• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Vogt-Koyanagi Harada Syndrome

Hello All: I am acting as the voice for my 16 year old son, RJ, who was diagnosed with indeterminate colitis but docs were leaning towards UC in December 2009. As we journeyed from one medicine to the next and one hospital stay to the next which consumed a good part of the year this is what was uncovered: horrific allergic reaction to Remicade 1st dose with 105 fevers for 10 days and severe throat swelling and chest tightening with 2nd dose, Humira weekly injections, and now Cimzia with 10mg methotrexate and still on 20mg Prednisone which we have tapered down to 5mg only to be forced into going back up again. We fear we have reached the end of the rope. My doc is considering revisiting Remicade and told us to be on the look out for trials or perhaps we can get a compassion release for stem cell or some other experimental drug. Along this journey my son had very short periods of relief. He developed kidney stones, severe mouth and throat soreness and then the final piece of the puzzle was in June when he had a rectal abscess and was rushed to surgery where at the same time Prednisone did such a number to his face the docs thought he had a staff infection. The docs then formally diagnosed him with Crohn's but I guess it is possible to have both? When I was referred to the forum I was thrilled to read about the promise of stem cell transplantation. I have so many questions to ask about with regard to stem cell transplant, LDN and the benefits of the Elemental diet, SCD Diet, Maker’s diet, the whole gluten subject…. He is severely underweight and of course wants to eat like a 16 year old. I am hoping you can all shed some light on this very mysterious and tricky disease. It has taken its toll on my son as you can imagine at 16 the world is just opening up. His passion is baseball and he is quite good. He has not been back in school since November 2009 and has missed out on countless tournaments, college showcases, Sweet 16’s… life. It’s all very upsetting and frustrating. There is talk of a temporary ileostomy to help rest the colon too…I fear it won’t be temporary…and I worry that his colon might be too far gone as we had also journeyed to Boston children’s in April to discuss the use of Tacrolimus as the docs were shocked to see his colonoscopy slides and thought he was a prime candidate for it. That was when they thought it more to be UC. My family is frightened and confused…any and all input is greatly appreciated. Hoping for some insight and someone RJ might open up to and talk to… ☺ thank you
Stacy (RJ's mom)

Oh…one more puzzle piece. In February of 2007 RJ had viral meningitis. Later he developed vitiligo (a tiny patch on his chin) and several specialists later, a doc diagnosed him as perhaps having VKH instead (Vogt- Koyanagi Harada Syndrome), which mirrors same symptoms as viral meningitis but with definitive development of Vitiligo….docs believe this was the “environmental” piece to developing IBD…. sorry for the lengthy intro!
__________________________________________________ _____________________
Dx Dec 2009: Indeterminate colitis/UC? DX June 2010: Crohns
Remicade, Humira, Cimzia, Vancomycin, Flagyl, Cipro, Unisyn
Current Meds: Cimzia, Methotrexate 10mg, Prednisone 20mg, Flagyl, Proctofoam
Supps: Vit D, Fish Oil Multi vitamin,Liquid Cal, Mag, Zinc, VSL #3, Iron, Folic Acid, B12, Calcium Gummies
Stacyface is online now Report Post Edit/Delete Message
 
First things first, NEVER EVER EVER let him take remicade again. Based solely on the fact your son's GI said to take the remicade again after such a bad reaction, I would immediately change doctors, no matter how much you like him. After his initial fever there was good indication of an allergic reaction and with humira and cimzia out, there was no need to give him the second dose. Especially since the second dose is when the most deadly reactions are likely to occur as your body decides to accept or reject the drug.

With that out, you aren't at the end of the road, just not in an easy spot. The idea of Tacrolimus isn't a bad one as people can respond well to it. His ileostomy doesn't have to be permanent and the resting of his gut is a good thing and can often get the inflammation under control. However, you have to start looking at quality of life issues as well. Can he function with the ileostomy and does he get relief, or is he still suffering and not benefiting? There is also Tysabri, I know the side effect risks are nasty, but it is something to consider trying for 6 months even to get a benefit. PML hasn't developed in anyone taking it less than 12 months last I heard and that might get his crohns under control before moving back to a maintenance of humira or cimzia (might not be effective due to severity of inflammation, or because he is a non-responder). Also, did the doctor ever increase his humira or cimzia doses? You can go up to 8 humira shots in a month or 4 cimzia shots according to past and present doctors of mine. A large percentage of humira users take at least 4 shots in a month for relief and if your doctor didn't increase his shot number, again I would highly recommend finding a new doctor.

RJ sounds like a prime candidate for being seen at many of the IBD treatment hubs like the Cleveland and Mayo clinics (just examples, not sure what ones are near you). They are more open with patient involvement and they tend to be at the cutting edge of treatment options. They also will help you integrate diet and nutrition better than your average GI. As for supplement, his list looks good and should be maintained even without the disease.

