Any thoughts concerning son with Crohn's

[Tea]

I could use some suggestions/experiences to try to figure this out

My son was diagnosed nearly two years ago (at age 8 a couple months shy of 9th birthday). He's had a few flare ups/rounds of steroids and has generally doing well (disease located in small intestine).

I'm frustrated at the moment because he's been sickly for almost a month. Doctor ran tests but generally is putting us off until scheduled appointment tomorrow. Labs done (no inflammation or abnormalities found) and stool tests/culture came up negative. He's been having stomach pain, diarrhea, low grade fevers 99.5 - 100.2 though it hit 101.5 last night, his eyes feel like they are burning sometimes and he has canker sores that are painful. He's lost a few pounds through this, is eating little, drinking just enough and needless to say I'm worried. I plan on scolding his doc a bit tomorrow because I feel we've had a bit of a brush off as doctor doesn't feel it is a flare-up and might be viral. If it is a virus it seems to be a little better than the cramps/diarrhea get worse again. The nurse said that the doctor may want to change his meds (next step is 6-mp) but why would the meds be changed if the thought is that it isn't a flare-up? 6-mp is pretty strong stuff and if not necessary...

I've heard that a stomach virus has been going around the area, but for a month?? Please, any thoughts? Suggestions, experiences you are willing to share?

 

[Clash]

Welcome to the forum though I am sorry you had occasion to seek us out. It sounds like all the tell-tale signs of a flare. I know my son's lab work was not indicative of the inflammation going on in his small intestine. I think there are several other parents on here whose childrens' flares didn't show in the blood work. I'm relatively new to the world of CD but I am sure there will be someone along soon who can give you some advice or share their experience! Hope your son is feeling better soon.

 

[izzi'smom]

I am sorry that your ds is going through this! I wonder if sometimes our nurse (who I love, BTW) offers up advice regardless of the doc's opinion, or unbeknownst to the doc. It explains differing opinions much better.
I would hate for it to be a virus, because there is nothing to be done about it. This being said, while a month seems like a long time, I am told our kids tend to suffer longer with things like viruses. WHatever it is, I am hoping you get some answers tomorrow!

 

[Tea]

I've often wondered if IBD kids would be sick longer than "healthy" kids when it comes to intestinal or stomach viruses, I'll have to ask the doctor. I've always been worried how much worse food poisioning would be with all the food recalls one hears about.
I was leaning toward virus myself but the virus theory doesn't explain the ulcers in his mouth. Sometimes I feel that his new nurse isn't as responsive as she should be to concerns. Call backs are often late the next day. I'll be the stubborn insistent mom tomorrow. We need answers and help. If it is viral, he still needs relief. We've been relatively lucky so far where the disease is concerned but can't help but worrying about the day that may change.
My heart breaks every time he says he wishes he had a different body. My heart breaks for all these kids!

 

[Jenn]

Welcome to the board and so sorry to hear about your son. Sounds similar to my son. The couple of times he's been sick, it's been hard to distinguish a virus from a flare and my current thought is that the virus tips the balance with his meds and causes a flare, til he gets over the illness, which often takes longer than usual. Good luck and keep pestering the doc/nurses with your questions!

 

[Farmwife]

I'm so sorry to hear that your young son has to come to terms with and you too. My DD is three and a half (this Saturday) and were still going through the loooooong drawn out process of getting a dx. I do know compared to her brother she takes weeks to get over a simple cold. I hope you figure things out soon.
Welcome aboard,
Farmwife

 

[crohnsinct]

Sounds like you have gotten awesome advice already. I just wanted to say welcome and encourage you to go with your gut...a mother's instinct is rarely off. I too would question why the move to 6mp if the doc doesn't think he is not in a flare.

Good luck tomorrow...go get em mamma!

 

[Farmwife]

Oh have you thought about EN before? It might help him keep the weight on and give his intestines time to rest. Even if it is a virus it might help.

Farmwife

 

[crohnsinct]

Helps with inflammation also...just as good as steroids.

 

[DustyKat]

Hi Tea and :welcome:

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

My daughter was one of those in which tests, blood and otherwise, showed a big fat zero. I am once bitten twice shy with them now and will only trust them if they reflect what I see in front of me. It sounds like your son isn't matching his bloods...the abdominal symptoms, fevers, weight loss, canker sores and sore eyes...it would be a brave call to say he is not flaring.

I guess a virus could last a few weeks but why the extra intestinal manifestations that are common with Crohn's if it isn't?

As Farmwife has said, look into Enteral Nutrition. It is as successful in inducing remission as steroids, there is some conjecture though as to whether it loses some of its efficacy once steroids have already been used. That aside though it has no side effects, assists with mucosal healing and provides all the nutritional needs your child requires. There are numerous products available and is delivered either orally or via a nasogastric tube. Have a browse through the EN forum...

http://www.crohnsforum.com/forumdisplay.php?f=161

and the wiki...

http://www.crohnsforum.com/wiki/Enteral-nutrition

...There are loads of parent's here that have or have had their kiddoes on EN.

