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[jveuleman]

My 9 year-old daughter was diagnosed three weeks ago, during a trip to the emergency room, and after at least 4 years of symptoms. At first, they were giving her nexxium, stool softeners, Miralax, etc. and saying "she's probably just stressed out" because we're a military family. Then, someone took her symptoms seriously after we changed locations and providers. They found H. Pylori in her first scope. First round of treatments wasn't successful, so we did another round - which I understand is fairly common with that bacterial infection. She was asymptomatic for about two months, then the pain came on again and never left, save for a week here and there.

She always had odd symptoms for being such a tough kid (has broken bones and only whined about it): fevers out of the blue, complaints of this and that hurting, headaches, trouble with vision, out of breath...probably more that I just can't remember right now. The CT scan showed the evidence of Crohn's damage in her colon. Ok. There's our answer...now come the questions.

It's taking a while to get her into the pediatric GI specialist. In the mean time, I've changed her diet to a low-fiber, low-residue one. She isn't bothered by it, but I'm having a hard time coming up with exciting foods for her. We'll learn that as time goes on, I'm sure. Perhaps people on here can help me with the following: I want to build her body up so she's stronger to fight future flares. At 9, she's 4'10" and 60 pounds (I'm sure not an unusual ratio of ht/wt). She gets tired easily, and if she does too much it seems like she runs a fever, feels awful, but it doesn't necessarily cause her to complain of any pain in her abdomen. Do I let her be as active as she wants to be and end up feeling cruddy, or do I limit her to try to prevent her feeling awful? :confused2:

I have a lot of questions, of course, but will limit it for now to just that topic. I can control her diet, but wonder about her activity. I hate to not let her be a "normal" kid, but I also hate that she feels so awful when she seems to do too much.

I am so glad I found this forum as there's not a support group in my area (may have to fix that; I live in an urban area which even has a Pediatric Crohn's Clinic).:confused2:

 

[David]

Welcome to the forum, I'm glad you joined I'm so sorry to hear about your little one. That must be so hard

First off, we have a forum for parents of kids with IBD. I suggest you take a look at make yourself at home there. The parents in that forum are absolutely amazing, extremely supportive, and know exactly what you're going through.

With that said, some questions for you How were her blood tests? Did they show any signs of anemia? Did they test her vitamin B12 and vitamin D levels (both of which people with Crohn's Disease are commonly deficient in and B12 deficiency can lead to some of what you describe in your daughter).

As for the activity, my inclination is to let her be a child but I think I would listen to the parents in the parents of kids forum much more than what I have to say. They have firsthand experience in that regard.

All my best to you, your little one, and your family. We're here for you 24/7.

 

[Crohn's45]

I am so broken hearted a nine year old child has to endure this. if there is any advice I can offer please dont hesitate to ask me any questions and I will try my best to offer the best answer possible. she is lucky and blessed to have loving and caring parents so this is a huge great start. big hugs;
Glen

 

[Ihurt]

I am so sorry your little girl is having to deal with all this, that is so unfair. I also have H-pylori and am starting to have gastritis issues from it. The antibitoics do not have a good success rate, only 30% of people will actually get rid it. I have not treated mine due to being allergic to all the meds they treat it with, that and because the success rate is so low when it comes to actually getting rid of it.

Have you ever considered taking your daughter to a natrual doctor? There are natural things out there that can help with the gastritis such as manuka honey, extra virgin pine nut oil, mastic gum. You can google these things online and read up on them. I have used this pine nut oil made by siberian tiger naturals. If you go to their site you can read about it and how it can help with the h-pylori. This is an option, that is if your daughter is not allergic to nuts or anything. The honey is safe, and it is also used in helping with the h-pylori and also in aiding in getting rid of infections. My good friend developed a bad bleeding ulcer in her duodenum and she has had great success with using these produucts. She aslo uses DGL( degycerized licorice), but I would ask your daughters doctor if it is ok to give her that first if you ever wanted to try it. PPI's like nexium and prilosec are really not good to take for very long. It is like a viscious cycle from what I was told by an intergrative medicine doctor. She told me that when you take these PPI's it stops the production of acid in the gut, but then the gut sends the message to the brain saying there is not enough acid and then the brain tells the gut to produce more acid so it is just a viscious cycle. You need acid in the gut to digest your food as well as protect the digestive tract from harmful organisms and viruses.

Anyhow, again I am so sorry she is going through all this. I would definitely get another doctors opinion. I also would let her live as much of a normal life as possible or whatever she can tolerate. I know when my son was little he had BAD asthma. There was a point where I would not let him run around and play in fear he would have a bad asthma attack. His doctor told me that I had to let him be a kid, let him run around. She said that yeah, he could have an asthma attack, but there is meds to treat him with if that should occur. She told me it was worse to not let him have as much of a normal life as possible. My heart goes out to you, I hope you can find all the answers you need to get your daugther healthy again...

My 9 year-old daughter was diagnosed three weeks ago, during a trip to the emergency room, and after at least 4 years of symptoms. At first, they were giving her nexxium, stool softeners, Miralax, etc. and saying "she's probably just stressed out" because we're a military family. Then, someone took her symptoms seriously after we changed locations and providers. They found H. Pylori in her first scope. First round of treatments wasn't successful, so we did another round - which I understand is fairly common with that bacterial infection. She was asymptomatic for about two months, then the pain came on again and never left, save for a week here and there.

She always had odd symptoms for being such a tough kid (has broken bones and only whined about it): fevers out of the blue, complaints of this and that hurting, headaches, trouble with vision, out of breath...probably more that I just can't remember right now. The CT scan showed the evidence of Crohn's damage in her colon. Ok. There's our answer...now come the questions.

It's taking a while to get her into the pediatric GI specialist. In the mean time, I've changed her diet to a low-fiber, low-residue one. She isn't bothered by it, but I'm having a hard time coming up with exciting foods for her. We'll learn that as time goes on, I'm sure. Perhaps people on here can help me with the following: I want to build her body up so she's stronger to fight future flares. At 9, she's 4'10" and 60 pounds (I'm sure not an unusual ratio of ht/wt). She gets tired easily, and if she does too much it seems like she runs a fever, feels awful, but it doesn't necessarily cause her to complain of any pain in her abdomen. Do I let her be as active as she wants to be and end up feeling cruddy, or do I limit her to try to prevent her feeling awful? :confused2:

I have a lot of questions, of course, but will limit it for now to just that topic. I can control her diet, but wonder about her activity. I hate to not let her be a "normal" kid, but I also hate that she feels so awful when she seems to do too much.

I am so glad I found this forum as there's not a support group in my area (may have to fix that; I live in an urban area which even has a Pediatric Crohn's Clinic).:confused2:

 

[Angrybird]

Hello there, I just wanted to say welcome and send my best wishes to you, your daughter and your family. I can only agree about checking out the above mentioned forum as there is such a great of people here who can truly empathise with the difficult decisions you have to make as a parent.

Really glad you have joined us and I hope your little one can be feeling tip top soon.

xx

 

[Jessi]

Hello and welcome to the family. :hug:

My heart definitely goes out to you and your family. I have UC and my 11 year old daughter is now showing signs that she may have it as well. I know how difficult it is to see your sweet child going through so much. I also understand Tricare. We are fighting with the military doctors to take her health seriously. I've decided that I'm going to demand a referral for a specialist.

We DO have a support group here in northern Utah!! We meet once a month and we're growing. We'd love for you to join us.

Just know that you're not alone at all.