Friday, April 12, 2013

The Rest of The Story So Far

This is my 8 year old son, Shade. He's always been a very happy and healthy boy despite being diagnosed with an Autism Spectrum Disorder. He loves video games, telling jokes, bowling, and swimming. His life drastically changed forever beginning on June 11, 2012.  I wrote about our first hospital stay in my previous post.  The doctors told us that since he hadn't had trauma to his belly and had no prior history of pancreatitis that it was probably just a one time thing and sent him home on June 16, 2012. He was back to his old self and completely fine until July 7, 2012. He complained of stomach pain and refused food and drink so we took him to Kosair's ER. They checked his levels and admitted him for pancreatitis again. They did an MRCP and came back with normal results. No food or drink and checked his Amylase and Lipase levels daily. His levels came down and he was released on July 12, 2012. The doctors were still hopeful that he would have no more issues, but put him on a low fat diet of 15 grams of fat a day or less. We had so many questions, but we never got any straight answers. When he went to the ER a third time on August 7, 2012, I got mad and began to demand answers and any further testing they could do to stop this cycle. It was taking it's toll on all of us, but especially on Shade. He screamed every time somebody came into the hospital room because he was afraid they would poke him with a needle. Getting the IV in every time was a nightmare requiring several adults to physically hold him down while he begged me to make them stop. I had to help hold him down every time. They started him on enzymes (Creon) on 8/11/2012 and they agreed to genetic testing and told us to keep him on the low fat diet. That was much harder than you would think with a child who's food choices were already self limited due to sensory issues as a result of his Autism. The doctors also finally agreed to an ERCP which was done on 8/22/2012. The doctor who performed it found no anatomical anomalies or blocked or narrowed ducts, but he did find lots of scarring and diagnosed my son with Idiopathic Chronic Pancreatitis. Soon after this, the results of his genetic testing came back and he has 2 CFTR mutations. His sweat test came back normal, but he was sent to a pulmonologist and diagnosed with Atypical Cystic Fibrosis. Now we knew what was causing the Chronic Pancreatitis, but still had no way to stop it from causing repeat acute attacks. He remained on the low fat diet and enzymes and did not have an attack in September and we were skeptical but thrilled. Then came October 11, 2012. Back to the ER with the same symptoms and the same course of treatment at the hospital. This time the doctors finally admitted that they were in over their heads and did not know what else to do for him. One of them actually told us that this is our life now and we just have to get used to it. He said that Shade would learn to tolerate the pain better as he got older. :( I was so discouraged. He was released on the 15th and life went back to our new normal for a while. I decided that I needed to be more proactive and started searching all over the internet for information and help. I found several groups on Facebook, but only one for children with pancreatitis. I felt so alone, but I found out some info and had a phone number to call to a doctor in Minnesota. I was hopeful for at least a consult, but here it is April 2013 and I am still waiting for insurance to decide. Since then he has been hospitalized in December and February and I fully expect him to have to go back towards the end of this month. It's almost like clockwork. We also had meetings with doctors in Cincinnati, but they don't believe he is a candidate for the TP-AIT at this time and want to just "wait and see". They don't like to do the surgery before puberty. I have conflicting information from paperwork from Minnesota though. They have studies proving that children under 10 recover quicker and have an overall better outcome than older children and adults. I know that his pancreas is becoming more and more damaged with each attack and possibly in between attacks. I feel like he is a ticking timebomb. We found out the results of his fecal elastase test from November (two hospitalizations ago) and he got a 99 which is severely pancreatic insufficient. I'm sure if the test was repeated, his number would be even lower now. I don't want his pancreas to become so damaged that we can't get enough islet cells for the transplant, but I don't want to jump into such a serious surgery either. Still, my gut tells me that he needs this. We even went to Cincinnati during his last attack and had him transferred so they could see him during an attack per their request. They accused him of being drug seeking and still want to "wait and see". I don't feel like that is the right approach, but I am just the mother after all. haha I would like to have another ERCP or even an EUS done to see how much damage he has now, but I have been playing phone tag with the Cincinnati GI for 3 weeks now. He hadn't had the results of the fecal elastase test before and even suggested that we might want to take Shade off of enzymes. His nurse told me to definitely keep him on the enzymes (DUH) and that they would call me back with answers to my questions. I have called them again and it has been a week and all I hear are crickets. Meanwhile, Minnesota is still negotiating with Shade's insurance and we are just waiting. Waiting and preparing for the next inevitable hospital stay. Shade is fine right now. He is happily playing and enjoying the last few days of his Spring Break, but I know how quickly that can change and I also know that if his pancreas continues to get damaged, he may end up in constant pain or worse. I'm scared to death and stuck waiting while the time bomb keeps on ticking. So, there is our long story so far. Sorry it's so long. I left out some details of course, but this is the important stuff.
