Alana

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Joined: 11/28/06
Posts: 848
Alana

Since being off school and having fewer dance classes per week (due to the holidays) Alana was starting to improve. She was able to sleep late, lounge around all day, and eat at her convenience. She continued to have reflux but it wasn't as bothersome.

Yesterday morning she woke up and immediately complained of a sore throat and headache. I knew she must not feel well to complain on Christmas. She only ate a few bites of breakfast and didn't even want to play with her new toys. I took her temp and she had a low grade fever. Bummer. We headed over to my MIL's house and Alana just wanted to lay down and try to get rid of her headache. Tylenol doesn't make her feel better or reduce the fever. She ate a few bites of lunch but refused dinner.

This morning she woke up complaining of a headache, sore throat, and a stomachache. She did eat some breakfast but a few minutes later was spitting up her food. This time I noticed there were streaks of blood in the spitup. I'm not sure if this is typical of reflux or not (is it?). I put a call in to the GI but she is on vacation and I have no idea when she'll return. The fever continued all day and her headache became worse and she started to become dizzy if she did anything other than lay flat on her back. She ate a few bites of lunch and tried to eat dinner but became frustrated because whatever she swallowed was coming right back up.

Hopefully she'll feel better tomorrow but we'll see. We still haven't told her about her upcoming procedure and I know that we'll need to soon. Today just didn't seem like the day to do that.

On a positive note I've been talking with an old friend (we were best friends in Kindergarten, lol) who was recently diagnosed with Crohn's Disease. She's given me some great information and it is really nice to connect with someone in a similar situation (as you all know). She's facing a possible surgery soon if her medications don't work quickly so she is in my prayers daily. A little scary to hear about what my own daughter may someday face.

Anyway, I basically just needed to post and get some things out. I'm concerned for my baby and feel rather helpless at the moment. My husband is not handling the diagnosis well and somehow I ended up being the strong one for now (typically these roles are reversed, lol). I'm terrified about what this procedure will reveal but anxious for her to get some help. 2 more weeks.....

Joined: 05/05/04
Posts: 435

(((hugs))) I just read through the other thread (I've been fairly bad about getting on here for a while now). I don't know much about this specific disease but I know that the paleo diet has basically cured my IBS, so definitely look into alternative treatments. It has oddly enough also fixed my endometriosis symptoms. I feel like a new women (one who eats pepperoni and still loses weight!) Biggrin

Good luck!! I hope that this is the beginning of a huge improvement as you find ways to help her deal with this!

Joined: 11/28/06
Posts: 848

Day by day Alana seems to get worse. Yesterday she woke up and was able to eat breakfast even though her throat hurt (and she still had a fever). Shortly after eating the reflux began. Same thing with lunch. After lunch she became very nauseous and just wanted to go home and rest. A few hours later she had dance class and that was a disaster. She just couldn't focus to get through a dance even though she knows her dances well. She was burping constantly and near tears but refused to quit. Man that was hard to watch! Then we went out to dinner with family and she looked just awful. She was able to eat some garlic bread but before we could leave she had already thrown that up.

When we got home we decided it was the right time to tell her about her upcoming EGD/Colonoscopy. She remembers the one she had 2 years ago and she was completely okay with having another. Such a relief that she wasn't upset by it at all but rather excited.

This morning her fever is up a little and the diarrhea has started again so I put another call in to the GI. She is still on vacation but at least the office staff was there to answer the phone. I left a message and I'm waiting on a call back. Not sure what, if anything, can be done at this point but hoping for the best.

Joined: 12/01/05
Posts: 1000

I think you should call her pedi and explain all of her symptoms. I think you're dealing with something other than GI issues here. If she has a fever, that is not caused by reflux. A fever would indicate some kind of infection. (Low grade fevers are usually bacterial, so antibiotics might help.) My guess about the blood would be either from her throat (especially if the blood was bright red) or from an ulcer. As far as I know, reflux doesn't cause that. Does she have sinus drainage? That could be causing the sore throat and vomiting. Or the sore throat could be from the reflux, but that doesn't explain the fever. Reflux would also definitely not cause a headache.

Joined: 11/28/06
Posts: 848

The nurse called back and the best they can do is move her appointment up to the 4th. Crohn's Disease can cause inflammation and related issues anywhere along the GI tract, from the mouth to the anus. Alana gets a fever whenever there is any sort of inflammation (hives, asthma flare up, etc.) and fever is actually a symptom of a Crohn's flare-up. The only way the doctor can know for sure is by having this procedure and Wednesday is the soonest we can have that done (the doctor comes back Tuesday but we need a pre-op and that can be done Monday at the earliest).

No one else in our house is sick so I'm pretty sure she doesn't have a virus. I'm assuming the Crohn's is causing the reflux and the fever, and the inability to eat well is causing the headaches and dizziness. I'm assuming she feels much the way we feel when recovering from the stomach flu. I'm just hoping that the doctor will be able to pinpoint the exact problem and can prescribe something to make her feel better. Hopefully a hospital stay or additional surgeries won't be necessary.

Joined: 12/01/05
Posts: 1000

Poor kid. I hope the doctors can do something about it. That sounds miserable.

