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No Tears – A Mother of a Toddler with XLA Shares Her Story

By Carolina Rubiano

Our Story
My son, Alejandro, is three years old. He loves cars and playing with his older sister and friends at school. Two years ago he started having severe and recurring ear infections, but we all thought ear infections were normal for kids his age.

After multiple visits to the ear specialist and scheduling a surgery to implant ear tubes, I had a strong “mother feeling.” I went back to visit my pediatrician who ordered an extra couple of blood tests, and the test results showed Alejandro had very low levels of immunoglobulin. The next thing I knew, my pediatrician had arranged him an appointment with a great immunologist. After we met her, my son was diagnosed with X-Linked Agammaglobulinemia (XLA), thus requiring intravenous immunoglobulin therapy (IVIG), also known as infusions, every four weeks.

Coping

When I heard his diagnosis, I was devastated and worried that my son was not going to have a “happy childhood,” even though I knew he had a wonderful immunologist and he could not be in better hands. The first thing I did was to get in contact with other parents who had gone through similar experiences and kindly agreed to speak with me. Hearing their experiences and advice really helped me and my family.

Another great resource has been the Immune Deficiency Foundation (IDF), as they have great educational material that helped me better understand my son’s condition.

I have received many suggestions during this challenging time of my life, but these words helped me the most:

  • One mom told me, “Make infusion day something special for the family.” She explained to me how her son is now grown and how much she actually misses that special time with her son.
  • A co-worker said, “People worry about what can happen and do not enjoy what it is happening now.”
  • And finally, our immunologist explained, “I will keep your child healthy so all you need to worry about is keeping him happy.”

And that last bit of advice has been my number one priority. I try to make every infusion as easy as possible for him. My goal is no tears when starting the IV!


Alejandro and his older sister, Sara

Here are some tips that have worked for my family:

  • We have met a couple of nurses who we feel very comfortable with. We always ask about their schedule for the next infusion and plan it with them.
  • We hydrate him well the day before the infusion so his veins are as big as possible to start the IV. We buy his favorite juice and send plenty of it to the daycare. We also send him a sippy cup, so he can be drinking fluid throughout the day.
  • We give him Benadryl (as suggested by the specialist) to help him calm down to start the IV.
  • We make his favorite breakfast the day of the infusions, and while in the hospital, we get his favorite food for lunch.
  • We put numbing cream one hour before the infusion on two different areas (these areas are suggested by the nurse). We tell him that by using the cream the poke will not hurt.
  • We use press and seal wrap to keep the cream in place for a whole hour and avoid the discomfort that regular medical tape gives him when pulling it off.
  • We explain to him what is going to happen. We tell him that we will be there with him.
  • We hide one of his favorite snacks in the room and give it to him as soon as the nurse pokes him.
  • After the infusion, we tell him how brave he was and how proud we feel.

Ever since we have been following these steps, our son hardly ever cries. We have gone through periods of five months with no tears!

I hope that some of these tips help other families and children. It has been more than a year since my son was diagnosed. I can say that the IVIG treatment really works, and my son is a very happy and healthy kid. Just as I want him!

Thank you to Carolina for sharing your story! For more information about IDF, visit www.primaryimmune.org.

IDF recommends that patients and families consult with their healthcare providers before implementing any changes or additions to healthcare routines.

 

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Comments

This moved me to tears. My son is 17 months old and has XLA. I have struggled to make infusions less stressful for everyone. It's been an uphill battle that we are slowly learning to get a handle of. It makes me feel so good to hear I'm not alone in these struggles. Thank you for an extra little boost of motivation today!

Hi Carolina, Thank for sharing your story! Mine is very similar, I have 2 boys whom both have XLA! With my first son I already had a hunch and was on the look out for signs because one of my brothers has XLA as well! I however wasn't prepared to hear that my 2nd son had XLA as well! I have 2 brothers and only the 1 has XLA so I suppose my hopes were high with expecting my 2nd son to not be affected by XLA! We too make treatment days "special" days! My boys get SCIG treatments every 10 days at home, so it makes it a little easier on them! We let them do things they don't normally get to do on a daily or weekly basis! Thank you again for sharing your story Kim Shadrock