Boise follow up- long post
We just got through at St. Lukes and our Gastroenterology visits. Finally, a productive visit! Between Spencer and myself, we were so fed up I decided to do something I have never done before. When we got in there, I told him how tired we were, Spencer especially, of doctors just guessing at the problems, throwing another drug at us in hopes things improve but they never do. I told him of Spencer's plan to quit all his meds three weeks ago and show up sick to this appointment. I wasn't totally in favor of this plan but supported Spence nonetheless. I flat out said, "We need you to listen to us and don't feed us a line of excuses or maybes. Don't just send us away with another pill to swallow." Once he started wrapping up the appointment and re-capping the plan, I said, "Please, please do not call me with results and say, everything's normal and leave it at that. Just because a lab deems things 'normal' does not mean all the symptoms magically disappear. Call me with step 2, then step 3..." He agreed that he would communicate better.
So, here's the run down. Spencer is sick. He has so many issues going on that once again, have been misdiagnosed or not diagnosed at all! I wanted to punch someone! He has this ongoing throat issue with loss of gag reflex, now this feeling of a fullness and he is drowning in mucus. He has always been treated for reflux but that is not the issue at all, at least not the issue affecting his throat. He believes that Spencer has a cranial nerve problem that interferes with the mechanics of his throat and is preventing him from swallowing correctly so mucus keeps building up until he can hardly breathe. He thinks he has apnea because Spencer describes waking up every night gasping for air. He thinks all of this is being complicated by an insufficiency in Vitamin E which helps with nerve function.
As for the GI stuff, nausea, diarrhea 6 times a day, pain etc, the pancreas is still struggling and it could also be that his whole system is inflammed but due to an overgrowth of bad bacteria because his immune system is so weak. He said he is pretty sure he doesn't have colitis or crohns. Again, the Vitamin deficiencies could be causing some of this. Truthfully, he doesn't know yet. We did some stool studies to test for a myriad of things and we will see what that shows in a couple of weeks. At that point, he may scope Spencer.
In the meantime, he is scheduling a sleep study to be done in Boise and an appointment with an Ear Nose Throat doc there as well as a Neurologist to work with our doc in Seattle. That will be coming up in a just a few short weeks.
Sam was the biggest surprise of all. He most likely has C-Difficile! If you've been following us for any length of time, you might remember Sam's health ordeal 3 years ago when he had an intesception of his intestine. Right after that surgery, he got C-diff. A horrible, horrible intestinal bacteria that lasts forever! It was months, more than 6 before he started feeling better. It is apparently highly contagious. I showed Dr. Thompson Sam's colonoscopy pictures and he said, "Sam has C-diff." He was tested for that in April, it was negative and he hasn't had any of the symptoms like he did in the hospital. He said that they are seeing antibiotic resistent C-diff that becomes chronic! That explains why Sam has felt like, well, crap for 3 years. Before we start him on the $1500 a month medicine to treat it, he also had to donate some stool for a host of studies to rule out other things. And again, we have possible Vitamin deficiency. The good news for Sam is that he gained 15 lbs in one year!!! He is finally in the 5th percentile! He also grew 3"! Amazing!
Shelbie is showing signs of a struggling pancreas again! Vitamin deficiencies...again!
I feel good about this visit. I feel like he really listened to us and we are headed in a good direction. The bottom line is that these kids are plagued with neurological problems to which there is no cure, no relief. That makes my heart break. I was terrified when he said to Shelbie, "I am so glad to see that you are hanging in there. Last year, I felt like you were deteriorating so fast, I didn't think you would be around much longer. It seems you have rallied some." My heart just sunk. I know it was a good thing, is a good thing but scary too.
Aside from this mundane report, it was psychologically, an interesting few days. I will post about this dysFUNction later. I'm beat. We head to Canada bright and early tomorrow.
So, here's the run down. Spencer is sick. He has so many issues going on that once again, have been misdiagnosed or not diagnosed at all! I wanted to punch someone! He has this ongoing throat issue with loss of gag reflex, now this feeling of a fullness and he is drowning in mucus. He has always been treated for reflux but that is not the issue at all, at least not the issue affecting his throat. He believes that Spencer has a cranial nerve problem that interferes with the mechanics of his throat and is preventing him from swallowing correctly so mucus keeps building up until he can hardly breathe. He thinks he has apnea because Spencer describes waking up every night gasping for air. He thinks all of this is being complicated by an insufficiency in Vitamin E which helps with nerve function.
As for the GI stuff, nausea, diarrhea 6 times a day, pain etc, the pancreas is still struggling and it could also be that his whole system is inflammed but due to an overgrowth of bad bacteria because his immune system is so weak. He said he is pretty sure he doesn't have colitis or crohns. Again, the Vitamin deficiencies could be causing some of this. Truthfully, he doesn't know yet. We did some stool studies to test for a myriad of things and we will see what that shows in a couple of weeks. At that point, he may scope Spencer.
In the meantime, he is scheduling a sleep study to be done in Boise and an appointment with an Ear Nose Throat doc there as well as a Neurologist to work with our doc in Seattle. That will be coming up in a just a few short weeks.
Sam was the biggest surprise of all. He most likely has C-Difficile! If you've been following us for any length of time, you might remember Sam's health ordeal 3 years ago when he had an intesception of his intestine. Right after that surgery, he got C-diff. A horrible, horrible intestinal bacteria that lasts forever! It was months, more than 6 before he started feeling better. It is apparently highly contagious. I showed Dr. Thompson Sam's colonoscopy pictures and he said, "Sam has C-diff." He was tested for that in April, it was negative and he hasn't had any of the symptoms like he did in the hospital. He said that they are seeing antibiotic resistent C-diff that becomes chronic! That explains why Sam has felt like, well, crap for 3 years. Before we start him on the $1500 a month medicine to treat it, he also had to donate some stool for a host of studies to rule out other things. And again, we have possible Vitamin deficiency. The good news for Sam is that he gained 15 lbs in one year!!! He is finally in the 5th percentile! He also grew 3"! Amazing!
Shelbie is showing signs of a struggling pancreas again! Vitamin deficiencies...again!
I feel good about this visit. I feel like he really listened to us and we are headed in a good direction. The bottom line is that these kids are plagued with neurological problems to which there is no cure, no relief. That makes my heart break. I was terrified when he said to Shelbie, "I am so glad to see that you are hanging in there. Last year, I felt like you were deteriorating so fast, I didn't think you would be around much longer. It seems you have rallied some." My heart just sunk. I know it was a good thing, is a good thing but scary too.
Aside from this mundane report, it was psychologically, an interesting few days. I will post about this dysFUNction later. I'm beat. We head to Canada bright and early tomorrow.
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