Joined: 05/05/04
Posts: 435

(((hugs)))

Joined: 11/28/06
Posts: 848

The nurse called today and wanted to push her procedure up a day. Unfortunately I couldn't because the kids come back to school Tuesday and I have a new Para starting so I just can't take that day off. She did warn me that it may be decided at the Pre-Op appointment that she needs to be admitted. I'm hoping it doesn't come to that but we'll see.

She's had a slight increase in her appetite today and the fever has been off and on (without meds). Tomorrow we have plans to go to the movies so hopefully she feels well enough to go.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

All I have to offer are :bigarmhug: I've been through GI stuff myself, but nothing quite this serious. Prayers this gets under control soon so she can go back to feeling great and doing the things she loves.

Joined: 11/28/06
Posts: 848

Thanks Angela. This is the worst she has ever been and to be honest it is quite scary. She's losing about 1/2 lb. a day at this rate (I make her weigh nekkie first thing every morning, lol).

She ate a relatively good breakfast this morning and says she wants to go to the movies so we'll give it a shot. I'll bring along a puke bag just in case. This disease is definitely life changing but I refuse to keep her from being a normal kid and doing fun kid things. My big goal is to spread awareness, normalize the disease, and raise her so that she'll be proud of who she is and not embarrassed. Digestive disorders tend to be things people are embarrassed of and it shouldn't be that way. Maybe one day it won't.....

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

1000% understand the weighing them thing. I actually can't weigh Eli right now because our scale broke and I haven't replaced it. Otherwise I do the same thing to Eli (poor guy). But when they loose weight like that you have to be concerned.

Joined: 11/28/06
Posts: 848

Wouldn't you know it! She woke up this morning coughing and her peak flow numbers are extremely low. I just feel so frustrated!

Joined: 12/01/05
Posts: 1000

Hugs.

Joined: 11/28/06
Posts: 848

Alana's Pre-Op appointment went well yesterday (other than some insurance issues). It was decided that she will not get the gas because the anesthesiologist feels that's probably what caused the reaction last time. Instead, the IV will be started while she's awake using lidocaine.

When we got home and had dinner Alana started spitting up quite a bit. Before long she was spitting up straight blood. Hopefully the colonoscopy prep will go good today.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

Hugs and best wishes to all of you for today!

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

You have probably done a ton of research, but I found these sites that may help Alana, and maybe you. There are several sites that are geared specifically to kids with Colitis and Crohn?s disease. The symptoms that they list are exactly what you?ve described over the years with Alana. One of them has a bunch of tips on how to deal with school. Another deals with summer camps specifically for children with Crohn?s disease and Ulcerative Colitis. Another has a bulletin board specifically for kids and teens with Crohn?s disease and UC.

I really hope that this is an answer that helps Alana. I am sorry that she is going through this.
Groups:
http://www.ccfa.org/kidsteens/
http://www.ucandcrohns.org/about_us.php?c=2
http://www.ideaskids.com/

There was another child/teen group that I found a couple weeks ago, but I can't find it right now. I'll keep looking.

Info and research that you may or may not want to read yet:
http://www.scientificamerican.com/article.cfm?id=social-medicine
http://www.ajcn.org/content/76/5/909.full
http://www.chop.edu/service/inflammatory-bowel-disease/about-inflammatory-bowel-disease/

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I tried to login to post to this yesterday, but my computer wouldn't let me. Prayers all is well. Glad pre-op went good.

Joined: 05/05/04
Posts: 435

I hope we hear from you soon! I'm thinking about you.

Joined: 11/28/06
Posts: 848

The procedure went well and Alana hasn't suffered any memory loss or changes in behavior due to the anesthesia. So apparently the gas was the culprit, good to know. The doctor didn't give us much info, just told us to wait for the biopsy results in 5-7 days. Alana is the same - still having stomachaches, still spitting up her food.....

Joined: 12/01/05
Posts: 1000

I'm glad the procedure went well. I hope this will finally give you some answers.

Joined: 05/05/04
Posts: 435

I'm glad the procedure went well. I hope you get some good answers!!!

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Glad Alana didn't suffeer unnecssarily from the procedure. Hope you get some answers.

Joined: 11/28/06
Posts: 848

The receptionist called today and set up an appointment to go over the biopsy results (Friday afternoon). She wouldn't tell me anything over the phone which is slightly annoying. I have a feeling the test didn't show anything, we're back to square one, and she wants to talk to me in person to discuss the next round of tests. My husband thinks the news isn't good and that she won't give out that kind of information over the phone. Surprisingly I'm not super anxious and biting my nails for the results like I usually do. At this point I'm just trying to manage her symptoms and keep her happy, and that consumes most of my energy.

Joined: 05/05/04
Posts: 435

I wish they could get you in sooner, but I suppose at least you're staying busy. I hope they have some good advice for how to help her feel better and move on!!!

Joined: 11/28/06
Posts: 848

They had appointments available for today but it is our first week back at church for the semester and the girls would be crushed if they had to miss AWANA. (We have a 45 minute-1 hr. drive and Tampa traffic is VERY unpredictable). Friday was just the most convenient day for me to take a 1/2 day off work.