New Here - Chron's & Celiac Mom

[GloMom]

Hello all-

I decided to join today as I am in need of support. My family's journey with the GI started in 2008 with my daughter's lengthy diagnosis of Celiac Disease at age 16 after months of pain. The story of her vomiting and having bloody diarrhea for months is one I don't really want to relive at this time. Finally our GP referred her to the GI Specialist where a quick diagnosis of Celiac Disease was made after a colonoscopy and endoscopy. Our gluten free life began. And with vitamin supplements she does fairly well, although she does still have some abdominal pain. She has a physical tomorrow and will discuss options with our NEW GP (who we adore)!

My son's story began in April of 2010 when he began having abdominal pain, we assumed Celiac although the tTGA test came back negative. We started him on a GF diet and saw some improvement but not like with our daughter. We asked our GP to refer us to a GI...he didn't. Finally I got fed up and called the Pediatric GI my daughter had seen, they got him in immediately. This was in November of 2010. He had his first colonoscopy and endoscopy in December 2010. They found ulcers in his intestine. A repeat endoscopy in Februrary of 2011 confirmed Crohns Disease. He has been on steroids ever since.

His history with medication began with just omeprezole and then Prednisone and Pentasa were added. The prednisone was able to be switched to enticort and he went into remission in August of 2011 but not for long. He spiked a fever of 104 last week and his Crohns is back. Back on the evil drug he went and Ciproflaxin was added. Today the added Methotrexate.

This summer they discovered he is allergic to EVERYTHING in the environment - all grasses, weeds and trees. He started allergy shots 3 weeks ago and takes several allergy medications.

He struggles emotionally as any 13 year old boy would. I typically remain pretty strong but today I hit my wall with the addition of one more medication. Managing medication and his school work is a full time job - I am thankful he is a smart kid! And I'm grateful he was able to be in school today. I JUST WANT HIM TO FEEL BETTER.

Thanks for letting me tell my story. Any support and advice is WELCOME! :sign0085:

 

[Astra]

Hiya GloMom
and welcome

Hope you don't mind, but I've moved you to 'Parents of Kids with IBD' from 'Success Stories', here you will get the support, help, advice and welcome you deserve. Also info on Kids and school, Kids and meds etc.

Glad you found us, we'll all help as much as we can
lotsa luv
Joan xxx

 

[GloMom]

Yes thank you. I posted in the wrong spot! AHHHH! Thanks again!

 

[Sascot]

Hi GloMom
Sorry to hear about your struggles. Just wanted to let you know you're not alone! I hope everything starts improving for you. My son was only diagnosed last week and I am struggling emotionally but so far haven't started down the "medication minefield". Only one failed attempt at the Modulin liquid diet (he couldn't stand it). Would give anything to take the pain away from him.
Keep strong!

 

[Tesscorm]

Hi GloMom,

So sorry to hear of your daughter's and son's diagnosis. It must be very difficult for you. My 17 year old son was diagnosed with Crohn's in May.

Feel free to ask questions or vent anytime; as parents we can all certainly understand the worries and stresses that come when your child is sick. There are many caring and knowledgeable members on this site, parents or not, who will share their knowledge and support. It has been invaluable to me at times.

I hope his medications help him feel better asap!

 

[DustyKat]

Hi GloMom and :welcome:

I'm so sorry to hear about your son and daughter. You have found a fab place for support and info so I hope you stick around so we can get to know you better!

My daughter was diagnosed at 14 and my son last December. I understand, as we all do, how difficult and heartbreaking it is in the early days and months of diagnosis.

It's fab to hear that you have found a GP that you love, good for you! I hope your daughter is able to her residual pain issues under control. I also hope the medication changes work for your son and put his CD into remission. Where is your son's Crohns located?

Good luck hun and welcome aboard!

Dusty. :heart:

 

[Dexky]

I JUST WANT HIM TO FEEL BETTER.

Doesn't that say it all!!!

Welcome GloMom! That's what we all want With you in his corner, he can't lose!!