Since he has small bowel disease has he had blood levels done for B12, Folate, Iron Stores and Vit D?
If not I would request they be done.

Good luck with the appointment! Stand your ground Mum and demand answers! :wink:

Dusty. xxx

 

[Tesscorm]

Welcome Tea!

I'm sorry your son is so unwell right now! It is heartbreaking to see them suffer and be unable to fix it quickly!

I can't add to the great advice already given but I do urge you to consider EN. I'll just add one more link for you - a thread of Kids on EN.

http://www.crohnsforum.com/showthread.php?t=36345

Good luck! I hope he begins to feel some relief soon!! :ghug:

 

[jmckinley]

I hope you are getting some results at the Dr's office today! It could be a virus, but it sure sounds like the start of a flare to me. My son had all of those things in the beginning: sore eyes, sores in mouth, looked very pale, lost weight.... He is probably not absorbing very well and needs vitamins. I would definitely try the EN like Boost Kids Essentials or something to supplement his calories and give him some easily absorbable nutrition. Sounds like Dr is trying to stop a potential flare, but he said it wasn't one. I will never understand why they want to change/add meds. Our GI did it also "just in case".

Keep us posted on today's appointment.

 

[Clash]

I hope the appointment goes well today. I also wanted to add that my son also had all those symptoms in the beginning(this was the start of searching for the dx) and 3 times in a span of 11 weeks the doctor said he had a virus. Now mind you we had no dx yet but the symptoms matched your son's symptoms. We were even told ulcers in the mouth are what solidified it was a virus with my doctor. Of course, it wasn't a virus and it was the start of a 6 month journey toward his CD diagnosis. So if you feel you aren't getting the support or answers you need keep pushing. Oh and I agree with the EN, my son hasn't been on EN yet but it will definitely be our choice if for some reason the Remicade needs help as prednisone didn't seem to quash C's flare.

 

[izzi'smom]

Oh, and I should have mentioned...I thought Izz had mouth ulcers related to her Crohns but found out it was coxsackie when her friend came down with it a week later. OOPS!!! (and then I realized her teething brother...hadn't been teething. YUP, I got mother of the year covered this year. NO competition!) Have him looked at just in case. She also had a fever and poor appetite. Also, we got magic mouthwash-worked wonders!!

 

[Tea]

Thank you to everyone for the welcomes and thoughts. Saw the doctor Friday and he now feels the disease is flaring up. Adam has blood in the stool which hes never really had as a symptom its usually been pain and fever. He immediately scheduled the little guy for a endosocpy and colonoscopy first thing Monday to see how the disease has progressed and to take another biopsy. We are supposed to have an MRI done fairly soon as well. Looks like we are headed to 6-MP which frightens me considerably. Adam is against it, he asked the doc many questions of his own. I think that surprised the doctor. Doc doesn't feel EN will work as Adam is stubborn and will still insist on his favorite foods which surpringly aren't many. As it is I find folic acid tabs all around the house...not always the most compliant patient. Wish him luck with the halflytely/bisacodyl prep Sunday so that we can avoid the nasal tube as an inpatient.

 

[DustyKat]

Good luck with the prep and the scope!!! Bless him...:goodluck:

Let us know how you he gets on. :hug:

Dusty. xxx

 

[crohnsinct]

Good Luck with everything and keep us posted.

 

[AZMOM]

Yes good luck and here's to some answers!

J.

 

[izzi'smom]

Good luck...hoping you get some clear answers and a treatment plan you are happy with.

 

[jmckinley]

Wanted to wish you luck tomorrow. I am glad that you are on the road to some answers.

A little reassurance...My son took 6mp for 2 years with very little side effects. The only thing I can think of is hair loss which was not noticeable looking at him, but annoying for me cleaning the bathroom. But it helped him maintain remission for 2 years.

 

[Sascot]

Hi, been on hols so not had a chance to say hi. Just wanted to wish you luck with the scopes - I think if we had to do more my son would want the tube (as would I having tasted it!). Hope it goes well.
I am having the same worries about meds as you are. The docs wanted to put Andrew on Azathioprine but his liver couldn't take it, so they are now wanting to try 6mp. I really, really don't want to but don't know what else there is. My son had a peri-anal fistula but absolutely no other symptoms. Now that his wound is healing and he is feeling good I don't want to give the 6mp even more!!
Ah the dilemma's - do I say no and he is fine, or if I say no and he gets worse then I will feel bad :voodoo:. This disease is a minefield of questions with no answers!

 

[Tea]

Hello Everyone,

Adam had his colonoscopy and endoscopy Monday. I was devastated to hear and view the results. Adam's Crohn's used to be located in the Ileum but has now spread further in the small intestine, to the stomach and large intestine along with the mouth sores. We had no choice but to go on to 6-mp which has me frightened.

