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Crohn's Disease Forum » Your Story » All of a sudden one day.....


04-18-2015, 12:34 PM   #1
DennyRay
 
Join Date: Apr 2015
Location: Sheboygan, Wisconsin
All of a sudden one day.....

On 3/17/15 my 17 year old daughter came to me stating she had Diaherra for a month. Rated stomach pain a two. No other symptoms. Going to school. Working after school job. Called pediatrician and was told there was a three week flu with loose stool going around. 2 days later, on 3/19/15 called doctor again. Now, low grade fever, but overall daughter still doing okay. Doctor says flu. 3/20/15 insist upon appointment because I just feel it is worse than the flu and daughter started throwing up. On 3/20/15 doctor runs blood work and does exam. He says based on her symptoms and prelim lab results he thinks she has UC, crohns or celiacs disease. Sends us home with anti nausea pills to wait for rest of results of blood work. Over the next 5 day days daughter "breaks". Sleeping, getting up to go to the bathroom ever hour, all day/night. Nothing else. Lost an incredible amount of weight. Not throwing up but I have a hard time getting any food in her because I can't get her to stay awake. Obviously no school. Took to the doctor 3 more times in the 5 day stretch. She also now has the common cold on top of everything. Got doctor to IV hydrate her once. He denied it the other two times stating it was unnecessary. Test results came back and he sent us to Children's Hospital for an exam the next day. Within 5 minutes of the exam they tell us they are admitting her into Children's for at least a week. At Children's they try to do a colonoscopy but it is so inflamed they can not get around first bend without fear of perfing her intestine, so they cannot complete the exam. Did the endoscopy from the other end. Did X-ray, MRI, everything. End result: ulcers from throat to colon. No fistulas or blockages in what they can see. Small intestine appear to be in good shape. Believe it to be crohns but will have to confirm once they complete the colonoscopy. She ended up in Children's 11 days. Blood transfusions. Tube down nose. Antibiotics IV's. IVs of potassium, magnesium, etc.... Major rehydration and then her body started swelling. She had on average 18 liters of loose stool a day when we got there. She was vaccinated as a kid but broke out in a rash and they thought chicken pox so here comes the infectious disease team and full protective gear. Ended up fine. Had eye inflamation. Here come the optomologist team for epaslaris (sorry spelling?). Ended up fine. The doctors were incredible at Children's. Now the issue is treatment. They decide to go straight to remicade because they need something to react fast. Afraid to treat because she still has the bad cold and tests for chicken pox, TB, etc...are not back. Finally do remicade. Most test results back and the risk of waiting outway the risk of not acting. Daughter still sleeping, only getting up to go to the bathroom. Day after Remicade: daughter wakes up, looks at me and says my stomach hurts. My heart sinks. Daughter says "I am hungry". Joy! Within 24 hours daughter complains to doctor because the kitchen will not give her corn dogs. Doctor said give the kid corn dogs ! They had to hook her up to more iVs to deal with Refeeding syndrome and regulate her electrolytes, but they couldn't take the slower route of slowly increasing her calorie count. End result: been out of the hospital since 4/4/15. Went back to school on 4/6/15. School has been awesome. First remicade, after hospital on 4/14/15. Next one planned 5/14/15 ( building dose). Future ones planned hopefully every 8 weeks. Daughter is back to sassy self. Eating well. Doctor wants her on 3-5 ensure a day. Eat whatever but stay away from popcorn and nuts for now. Still loose stool but hopefully over time.... Back to work. Gaining weight. Getting caught up at School. I am very hopeful. Sorry this is so long. My fear. We never caught it the first time and children's said she was probably in a flare 7 plus months. What happens if we miss it again? I know she will have regular GI apps and blood work but I am so paranoid now. Thanks for listening.
04-18-2015, 12:55 PM   #2
theresad
 
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Thanks for posting your story. My son was diagnosed about the same age - several months of diarrhea before he even told me about it. Who knows how long it had been going on. I believe there's really nothing you could have done differently, especially because kids that age can be less than forthcoming with their parents, esp. about stuff like that

And I remember having the same feelings you're describing - scared to death and panicked one minute, and 'joy' when they feel better and are eating. It's a crazy thing, and it's not easy I won't lie. It's so hard to see your kid have to go through something so devastating, confusing, and painful. But at that age you have to try to give them some space to live - I'm still working on being good at that

One of the things that I have to continue trying to do is encouraging my son to be vigilant with his own symptoms, so that he can try to make connections with what he eats/does/etc. with problems. The more they can take responsibility for keeping an eye on it, the better. They know best how they're feeling, and for better or worse, this is happening to them personally so they're the best ones to keep an eye on it.

It's hard, because they want to be teenagers and at least for my son, he is just annoyed to have to deal with this ridiculous disease, and even more annoyed when I get obsessed with it. But what can you do.