 

[GloMom]

Thanks to you all! It is so good to be able to talk to people who GET IT!
:dance::dance:

When my daughter was first diagnosed with Celiac I was a wreck, had so much to learn and so little support, but gradually I found the support and the answers. I felt more secure when my son began his troubles, not because they were any easier, the Crohn's diagnosis was actually much worse, but because I had come a little father in my ability to be my children's advocate. The latest achievement in that area was firing our GP and finding a new one that LISTENS and really seems to "get things" we have had a FANTASTIC GI Specialist but the GP needed to get on board and now that we have one that is it has been much better for all. Nothing illustrates that point more then the fact that my soon to be 19 year old just finished getting her first routine sports physical (she plays college softball) with our new GP. She was there 30 minutes because he listened to her and he made a referral for her to go to an adult GI specialist. With Celiac, once the diagnosis is made you don't follow up with a GI but the GP handles things. Our new GP is concerned that she may too have Crohns but that it has gone undiagnosed as she has just "gotten used to it" and assumed that it was part having Celiac Disease. He asked her questions and she answered - reporting that she still has episodes of bloody diarrhea and periods of joint pain. His take was that with her brother's recent diagnosis she should be seeing a GI and evaluated. THANK YOU! THANK YOU!

Dusty - my son's Crohn's is mainly in his small intestine, although he has had severe inflammation throughout his intestines. He is supposed to start methotrexate as soon as the pharmacy can get it in, should be today. I don't kow why yesterday this "new drug" made me just feel so out of control. Is it because it's a shot? Or is it because we were a week from getting off of steroids (weaning down to one more week of 1 Enticort) and then BAM back on 40 mg of Prednisone a day. So the new drug felt like it was a "well we better try something else to get this under control!" I'm not sure....does anyone have any feedback on this drug?

Thanks so much for any feedback! :sign0144:

 

[Crohn's 35]

I Glomom, my goodness two in one family. I am 1 of 5 sibs who have a form of IBD and gerd. Just to let you know with being on Pred, nexium types of antacids, to make sure your kids are getting a good dose of Calcium for their ages, and Vitamin D3 to absorb it. I have been on all the meds your son is on. Have you been suggested Humira? I have my crohns in the Ileum as well and that is were absorption is lost. Methotrexate is a shot (or pill but harder on the gut) and must take folic acid for the reduction of nausea. I am surprised they are keeping him on so many drugs at once. Prednisone in my opinion is a bandaid on the problem til you reduce the dosage,and it comes back. Incidently if your children are on Cipro, calcium cancels it out, so any meds or vitamins should be taken 6 hours before or 2-3 hours later. Hard schedule I know. Hang in there, we can help as much as possible, but always check with your doctor and any changes. Blood work is crucial whilst being on Metho. Hugs!

 

[GloMom]

Pen-
They both take the Vit D but not calcium, so I will look into that. Humira has not been suggested to us yet...sigh

Dylan requested the shot of methotrexate because he hates taking pills and didn't want anymore. He will take weekly. 3 of his medications are for his severe allergies that affect his Chrons. The doctors know the Pred is the bandaid and they are trying to get the right combo of pills to get him stablilized to get him off the pred. He got a cold last week that triggered the high fever/infection and brought the chrons back - that is when he went back on pred and they put him on Cipro, he will be off the Cipro this Thursday. We will wait to start the calcium after that. They are worried his immune system is overactive - enter the methotrexate.Right now I'm thrilled with our medical team so fingers crossed things will be looking up!

 

[dannysmom]

Pen-
He got a cold last week that triggered the high fever/infection and brought the chrons back -

Hi and welcome. My son is 14, but is undiagnosed so far. Colds always seem to make him worse too. I hope your son feels better soon. My son finds playing video games very distracting from his pain. He is online with WOW (world of warcraft) and has many remote friends

 

[DustyKat]

You should be able to find Calcium and Vit D combinations as Vit D promotes calcium absorption in the gut. Sarah takes hers this way and I am working on Matt at the moment...

Dusty.

 

[vness1208]

hello and welcome Im srry for what you & your family are going through.. I really dont know much about these medications but just want to say as a parent, I know how you feel & you are def not alone. I hope everything works out for your son and daughter & they get the treatment they need. Hang in there..

 

[Jennjenn]

Hi welcome

I am glad you found the forum. I am sure you will find plenty of supporitive empathetic people on here! I feel bad for what your family is going through.

 

[GloMom]

Thanks Jennjenn and Vanessa

Dusty you are definitely living up to your awesome reputation on this forum! Thanks so much!

I had a bit of a scare when I picked the Methotrexate from the pharmascist last night as he gave me the "warnings" it was great that when he talked with me about Folic Acid which my GI had not, unusual for him to miss something, but wasn't shocked at I had learned about the Folic Acid and Methotrexate combination here.

Jeanne my son has also found that video games are very helpful in helping him cope - he is an xbox gamer.

THANKS TO ALL!