2013-11-26 Sarah's Second Infusion

I did not have a chance to post after Sarah's second infusion this week as we left town the next morning and had a ton to do to get ready to leave. Sarah's belly was really sore for quite a while after her first infusion (like close to a week and a half), and she was thinking "I just am feeling better and now have to do this again?"! But, we gave her Benadryl to prevent the itching, and I put emla cream on her to try and ease the pain of the stick. The home health nurse came to watch me set the whole thing up and start the infusion (because this was her last visit).

This is the pump 

 

 

 

This infusion took about an hour and a half again, and she tolerated it really well.  She even got up and walked around some while it was happening.

 

 

 

 

By that, evening, she was even running around.  And even though her stomach is still a little sore to the touch, she is doing much better than after the last one.

 

And, she finally has color back in her face.  I don't think she has not been pale for years!  And you can just tell being around her that she feels better and is more perky.  I am so thankful this seems to be working already!

 

Her next infusion will probably be Wednesday, December 11.  Thank you for your continued prayers and for following Sarah's story.





2013-11-13 The First Infusion

After doing research, we chose to do the subQ Infusion instead of IVIG. It is every other week instead of once a month. But...

- The infusions are shorter (1 1/2 hours at a time as opposed to 4 hours at a time).

- She can move around while it is being done instead of having to be monitored.

- There are less chances of side effects.

- They do not have to find a vein every month for potentially the rest of her life.

- I can do the infusion myself instead of having it administered, so it can be on our timetable and in our home.

- With the IV, since it is once a month, sometimes people have a "crash" sometime around the 3 week mark and your next infusion isn't for another week and a half to 2 weeks.

So, last Wednesday, I got a box with all of the supplies and medication for 2 infusions. Wednesday afternoon, the home health nurse came to show me how to administer it. She set everything up and put the needle in the first infusion site. I did the second site.

She said some people pre-medicate with Benadryl and Tylenol, but she likes to see how they handle it without meds the first time. Within 60 seconds, she started complaining about it itching. So we gave her Benadryl, and after 25 minutes or so, she said it didn't itch anymore. Next time, we will pre-medicate her.

This picture is during the infusion.

The first time, the nurse had to take her vitals and make sure she tolerated it okay, which she did. After that one time, we won't have to do that. Her pump came with a bag that she can throw over her shoulder or hook around her waist, and she can go about whatever she wants to do. Obviously she can't go play a soccer game, but she is not confined to the couch or anything.

This picture was taken a couple of hours after the infusion.

I am told that after 2-3 infusions, her body should learn to absorb the medicine a lot faster and it shouldn't be as bad. She was really sore the rest of the week, though she didn't complain much. But she voluntarily stayed inside from recess and didn't participate in PE the next day, so I know she was hurting more than she let on. By the evening, the swelling was already down significantly.

Sarah's next infusion will be the Tuesday before Thanksgiving. The home health nurse will come out just to watch me get it set up and start the infusion to make sure I am good with it. That will be the last time she will come. Then we will be able to do it on our own schedule.

I am told we should start to see a difference after 2-3 infusions (so 4-6 weeks). However, they start at a certain dose because of her weight, but that doesn't mean that is HER therapeutic dose. So if it doesn't work, that doesn't mean it won't work (if that makes sense). They may have to up the dose. The pharmacist for the home health company also told me that she should only get one to two infections PER YEAR! I cannot even imagine what that would be like with her!

Making the Decision

Since the doctor had been trying to talk me into doing IVIG for almost 5 years, I knew that this chat was coming. A month ago, she told me that she thinks I should really REALLY consider trying it with Sarah. I had already done my research and the idea of doing this terrified me. She asked that I would let them start the process with the insurance company. She told me it would take weeks to get things approved through them and they would probably have to appeal it and everything.

At this point, I started praying for a sign that it was the right thing to do. The following week, Sarah was getting worse instead of better. So after a morning of a big dose of steroids and several breathing treatments, I took her into school late. As I was talking to the nurse, I found out that she had done this therapy when she was younger. Then I called the doctor's office to chat about what was going on with Sarah, and the doctor told me that the insurance company had approved the therapy for Sarah within 2 hours, and they approved it for 10 YEARS! So not even as a trial basis or anything. Then, my friend who used to be the IVIG coordinator for the office she worked at called me because we had been trying to get together to chat about this and it hadn't worked out. And then, I met a lady whose daughter had just the therapy 6 weeks prior. All of this happened within about 4 hours, so I would say that I got the sign that I needed that this was the right direction. We just know she cannot continue to go down the same path with illnesses that she has been. She is almost never well.

Sarah's Story

Sarah was born on Monday, March 27, 2006 after a quick induction (by a doctor who said she wanted the baby born before her office hours were over) because she was 11 days late and we decided she wasn't coming on her own. Around 3 1/2 months, she started having respiratory issues. Having gone down the same road with Zachary at almost the same age, we knew what was coming and did not want to have the same struggles. I went to the pediatrician (who was a different pediatrician than I had with Zachary) and explained my concerns. I was told that even though her lungs sounded "junky", babies do not get asthma, an we didn't need to worry about anything. Having dealt with asthma and multiple hospitalizations with Zachary when he was little, I took Sarah to the asthma and allergy doctor immediately. We got her started on a daily "maintenance inhaler" around 4 months. When she got RSV and pneumonia at 9 months, she did not end up hospitalized like Zachary, even though we thought she might. I attribute it to starting the asthma meds so early.

