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My 10 year old was just given the news... what do we ask?

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Ulcerative Colitis
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Posted 12/27/2012 6:14 AM (GMT 0)
After 2 weeks of bleeding (lots) and 4 stool sample negative tests, blood work, losing 8 pounds we finally got in to see a specialist and he did an upper and lower scope. He says that my baby (he is 10 but still my baby) has ulcerative colitis. He says it is a bad case. He said that his entire colon did not have one spot that was not red swollen and his stomach is full of ulcers. He put him on the following: 40 MG of prednisone daily 2 400mg pills 3 times per day (so 6 total) of Asacol 1 - Prilosec per day 2 capsules of VSL#3 Calcium Multivitamin We have a doctor appointment tomorrow and he has said that he will be putting him on MP6 or 6MP? He said to come with lots of questions and I have a list but... I think I need to ask for help. If you could, what should I ask? Is what he is on normal? In reading here it seems like that is a lot, especially for a 10 year old.   He has been on a dye free all natural diet for a few years now.   We found that dyes make him very angry and make him feel like he is “out of his head.”   My point with that is he is on an extremely healthy diet typically.   Just a note too, he is finally not having diarrhea and didn’t have blood in his stool today but did yesterday after 6 days on all these pills.  
Posted 12/27/2012 6:52 AM (GMT 0)
Welcome to the forum. How sad your young son has been recently diagnosed. Lots for someone so young to deal with. It's good he's starting to show improvement in some of his symptoms.

Was your son checked for h.pylori or other bacteria or virus or reasons for the stomach ulcerations?

Did he have testing of his small intestine?

My suggestion is for you to get copies of ALL his testing results for you records, research, knowledge and to formulate questions for the doc (and others). That includes all the biopsies (hope he took lots throughout his colon and of his stomach) and blood stool tests.

For sure he said ulcerative colitis and not just "colitis"?

Ask if he was tested for h.pylori. The stomach ulcerations wouldn't be connected to UC directly, but I think you should ask if your son could possibly have Crohn's and not UC if the inflammation of both isn't of any tangible reason (bacterial, etc).

Since this will be one of possibly many appointments, you will be more prepared each time.

I also suggest you ask that your son's vitamin D level be checked as well as the b vitamins.

I don't have the experience or much knowledge on the immunosuppressant meds. But your son might only need them for a shorter time period to get the inflammation under control. He might be able to treat and maintain in the future with oral AND rectal 5ASA or maybe some steroid rectals if needed.

Please let us know how the next appointment goes.

q
Posted 12/27/2012 4:03 PM (GMT 0)
Was your son checked for h.pylori or other bacteria or virus or reasons for the stomach ulcerations?

I will check, we didn't know about the stomach uncerations until the scope, but the pediatrition did check for lots of bacteria because we had to produce lots and lots of samples in different container that had liquid and some that didn't have liquid.

Did he have testing of his small intestine?

I don't think so because I think he stopped at the stomach and then stopped at the end of the colon but I will check.

My suggestion is for you to get copies of ALL his testing results for you records, research, knowledge and to formulate questions for the doc (and others). That includes all the biopsies (hope he took lots throughout his colon and of his stomach) and blood stool tests.

GREAT idea. I need to do that. He had joint pain this summer with lots of blood work and xrays then that didn't show he had anything but I guess that could be this too. It did create a good baseline so that we could see his blood work tests were WAY off. He did say that he took LOTS of biopsies so I hope he did. My son was throwing up and having more blood after the procedure and the doctor said again at that point that he did take lots and lots of biopsies and that could be the cause.

For sure he said ulcerative colitis and not just "colitis"?
He said FOR SURE ulcerative colitis and I had the nurse write it down for me so I had the write spelling. He said it was very clear but we would get confirmation from the biopsies. Is there any chance that the biopsies would come back with something worse?

THANK YOU so much for your thoughts and help. I will write after the doctor appointment today.
Posted 12/27/2012 4:05 PM (GMT 0)
IMO, it is not a lot for the severity described. I think rectal meds should also be added. These can improve quality of life most quickly. 6mp needs bloodwork to monitor, but may allow getting off Pred.

Because of the stomach, I think there should be tests to see if this is CD.

It is good to read here and maybe at the CCFA.org. Ask about prognosis, toxicity, explore nutritional/supplement possibilities (doc may not be up of this info), and do not be surprised if Remicade or Humaria is suggested.