Adam has been strong throughout this though he had trouble drinking the halflytely - doctor on call said we could use Miralax mixed with apple juice instead and that fortunately did the trick so that we didn't need the in stay with the tube. The doctor always speaks frankly in front of Adam and now Adam has his own worries about 6-mp. He will have his first blood workup on the 31st to see how his body is handling the new drug. He is also scheduled to have an MRE in August to better view his small intestine.

I want to let ALL of you know that I really appreciated all your comments and advice in this thread. Thank you.

Now to ensure the school works with us this year rather than having staff treat Adam as though he was faking being sick even though they had letters and what not from the doctor to begin with.

 

[crohnsinct]

A mother always knows!!! Sorry the results weren't better but at least now you know and can get him treated. All these drugs are scary but not as scary as disease untreated. I hope 6mp does the trick for him and that all goes smoothly!

 

[Tesscorm]

Hi Tea,

I'm sorry that the results were disappointing. However, at least, you can now begin treatment and moving Adam towards feeling better!

I also completely understand your worries re the meds. I am quite sure we will be facing that in the near future and I'm not at all sure how well I will accept it! But, I believe that, in much the same way that we overcame the fear of the diagnosis, we do come to terms with these treatments, become more comfortable with them as the 'newness' wears off and when we see results confirming that our children are indeed getting better!

I hope the results from the 31st are good and that the MRE will also begin to show some improvement.

Good luck! :ghug:

 

[Catherine]

Hi Tea

My daughter has been taking azathiprine since February 2012, and so far appears to have no side effects.

Wishing your son all the best.

 

[my little penguin]

DS has it from end to end as well . Until 4 weeks ago he had been on 6-mp from nov 2011. No real issues. His alt ast numbers had been high so we added allopurinol which did the trick. He is now on methotrexate.
Hope your LO gets some relief.

 

[izzi'smom]

i am so sorry that your sccope results weren't what you were hoping for Hoping that you can find a treatment plan that works for him... :ghug:

 

[Sascot]

Sorry to hear about the results of the colonoscopy! At least now you know that he really needs the 6mp. That is one of my main issues against starting it - I have no real physical signs that my son needs it.
Good luck with it, hope his first week goes well and the blood test shows no issues!

 

[Jenn]

So sorry to hear his Crohn's is worse. Starting 6mp is so scary, but really, it's very easy and totally worth it. I hope he gets good results from it. It helped my son, but never got him over the edge, unfortunately.

 

[DustyKat]

Thanks for the update Tea...:hug:

I'm so very sorry it wasn't better news for your boy, bless him. :ghug:

My two are on 6MP's relative Imuran and have had no problems since commencing it, 6 years and 18 months ago respectively. I hope your son has positive results too and things are soon under control again.

Is he also going back onto steroids? 6MP will take at least 3 months to become fully therapeutic so he will need something to bring things under control until the 6MP has a chance to work.

If he hasn't had levels done for B12, Folate, Iron Stores and Vit D perhaps you could request they be done when he has his other bloods on the 31st??

Have you looked into having a 504 put in place with the school?

Good luck with the bloods and the MRI!

Dusty. xxx

 

[Tea]

Hi everyone,
Adam is feeling a bit better on the steroids and 6-mp. Had his week one labs completed today, results should be available tomorrow. I'm hopeful even though he's on the chemical cocktail.

I wasn't on the past days as we attended scout camp. He tired easily but had fun. His buddies ran around late where he was abed by 8:30. Still the camping was worth it because he seemed to really enjoy it all.

A side question, has anyone tried hyperimmune egg? Just something I read about today. Perhaps I'm grasping at straws. I'd love a natural solution rather than the 6-mp. Don't worry, we are following doctors orders.

Theresa

 

[Tesscorm]

Hi Tea,

Glad Adam is feeling better and was able to enjoy camp!

Sorry, I've never heard of hyperimmune eggs before but will certainly do some googling! If there's a 'natural' opportunity out there... I'll certainly spend some time googling!

Hope he continues to feel well!!

 

[crohnsinct]

Seriously?! We are talking about women who google foreign phrases and junk food here...ofcourse we will google a potential natural way to deal with the disease.

Sorry I haven't heard of it yet but I am super happy he had a chance to enjoy a good portion of scout camp. We are on vacation and O is tiring out very easily but she is happy and that is all that matters to me right now.

 

[kimmidwife]

Hi tea
I am glad to hear your son is feeling a little better. I was also scared and worried about these meds. Someone on the forum told us about low dose naltrexone. It has been a miracle for us. It is safe with low side effects. I highly encourage you to look into it. There is a lot of threads about it and a whole section for it under meds. It is also called L.d.n.

 

[Tea]

I really want to thank all of you from the bottom of my heart. I've finally found a group of people who are truly understanding of all the fear, concerns, pain and craziness that having a child with ibd brings. I've been taking time to research all the different points you've all made. I know I'll be bringing up a lot w the doc next time we see him!