Crohn's Disease Forum » Your Story » Here for my daughter


04-18-2011, 10:19 PM   #1
ginnylee
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Here for my daughter

Hello. I'm hoping I can find some answers here. My daughter is having a lot of problems and I'm about at the end of my rope.

Four years ago I was diagnosed with psoriatic arthritis. I found a board similar to this and found a wealth of knowledge and support. Now, I'm seeking out the same for my daughter.

She is 14. She was born with a milk protein allergy. After months of switching formula and enduring hours of painful cries, we finally put her on Nutramagen (a completely synthetic formula). She got much better. We were told she would grow out of the allergy within the next couple of years. Well, to this day, she will get very sick if eats dairy.

Our family has a history of autoimmune problems. As I said, I have psoriatic arthritis. My cousin has Crohn's so bad that he had to have part of his intestines removed or he would have died. A cousin on my husband's side of the family has Celiac disease.

My daughter had mono in the fall and the flu at Christmas. In January, she came to me and said she was having a lot of pain in her stomach and diarrhea. She has had stomach upset off and on her entire life. We always thought it was the allergy. So, like before, I assumed she could be getting too much dairy in her diet from cooked foods, etc. We got very strict about her diet. The symptoms persisted. She didn't want to go back to her pediatrician because she felt like she was too old. (She does look a lot older than her age.) So, I tried to find a general prac. that would take her. Much to my surprise, none of the general prac. in our town would see her because of her age. Honestly, I was just looking for a referral to a specialist because I knew we needed something deeper. I took her to a walk-in clinic and told them I needed a referral. They called Children's Hospital in Birmingham (we're in Alabama) and set up an appointment. The first available was in April. This was February!

In the meantime, the clinic decided to send her for a CT scan. They found a functional ovarian cyst. They called me with the results and told me I could cancel the appointment with Children's because the cyst was the problem and that I should follow up with her ped. I did not cancel the appointment because the pain she was experiencing was in her stomach area - not anywhere near her ovaries!

I did follow up with ped the next week. She said she believed the cyst was incidental and not the true cause of the pain. She said we should certainly keep the appointment at Children's and ordered a series of tests that she thought would be helpful - bloodwork (including tests for rheumatoid arthritis, celiac disease, et.c), an ultrasound of her gallbladder (my husband had to have his gallbladder removed) and a stool sample to test for h. pylori. All of that came back normal. Her white blood cell count was just slightly below normal.

Our appointment at Children's was last week. We took a disc with the gallbladder ultrasound and the CT scan on it. The clinic and the ped. faxed copies of their test results. We've started on another round of tests. They did more bloodwork that day. We received a call saying all of that was normal. She went today for an upper GI small bowel follow-through. The person doing the test remarked that she had acid reflux. She goes back on June 1 for a lactose breath hydrogen test and another meeting with the doctor. If we don't have an answer at that point, she will probably have an upper/lower endoscopy. Our current plan of action is to treat her as if she has irritable bowel syndrome to see how that goes. She is taking Levbid and Omeprazole. So far, no results from those meds.

In the meantime, she is suffering. She's missed a lot of school and we're all stressed. Here are her symptoms - related or not - as of now:

1. Pain in her abdomen. She holds her had on her left side just below her rib cage. Sometimes you can see her cringe. The pain can be sudden or constant. She's also sore to the touch in that area.
2. Diarrhea every few days. She lost weight in January/February, but seemed to gain it back in March during a time of fewer symptoms.
3. Fatigue. This seems to happen with the other symptoms.
4. Nausea and vomiting during the more severe episodes.
5. Pain in her hands. Again, it seems to get worse when the other symptoms are present.
6. Her feet and hands randomly turn blood red for no apparent reason.
7. Headache.

Tonight she is on the couch with all of the above.

(I should also note that she has not had any irregularities with her period because of the cyst. Everything seems normal.)

I know you probably think I should just wait and see what the Children's Hospital concludes. However, I'm not the world's most patient person and I'm almost in a panic because I can't do anything to help her. That's why I decided to find this board. At least I feel like I'm doing something. It seems we are going through test after test with no answer. I guess I just want to know if any of this sounds familiar to any of you. Any suggestions or insight you can give me is greatly appreciated.

Thank you.
04-19-2011, 08:38 AM   #2
ameslouise
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Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hi Ginny and welcome.

It must be so hard to see your daughter in so much pain. As parents, we would all take their pain if we could!

There is a special thread for parents of kids with IBD. Take a peak over there. You will find tons of very kind and knowledgeable people. They might have some advice on how to handle things until you hear back from the Children's hosp.

Good luck. I hope she is able to get a dx soon and find some relief.

- Amy
04-19-2011, 03:50 PM   #3
xJillx
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Location: Pennsylvania

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Hi Ginnylee and welcome! I am so sorry your daughter is suffering so. It must be very hard on you to see her in such pain. Some of her symptoms do sound like IBD, but I am sure they could be caused by something else as well. I have a few suggestions that may help get the most of your upcoming appointment:

1. Do your homework (testing, treatment, etc.) about IBD, so you have more background knowledge on the subject.
2. Have a list of symptoms prepared. Perhaps even start making a daily log of what your daughter eats & how it effects her, bathroom habits, how she feels, etc.
3. If possible, have someone else attend the appointment with you two. It's helpful for someone else to ask questions you may not think of and to retain information you may miss.

I wish you luck! Please let us know how it goes.
__________________
Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
04-19-2011, 04:12 PM   #4
Jer's Girl
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Location: Albuqerque, New Mexico
I'm so sorry for what your family is going through. I can't imagine watching anyone i loved go through this, let alone my own child.

It does sound like it could be Crohns to me, but of course I don't know for sure. I have had all of those symptoms except the red hands and feet. I did have a lot of pain in my hands when I was younger.

Hang in there, and I hope you get some answers soon! Welcome to the forum!
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-Nicole
04-19-2011, 08:35 PM   #5
ginnylee
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Join Date: Apr 2011
Thank you all for your responses! I'm taking note of everything you've told me. I found through my own experience with my Psoriatic Arthritis that there is no greater source of information than those who have suffered.
04-21-2011, 05:37 PM   #6
PnaG
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Join Date: Apr 2011

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Hi Ginnylee
From one mother to another that has a child suffering and in pain, my heart goes out to you. I so understand what you and the family are going thru.

The red hands/ feet I havent heard of before with my sons Crohns, but I did see that written somewhere, did you google that as a symptom?? I'm sure you did, but just incase.

Were you comfortable with the doctors at children's hospital?
Best wishes on searching for your results.
*** Phyllis
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