Second opinion

[Johnnysmom]

Hi All,

I am new to this forum. My 11 year old was diagnosed 2 weeks ago with Crohn's. He is currently taking Prednisone and 6mp. My question is if any of you have gotten a second opinion about diagnosis and or treatment? We are very happy with our pediatric GI and the hospital near us but all of these harsh meds for the rest of his life makes me feel we should just get a second opinion. We were thinking about taking him to Cincinnati Children's Hospital if anyone has had any experience with that particular hospital? My main concern is that he has ulcers in his stomach and esophogus which the doctor thinks is crohn's but he said the biopsy was inconclusive. The biopsy for his small bowel was "consistant with crohn's" and although there was no sign of the disease it was found with biopsy in his large colon. Is this unusual to have it so pervasively? I am trying not to jump to all the "what ifs" in this situation but I am so scared for him. We desperately want to make the right decisions for his care. Any suggestions?

Thank You to all of you who share on this website. It has been a great source of comfort and information.

Tiffany

 

[AshleyElaine87]

Yes, I got three opinions myself. It can help confirm you're treatment plan is the best one. Or give you better information. I hope things get better!

 

[DustyKat]

Hi Tiffany and :welcome:

I'm so sorry to hear about your boy...:hug:

I have never sought a second opinion myself BUT if you feel that is what you need to do then do it. It doesn't matter the reason why, what counts is that you are comfortable with the decisions you have to make for your child and if that means a second, third, fourth or whatever opinion then so be it. Plus it is very comforting to have your decisions validated.

Unfortunately Crohn's is that pervasive, it can occur anywhere in the GI Tract from the mouth through to the anus.

Is the medication working?

Good luck and welcome aboard.

Dusty. xxx

 

[izzi'smom]

We also got a second opinion...although we didn't disagree that she had Crohn's we wanted another opinion regarding treatment. There is a short list of reviews on this board somewhere that may help...we haven't been to Cincinnatti. FWIW, dd has a granuloma in her small intestine with all of her disease in her large intestine. SO she has Crohns but it is treated more like colitis because her disease is in her large intestine. I guess I am trying to say that if you believe your son has IBD the treatment is similar in many cases.
What kind of symptoms did he have? Have they subsided?
Sorry you are going through this...(((HUGS))) Stick around, though...this board is wonderful!!
...and I meant to say yes to the second opinion...it helps to hear it from more than one source and you can obtain more information...always a plus!

 

[radchic]

Thank God I got a second opinion! This is all so very new for you and you are trying to learn everything you can. Every doctor that looks at your son will add to your knowledge. And like I tell my kids "knowledge is power"! If you are not comfortable with his diagnosis or treatment, you should absolutely get a second opinion. Sorry your here, but glad you found this forum, they are all so great!

 

[Johnnysmom]

Hi Dusty!
The prednisone is working and we just started 6mp. I guess it will take a few months to get into his system before we know if it is working or not. He is gaining weight and has more energy. He has an MRI next week to check the rest of his small intestine.

Thanks for responding! You guys are amazing.

Tiffany

 

[Dexky]

Welcome Tiffany! I'm just curious what symptoms he had that sent you looking? My son developed chronic bloody diarrhea so we were convinced the initial diagnosis was correct. There's no harm in second opinions so I say go for it! Good luck!

 

[AZMOM]

Tiffany - welcome to our motley little crew . Claires Crohn's was literally mouth to rectum at diagnosis so yes , it can be that way.

We personally didn't go the second opinion route; however, it was not Claires first autoimmune disease. Now that I'm typing this, I remember we DID get two opinions when she was dx with arthritis so many years ago. I haven't thought of that in awhile....

This is my usual long and rambling way of saying, he's got a long way to go until he can advocate for himself.....so you do whatever you have to in order to be equipped to do it for him.

Hugs - let us know what we can do to help you!!!

J.

 

[Johnnysmom]

Welcome Tiffany! I'm just curious what symptoms he had that sent you looking? My son developed chronic bloody diarrhea so we were convinced the initial diagnosis was correct. There's no harm in second opinions so I say go for it! Good luck!

Dexky,

He had constipation for many years, just now normal BM's and never had diarrhea a day in his life. But he was losing weight, about 3 lbs. a year for a couple of years in a row. He recently had blood in his stool, has stomach pain, and they said he had protein in his stool. Protein levels were also low in his blood. They found ulcers in his stomach and inflamation in the small intestine. He has an MRI next week to check out the rest of the small intestine. He had a couple of bad illnesses right in a row where he was on antibiotics and a lot of advil and I am wondering if the stomach ulcers aren't from that since they were "inconclusive" from the biopsy. He said the small intestine was "consistant" with crohn's. I am just hoping he doesn't have this in his stomach and wondering if what they found in his stomach are just ulcers and if he needs different treatment.

