My 2yr old has UC and is allergic to the Sulfa in Anti- Inflammatories

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rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/17/2008 1:40 PM (GMT -6)   
Hi,
 My 2 yr old son was diagnosied with UC in Apr of this year. It's been a long road trying to find a MD that listened to me about his symptoms. At 6 weeks old he had surgery for pyloric stynosis, then at 9 months he had bi- lateral inguinal hernia repair. He has always had feeding difficulty and had watery stool since the day he was born. He would move his bowels up to 15 times a day. His Ped told me I was over critical because of his surguries. I always was told it would pass, but I watched him lose more and more weight. I demanded he be seen at least by the local feeding clinic in our Children's hospital. They told me he had reflux and put him on Zantac and Vital Jr( nutrional supp) I was told he had toddlers diarreha etc. at his 12 month check up it ended in a screaming match between myself and his Ped she didn't want to listen that there was something more going on. I changed Ped's, in the mean time the blood in the stool started and he would even eat baby food . He looked like one of those starving children on TV with the watermelon stomach and you could see his ribs. his new Ped spent the first appt with us for over an hour. She ordered tests and sent us to a wonderful GI dr. So we finally got our diagnosis after an Endo and Colonoscopy. We found out he is severly allergic to the Sulfa in the Sulfasalyzine his fever spiked to 106. Now we only have him on Probiotics for now. As of now I'm waiting for his next flare up, but he seems to be doing good so far. He's so you I don't want to see him on Steroids which might be the next step for his next flare up anyone have similar problems or know of natural ways of dealing with UC? Any input would help

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/17/2008 2:33 PM (GMT -6)   
Oh your poor baby. My heart breaks. I would take him to the absolute best hospital and GI you can find. Where do you live? Maybe someone can give you good recommendations. Well, I just re-read this and it sounds like you like your GI. Good luck to you. You could try activia yogurt and try spinach. It sounds like he needs some serious help. Hang in there and don't give up, he really needs you!
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/17/2008 2:56 PM (GMT -6)   
Thanks for replying. I love his GI he is straight forward with me. I live in Buffalo NY his Gi is in Rochester which is about 2 hrs away but he is worth the drive. During the Endoscopy we found out he was Lactose intolerant so unfortunatly we  can't use the Activia. Before we found out he was Lactose Intolerant all he would eat was yogart and cheese little did we know that was contributing to his issues. I buy the soy yogart  and Rice cheese but he won't eat it I think he remembers that it didn't make him feel good so he has this fear of eating it now. He doesn't eat enough to sustain him on a daily basis as it is. He still is eating 2nd stage baby food and foods with that consistancy. I just wish he could communicate more with how he feels. He will go all day without asking for food or eating then when he has a flare up it's worse I can't get him to drink his nutrional supplement

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/17/2008 3:00 PM (GMT -6)   
My heart goes out to you and your little one, it's bad enough to deal with this as an adult. There are other drugs out there that do not have sulfa in them. I believe Asacol is one of them ( but I'm not totally sure), have they tried that yet?
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/17/2008 3:03 PM (GMT -6)   
I've been seeing alot of different meds people are on one is folic acid has been frequent can anyone tell me why they are on that besides the other ones?

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/17/2008 3:12 PM (GMT -6)   
folic acid is prescribed in conjunction with Sulfasalazine because the sulfasalazine decreases folic acid (B vitamin) absorption. So, folic acid is not a med that is prescribed for someone because they have UC.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/17/2008 3:12 PM (GMT -6)   
I hope that made sense
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/17/2008 4:28 PM (GMT -6)   
Rocal, I'm sorry your little guy is having to deal with this. Sulfasalazine is not the only drug available to treat UC. The majority of people with UC take drug in the 5-ASA family. These are anti-inflammatory but contain no sulfa. I've seen some of the parents here talk about doctors prescribing Colazal because they can open the capsules and mix the medication with applesauce or the like for those too young to swallow pills.
 
You may also want to visit this site, which was developed as a support board for parents of children with IBD:
 
 
I hope your son is feeling better soon. Keep us posted, we'll all be thinking of you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/17/2008 5:38 PM (GMT -6)   
Thanks munchkidd that made perfect sense

JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 7/18/2008 3:01 PM (GMT -6)   
So sorry about your little one. I have two kiddos with UC. My son has been on sulfasalazine for 6 years. My daughter is allergic to it and takes Colazal instead. Both kids have taken prednisone and it can be nasty, but I can help as well. about the only thing "natural" we do is take probiotics.

Check out the dragon pack link listed above. It is a wonderful resource for those with children with IBD.
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/18/2008 4:25 PM (GMT -6)   

Thanks keylime,

How do you manage having 2 kids with it? I'm so scared to try a new med on him he's been having horrible reactions to different meds. I'm taking him to the allergist next week to try and pinpoint any other allergies before we find out in a non controlled way. The GI said depending on the severity of the next flare up he might try the steriods I'm trying to avoid that at all costs I know they can be nasty I was on them when I was younger for allergies. Did your kids have symptoms early on or was it sudden?


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 7/18/2008 8:42 PM (GMT -6)   
Rocal, I was emotionally/mentally devastated when my youngest was dx just last summer. At that time my son was coming off the worst flare of his life (lasted 13 months) when my daughter was dx. Thankfully both are doing well and have been since August '07. Sometimes I just get a wave of panic that floods over me with the reality of what could happen. I just try really hard to live in this moment and one moment at a time. Anything more is too much.

