| |
Discussion Topic: 17 Month Boy - Searching for Answers
|
|
 |
01-11-2006 @ 12:43 PM
|
|
|
|
|
Hello. My story sounds like many of yours, with recurring sinus infections, and many other illnesses, which seem to make him much more sick than other children. He is my third child, and we know of no one else in the family with any PI. Of course, his father is not involved, so it could very well be in his family. He didn't think anyone had any problems similar to Blaise's, but he wasn't sure.
I was up with him a few nights ago, comforting his cough, and a commercial came on for this site. It seemed to be saying what I had been thinking about my son. After reading many of the posts, it sounds as though I should take my son back to his dr. I could go on and on with a list of problems he has had, as I have most of them documented, but I will just say that he has been at the dr., hospital or both at least once (sometimes 2-3 times) a month since he was 3 months old and developed pneumonia from a seemingly innocent cold. Since then, he has had a variety of illnesses, ranging from rotavirus, which hospitalized him, to ear infections, and now the recurrent sinus infection. The ear infections seemed to have stopped, he hasn't had one in a few months, but it didn't go away until we tried the third antibiotic.
When he was hospitalized with rotavirus for dehydration and monitoring, it was at a wonderful children's hospital. While I was there, I insisted on speaking to the head pediatrician about how sick he has been. I didn't know what was wrong, but I just knew something wasn't right. It seemed to me to be his immune system not being able to fight infections as well as other children. He came in and told me that Blaise would have to have ONE infection repeatedly in order to be tested for any immune system problems. He said he would probably be much better after he turned one, as his immune system should be stronger. He said there were so many tests, that they would need something to go off of in order to be more specific.
Now, it is the recurrent upper-respiratory problems, croup and sinus infections, and I believe it warrants testing. He was on Zyrtec for his "horrible allergies", which his dr. says is causing these sinus infections. However, we had two in a row after that diagnosis. He was sick in November, and back again two weeks after finishing the antibiotic. This time, they switched his allergy medicine, and put him back on antibiotics. Before he even finished the antibiotics, he was coughing again. This cough isn't terrible, but it seems to be the way they all start. He began coughing on Friday, and he wasn't finished with his antibiotic until Sunday.
I want to take this into my dr., but I want to be certain I am not barking up the wrong tree. I truly feel something is wrong, but a friend of mine told me I just worry too much...My other two are older, and she said I didn't worry about them nearly as much...of course, they weren't as sick. She said some kids are just more sickly than others...but I am worried. He started out in the 90+ percentile on his height and weight, and now we're barely in the 50th percentile. He lost some weight being sick, and now he's barely gaining. I know it's still in the norm, but he just doesn't seem to be growing like my other two children, and I just feel as though something is wrong. I know kids stop and start on their growth, but I am concerned that this has something to do with his illnesses. Maybe if I can catch it now, he can catch back up to the other kids? Am I crazy and overanalyzing? I mean, he isn't deathly ill, but he's constantly ill...Is this where I should start?
Any advice or comments would be greatly appreciated.
|
| |
01-25-2006 @ 6:04 PM
|
|
|
|
|
My heart goes out to you. I have two sons with PI. My first son went through a heap of tests only to find nothing. He went thru another year of several illnesses and hospital visits. A year later my second baby started getting sick and having the same symptons, the dr's then did further testing and discovered they both had PI. They have Bruton's (the genetic one that affects only boys) yet no one else in my family suffer from it. It was a complete surprise but not necessarily to me. As a mom we know when our children aren't quite right. All the well intentioned people in our lives are great but when you know something is wrong, go with your feelings. At one point in our lives, I thought my son was 'faking' a limp. I knew something was wrong but tests/xrays revealed nothing. I felt terrible when a couple days later he landed in hospital with a bone infection in his foot and had to stay there for 2 weeks. Go with your gutt feeling, you know in your heart. Don't let any outside influences get to you. You will only live to regret it. You are not paranoid by any means. Your son is obviously sick, from what is what needs to be established. I was also told by dr's that Rueben would out-grow this. You know your son more than anyone else in this world. Push the dr's to do further testing. It's as simple as a blood test which would reveal if anything is wrong. I truly hope that you get to the bottom of this. If your son does have PI, please note that it is actually quite manageable. My boys have the monthly blood infusions and they are thriving. All the best to you and your family and good luck. God Bless, Louise
|
| |
|
02-06-2006 @ 3:26 PM
|
|
|
|
|
Thank you very much for your response. I was afraid my message had been lost in the bunch. It seems to take forever for the moderators to get them posted.
I am sorry to hear about your situation, but I am relieved to know it is managable, and you were able to find out what was going on. You said your first son went through tests with no answers, and it wasn't until your second son was sick that they found out what was going on. What tests did they do the second time that they didn't do the first?
We just went through the sweat test, which came back fine, as I expected. The dr. sent a sheet with us for the blood work, and I took it upon myself to check off the IG subclasses, as well. So, we're waiting to hear about those tests.
I went to an asthma and allergy specialist, who also specializes in immunology. However, I am not convinced he's the right dr. It was apparent he didn't deal with toddlers, and he was not very friendly. The minute I mentioned my concerns about an immune deficiency, he told me they were rare, and I would be seeing such a sick little boy that he would have puss coming from his ears and nose. He said, if this is what it was, he would be living at the children's hospital and waiting on a bone marrow transplant. So, needless to say, he wasn't very willing to do the tests, but I insisted.
I guess it's a waiting game now...but I would be interested to know if I am missing any other tests, such as the ones where your dr. eventually found what was going on with your sons.
Best of luck, and I hope to hear back from you soon! God bless you as well!
If it would be faster, you may contact me on my home email address - hdiesen3@hotmail.
Heather and Blaise
|
|
