Update on My Girls

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Joined: 11/28/06
Posts: 848
Update on My Girls

Just wanted to write an update on my girls. Alana has been having more frequent diarrhea and bowel incontinence over the last few months so I made an appointment for a second opinion at Nemour's Children's Hospital. The soonest I could get an appointment (with the doctor that specializes in IBD) was February 19th. That wasn't too bad because despite the issues she was having she was feeling great. That is until Thursday night and things have gone downhill since then. She was in our town's Christmas parade and when I picked her up from her float she looked awful (but was absolutely fine when I dropped her off). Friday night we had an episode in Outback that I'd like to forget, and she pretty much laid around moaning and crying about her stomach and head all weekend. This is the exact thing that happened last year around this time and I'm beginning to think it is related to the excitement of the holidays. I think the excitement and surprises this time of year cause her GI issues to flare up again and we currently don't have a diagnosis or treatment of any kind. So, I called the new doctor and he agrees she needs to be seen ASAP so he's fitting her in on Wednesday afternoon. Thank goodness. I pray that he is able to help her and that she feels well enough to go on her Epcot field trip this Friday!

Madi is doing much better! She finished her 20 days of antibiotics and about 7 days later started getting sick again. I started her back on the Nasonex and within 3-4 days she was fine. She's sleeping good at night, her behavior is better, and she doesn't seem to have any nasal/respiratory symptoms at all. So for now, Nasonex is our miracle drug! lol She has an appointment with the new Pulmo on January 3rd, but if things continue to go so well I don't foresee any more testing or medication changes for her.

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

A new doctor...Wednesday. Best wishes!:neonflower:

Joined: 05/05/04
Posts: 435

I hope that this guy helps! Do you do advent calendars or something where they're getting extra junk food around now?

Joined: 11/28/06
Posts: 848

No extra junk food really. I don't think they've even had any party foods at school yet. Last week they did start their Holidays Around the World lessons at school and she really gets into learning about other cultures. Basically they have guest speakers, make fun crafts, listen to stories and watch videos. The lessons wrap up this week with the Epcot trip. She's been looking forward to this for quite some time now. We have our tree up and decorated now and she's been bugging me to watch some more Christmas movies. There's just so much fun stuff for little ones this time of year and I think the emotions affect her. I mean, it is obviously more than just anxiety and excitement, but I think that is aggravating an underlying condition of some sort (IBD would be my guess.....).

As I was typing this (and she was finishing up dinner) she had to make a mad dash for the bathroom, poor girl. She literally has seconds from the time she feels the urge (if she even feels it) until the time it is everywhere. Those Humira commercials where the depressed looking people are afraid to venture too far from the bathroom - I totally get it. It affects every aspect of your life and the details of your condition aren't as socially acceptable to discuss as something like asthma or a heart condition. I realize that I'm rambling.....I just feel for her (and anyone else in the same situation) and I'm anxious for tomorrow's appointment.

Joined: 11/28/06
Posts: 848

Just wanted to say a few things about the appointment yesterday. First of all, this hospital is amazing! We felt like we were in some sort of museum with the beautiful Sea World fish tanks, LED light displays, and beautiful paintings. The staff treated us like royalty (I'm not exaggerating) and we had no wait time. I'm used to being crammed in a tiny waiting room filled with broken toys and sick kids for a 30 minute minimum and there was none of that. We were with a staff member the entire time and only saw 2 other patients in passing. The doctor was very thorough and kept reassuring me that he would help us and that he would not stop until he had answers. I immediately knew we were in the right place.

Interestingly, the doctor thinks that Crohn's is unlikely because her problems presented at birth. Instead, he thinks it is more likely that she has pancreatic insufficiency and gave us the name of a possible syndrome. After researching the syndrome it does sound a lot like Alana but we will see. He ordered a lot of blood work (which we did yesterday) and stool samples which should give us a better idea. And the surgery specialist will call me this afternoon to set up an MRI of the abdomen.

In the meantime he gave her a prescription for Hyomax to help deal with the stomach pain. I was ecstatic that he cared enough to offer something now and not make us wait for test results (which was the last doctor's way of doing things).

I feel very hopeful yet anxious. I really think we'll get answers here but getting answers can sometimes be scary.

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

Progress!
Knowledge is power Mama!
:wavehello:

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

"Alana*sMommy" wrote:

I totally get it. It affects every aspect of your life and the details of your condition aren't as socially acceptable to discuss as something like asthma or a heart condition.

Feel free to post away here about it. Dakota has these problems too. Not as much now because we know what the issue is and can avoid it, but I can't prevent it 100% so there are still days he has to miss school because of it.

So glad you have a new hope with this new dr. That's what we found when we switched too. Having answers is sometimes a major portion of the battle. After that you can develope a direction to go. Even if it's just learning to accept things.

Joined: 05/05/04
Posts: 435

Sounds like things are moving in the right direction!!

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

This sounds so optimistic! I hope that this leads to some positive outcomes. Keep us posted, I think of you guys often.

Joined: 11/28/06
Posts: 848

Well, we survived Epcot and Busch Gardens! We had a fabulous time and I'm so grateful for the special memories I was able to create with my girls (especially with the events that took place in CT on Friday). I wish I could say that I completely forgot about Alana's medical issues and upcoming tests, but those thoughts are always in the back of my mind. I feel a little on the edge of "losing it" and I've had to make myself stop googling until I have more definite answers.

We completed our first stool sample this morning and my husband will drop it off at the lab tomorrow. So yes, I have a container of poop in my fridge and two hidden behind a picture frame, lol. I gagged and heaved through the whole process like a huge drama queen, lol. Those poor people in the lab that do this sort of thing every day. I hope they get paid REALLY well!

I'm expecting the nurse to call with the lab results tomorrow. I'm terrified. If she says everything came back normal then I'll feel like our hope of ever figuring this thing out is just never going to happen. If she says that something came back abnormal then I'm forced to face the reality of the situation, no matter how scary that may be. Thank you ladies for being here for me. Knowing that others understand where I'm coming from is extremely comforting.

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

Glad you had a wonderful trip and hope your results get closer to helping Alana.

Joined: 05/05/04
Posts: 435

Any updates?

Joined: 11/28/06
Posts: 848

Well, most of her lab work has come back and so far everything is normal. No surprise there. I know it sounds odd to wish for abnormal labs but I just want something that will point us in the right direction.

Turned in the first stool sample and thought we completed the second but the lab told hubby we were missing a container. Apparently one of them has to be frozen? I've seriously never heard of that, but okay. So we still have to complete #2 and then do #3. My goal is to have it done by Friday so we'll see. Last night's collection was a dramatic episode because apparently she was in a lot of pain (screaming like she was dying pain). And that "specimen" looked like it came straight from an alien, so if it comes back normal then the doctor couldn't have been testing for the right thing.

Our follow-up appointment is for January 2nd, and at that time we should get the remaining lab results, stool sample results, and MRI findings. I can only hope we'll walk away with some answers and not just more questions.

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

I can TOTALLY understand the "hoping for abdormal results". It would help you to know what direction to take even if it's just coping with things. That is wierd on the frozen sample. Never heard of that.

Joined: 05/05/04
Posts: 435

Hopefully the really weird poop tells them what they need to know!!!