My son started with symptoms around the time he was in kindergarten. There would be little bits of red in his stool. I read in a baby book that it is almost never blood, but more likely something that the child ate. It never lasted more than a day or two. Then for the two summers before he was dx'd he had loose stool with flecks of red so I called the doctor. Both summers they said it was surely not blood, likely a virus, etc. Finally the summer he was dx, I took a specimen in myself and they were like, oh yeah, that's blood.

With my daughter you'd think I would be an expert (she is 7 years younger than her brother), she first showed blood at 7 months of age. Doctor agreed it was blood, but said it was likely just from an anal fissure from straining (strange thing is she was breast fed and had the mushy stool of a breast fed infant and didn't need to strain). From time to time through out her childhood she would have a bit of blood and mucus, but never loose stool and even my son's GI didn't think is was likely to be anything. Finally last summer it became more frequent that she had blood and then just a bit of slightly loose stool. Took her in for blood work and it was all out of whack (sed rate up, red counts low, etc.). Colonoscopy showed pancolitis.

Prednisone seems to be harder on my son than on my daughter. He had horrible headaches, hair loss on his head, hairiness on his body, extreme stretch marks, weight gain (which this last time he desparately needed), depression, etc. My daughter just had increased hunger ( and a massive craving for mustard -ate it on everything!!!), a bit of moodiness, hairiness - thankfully no noticeable hair loss or stretch marks. Thankfully both have been able to wean off without becoming dependent on them.

Thankfully, my middle child (daughter, 13) does not show any signs of it!!!

{{{{{hugs to you and your baby}}}}}}
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/18/2008 8:55 PM (GMT -6)   
Thanks keylime I'm so glad to have found this web site. The blood started with my son only in Febuary I took the diaper in with me and his Ped told me staright out that it was a high probablity that is what was wrong with my son. It was another month before he could get in with the GI so it was a very long month of waiting and wondering. The GI told me after his Colonoscopy that he felt it was that but he was waiting for the biopsy's. More and more I go through with him I get so mad at his first Ped that didn't want to listen to me that there was something was wrong but then I take a step back and remember things happen for a reason and in it's own time so this is all happening for a reason I don't know why now but hopefully later on I will see it. My little bear is such a happy boy he's going to be the class clown I see it. Even on his bad days he still can entertain everyone.

ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 7/18/2008 10:06 PM (GMT -6)   

So sorry.  My daughter was diagnosed at 5.  I was told by the Dr. at Childrens in Philadelphia that yogurt was OK if you can't have lactose, please check with your Dr.  Please also give him extra calcium, pred sucks it out of your body.   I also give my DD omega 3 supplements, this helps with inflamation.  Folic acid, help prevent colon cancer.  Vitamin D supplements.  She eats and drinks yogurt and cheese all the time.  I give her lactose free mild.  Also give her fibre cookies.

Stay in the moment.

 


Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/19/2008 8:32 AM (GMT -6)   

Thanks ithurtsmom

I've bought soy yogart but I think he remembers that the other stuff bothered him because he see it and he runs saying no no. He goes back to the GI in a month so I'll ask about the folic acid and omega 3. You know you mentioned about colon cancer I've been doing so much research onthe subject of UC and the more I read I get more scared for my son. Pretty much everything I've read says his chances are high to develope it because he's been diagnosed so early. Then I've read that kids can live a decade before having to have some kind of surgery, when I think about it he'd be 12 I can't imagine him having to have that kind of surgery so young. Anyone have any of the surgeries? Are they better? Anyone have any postive to say about treatments? (haha some how I don't think there's any postive out of the drugs.)


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 7/19/2008 1:22 PM (GMT -6)   
rocal:  Bottom line, it sucks that our kids have this, but a lot of people live full lives without surgery (30% need surgery, that's 70% chance he won't) and only have occational flares that they get under control quickly.  I once read that the folks on this sight tend to be worse off then most and that each person is different, everything you read about won't happen to your child.  I still worry all the time, but keep in mind to take it day by day and live in the moment (or you could go crazy).  Not everyone with UC developes colon cancer, the more flares the more damage, but they will be on top of it.   Over time the fact that your child has a disease will get easier to handle.  Anytime your child says "my tummy hurts" your heart will drop and you will want to look at his poop tongue , this is just the way it is around here.
Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/19/2008 1:33 PM (GMT -6)   
Yeah eveyone looks at me crazy when I check out his diaper or the people watching him I'm always asking if it was a formed bowel movement or loose, does it smell. My sons father is in total denial and won't talk about it at all. So trying to get him to tell me anything when he has him is like pulling teeth. I'll ask if there was mucus he'll ask what does it look like. I explain but I think he tunes me out. When my son is having a flare up his father won't take him which is probably for the better that way I can monitor how he is. I am noticeing when he starts with a flare up he stops eating. My son has always had eating problems but there different I see when he's having a flare up. I guess it just knowing your child and paying attention. Right now it's hard because he doesn't communicate well so he can't tell me exactly what hurts. He gets speech therapy and occupational therapy for his feeding issues he doesn't eat certain textures. He mostly eats soft and pureed still. He gets alot of joint pain does anyone elses kids or themselves get joint pain? Anyone else know of the loss of appitite or only liking certain textures?
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