Finally onto diet. This is a point of major contention amongst doctors and patients alike. From a statistical standpoint most studies find that diet isn't beneficial on a population level. Many people on this forum have tried these diets and had minimal benefit (in the crohns department that is. They are excellent diets regardless of crohns). However, there are some studies I believe and even more importantly, plenty of people on this forum and elsewhere that have achieved nearly full remission just from altering diet. When they go off these diets they know it and suffer, but when following a specific diet, they do great. Your best bet for diets is to have him try it and be 100% true to it for at least 6-8 weeks to try and see a benefit. Keep a food diary about what is eaten and how he felt to judge any diet best. I wouldn't overly worry about gluten specifically unless he has celiac as well. It isn't something I would recommend either. No need to eat large quantities unless he knows it isn't causing suffering. Might as well lower the intake when possible, but don't ruin his eating over gluten since it is in everything. As for LDN, it is another of these hit or miss treatments. Some people it works miracles, others like me when I flared it did nothing and I had to go back to traditional options. Give it a try if you can find a doctor willing to prescribe it, just don't sit there waiting too long if he is suffering and needs something like prednisone. It will take 4-8 weeks to even start seeing LDN work, so if 2 weeks in he flares, you have to restart the process once the flare is controlled. D bergy knows much more about LDN and other more natural approaches and is someone to contact if you want to try that path. Just remember my caution about trusting the medical options out there if a flare occurs, you don't want to risk serious complications waiting too long for these alternatives to work. However, I am all for trying these alternatives. Just restart them after a flare is controlled and hope you are able to give them the time they need to work.

With all that in mind, I want you and him to keep hope. There are plenty of new cutting edge treatments coming down the pipeline that work differently from remicade/humira/cimzia. Get RJ a new doctor immediately as I would not trust his judgement on RJs safety after his talk of going back to remicade. If you want to go into a trial, an IBD treatment hub is a good bet to find the best options. He an make it through high school and college with crohns. There are plenty of people near his age on the forum, so I'm sure someone closer to his age will talk to him if he wants.

Good luck and if you have any more questions don't hesitate to PM me. I have my oral qualifying exam for my Ph.D studies this coming Tuesday so it might take a few days to get back to you, but I will try to answer if I can. If I don't respond right away, PM me again on Wednesday the 8th.
 
Wow i amso sorry to hear all that i really hope youll get some answers soon. Encouragw him to get on these forums too it can really really help. I started my crohns adventure a week after my 16th birthday and am now 19. Really sorry he is missing out on those years. I missed out on some but im nowhere near the severe status *knock on wood* good luck with everything and dont hesitate to ask as many questions as you like here ive found out more since i joined these forums than i did in the 2 years before. I really feel for him and i hope you see some improvments asap
 
Hi Crazy:
I am trying to persuade him to read a bit on the forum...he just keeps insisting I do it and keep him posted...still a bit of denial and mostly sick of the subject as well since he has been living and breathing this nightmare for 10 months now. Hopefully you'll hear from him someday soon.

thx
Stacy (RJ's mom)
 
First things first, NEVER EVER EVER let him take remicade again. Based solely on the fact your son's GI said to take the remicade again after such a bad reaction, I would immediately change doctors, no matter how much you like him. After his initial fever there was good indication of an allergic reaction and with humira and cimzia out, there was no need to give him the second dose. Especially since the second dose is when the most deadly reactions are likely to occur as your body decides to accept or reject the drug.

With that out, you aren't at the end of the road, just not in an easy spot. The idea of Tacrolimus isn't a bad one as people can respond well to it. His ileostomy doesn't have to be permanent and the resting of his gut is a good thing and can often get the inflammation under control. However, you have to start looking at quality of life issues as well. Can he function with the ileostomy and does he get relief, or is he still suffering and not benefiting? There is also Tysabri, I know the side effect risks are nasty, but it is something to consider trying for 6 months even to get a benefit. PML hasn't developed in anyone taking it less than 12 months last I heard and that might get his crohns under control before moving back to a maintenance of humira or cimzia (might not be effective due to severity of inflammation, or because he is a non-responder). Also, did the doctor ever increase his humira or cimzia doses? You can go up to 8 humira shots in a month or 4 cimzia shots according to past and present doctors of mine. A large percentage of humira users take at least 4 shots in a month for relief and if your doctor didn't increase his shot number, again I would highly recommend finding a new doctor.

RJ sounds like a prime candidate for being seen at many of the IBD treatment hubs like the Cleveland and Mayo clinics (just examples, not sure what ones are near you). They are more open with patient involvement and they tend to be at the cutting edge of treatment options. They also will help you integrate diet and nutrition better than your average GI. As for supplement, his list looks good and should be maintained even without the disease.