Also at 9 months, Sarah was diagnosed with failure to thrive. She was 8# 14oz at birthday, 15 pounds at 6 months, and 16 pounds at 9 months. She had gone from being big down to the 5th percentile. My boys and my husband have celiac disease, so the assumption was that she did too. We did not remove gluten from her diet, but she did not get a lot of it as we didn't usually have it in the house. (Where you might have fried chicken or rolls with dinner, we never did that because no one else could eat it.) The day of her 9 month checkup, we had her blood drawn for celiac disease, and I took her off gluten. The test came back negative, but it can be inaccurate under the age of 2 due to exposure, and probably more so in a case where she didn't get a lot anyway. After taking her off gluten, she grew like crazy. After gaining 1 pound in 3 months, the next 3, she gained 8!

Throughout all of this, we dealt with several cases of pneumonia, strep, other respiratory infections, fevers, etc. She was always sick. When she was 19 months, she ended up with pneumonia again, in spite of the fact that she had already been on antibiotics for respiratory "crud" for a couple of weeks. We changed antibiotics and keep waiting for her to turn a corner with breathing treatments and steroids. Be the middle of December, she had been fighting it for 2 months and was just getting worse and worse. We ended up in the ER, and it turned out she had become septic (the infection got into her blood) from it. She was on IV antibiotics (vancomycin and rocephin) and spent 6 days in the hospital (including her brother's 7th birthday). It turns out that the bacteria from the sepsis is usually related to a cardiac problem, so then we also had to spend time at the cardiologist and getting echos done and everything.

By January, she was doing better. Then she was sick most of February and into March. Mid-March, we went to Denver over spring break with a little girl who was "sort of" sick. By the second day, we ended up in urgent care and she had pneumonia again and her pulse ox was 90%. They let us go home because she looked "ok", but we had to take her back the next day to be rechecked. We thought she was doing better, but this time, her pulse ox was 87% and ended up dropping to 83%, even on oxygen. So my baby girl got to take her first ambulance ride that day to the hospital and was admitted in respiratory distress. She spent a few days in the hospital out there (including my then 5 year olds' birthday), and then we drove home.

Four days later, Sarah was sick again. Her limbs were blue and she was struggling again. We took her to the ER where they got her breathing under control, and diagnosed her with an ear infection. They also did some other tests, and the xray ended up looking like she might have a problem in her bowel. It was determined she didn't and they send us home on more meds. Then the next morning, she had diarrhea and was throwing up so much that I had changed her clothes 6 times in an hour. After calling the pediatrician, we went back to the ER. They did tests, and her liver was enlarged and she had rotavirus. Because of the celiac disease, it is even harder for her to get over it. So she spent another 6 days in the hospital (including her own 2nd birthday) hooked up to an IV.

While she was in the hospital, they drew her blood for an immune workup. Her IGG and IGA were "normal". The main thing that stood out was that 13 of the 14 strep pneumo titers did not even register. This would be the cause of all of the infections. We gave her an extra pneumonia shot, and talked about doing IVIG, but I wanted to try other things first. Two months after that, we discovered she had a chronic sinus infection in every sinus cavity, and we did 60 days of antibiotics to clear all of that up. After doing that, she actually had a streak where she was relatively well. She did get some illnesses, but it was nothing like the previous year had been. I was hoping maybe we had turned a corner.

Right before she turned 5, Sarah started getting illnesses again. In March of 2011, she had been running a fever for a week and then it finally broke. A day later, she woke up complaining that her legs were sore. I thought she maybe had a Charlie horse or something and wasn't too concerned. Basically I told her to eat a banana and get some potassium to she'd be okay. By 730 that evening, her fever had spike back up to 104.5 and she couldn't walk. If you even touched her legs, she would scream. I'd spent enough years working in the ER that it freaked me out a bit. So, we went to the ER. After many xrays and blood tests, they thought they saw a spot of something on her leg, but it would require a bone scan. They were worried enough that they sent us to the Children's Hospital Downtown, which is more equipped to handle stuff than the "branch" out South. By the time we got there and got her bloodwork back, we found out that her creatine kinase was extremely high. Creatine kinase being high can be a sign of muscle degeneration (non-specific) or kidney failure. Based on her age, her normal should have been less than 50. Her was almost 3,000!

They determined that the cause was not a kidney problem, so we waited on the results of her virus panel. In the meantime, she was hooked up to an IV and they were trying to "flush" her system and get her ck to come down. The virus panel came back positive for influenza B. Apparently, sometimes when the virus was leaving her body, it attacked her muscles. Then her blood culture came back positive again! This time, though, they determined it was because of a contaminant. She spent 5 days in the hospital for this (again was hospitalized on Zachary's birthday).

In the end of August 2011, Sarah spiked another serious fever and was diagnosed with mono. I am told that kindergarteners "don't get mono", or if they do, you don't even know it because it just presents as a cold and then they are fine. She ran fevers of 104-105 for 6 weeks, missed weeks of school, and also ended up with an abscess behind her tonsils. So that stunted her already compromised immune system even more.

At this point in time, she has had already had 4 extra pneumonia shots, and only 6 of her 14 strep pneumo titers are low. The doctor says that just because she has the correct "quantity" of IGG doesn't mean she has good "quality". Clearly it is not right that she runs a fever for a week, coughs for a month, goes through 2 rounds of antibiotics, is well for 4 days and then starts all over again.

Sarah is a trooper though. She doesn't let much get her down. After having pneumonia and coughing like crazy and running a fever all week, she still wanted to go play in her soccer game. I think she will be amazed at how good she will feel because she has never felt well!