  We tried medicine spoons,  syringes, and something called a Medi Bottle (a bottle with a syringe)  Nothing worked.    We could never get all the medicine down.  Some days were better than others, but all in all it was awful.

We then asked our doctor’s office if we could put the medicine in a small amount of formula and give it in her bottle.  Like stop giving her meds like we did, but try to sneak them in.  They said that the medicines that she was on would work fine all mixed up in a bottle with formula.   They gave us the green light to try that.

So that is what we went to doing.  We put her medications in her morning and nighttime bottle.  The next problem to tackle was getting her to drink all the bottle.  It was about 3 oz total (20z of formula and 4ml of one medicine, 9mls of two other medicines).  Solome would not drink more than 2 oz at a time when we brought her home.  Our doctor suspects she developed an oral aversion due to her medications.  She was a little concerned that it might make her reject her formula (her main calorie intake), but we took the risk and started putting her meds in her bottles. 

We knew we could not continue to force her to take the meds.  We felt like she was bonding so well to us, but we all were being traumatized by the meds thing.  Solome for the most part would drink all her bottle, but sometimes at night she would not.  This made our doctor concerned because if children don’t take their medications properly they can build up a resistence to the medication.  At one point our doctor said that we should take our daughter off the medicine to help her work through her oral aversion, but we were nervous about doing that so we kept at it and worked through it. It took us about four months to work through all the problems, but we finally have (for now?).  For us sitting with a child and trying to get them to drink a bottle w/meds was a lot better than trying to force them down. 

Thinking back about our medication problems reminds me how stressful it was.  You feel like you have failed as a parent because you can’t get their life saving medicine into your precious child.  I thank and praise God that He gave us the grace and strength to make it through this problem.  Now giving her medicines isn’t a big deal at all now.  “She is just a normal kids who just takes medicine.”  I will post more later about how we are continuing to work through her problem of oral aversion that may have been brought on by taking liquid meds.  

I will close by saying that our daughter is a HUGE blessing and is our little sweetheart.   We can’t imagine not having her in our family.

The Lazarus Effect Film

24 May

Watch this film about the amazing transformation AIDS patients experience with proper medication. 

http://www.youtube.com/joinred#p/a/u/0/QqacszjHocM

HIV Stages, AIDS Defining Conditions and the Lazurus Effect

19 May

People may not be aware that the World Health Organization stages HIV infection in individuals. A similar concept which people are more familiar with would be cancer staging. Staging is a sort of “how bad is it” measuring stick for HIV infection.

Children with HIV have their own staging system as well. 

Some people mistakenly believe that a person who is HIV+ automatically has AIDS. The truth is those terms define two different conditions.

A person with HIV can be healthy with no detectable signs of HIV infection but they will always be HIV positive. A person can live many years with the HIV virus without developing AIDS.

AIDS is the most serious stage of HIV infection. It results from the destruction of the infected person’s immune system. 

There are infections that tend to be common with more advanced stages of HIV infection. These are called Opportunistic Infections (or OIs for short) because they tend to develop once the immune system has been compromised by the HIV virus.

According to the US CDC definition, a person has AIDS if they are infected with HIV and present with one of the following: A CD4+ T-cell count below 200 cells/µl (or a CD4+ T-cell percentage of total lymphocytes of less than 14%) OR have one or more of the following defining illnesses. (also called Opportunistic Infections)

For now, once a person is diagnosed with the AIDS label it is a permanent one. Though, a person doesn’t have to stay permanently in that sick state. There is something termed the Lazarus Effect. It is used to describe the remarkable improvement seen in AIDS sufferers once they begin treatment.

Many parents who have adopted HIV positive children will testify to the amazing changes their children underwent through proper medical treatment, with adequate nutrition, and in the care of loving parents. Children who were on the brink of death can bounce back and the levels of HIV in their bodies can become undetectable with medication. (Undetectable means that the amount of HIV virus present in the body is so low that medical tests cannot detect the virus. This doesn’t mean a person is cured of HIV; trace amounts will always remain in the system, but, when controlled properly with medication, the virus cannot inflict damage upon the immune system)

Our Child’s Daily Meds

8 May

Taking medication is one of the things I want to write more about later.  In the meantime here is a glance of what our daughter’s meds look like. 

Our daughter takes 3 liquid medications twice a day.  She takes 9 ml of Viramune, 4 ml of Epivir, and 9 ml of Zidovudine (generic for Retrovir).   She started taking these medications at 12 months of age when she was in an Ethiopian Orphanage.  Our U.S. doctor has kept her on these medications because they are working great.  Her HIV levels are undetectable.  Our doctor says these liquid HIV medications are prescribed the most because they are a little better tasting than others.

On our insurance plan the two name brands are $35 each and the generic is $15 for a total of $85 a month.  Some states give help with HIV medications through the Ryan White Program.  Each state’s program is different.  In our state, the program helps with lab work, doctor’s visits, and medications for families who qualify based on their income.

At first, $85 sounded like a lot per month.  Can we do that?  Then I remembered that’s around what we spend on cell phones per month.  It’s all a matter of perspective.  It’s all a matter of priorities.  If need be, we can live without cell phones (and a lot of other secondary things).  Our daughter can’t live without meds.