My Pediatric G.I. is just out of medical school. Which has it's positives and negatives. Maybe I am just in denial about this whole diagnosis. It is hard to accept. Thanks for listening.

Tiffany

 

[Johnnysmom]

HI Julie (mom to Claire),

Thanks for responding! I saw on your information that your Claire has Transverse Myelitis too. I was diagnosed with TM in April of 2011, and I knew what my son has was probably connected (autoimmune) but we have not had any issues in my family up until now so I was just ignorant about all of this. How is your Claire doing? Having both of these issues must be so hard for her and you. (((hugs)))

Tiffany

 

[stupidbody!]

Definitely get a second opinion. It doesn't hurt. You're going to see this dr for awhile - make sure you completely trust him. Find out who the BEST doctors are in your area.

Heads up with the prednisone. Your dr. should have already told you not to be on it for too long. For adults the risks increase when you take it more than 6 months. I guess what I'm saying is: use this time that the prednisone is helping to get second opinions and find a drug that is going to work long term so he can get off the prednisone.

Crohn's is a pretty serious disease. I tried naturopathic treatments when I first got sick (I was in really bad shape). It was like trying to put out a raging forest fire with a watering can. For me at least it took some serious drugs prednisone and humira) to get me feeling ok again.

 

[DustyKat]

Hi Dusty!
The prednisone is working and we just started 6mp. I guess it will take a few months to get into his system before we know if it is working or not. He is gaining weight and has more energy. He has an MRI next week to check the rest of his small intestine.

Tiffany

Good luck with the MRI Tiffany......:goodluck:......I hope it gives you solid answers!

Keep us posted on how things go.

Dusty.

 

[rmk]

Hi Tiffany, (Johnnysmom), my son Tadhg is 11 and has a similar story he began Prednisone and 6mp for Crohn's 3 weeks ago. We agonised over the decision ourselves but didn't get a second opinion. He now has pancreatitis and a raised amylase level, while he was hospitalised over the weekend the other GI specialist on duty said it was the 6MP but his regular GI specialist wants to put him back on it. (That only happens to 1 in 10,000 according to docs) Like Johnny, Tadhg had constipation not diarrhea , but his ulcers are on the small intestine and small bowel, his tests were inconclusive too, the laparoscopy showed the ulcers on the surface. Now I know every case is different so I hope I'm not being too negative, good luck with whatever decision you make, keep us posted, it's hard to see all the angles sometimes we can only do our best with the information we have.
Wishing you all the best,
Rachel & Tadhg

 

[Johnnysmom]

Rachel,

Sorry to hear your son is affected by Crohn's too. Our G.I. told us that pancreatitis was definetly a possible complication for 6mp. We have been watching for it because my son had raised amylase and lipase levels in September before he was diagnosed and we had brought him to the E.R. thinking he had appendicitis. His amylase was 118 (normal scale used was 25-115) and lipase was 437 (normal was 73-393). I don't know if it is okay to continue with 6mp if that happens but from what I got from the G.I. doctor it was as long as it continues to be monitored. You just don't want it happening too often because it can damage the pancrease. I hope Tadhg gets better and can continue on his meds without any further complications. Please keep me updated on how he is doing. I wish you lived closer so our boys could meet. Johnny desperately wants to know someone else with this disease.

Thanks so much,
Tiffany

 

[rmk]

Hi Tiffany, I know it would be great if they could talk about it with someone their own age, i looked into enotional support (therapists) for Tadhg but it's not the same as just blowing off steam with another kid. his friends are good but they get bored with the medical side of things and the diet restrictions so Tadhg censors his conversations a bit, which is a shame. I think i spotted a children's forum within the crohn's forum I'll have to look into it more but maybe they could meet there for now. Wish Johnny luck with the treatment from us, look forward to reading your updates and comparing notes, he has a football match tonight fingers crossed there's no drama, halloween is tough with no candy (he's on the enteral nutrition drinks too) but we'll make the most of it.

have a good weekend,
Rachel

 

[Dexky]

Hey Rachel ^^^^ welcome! I hope you'll make an intro thread so everyone will see you and welcome you!...and so I can ask you how does one pronounce Tadhg??? I hope things are going well for him!!

 

[rmk]

Hey Dexky, I will make an intro thread soon, definitely on my list, everyone has been so helpful and generous with their replies and time. Tadhg is pronounced Tyyg (it's gaelic for poet or prince among men). Things could be better he's in between meds on prednisone but holding back the 6MP 'til new round of bloods next week, but happy in himself for now.