Keep asking questions. Good luck.
Posted 12/27/2012 4:24 PM (GMT 0)
i'm sorry your son was diagnosed. i think what your son's doctor put him on is gonna help him a lot. my UC affects my stomach, too, and it was really messed up last year. i threw up everything- even when there was nothing in my stomach. i took prilosec and zofran and those really helped. i had an upper GI endoscopy 2 months after using those two meds every day and my stomach was back to normal.

also, 6mp is what your doctor wants him on as a maintenance med for when he's done prednisone. it's good to start while you are on pred. as people usually get symptoms again as they taper. your son will have to get lots of bloodwork done while he takes this, but it's just to make sure everything looks okay.
Posted 12/27/2012 4:24 PM (GMT 0)
momofchild, I also agree that the meds prescribed sound ok.  Even though the Asacol pills are large and 6 pills/day is much more than you ever thought you'd be giving your child, this medication is essentially a topical med and has very little systemic absorption.  The dosage is not by weight of the individual taking the medication.

Did the prescribing DR give you any information about what to expect from the steroids your son is taking (prednisone)?  This is the one medication on your list that may cause some significant side effects.  They can range from nothing to terrible mood swings, so be prepared.  You should discuss this medication with your pediatrician and your pharmacist as well.  It is an effective med for quickly inducing remission, but it can have some significant issues for children and should only be used in an emergency (which it sounds like you have right now).

{{{{HUGS}}}}

Posted 12/27/2012 4:38 PM (GMT 0)
Thank you so much! It just made me cry, and I am NOT a crier. The fact that 4 people could take a minute to help right now when it feels so helpless means so much! Thank you and I will keep learning.
Posted 12/27/2012 4:54 PM (GMT 0)
I'm sorry about your son's dx. I have a little one with UC - it's been over three years now and it has been hard (understatement). I have to run but my email address is listed under my name (click on it) and you're welcome to email me if you want. I believe it's different (worse) being the parent of and IBDer and it's important to have a support system of other parents who know what you and your child are dealing with. This is a great site for general info and support but there are others for parents of IBDers and I have to say when no one in my "real" life was willing or able to offer me support and advice, these parents were and some have become great friends. I'll pass on the links by email later.
As for your son, I would query the stomach ulceration too but having them does not exclude a UC dx. You need to ask your GI about this. Did your son have an MRI/MRE or small bowel follow through to look at the small intestine at all? Which country are you in if you don't mind me asking (there are different protocols in different places, so I might have a better idea of what the protocols are where you are?)
Posted 12/27/2012 6:13 PM (GMT 0)
Prednisone can be great for quick relief but is not a good med for long term use because it has many side effects. It can also hurt growth in children so he shouldn't be on it for too long. 6MP can take several weeks to a couple of months to kick in. Your doctor's plan is to use the pred for short term relief until the 6MP kicks in and then have him on that long term. You might want to read up on the side effects of both 6MP and prednisone so they don't take you by surprise. Sorry your baby has to go through this. You may also want to look into some natural treatments and dietary changes. Unfortunately, they are all hit and miss but when you find the right things it is amazing how much they can improve things.
Posted 12/27/2012 8:28 PM (GMT 0)
I am so sorry about the UC diagnosis of your son. This is a hard disease for anyone, but it really is tough when you are so young(or the parent). I agree w/ alot of the above that unf. it is a typical amt of meds for this disease. I also agree that adding rectal meds may be of great value even if his whole colon is affected. It is usually the worst at the bottom and these can really help. In fact for me, and many, it helps more than anything else. Just know that the asa meds (such as the asacal) are the safest for this disease and like kazben said, it mostly acts topically so very little get absorbed.

Again so sorry for the diagnosis and pls let us know how your son is doing.
B
Posted 12/27/2012 8:42 PM (GMT 0)
Very sorry to here this. Please tell us his actual diet,pre illness.

Also my best advice is to educate yourself as much as possibl on this disease.
Old Mike

Post Edited (Old Mike) : 12/27/2012 1:45:33 PM (GMT-7)

Posted 12/27/2012 8:57 PM (GMT 0)
Welcome, sorry your child has this.  I agree that the meds he's on now are the norm, although if it were my child I would hold off on starting 6MP so soon.  That is an agressive approach to start an immune suppressing drug before giving the asacol a chance.  Asacol (or other similiar drugs) is the first line treatment option because its the least invasive.  I think many Drs only go to the immune suppressing drugs once they tried all the 5 asa drugs and they have failed to work. 

In my opinion I would not give an immune suppressing drug to my child until I knew all other options had been exhausted.  I would only do it if asacol combined with rectal meds did not work.  Sorry to sound negative, I just think about my children and if they someday( hopefully not) inherit this from me, what I would do.

Posted 12/27/2012 9:22 PM (GMT 0)
I'm sorry you are dealing with this right now. My heart aches for you. Has your son ever been tested for Lyme's disease? I just say that because I have it/remission probably now and although I have UC as well, I think it brought down my immune system where I got the UC.

