Our trip is in 2 weeks and DD is quite ill

[jandkmom]

I don't know what to do. My 9 yo DD has been sick for 5 weeks with horrible stomach pain, nausea, weight loss, fatigue, aches, etc. She's seen lots of docs and been through all kinds of tests, and now they are suspecting Crohn's They want to scope her soon to confirm. The problem is that we have been counting down the months, weeks and now days until both of my kids celebrate their bday at Disney, and this trip is the only thing keeping her going right now (she has been very sad and withdrawn). It would destroy her to postpone. But I also don't want her to feel horrible the whole time and have it ruin the trip for her too.

Thoughts?

 

[itsheresomewhere]

PM'd you

 

[amykathleen2005]

I would say postpone it. She is going to be miserable during the trip.

 

[SueM in MN]

I would say postpone it. She is going to be miserable during the trip.

I would agree and would look into what it would take to postpone it. Talk to her octors, see what they think and what might be a reasonable time to go.
You can still celebrate the birthdays there - no proof required for getting a birthday button.

My oldest DD's best friend was diagnosed with Crohns when she was about that age. I have vivid memories of the 2 girls playing happily, when all of a sudden, the friend would be doubled over in pain. She just wanted to go home and lie down. She felt bad enough that she wanted someone to walk home with her - and she lived right next door!

I can't imagine going to WDW like that. Yes, you could rent a special needs stroller for her (or a wheelchair if she's a bigger 9 yr old), but she is still going o have times when she is in pain and just feeling like she would be better off somewhere else.
Yes, she would be disappointed, but a 9 yr old is old enough to understand that if she's not feeling well enough to anything at home, she will not really have much fun at WDW. Even if you end up with no waits for anything ( it is pretty slow this time of year), it's pretty miserable to spend a lot of time in bathrooms or First Aid. I would talk to her realistically about the trip and you might find she has been thinking and worrying bout those things.

 

[Sadie22]

DS had those symptoms and it turned out he was lactose intolerant. Limiting his milk intake eliminated his symptoms.

I hope you soon have a diagnosis and treatment. Hugs to you and your DD!

 

[LockShockBarrel]

I vote postpone with the absolute promise to her that's its not a cancellation. Just calmly explain that everyone will have a much better, safer, healthier time if you wait. She'll of course be upset but at 9 she should understand that she'll be so much happier if you wait. I know this next part might be hard especially with what are probably mounting medical bills, but maybe you can give her an extra special treat while you're there? I'd also talk to the rest of the family seperately from your daughter and make sure everyone is on the same page, and if there are other kids for it to be explained clearly that it's not her fault that she got sick and that it was the adult's decision to postpone, not the daughters.

 

[jandkmom]

Thank you for the responses, everyone. My big obstacle now is the extremely high cost of changing our flight if we go through this. $150 per ticket plus the increase in airfare?! Is there a way to get around this with a medical excuse? I'm at a loss.

 

[SueM in MN]

Thank you for the responses, everyone. My big obstacle now is the extremely high cost of changing our flight if we go through this. $150 per ticket plus the increase in airfare?! Is there a way to get around this with a medical excuse? I'm at a loss.

Contact the airline and ask to speak to a supervisor ( a lower level person may not be able to give any exceptions).
Explain that your DD had a medical emergency come up and you need to know what sort of documentation you need to change your airfare without penalty.
Be assertive, but very, very nice and see what they will do for you.

 

[LisaBi]

Symptoms sound a bit different, but Achalasia is also a hard-to-diagnose GI problem. Vomiting, weight-loss - but the pain is more upper-GI (esophogaus and sphincter to stomach).

Went thru that one with my older son.

 

[BusyMom2Three]

We had to postpone 6 weeks once for a pregnancy-related medical condition I had. We did have to pay the airline change fee (but ours was only $45/ticket), but in the long run we actually ended up being glad we switched dates (we now go every year at that time)!

Did the drs test for food allergies or have you do an elimination diet and food journal? I ask b/c my DD went through months of dizziness, nausea, headaches, stomach pain, gas and bowel symptoms, poor appetite, chest pain that ended up being heartburn from gastric acid, and more. She ended up being severely lactose intolerant. She had EEGs, was on the verge of going to a ped cardiologist, was on Zantac (which she had an allergic reaction to), bloodwork to test for diabetes, anemia, and a slew of other probs. Within 3 days of taking out all dairy, she was 100% fine. I don't want to get your hopes up, but I did want to illustrate how much havoc food intolerances and allergies can wreak on our bodies in case your drs hadn't suggested that idea yet (a friend's DS was just Dx'd w/ Celiac-gluten allergy-and he also had a lot of the same symptoms). Best wishes to you.

 

[jandkmom]

Thank you for all your responses and suggestions. She's tested negative for Celiac, all other food allergies, parasites, etc. She's barely eating so it was easy to take milk out of her diet, but it did nothing for her symptoms. Right now, we have a scope scheduled for Monday to look for Crohns and test her small intestine for enzyme deficiencies. I posted on a Crohn's message board and all agreed that we should try and go to Disney. If that's her diagnosis, she may have off and on problems for her life and we don't want to postpone it not knowing when she will be better. I think it will be a welcome distraction for all of us and we will get a GAC and wheelchair if needed. An adjustment but still Disney!