 

[kimmidwife]

RMK and Tiffany, Check out the thread on Enteral Nutrition. I had never heard of it as a treatment until I found this forum. It is very safe and does not have the dangers of all these drugs they are putting our kids on. I would have tried it immediately if I had known about it. We are trying it now 3yrs after my daughter was diagnosed and after she has already been on these other medications. I don't know why American doctors don't talk about EN and nutrition as they do in other countries. I had to fight with my doctor to get him to agree for my daughter to try it. She started it this week and is already feeling a little better.

 

[rmk]

Hi Kim, good luck with the EN Tadhg did great on EN from February til April and nothing else, then we introduced food slowly and within a couple of weeks he had problems again, he started to take it 4 days on EN 3 days on normal food, every combination possible untli it got really bad in August again. He's been on it exclusively since September and they plan to keep hi on it until we wean him off the Prednisone for December. It definitely helps with pain management but unfortunately for us the ulcers did not go away. Ensure Plus have a brilliant range of flavours, yoghurt style, shake style, even chicken soup! he also drinks the Nutricia fortijuce, his favourite is Tropical and Chocolate in the shakes. I hope it works for Caitlyn, who's very beautiful, by the way. keep us posted ,
All the best,
Rachel

 

[kimmidwife]

Hi Rachel,
It is hard for us to get a good availability of drinkable formulas. The only one we found was the Pediasure peptide which comes in strawberry and vanilla. (I am not sure about chocolate as Caitlyn is the only person I know who does not really like chocolate unless they are recess peanut butter cups)

 

[Johnnysmom]

The studies I read showed that EN was as successful as meds at getting remission but that the remission time was much shorter for some. We had a hard time with this decision and still dont know if it's the right one but that did factor into our decision. I would love to hear from people on what worked for them. That is one reason why we are getting a second opinion. We are also just so glad he is eating and gaining weight again!

 

[rmk]

hi Kim try this link http://www.abbottnutrition.ie/products/product/ensure-plus/
they also have a .com http://abbottnutrition.com/
maybe they can order them in for you I know it helps Tadhg to have a variety of flavours, wouldn't it be great if they had peanut butter cup flavour yum

 

[sararay]

He had a couple of bad illnesses right in a row where he was on antibiotics and a lot of advil and I am wondering if the stomach ulcers aren't from that since they were "inconclusive" from the biopsy.

I didn't have any symptoms of crohns until after I was on a LOT of antibiotics when I got shingles and impetigo at the same time when I was 15 years old. If it wasn't for the antibiotics I would have died because my liver was shutting down. I became lactose intolerant and allergic to wheat right after that severe illness. I was also on a lot of ibuprofen (now told not to take it because it causes bleeding) because of pain. I wasn't diagnosed with crohns until I was 19 years old. I do believe there is a correlation between the mega doses of antibiotics and my eventual onset of disease.

I am not diagnosing your son, but it sounds a lot like my experience. I will tell you what worked for me and you can research it and figure out what you want to try with your son. After I was stabilized with meds (prednizone, asacol and 6-mp) I saw a naturopath and a chiropractor who both independently diagnosed food sensitivities. They prescribed a diet similar to the Specific Carbohydrate Diet (eliminating the foods I was allergic to) and gave me probiotic supplements. It took about 3 months to feel a difference then a year before I felt "normal" again.

After taking antibiotics, especially a variety of strong ones, you have to replenish the body's beneficial flora. This isn't going to cure his Crohns (if that is what he has) but it will help his body heal because the probiotics help fight off pathogens that can make him sick.

I was in remission for 7 years without medications just by following this diet. I do not recommend doing this because this flare-up kind of snuck up on me and I am now facing a resection, but I believe in combination, diet and meds can benefit a patient. If it is crohns, it does not ever go away, it just goes into remission. I hope that with my diet plus a good set of maintenance meds I can make it 10+ years next time before another flare. Hope this helps you.

 

[G's mom]

I did get a second opinion for my son, who is 12. We have had communication problems with the 1st doctor and I was concerned about starting Remicade. At the appointment with the 2nd doctor, he confirmed that we should start Remicade. He also reassured me that we were with the best GI dr. in the area and that we shouldn't switch. (2nd doctor was almost 2 hours away). The 1st doctor did not seem upset about the 2nd consultation, and communication and improved quite a bit. So I would encourage you to get a 2nd opinion.

Take care,
Vicky

 

[tannersmom]

My son is 12 and was diagnosed at age 7. We started in Louisville at Kosair but got a second opinion at Cincinnati Children's. Love our GI and that hospital, the doctors really listen to your concerns. Wouldn't take my child anywhere else.