Has he ever had a shot of rocephine? Look up Hailey'sletter please and read her story, it's compelling.

I hope your son finds relief. Also, try NO SUGAR, NO YEAST meaning no bread, hardly any rice. This will help calm the gut, I believe.

Also, marshmellow root tea, in small amounts (it can make you go a jelly like poop) it will sooth the intestines.

Blessings,

Posted 12/27/2012 9:23 PM (GMT 0)
I would ask his doctor about the dose of Asacol that he is on. I am concerned that my son isn't on enough Asacol so I plan to ask his doctor about it when we see her in February! I would also ask about your son's stomach ulcers, what is causing them.

I am sorry to hear that your son was diagnosed with UC. My son became sick last year at the beginning of December. He had stomach cramps, Diar, blood and was losing weight. We were in and out of doctors offices and I was running back and forth to the hospital with stool samples. They tested him for twelve types of bacterias and were convinced that he had some type of parasite that was hiding in his poop. He kept getting worse and I was afraid we were going to lose him. We took him to the Children's hospital where we finally got his diagnosis of severe UC throughout his entire colon. He had a blood transfusion, was put on nutrition IV's, started getting prednisone and flagyl. Slowly, and I mean very slowly, he started getting better. We were in the hospital for 10 days. It is one year later and he is doing well although it has been a journey with bumps along the way. He competed in kids triathlons last summer and is swimming on a competitive swim team 4 times a week. He takes guitar lessons, does his schoolwork and likes to read and play football in the backyard with his family. He eats a lot (4 meals per day), doesn't have any cramps and best of all is growing. I just wanted to tell you this so that you are encouraged that he will get better and your life will go back to normal, although a "new normal" with UC.

This past year has been hard. I have worried....a lot. We had to find a different doctor because he wasn't doing as well with the first one we had. For now he is doing well and I am thankful. Whatever happens, my husband and I will be there for him and support him.

My heart goes out to you, your son and family. Hang in there and I will be thinking of you.
Posted 12/28/2012 4:39 AM (GMT 0)
THANK YOU AGAIN EVERYONE!

Today the doctor was good. Did I mention that he gave us his cell phone number when he did the colonoscopy and told us again today to use it even in the middle of the night if needed. He changed Conner's meds to 3 400mg Asacol 3 times per day(9 total), 2 VSL#3 2 times per day, still on 40 MG of prednisone, and 1 20mg Prilosec per day
He said that there is a 20% chance that once Conner is under control then he might be able to just be on Asacol vs. Asacol plus 6MP, so he wants to take that chance. He said it is worth the one extra month on prednisone to maybe not have to be on 6MP. So, we are doing that. He said that the rectal medicine is a steroid still so he would like to wait 2-3 more weeks to see if it is under control. He says if it is under control then we don't need to do it, if he is still cramping and bleeding then he will add it.
He said that in about 30% of UC cases that he sees there are stomach ulcers. So, he says that is "normal" just not "typical".
He said that Conner will need a colonoscopy every 2 years. That seems normal from what the internet says with the colon cancer risk. But what do any of you think?
Response to There are Miracles:
Over the summer when he was having tummy pain, no blood, and joint pain he was tested for Lyme disease, Celiac disease, x-rays and nothing came up.
Response to Old Mike:
His diet for the last 3 years has been 100% all natural, 50% organic, no food dyes, no high fructose corn syrup, lots of vegs and fruits, no soda, low sugar but still a kids diet (organic) mac & cheese, (kosher 100% beef) hot dogs, treats sometimes, ...
Response to others about small intestine:
He said he did see the top and bottom of it and it looks 100% healthy - so that was a good thing

So, again thank you! Any other thoughts I would love to hear them!
Posted 12/28/2012 5:14 AM (GMT 0)

momofchildw/uc said...
THANK YOU AGAIN EVERYONE!

Today the doctor was good. Did I mention that he gave us his cell phone number when he did the colonoscopy and told us again today to use it even in the middle of the night if needed.

He said he did see the top and bottom of it and it looks 100% healthy - so that was a good thing

Wow sounds like you have a caring doctor. That's a real help because you will likely have lots of questions and concerns as his symptoms and treatments change over time.

Keep in mind that the vast majority of people with UC end up with a good outcome one way or the other, either through medical management or surgery, which is pretty much curative.

All the best to you and your son.
Posted 12/28/2012 11:33 AM (GMT 0)
Sorry mom for the news.

To those who say 40mg Pred is fine, really folks? The kid is just 10, yes, a baby. I started with 30, when I was 29 and it worked like charm for 5 years. It was the last year when I 'embarked' on 40mg dose.

To mom,
For time being, keep it the way it is but educate yourself thoroughly about meds and dosage used by the folks here. This place is loaded with info and a lot of folks practically 'live' here, so don't hesitate to ask questions. Looks like your doc is a good guy, still its good to be aware of all meds, dosage, side effects etc.