 

[clanmcculloch]

Just an FYI: DD13 and I both test negative for celiac as well. The thing is, neither of us can tollerate gluten. Make sure her doctor agrees to take LOTS of biopsies of the esophagus, duodenum and all through the colon especially in the terminal ilium and get copies of the results. If the eosinophils or lymphocites are high anywhere, try eliminating gluten and casein together. I'm assuming you probably don't actually have to ask since the doctor is actually testing for enzymes while in there (that's pretty unusual and I'm grateful our pediatric GI did this since it turns out my 13yo IS low in several enzymes) but in my experience most don't do this let alone recommend doing this, though it doesn't hurt to put the bug in his ear about the biopsies. Your DD won't feel anything afterward and if she's going to go through that prep then a good doctor will take lots of biopsies while he's in there.

Since you're going to go to WDW while figuring this out, please do get her a wheelchair. At 9yo you won't want a full sized chair. Most likely a 16" will fit her better and I'm assuming she'd rather a wheelchair over a Special Needs stroller which really does look like a stroller. At 9, she'll likely be too embarrassed to use a stroller but the chair she should agree to. I'm recommending 16" because that's what fit my DD when she was 10 with a broken ankle. It fit pretty well in seat length and height. It was definitely easier for me to push at 5'4" though than it was for my 6'3" DH; they're not tall. It sounds as though her energy is understandably deminished so having the chair will allow her to save her energy for actually participating in the fun rather than having to use some of her very limitted energy for getting around. It'll still be tiring but nowhere near as bad with the chair. You still do need to make sure to take it easy because even just the excitment can be tiring.

I'd also suggest you ask the doctor to test some vitamin levels. People with GI issues frequently have vitamin deficiencies and that can make the symptoms including the fatigue so much worse.

 

[SashaFarce]

We planned a trip for my cousin and brother ages ago, then over the holidays my cousin became very sick and spent a week in the hospital with intestinal issues after being sick for about a week prior to that. He was out of the hospital about 10 days before we went on our trip. We discussed postponing but he and his mother insisted he was well enough to go. We just got back yesterday.

On one hand, he was well enough from his actual symptoms to go, but on the other, he was extremely tired most of the time and refused a wheelchair. My partner and I use ECVs in the park and so we tried to switch out and let him ride as often as possible but as my partner has hamstring issues and I have a myriad of health issues myself we weren't able to split the time 50/50 with him.

Just food for thought there - even if she is better, she may still be very tired.

 

[jandkmom]

Just an FYI: DD13 and I both test negative for celiac as well. The thing is, neither of us can tollerate gluten. Make sure her doctor agrees to take LOTS of biopsies of the esophagus, duodenum and all through the colon especially in the terminal ilium and get copies of the results. If the eosinophils or lymphocites are high anywhere, try eliminating gluten and casein together. I'm assuming you probably don't actually have to ask since the doctor is actually testing for enzymes while in there (that's pretty unusual and I'm grateful our pediatric GI did this since it turns out my 13yo IS low in several enzymes) but in my experience most don't do this let alone recommend doing this, though it doesn't hurt to put the bug in his ear about the biopsies. Your DD won't feel anything afterward and if she's going to go through that prep then a good doctor will take lots of biopsies while he's in there.

Since you're going to go to WDW while figuring this out, please do get her a wheelchair. At 9yo you won't want a full sized chair. Most likely a 16" will fit her better and I'm assuming she'd rather a wheelchair over a Special Needs stroller which really does look like a stroller. At 9, she'll likely be too embarrassed to use a stroller but the chair she should agree to. I'm recommending 16" because that's what fit my DD when she was 10 with a broken ankle. It fit pretty well in seat length and height. It was definitely easier for me to push at 5'4" though than it was for my 6'3" DH; they're not tall. It sounds as though her energy is understandably deminished so having the chair will allow her to save her energy for actually participating in the fun rather than having to use some of her very limitted energy for getting around. It'll still be tiring but nowhere near as bad with the chair. You still do need to make sure to take it easy because even just the excitment can be tiring.

I'd also suggest you ask the doctor to test some vitamin levels. People with GI issues frequently have vitamin deficiencies and that can make the symptoms including the fatigue so much worse.

Thank you SO much for all of your advice! I will definitely remind the doc about all of the biopsies but it seems like she's on top of it too. At this point, I almost hope it's something like an enzyme deficiency rather than Crohn's or an unknown illness because at least we would know how to treat it.

Re: the wheelchair, can you rent a smaller one somewhere? I was just going to rent one in the park but maybe outside of the park you can get a smaller one? She will definitely be exhausted and even though she is fighting me right now on using one ("people will stare at me!" ), I know it's for the best.

Oh and about her vitamin levels, everything has come back normal except for her potassium, which was a little low. A multi-vit causes more belly pain but she's on Pediasure now and she eats bananas, so we're good.