Finally onto diet. This is a point of major contention amongst doctors and patients alike. From a statistical standpoint most studies find that diet isn't beneficial on a population level. Many people on this forum have tried these diets and had minimal benefit (in the crohns department that is. They are excellent diets regardless of crohns). However, there are some studies I believe and even more importantly, plenty of people on this forum and elsewhere that have achieved nearly full remission just from altering diet. When they go off these diets they know it and suffer, but when following a specific diet, they do great. Your best bet for diets is to have him try it and be 100% true to it for at least 6-8 weeks to try and see a benefit. Keep a food diary about what is eaten and how he felt to judge any diet best. I wouldn't overly worry about gluten specifically unless he has celiac as well. It isn't something I would recommend either. No need to eat large quantities unless he knows it isn't causing suffering. Might as well lower the intake when possible, but don't ruin his eating over gluten since it is in everything. As for LDN, it is another of these hit or miss treatments. Some people it works miracles, others like me when I flared it did nothing and I had to go back to traditional options. Give it a try if you can find a doctor willing to prescribe it, just don't sit there waiting too long if he is suffering and needs something like prednisone. It will take 4-8 weeks to even start seeing LDN work, so if 2 weeks in he flares, you have to restart the process once the flare is controlled. D bergy knows much more about LDN and other more natural approaches and is someone to contact if you want to try that path. Just remember my caution about trusting the medical options out there if a flare occurs, you don't want to risk serious complications waiting too long for these alternatives to work. However, I am all for trying these alternatives. Just restart them after a flare is controlled and hope you are able to give them the time they need to work.

With all that in mind, I want you and him to keep hope. There are plenty of new cutting edge treatments coming down the pipeline that work differently from remicade/humira/cimzia. Get RJ a new doctor immediately as I would not trust his judgement on RJs safety after his talk of going back to remicade. If you want to go into a trial, an IBD treatment hub is a good bet to find the best options. He an make it through high school and college with crohns. There are plenty of people near his age on the forum, so I'm sure someone closer to his age will talk to him if he wants.

Good luck and if you have any more questions don't hesitate to PM me. I have my oral qualifying exam for my Ph.D studies this coming Tuesday so it might take a few days to get back to you, but I will try to answer if I can. If I don't respond right away, PM me again on Wednesday the 8th.
Hi Saidinstouch:
Thank you for responding...truly. Up until my husband read your reply he didn't think trying Remicade again was a bad idea. I, on the other hand, was horrified as I witnessed first hand what happened...very scary and I don't even want to think what would have happened if I wasn't watching him diligently during both infusions...I can tell you the nurses may not have caught it in time and most of the residents tend to dismiss a kid. At any rate, I do love my doc, immensely, but I am feeling that he is a bit preoccupied lately...a very, very busy man. In his defense, he was not the attending. We were with a completely different group at CHOP in Philadelphia. As much as I hate to put my son through another scope, I think my new doc needs to see first hand what he is dealing with instead of viewing slides and pictures and reading reports that clearly do not define the severity of the reaction. In addition, my son had relief within 48 hours of his very first Remicade infusion and then the fevers set in. On the second infusion, the serious reaction developed although he did have some relief but only for a few short days and the stools began to increase. This told me that not only was he allergic but he was building up antibodies to it as well. His loading dose of Humira was great too. That was in late January and it was the best two weeks he felt throughout this saga. Unfortunately two weeks later things started up again and after two months of trying it he landed in the hospital again to get another major flare under control at which time he was scoped only to see no improvement since December...onto Cimzia we went and high doses of steroids. At any rate, I want to thank you for your reply...I need to get my story out there a little more becuase it is advice like yours that I am in such need of...I'll keep you posted.

Stacy (RJ's mom):wink:
 
Hi Stacy, so sorry to hear about RJ's nightmare. I know a bit of what he's been through, I've been suffering from this disease since I was sixteen, so it's been two years now! Not as long as most of the sufferers on here, but I do know what it's like to lose the prime of your life to the disease. It's so tough because we want to pretend it's not real and we can still do all of the things that our peers do, but sometimes we teenagers need a dose of reality! If I were you I'd be getting some sort of nutritional drinks into him to keep up his nourishment so it won't prevent him from growing and maturing like Ensure or Boost. My Dad got me vivonex. It's really expensive, but it's what they use in the hospital for people with IBD or people who have just had surgeries. On it's own, it tastes awful, but there are recipies out there to enhance the flavor and make it drinkable!

Having said all of that I would put him on a really bland diet. I don't know if a diet change is enough to put him in remission on his own, but it'll definitely help! Find a few foods he can tolerate and know that those are his safe foods, it can really help you get out of a bind. I agree with the others, definitely no more biologics! I had a super bad reaction to just IV iron and we didn't even get through the test dose and I had stomach problems for days after that.

As far as LDN goes, for me it's a great drug. I've had great results with it, but the bad news is, is that it takes a really long time to work and if you get sick with an infection of some sort, you will be feeling awful. I would definitely try the different diets. Personally, the SCD worked for me and did wonders! My rule of thumb though is if there is no improvement in two weeks, it's time to try a new diet. Also just a forewarning that some of the things that a diet may say are okay to eat are not or may not work with your son. For example in the SCD they say beef is okay. I can't eat beef so I have to eat fish or chicken. Also I wouldn't try the Maker's diet. He said it's okay to eat raw veggies while in a flare and for that reason alone I think he's crazy, not to mention his book is full of him just promoting his own products that don't work. But that's another story for another time!

Another thing you might want to do is get a food allergy test done. I'm getting one done soon and it'll tell you for sure which foods to absolutely stay away from uniquely to him. That's ironic about the meningitis, I had the vaccination and then my crohn's blew up for the very first time.
 
Top