If he is on Prilosec, make sure he gets 1000mcg of methylcyanocobalamin (methyl form of Vit B12) I take http://www.jarrow.com/product/58/Methyl_B-12 and keep taking it for rest of the life. Consider other supplements as well. Don't be a supplement junkie but add them stepwise to see good and/or bad effects of them.

Don't worry about colon cancer. AFAIK, the risks are there but UC doesn't predispose you to colon cancer markedly more than any 'healthy' individual (on standard American diet). Your food choices seem pretty good. Add some fiber like psyllium seed powder.

Have some stock of Bentyl 10mg or 20mg to use it as and when needed. (In flare, you visit restroom quite often, urgency is always an issue. This makes you difficult to stay away from the restroom. In case, he is going somewhere, like school, soccer practice etc, Bentyl will slow down his intestines and he will visit lot less number of times. Also helps with tummy cramps). Also, educate him about the meds.

Finally, what works for me or someone else here doesn't mean, it will work for your baby. Everyone is different and responds differently. You will have to do a LOT of trial and error practice to figure out what works best (and what puts him in flare or upsets his tummy). I STRONGLY encourage you to maintain best records of his tests, results, medications, food habits (and results there of) so that when he takes the 'charge', he knows what his mommy has done for him and where to start from.

Good Luck to your family and esp. your son. I wish him all the best.
Posted 12/28/2012 1:25 PM (GMT 0)
momofchild,

Welcome to the forum.

So sorry about your son having been diagnosed with UC.

It's bad enough when we, as adults get it, but little kids is tough.

You've gotten some great advice here already.

I just want to caution you that a "healthy 100% natural diet" is great for many, but may not cut it for UC. No junk food, and HFCS is great, but if you're still giving him dairy and gluten, which for many IBDers is a real problem, just reducing those intakes and eliminating them may make a huge difference.

How about starting a food journal to see what correlations develop?

In my experience I have found that diet modification, such as going gluten and dairy free, going PALEO ( grass-fed animal products), increasing omega 3's, adding vitamin d3, probiotics, slippery elm powder, l-glutamine, and LDN, low dose naltrexone has enabled me remission.

And if you are interested in seeing how it may fit into your treatment of your son, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 12/28/2012 1:30 PM (GMT 0)
Mom: The Mac and cheese sets off alarm bells/by the way was this homemade.
Some people have problems with wheat/gluten orthers
may have problems with dairy, or both. Perhaps in the future you might try for a month or so a no wheat
/gulten diet and possibly no milk/dairy. Many are helped by the SCD diet,others by a Paleo diet,the doc will probably tell you that diet does not cause UC nor will it cure it,but many here are not so sure.
Old Mike
Posted 12/28/2012 1:31 PM (GMT 0)
Delta 1 mg per kg is the dose used to induce remission. If he weighs around 40 kg (which I'm guessing would be normal for a 10 year old boy) then that's the dose that's used.
Posted 12/28/2012 2:31 PM (GMT 0)
momofchild, I'm so glad the GI is open to your questions and ready to take them at all times! That is great.

your question about scopes is a good one, but it's probably too early to know what that will be. You will schedule scopes based on his symptoms for the first few years, or until you have good control over his illness. Once you've readhed that milestone you and the DR might agree that you can stretch the scope frequency.

I would suggest that once you've gotten the major symptoms relieved you talk to the DR again about rectal mesalamine. It is a very effective tool in managing UC.
Posted 12/28/2012 3:12 PM (GMT 0)
"Keep in mind that the vast majority of people with UC end up with a good outcome one way or the other, either through medical management or surgery, which is pretty much curative."

also keep in mind that there are good outcomes with diet modification, divine intervention, spontaneous remission, etc. -

it's not just an either/or situation -

  

Posted 12/28/2012 3:55 PM (GMT 0)
THANK YOU again, I am loving all this information! It gives me tons to look into and think about. If we can get the hurting and bleeding to stop that will be a great first step. Then it seems like there is tons out there to figure out. Thanks for everyone's thoughts.
Posted 12/28/2012 6:09 PM (GMT 0)
Sounds like a very caring Doctor...glad he is thinking of possibly maintaining on Asacol as opposed to jumping to 6mp at this point. BTW, there is a rectal med, Rowasa that is all mesalamine and NOT steroid,also Canasa which is a mesalamine suppository that can be used for maintenance as well. You may want to discuss this at next visit.
B
Posted 12/28/2012 6:22 PM (GMT 0)
Welcome to the forum. Being diagnosed at 10 must really suck :(. At least it sounds like he is responding to treatment which is is great!
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