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New member needs advice

Posted by on Feb. 15, 2014 at 4:20 PM
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But first some back story. My oldest son J is 17. in Feb 2012, he woke up in a lot of pain and extremely ill. We took him to Urgent care and was told it was food poisoning. He was no better a week later, so we went back and was told it was a virus. A few days later at the ER after a CT scan, virus. And a  few days after that we got the same diagnosis from another hospital (DH didn't care for how he was treated, after NOT seeing a Dr) and we took him to Children's there he got a complete work up and we left with a referral to GI, they found Fatty Liver (NASH) Shortly after, we went back to Children's ED because J was in serious pain, and that was the first of many hospitalizations. An Endo scope showed H. Pylori, and he was given a round of antibiotics, To shorten the story, 3 Hydascans, 2 more Endoscopes and a Liver biopsy occurred between March and June 1 of that year. The third hydascan (sp?) showed that his gallbladder was working at 12 percent and they decided to remove it, set up an appointment and sent us home. Surgery didn't want to do the procedure, the medications they gave him did nothing to control the pain. I can't count the ER visits and hospitalizations in that time, but he was discharged June 2 from the biopsy and I flipped when I couldn't get his prescriptions filled and he ended up back into the hospital. Another sonogram showed stones in the gallbladder and they ended up doing the surgery to remove it. 

From March to June, we were referred to Weight management and Medical Copeing, as well as the Chronic Pain Clinic. At the end of June, the migraines started. They "believe" they were rebound head aches due to medication. The head aches lasted 10 months, daily, to where he couldn't function. No medication given worked. After 2 lumbar punctures, ENT consults, Eye care consults, Neurology consults, he STILL suffers from headaches 6-7 days a week, usually all day, he's in pain about 98% of the time. 

Back to July of 2012, I received a call from GI that his Gallbladder was found to be duplicated. We're still not sure what that means in the long run, but both GI's he's had have said that there "might" still be tissue left inside. The surgeon who did his surgery said that everything was normal, surgical notes say that the cystic duct was short, pathology showed 2 cystic ducts. 

J is in constant pain. His newest pain med gives him a reaction. The pain team is aware of it. He had 2 nerve blocks in November for undiagnosed pain in his right upper quadrant. They believe it is either the liver swelling into the capsule or I was told 20% of Gallbladder removals result in like a phantom pain, much like an amputee feels. His liver numbers have actually been coming back normal, and he was diagnosed with Gilbert's Syndrome in August (And it's a French pronunciation as the last ER dr told me several times instead of worrying about my kid being in pain. ) 

J' has also had 2 nerve obviation's for the same pain that were unsuccessful, he goes back to that pain clinic on Tuesday of next week. We have found one thing that works to control his pain in his side (Ketamine) which requires an IV drip and hospitalization. Take away the ketamine and the pain is back to a 7-9 on the pain scale with in hours. It only takes it down to a 5-6. We have only found one thing that works on the headaches (DHE) which is a hospitalization. 

J has always had anger issues, he is a big kid, seriously big. 6 foot 4, 330 pounds wearing a size 17 shoe (looking for 18's) I have cancelled neurology appointments until I can change his neurologist because he hates him. I switched GI's because he no longer trusted the first (and neither did I) She was treating him for IBS, which while it is a painful syndrom, the pain moves around the bile, J's pain is in one area and never moves. We've had two very good psychiatrists, one left to go to a larger hospital but left her patients with a great fill in. We also have had 2 great therapists although he opens up to his current one more. 

I've been trying to get him back to the ED for help. He's in constant pain. He's not sleeping, not eating. When it first started, we could have put him in on the ketamine, but it would have canceled the first nerve obliviation at a different hospital, then the second. He absolutely refuses and for the last week the big news in our area includes the murder of his first psychiatrist. She was the first to actually believe him about his pain and was willing to do something to help him. 

He has a huge mistrust of the medical community at large, the two failed obliviations don't help, the ER dr who kept just correcting my pronounciation didn't help. We took him in for a flare up of Gilberts. It's a benign condition where he can turn jaundice in times of stress or sickness or as we just found out, not sleeping. With liver disease, I was unsure when to panic if he turned jaundice. Now I know that he would be more orangey. He can't go to school because of the pain, he has missed mostly 2 years. The school district is not being very helpful with home bound. By law he should have at least 2 instructors, 4 hours a week. This year, we got one for two hours in English only. Right now he can't even do homebound. The school district is a battle I can face later, for now, my battle is with my son. 

The pain clinic would help him, if he would go to the ER. His therapist is working with me, but he's not being completely honest with her. And at 17, mental health considers him an adult. She is just as concerned as I am about his refusal to seek help. And I'm at wits end. I told her if it was my youngest son, I would just put him in the car and take him down, but J has already barricaded himself in a room to avoid the ER, and neither my husband nor I have the strength to physically move him in an outright refusal. 

We have lost everything getting to this point. Financially we are ruined, my family is NOT supportive, the only reason we have a roof over our head right now is because I do take care of my Mom. Otherwise we would be on the street (and believe me, I know that as fact., it happened this spring/summer after an arguement. From May to August we stayed with my sister in law, in August we were going between friends. )  He wants to be a special education teacher, so his education is important. I fought tooth and nail to keep him in the district so he could play football. He made it into one game this year, none the year before. 

I don't feel he is responsible for our circumstance. He didn't ask to get sick, he didn't ask for this pain. But I am having a hard time understanding that if we could give up so much for him, why can't he just accept help even if it means a week in the hospital. Our circumstance and J's illness has caused a lot of anxiety for my youngest son as well, and he's currently medicated for it. I just need some advice on how to make him see that it's not a bad idea to at least try to get help. 

by on Feb. 15, 2014 at 4:20 PM
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by on Feb. 15, 2014 at 11:58 PM
1 mom liked this

I wish I had some advice for you.  I know how difficult teenagers can be.  

Unfortunately, in my life, I have found that it is suffering that encourages the most change. There's always 911 if the circumstances get too severe.  The ambulance won't allow him to fight.

Like I said, I wish I could give you some advice.  I'm sorry you're having such a difficult time.

by on Feb. 16, 2014 at 9:53 PM
It maybe time for some tough love. I woks you the best bit you do have other people to take care of besides your son who doesn't want the help. He is an adult now and you need to take care of yourself and your other son just as much. I'm so sorry for what you are going through.
by on Feb. 16, 2014 at 9:54 PM
Sorry all the typos..... Up there....
by on Feb. 23, 2014 at 6:07 PM
So sorry!

If he does not wants the help, is probably because he has lost hope to get better.
I have no experience with something like this.
I would just try to reach to his heart, searching for him to see that he is loved and we need him with us as a member of our family...
by on Feb. 23, 2014 at 10:02 PM

As a young adult there is nothing you can do without his cooperation. You have to take care of yourself and let him figure things out for himself. His mistrust of doctors etc. will be hard to overcome.

by on Mar. 11, 2014 at 4:30 PM

Just to update: I finally convinced him to go in. We should be going home tomorrow. It's a full week in for the medication. Praying it completely goes away and stays away.

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