 

[clanmcculloch]

My suggestion for getting her buy-in for the wheelchair is to discuss just how she'll bling it out. Let her decorate it. You can get light up stuff, flowers, anything you want. We happened to eat at 'Ohana on one of our first days the trip we used a wheelchair and we wrapped leis around anywhere we could think of. DD11 (10 at the time) LOVED all the attention she got for being in the chair. She was also wearing happy birthday mouse ears (we were celebrating her birthday that trip) so she REALLY got fawned over. The brat now keeps saying she hopes she breaks her ankle again before a trip so she can have a wheelchair again. LOL No we didn't skip to the head of any lines and for the most part when we needed an accomodation we actually were doing so for my other DD who is autistic and we needed to use her GAC for that so I'm not referring to that kind of thing. I'm just talking about CMs and even other guests being super sweet to her and chatting with her and trying to sprinkle bits of pixie dust with stuff like her being chosen to lead our section at the Lion King show. Just little things. She really felt super special that trip.

Honestly, I don't think people really stare. I really do think that most people tend to have much softer hearts for kids in wheelchairs than they do for adults. We NEVER experienced any judgement at all, but then again DD had a bulky boot on her foot so her reason for the chair was visibly obvious. But, if the chair's decked out then it'll also be obvious that it's not just a day rental for the sake of taking it easy and again, I really do think people are sympathetic and wonderful towards kids.

Yes you can rent 16" chairs from offsite companies. It's probably about the same price as renting the 18" ones in the park but with the offsite rental you'll have the chair for around the resort, getting to and from the bus stop as well as getting from the busses to the park gates and back plus she'll be able to remain seated while waiting for the busses. The 16" chair will also fit better so she'll be a lot more comfortable. In an 18" chair, if her knees are going to be at the edge of the seat then her back won't be up to the back of the chair. Sitting in an ill-fitting chair all day every day can be uncomfortable to the point of painful over time.

I rented from K&M Rentals and had a good experience. I didn't realize at the time that a company that comes highly recommended around here, Walker Mobility, also rents 16" chairs or I likely would have gone with them just because of their reputation but honestly I had a good experience with the one we got anyway.

We can't do multi-vitamins either for my kids or me but that's partly because our bodies just can't absorb the vitamins. I'm glad to her that her doctor tested for deficiencies and that they all came back normal. It really does sound as though you have a great doctor for your daughter. That's so wonderful!!

 

[clanmcculloch]

Just to give you an idea of the size on a 16" chair, here are a few pictures of my DD in the one we rented. She was around 4'8" and 85ish lb at the time. You can see that a bigger chair would not have fit her correctly. The standar chairs in the parks are 18" so imagine an extra 2".

From the front

At an angle

From the side (ignore the goofy guy giving the thumbs up; he was thrilled that we were finished the Kim Possible mission because the girls had been fighting over the kimmunicator LOL)

You know, we really didn't deck out the chair as much as I thought we had. Interesting what the mind convinces you that you've done. LOL

 

[KB'sMom]

I hope your DD will be well enough to enjoy the trip. As another poster said, gluten intolerance does not always show positive for celiac but gives many of the symptoms your DD has. I would probably cut all gluten and casein from her diet between now and your trip to see if that helps her feel better at all. For many people, simply eliminating gluten does wonders for clearing up their GI symptoms. Feed her lots of veggies, meat and healthy fats and see if that helps her at all. Good luck!

 

[jandkmom]

Those are great suggestions for the wheelchair...thank you again! Decorating it is a cool idea, and we are staying at the Poly, so we'll have plenty of leis to go around. I will look into renting one of those smaller wheelchairs for her. I'm assuming they deliver and pick-up at bell services like a stroller would? I'm going to get a GAC too just in case she needs it. I don't want her to stress about waiting in line if she's having a bad day and needs trips to the bathroom. That would be difficult and embarrassing for her. She's very unassuming and doesn't like a lot of attention, especially for this kind of stuff. I just want to make it as easy and fun as possible.

 

[jandkmom]

I hope your DD will be well enough to enjoy the trip. As another poster said, gluten intolerance does not always show positive for celiac but gives many of the symptoms your DD has. I would probably cut all gluten and casein from her diet between now and your trip to see if that helps her feel better at all. For many people, simply eliminating gluten does wonders for clearing up their GI symptoms. Feed her lots of veggies, meat and healthy fats and see if that helps her at all. Good luck!

Good plan. But I need to wait to eliminate things from her diet until after the scope because they want to see the effect of a regular diet on her inflammation. We'll have a few days until the trip so we will start fresh.

 

[M5ward]

If your daughter is diagnosed with Crohn's, Healingwell.com has a great forum for people with this disease. My daughter was diagnosed with Crohn's six years ago at age 35 (although she had suffered symptoms for several years prior.). Since her diagnosis, which was made during a 3 week hospital stay, she has been in remission with only a couple minor (and quickly treated) flare ups. She does take a couple of medications (many pills/day) but has no food issues.
She was admitted to the hospital with symptoms that sound similar to your daughter's.
I wish you well...and have a great trip.