The first year of Crohns we labeled it "Butt Watch 2012" in our house.....
We found that humor really helps

Best of luck to you and your daughter and your family. It's a long road, but your support is going to make all the difference.
04-18-2015, 12:58 PM   #3
valleysangel92
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Hello! Welcome to the forum.

I was only 2 years older than your daughter is now when I was diagnosed, but I had symptoms from 15 so I can relate to trying to juggle school etc with being sick.

I'm so glad you finally got the help you needed. Sounds like things were going downhill fast so it's a good job you finally got to the children's hospital and got remicade started. It's something that's been shown to make a big difference in a lot of people and there are studies that suggest that using remicade in the early treatment of younger patients might change disease progression.

It's great to see your daughter is doing well now, and getting back to being a sassy teen.

I totally understand that feeling. It was a long time for me from disease onset to getting diagnosed. So it's always been in my mind that things could be missed again, but as time goes on I've learnt the little signs and indicators for me as an individual. These are different for everyone and can be really subtle, but you and your daughter will be able to see them over time.

Now that she's diagnosed, it should mean that whenever she reports symptoms, they should be fully investigated. I used to have trouble getting anywhere with some GPs and hospital docs but things usually move much faster now I'm diagnosed and under the correct team.

It takes time to adjust and get used to things, but you will learn what to look for and you'll learn when it's time to seek help.

Try and encourage her to come to you as soon as she notices something different in the future, it can be embarrassing for teens but it can make a lot of difference.

If your daughter would like to connect with people who can relate and who are near her age then she's more than welcome to join our teen forum or the young adult support group. If she'd like some one on one chats shes very welcome to contact me, either through here or I can provide an email address to contact me on.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-18-2015, 03:17 PM   #4
24601
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Join Date: Dec 2013
Location: London, UK
With such a sudden onset leading quickly into a severe flare I can certainly understand your anxiety. There is good reason to believe that with close monitoring from her GI doing bloods, scans and perhaps also fecal calprotectin tests that they will catch any signs of a flare early and that it will not be as bad. I know that it is very worrying and you are quite right to think that her disease should be closely monitored. There's an amazing Parents of Kids with IBD sub-forum here where I know you'll find lots of other parents (of kids your daughter's age too) dealing with similar fears and you'll get lots of advice and support.

So good to hear that your daughter has had such a fast turn around on Remicade
04-18-2015, 07:06 PM   #5
wellen1981
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Hell of a story, I don't think you or your daughter will ever miss it again in future as you are both wiser for this experience and are well prepared for it to see the signs going forward.

As I was reading your long post I got halfway through and it was sounded so bad that I honestly expected it to just get much worse, possibly even life threatening.
Was glad to keep reading and find near the end she was the one demanding food!

My stance on these conditions is to always listen to your body.
04-18-2015, 08:41 PM   #6
DennyRay
 
Join Date: Apr 2015
Location: Sheboygan, Wisconsin
Theresad you made me laugh with the "butt watch 2012". My daughter called me a PP. Poop pervert. At Children's they collected her stool to monitor output and the doctors were always asking us about it. Since my daughter was always sleeping (before remicade) it fell upon me to answer the question. You will be happy to know I am no longer a PP. Senior members, thank you about the advice of the forums. They are a wealth of info. Also, her GI doctors use the words "listen to your body". Valleysangel1992 I will encourage my daughter to check out the teen site and I REALLY appreciate your offer to contact you. My daughter is not ready to reach out yet, but one day she will be. Thank you to all.
04-18-2015, 09:44 PM   #7
wellen1981
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Theresad you made me laugh with the "butt watch 2012". My daughter called me a PP. Poop pervert. At Children's they collected her stool to monitor output and the doctors were always asking us about it. Since my daughter was always sleeping (before remicade) it fell upon me to answer the question. You will be happy to know I am no longer a PP. Senior members, thank you about the advice of the forums. They are a wealth of info. Also, her GI doctors use the words "listen to your body". Valleysangel1992 I will encourage my daughter to check out the teen site and I REALLY appreciate your offer to contact you. My daughter is not ready to reach out yet, but one day she will be. Thank you to all.
Sound like good GIs then They are hard to find.
04-18-2015, 11:08 PM   #8
DennyRay
 
Join Date: Apr 2015
Location: Sheboygan, Wisconsin
My daughter needs to gain weight. The doctor has her on basically an unrestricted diet. 3-5 boosts or ensures a day (220 & 240 calories each). A super shake (numerous recipes of high calories shakes). Goal is to gain 1-2 lbs a week. So far, so good. My daughter is also anemic. The doctor told me to put her on prenatal vitamins (has folic acid) with iron. Stats the doctor wanted me to achieve are 600 vitamin D, 18 iron and 1300 calcium. What are your thoughts?
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