This is my 8 year old son, Shade. He's always been a very happy and healthy boy despite being diagnosed with an Autism Spectrum Disorder. He loves video games, telling jokes, bowling, and swimming. His life drastically changed forever beginning on June 11, 2012. One day, he suddenly had no appetite, but was still playing and acting normal. We decided to take him to the doctor because he was complaining a little of stomach pain. We took him to the pediatrician who gave him a prescription for Zantac. On the way home, we bought him his favorite food in the world, McDonald's. He ate two french fries. We tried to give him the Zantac, and he threw up. This was probably due to his sensory issues, but either way, we were very concerned but figured he had a bug and decided to wait it out. He did not throw up anymore, but didn't eat the rest of the day and drank little. He slept through the night, but woke up the next day acting very lethargic and refused to eat or drink. We called the pediatrician again and they said to take him to the ER. In the local ER, they took blood and gave him IV fluids. They discovered that his amylase and lipase levels were very high. They also did a urine test, an ultrasound of his abdomen, gave him contrast and did a CT scan during which they found fluid around his spleen and diagnosed pancreatitis. They decided to transfer him to the closest children's hospital and realized that he had a fever not long before the transfer. He rode in an ambulance to Kosair Children's Hospital and after waiting for hours in their ER, was admitted in the early morning on June 13, 2012. He remained on IV fluids with no food or drink by mouth and his enzyme levels were checked daily. His numbers cane down gradually and he tolerated small amounts of food and drink. The doctors told us that since he hadn't had trauma to his belly and had no prior history of pancreatitis that it was probably just a one time thing and sent him home on June 16, 2012. He was back to his old self and completely fine until July 7, 2012. He complained of stomach pain and refused food and drink so we took him to Kosair's ER. They checked his levels and admitted him for pancreatitis again. They did an MRCP and came back with normal results. No food or drink and checked his Amylase and Lipase levels daily. His levels came down and he was released on July 12, 2012. The doctors were still hopeful that he would have no more issues, but put him on a low fat diet of 15 grams of fat a day or less. We had so many questions, but we never got any straight answers. When he went to the ER a third time on August 7, 2012, I got mad and began to demand answers and any further testing they could do to stop this cycle. It was taking it's toll on all of us, but especially on Shade. He screamed every time somebody came into the hospital room because he was afraid they would poke him with a needle. Getting the IV in every time was a nightmare requiring several adults to physically hold him down while he begged me to make them stop. I had to help hold him down every time. They started him on enzymes (Creon) on 8/11/2012 and they agreed to genetic testing and told us to keep him on the low fat diet. That was much harder than you would think with a child who's food choices were already self limited due to sensory issues as a result of his Autism. The doctors also finally agreed to an ERCP which was done on 8/22/2012. The doctor who performed it found no anatomical anomalies or blocked or narrowed ducts, but he did find lots of scarring and diagnosed my son with Idiopathic Chronic Pancreatitis. Soon after this, the results of his genetic testing came back and he has 2 CFTR mutations. His sweat test came back normal, but he was sent to a pulmonologist and diagnosed with Atypical Cystic Fibrosis. Now we knew what was causing the Chronic Pancreatitis, but still had no way to stop it from causing repeat acute attacks. He remained on the low fat diet and enzymes and did not have an attack in September and we were skeptical but thrilled. Then came October 11, 2012. Back to the ER with the same symptoms and the same course of treatment at the hospital. This time the doctors finally admitted that they were in over their heads and did not know what else to do for him. One of them actually told us that this is our life now and we just have to get used to it. He said that Shade would learn to tolerate the pain better as he got older. :( I was so discouraged. He was released on the 15th and life went back to our new normal for a while. I decided that I needed to be more proactive and started searching all over the internet for information and help. I found several groups on Facebook, but only one for children with pancreatitis. I felt so alone, but I found out some info and had a phone number to call to a doctor in Minnesota. I was hopeful for at least a consult, but here it is April 2013 and I am still waiting for insurance to decide. Since then he has been hospitalized in December and February and I fully expect him to have to go back towards the end of this month. It's almost like clockwork. We also had meetings with doctors in Cincinnati, but they don't believe he is a candidate for the TP-AIT at this time and want to just "wait and see". They don't like to do the surgery before puberty. I have conflicting information from paperwork from Minnesota though. They have studies proving that children under 10 recover quicker and have an overall better outcome than older children and adults. I know that his pancreas is becoming more and more damaged with each attack and possibly in between attacks. I feel like he is a ticking timebomb. We found out the results of his fecal elastase test from November (two hospitalizations ago) and he got a 99 which is severely pancreatic insufficient. I'm sure if the test was repeated, his number would be even lower now. I don't want his pancreas to become so damaged that we can't get enough islet cells for the transplant, but I don't want to jump into such a serious surgery either. Still, my gut tells me that he needs this. We even went to Cincinnati during his last attack and had him transferred so they could see him during an attack per their request. They accused him of being drug seeking and still want to "wait and see". I don't feel like that is the right approach, but I am just the mother after all. haha I would like to have another ERCP or even an EUS done to see how much damage he has now, but I have been playing phone tag with the Cincinnati GI for 3 weeks now. He hadn't had the results of the fecal elastase test before and even suggested that we might want to take Shade off of enzymes. His nurse told me to definitely keep him on the enzymes (DUH) and that they would call me back with answers to my questions. I have called them again and it has been a week and all I hear are crickets. Meanwhile, Minnesota is still negotiating with Shade's insurance and we are just waiting. Waiting and preparing for the next inevitable hospital stay. Shade is fine right now. He is happily playing and enjoying the last few days of his Spring Break, but I know how quickly that can change and I also know that if his pancreas continues to get damaged, he may end up in constant pain or worse. I'm scared to death and stuck waiting while the time bomb keeps on ticking. So, there is our long story so far. Sorry it's so long. I left out some details of course, but this is the important stuff.
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