[TerrorMom]

I'm here for my 19 year old son. 2 years ago he was diagnosed with CRPS in the area of his liver. Most likely the bile ducts and biliary tree. It was following gall bladder surgery. Nothing about any of this is typical and it's been a fight from before diagnosis.
Jan 2012 He just woke up sick one day. Went to Med express, diagnosed with food poisoning. 3 days later, went back, diagnosed viral. 2 days later went to an area ER. CT scan, diagnosed viral. 2 days later, same results, husband was treated very poorly (the doctor wouldn't even speak to him, I ended up going from work and the doctor spoke to me rather than my husband.) So we went immediately to Children's. He was diagnosed with Fatty Liver, given a referral to GI.

Feb-June 2012 He had a total of 3 HIDA scans, several abdominal ultra sounds, on June 1 a liver biopsy proved NAFLD with severe scaring. It was actually NASH at that point in time. Fibrosis of stage 2 and 3. He ended up back at the ER in severe pain and admitted. The 3rd HIDA scan showed his gall bladder working at 12%. We were sent home to schedule surgery, ended up back the next day when the medication ordered couldn't be insurance approved. Sonogram showed stones in the gall bladder, surgery was on June 14th. He then developed a severe migraine. He turned 16 on the 24th.

July 2012 GI called, pathology showed his gall bladder was duplicated. It's a rare congenital defect usually found in autopsy. I haven't searched recently, but I could only google 5 or so live cases. his caused 2 sets of cystic ducts, imaging to date has not shown a second gall bladder. He was also diagnosed with pseudotumor cerebri through lumbar puncture. We believe medication induced. It was slight (opening pressure of 27 first one 20 on the second) Resolved through medication. Although the headache continues even today. It's a 7 baseline, goes between a 3-10 through out the day. Includes extremely sensitive hearing, sense of smell and at times vision changes and intolerance to light. Also in July, we took him to the ER with gauze coming from his top incision. Surgery ut the gauze off and called it a foreign body removal. They claimed it was fuzz or a towel. Our towels were black, his bedding burgandy or red (his favorite color) and with 2 boys, I buy very few white shirts.

Jan 2013 We had switched GI's a second liver biopsy showed a reduction of fat, but still fibrosis of 2 and 3.

August 2013 MRI on side due to pain (should have been an MRCP but the dye wasn't used first time because he couldn't hold still, second and third, no idea why) Aug scans showed an enlarged spleen which usually indicated cirrhosis or Mono. No Mono.

Nov 2013 two nerve blocks for pain, we were finally told about the enlarged spleen (and flipped out because he had been cleared for Football in June by GI and had played in one scrimmage before the pain became too severe. This is when he was diagnosed with CRPS and the doctor gave him ketamine infusions while admitted twice. he also was admitted around this time for DHE for the migraine. He had 3 painless days during this time. And it was the only time he's been pain free since.

He was transferred out of Children's GI to an adult GI clinic due to my not dropping the duplicated gall bladder/gauze issue before his 18th birthday. And to the Liver Disease Center on June 25th, the day after he turned 18 in 2014. Because he's on an at home ketamine protocol (400 mg 4 times a day with a ketamine troche and 500 mg emergency dose a day)

I've had 2 doctors tell me to date that if there is gauze left in there, it would be encased in scar tissue by now. No scans have found anything. Severe debilitating pain with the other complications of liver disease (which is now cirrhotic) and enlarged spleen is not worth the risk of surgery. The chances of the CRPS being from a bile duct injury are very high from my reading.

Our pain issues are now that he is out of Children's GI, Children's pain has issues admitting him for ketamine infusions. Presbyterian Hospital where his liver specialist practices from has a protocol that prevents him from getting his home dosage of ketamine unless he is in ICU. (he hasn't needed ICU) With his home dosage, he's been basically bed bound for almost 4 months. When it gets to the point where he is vomiting or dehydrated, he'll agree to the ER. We've had a few very bad experiences in Children's ER and at Presby, only one admission. He's always looked at as a drug seeker even when he is not looking for additional medication. Our choices are limited to now making sure nothing life threatening is going on. He could still get ketamine infusions at Children's if someone would admit him, but we keep getting sent to adult ER's by Children's Chronic Pain and they are the only ones I know of in our health care network who handles ketamine for pain.

Honestly, my frustration is that vets put animals down in this kind of pain, yet a human is left to suffer with no relief. He is at the max for his home dosage and to date, it seems like no one is looking into any alternatives and busy playing the blame game. He has always been medically compliant with his dosage. He literally watches the clock at times until his next dose.

His diagnosis to date are NASH related Cirrhosis, CRPS, congenital abnormalities of the liver, gall bladder and bile ducts. Chronic daily headache, psoriasis. And more that I can't think of at the moment (other than obesity.) He's lost 40 pounds since August with almost no activity level due to not being able to eat and vomiting.

[EnglishDave]

Hi Terrormom,

I was deeply moved by your Post about your son's trials regarding his liver, gall bladder and the painful complications.

You see, in 2005 I had a rare gall bladder tumour which necessitated removal by laparoscopy. Since then I have always had pain under my right ribs, masked by the massive doses of pain meds I use for all my issues. Fast forward to this year and in May I started dieting after another fall broke ribs.

This healthier lifestyle has been rewarded by liver Bloods spiralling out of control. I had an Ultrasound which showed a very bright, fatty liver and I was dxed with NASH. Despite my clean living and steady, sustainable weight loss and because of my previous gall bladder/2013 Colorectal Cancer issues, along with the pain symptoms, I am booked in for an abdominal CT Scan on Wednesday. My GP is concerned about the underlying cause for my rising Bloods.

Therefore, I fully understand the stress and worry when an important organ is damaged, but mine is in a body battered by time, meds and genetic predisposition. When that organ belongs to one's young son it must be doubly difficult and frustrating. The journey you and he have been on shows a level of medical care that has been sub-par to say the least, to allow a young boy with a painful dx to suffer so is negligent.

Another thing we have in common is the use of Ketamine. I have used it orally for years to assist easing Neurological Hypersensitivity/Neuropathic Pain. I truly believe it to be one of the most effective meds on the Market today.

We have a very active, informative CRPS Forum here, where the Members will make you feel welcome and address as many of your issues as they can. Be sure to check out the Stickies Threads at the top of the Pages. I'm sorry, my knowledge of CRPS only extends to what I've learned from my friends here.

I hope this settles at some point, the liver does have remarkable self-healing properties and there are advanced treatments out there.

Dave.

[EnglishDave]

Here is the Link to the RSD/CRPS Forum:

http://neurotalk.psychcentral.com/forum21.html

Dave.

[Littlepaw]

Dear T-Mom,

My heart aches for you and your family. I have had my own medical misadventures and I know how terribly frustrating and exhausting it can be. It is especially hard when you feel there is something being missed. That thing with the gauze would drive me nuts too. Your son has been through so terribly much!

I am sorry you had tom come join us but it is a soft place to land. Please come see us on the CRPS forum. It is great for sharing and support. Several of us, self included, get ketamine in differing protocols.

You and your son are in my prayers. I hope that healing and restoration find you both.
Sending hugs and healing love,