Tuesday, June 6, 2017

"I Don't Know Why I Ordered That Test."- Lung Dr



You know that feeling: that feeling way down deep in the pit of your stomach that a mama gets about her child? Well I had it- for a long time. "Something isn't right," I repeatedly told my husband, "No other kid I have ever seen coughs like he does!" I had no idea it would have ever have been this- no not in a million years! Keep reading...

That cough. Really! It was terrible. You know the dry, barking cough your kid gets when "the croup" is going around, that was the cough. The problem with that cough is that my son, Ian, has had it on and off multiple times a year for the last 3 years, or so it felt. After we got to doing our research and looking back on his medical records, this nasty little cough has been with him on and off since he was 6 months old! I knew it, I just KNEW something wasn't right.

In March of this year I finally said enough is enough. After an in office breathing test revealed Ian's breathing pattern indicated he had a lung obstruction, we were referred to a lung doctor. While we waited for this appointment however, things took a turn for the worse. Two ER visits in one weekend, one for not being able to breathe and another for vomiting blood, proved to me that things were getting worse, much worse. As we waited for the lung doctor appointment, we were referred to a gastroenterologist to address Ian's vomiting blood. They took some tests and determined blood was not going all the way through, but was localized to the upper GI tract. Some acid reflux medications, instructions to change diet and add a lot more fiber were the only answers we got on that particular day. "We want to wait about scheduling the EGD (a test to inspect the esophagus and stomach) until we know if the lung doctor is going to be doing any similar tests. That way if he does, we will only have to put Ian to sleep once. It could be the coughing causing the reflux, or the reflux causing the coughing, we really do not know at this point." I agreed, after all some movement forward is better than none at all. So we waited.

Later that same week we had the appointment with the lung doctor. Sure enough, he wanted to do a bronchoscopy (a test where a tube is ran down into the airway to look for problems). I told him that Ian had tried nebulizers (which didn't work) and he was on an inhaler (that helped but no where near was solving the problem). He was on nasal sprays (they thought it was a post nasal drip problem) which helped  but again, no where near solved the problem. While at that appointment the doctor requests that I allow him to do some lab work. Eager to find out what was wrong, I told him to take any test he wanted- I just wanted my baby better.

In amongst all of this going on, Ian gets a very large "bite" on his leg. In a matter of three days it was swollen to the size of a softball, not a baseball, a softball and was very red all around his leg. This required a doctor visit for it to be drained and a very strong antibiotic was prescribed. In a matter of 4 days, Ian's cough had almost 100 percent disappeared!! Was it the reflux medications or the antibiotic? Honestly we never considered it was the antibiotic solving it but after 3 days of being off of the antibiotic, his cough returned. It HAD to have been the antibiotic helping him! I called the doctor and he prescribed him ANOTHER antibiotic plus ANOTHER antibiotic! 3 types of antibiotic's for 24 days!!  While waiting for the bronschoscopy date to arrive my cell phone rings. "Ma'am we know what is wrong with your son, he has NO antibodies." Wait, what? "Ma'am your son basically has no immune system. There is nothing there to help your son fight off germs." The great big long word for this disorder is agammaglobulinemia. Fast forward from this moment.....


Ian had his bronchoscopy. "Mom I want this test. I am so tired of coughing all the time," he said before he went back for the procedure. While we were literally standing in this room waiting on this procedure the lung doctor says, "I have NO idea what caused me to order that test (referring to the antibody tests). It is such a rare disorder that we really don't test for it that much anymore!" I know what made him order that test, GOD!


Ian's coughing STOPPED, not just calmed down, STOPPED! For the first time in over 3 years, Ian was sleeping ALL NIGHT LONG without any coughing spells to wake him while he vomited because he couldn't stop coughing. This is the face of the morning he first slept all night long.

 And then fast forward some more, today (June 5th, 2017) Ian received his first IVIC infusion to give him the antibodies he doesn't make on his own.
 The staff were AMAZING! He played games, watched television, they brought him 3 toys and just gave them to him, and he ate snacks all morning long. We arrived at the hospital at 7:30am and at 11:00am we were on our way home.
He didn't even cry when he got his 4 needle sticks! But taking the tape off, well we almost had a tear.... lol.

So far we know that Ian does for sure have agammaglobulinemia. He will receive from this point on subcutaneous infusions (which means under the skin) every week for the rest of his life unless a cure is found. Thanks to amazing men and women who are plasma donors, Ian can be given the immunoglobulins he needs for his antibodies. What we do not know yet is about the other side of his condition.

The doctor said not only does Ian not have any antibodies but his "T" cells are very very low. The concern is that he does have those cells but that they do not work correctly. This is a condition called Severe Combined Immune Disorder or SCID. The doctor says that he has no words for why Ian is turning 6 on Wednesday of this week and why he hasn't had a major hospitalization or died. "Most kids with his condition either have a severe life threatening infection where this gets discovered or they are dead before one year of age,"- immunization doctor.

So this is where we are. We go back on Tuesday of next week for his first subcutaneous injection and after that I will give them to him at home. God has protected my little boy for YEARS when I never knew he was so sick with this disorder. I will continue to post updates about Ian's progress on the blog so keep following us if this peaks your interest.

In the mean time, here are things you can do if you want to help:
-pray for Ian and all those who have this disorder that they will find a cure;
- become a plasma donor (search for plasma donors near me and see what it brings up- you can even get PAID to donate!);
-become familiar with Primary immunity disorders by visiting the Immune Deficiency Foundation.

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