Dealing with day to day routines?

[nursejulieanne]

Hello, I am still here. =) I had posted a couple weeks ago about my daughters stomach pain and awful constipation! We are set to see the GI this Thursday and she should have the results of the fecal calprotectin to see if we need to do further testing for crohns.
My daughter is still having stomach aches everyday along with 4-6 bowel movements a day. Some are large and soft others are small and soft, but we have to do senna AND miralax just to keep her going. I told the pediatrician that I had backed off on the bowel meds for a day as she was having such bad stomach aches and she said she thought I was undering doing it on the meds and suggested I give more rather than back off. :shifty:

My question though is about managing in life. There is a full time position open that I am really wanting. It is a great job and they are wanting to interview me in the next few weeks. Of course that would mean my daughter would have to go back to daycare full time. I pulled her out when all of this stomach pain started as she was cranky and crying and just being difficult at school. I am sure it was all due to her stomach pains and constipation but the daycare was not handling it well.
Now, I have a letter from her pediatrician to give the daycare explaining that if she has stomach pains she needs to be allowed to go to the bathroom to try to have a bowel movement and then she can rest until she feels better to resume her activities. I am hoping this will help as I think the daycare was making her feel bad if she didn't participate when her stomach hurt.

ANYWAY, how do you all cope? How do your kids cope at school and daycare? Do you work? My daughter will be starting kindergarten next year so we do need to get her used to being in school 5 days a week. I just don't know how to help her when she is having stomach problems.

 

[rollinstone]

I'm no parent but for me, I have been off work and I spend most of my days cooking and eating healthy (except fr this week iv been on a TLD) trying to induce remission amongst the other methods and treatments. I think with your daughter though it's important to be very positive and let her know her tummy aches are gonna get better, the GI will put you in the direction. Hope it all gets better for you soon. God bless.

 

[Tesscorm]

That's a tough question... My son was older (16) when he was sick and then diagnosed so, when he wasn't feeling well, it was easy enough to leave him at home on his own (I work full time).

But, as much as my boss is understanding and my son hasn't been very sick since diagnosis, I still find it hard, at times, to balance work and all his apptmts (GI, GP, MREs, etc.).

Do you have a 'back-up' for you if your daughter isn't well enough to attend daycare - babysitter, grandmother, etc.? My mother was great as a back-up when my kids were younger, made a huge difference.

But, as it seems you don't have a definite diagnosis for your daughter yet, her pains will hopefully alleviate once treatment starts (regardless of diagnosis)...

I hope you get some answers soon to give you some clarity of what to expect... :ghug:

 

[my little penguin]

Work full time here.
DS is in third grade so full days as well for him.
We have a 504 plan at school and letters from Gi
His has unlimited access to the bathroom and water.
He can also rest/sleep in the nurses office as needed or just put his head down.
We treat stomach pain matter o factly
Just ask for location and a number 1-10.
There are smiley charts for pain for little ones.
I schedule as many doc follow ups together as possible and let DH take the kids to non urgent extra docs ( ped well check or eye appt etc)
This cuts down on vacation days.
Schedule first thing in the morning but I prefer late afternoon so if doc is late I don't care.
We hired a sitter for the morning and afternoon
Not sure if a sitter is an option for you so she would only need preschool a few hours a few days a week ....
In the us www.care.com has a list for kids with tubes or asthma etc....
Sitter city also is a good source

It is not easy but in order to pay the bills it is necessary.
Hugs

 

[nursejulieanne]

Thank you, that is a HUGE help! Having a plan in place before hand so she and her teachers know exactly how to handle it sounds perfect. I just really need to impress on her teacher that she is NOT to make my daughter feel like she is doing something wrong if she needs to rest because of her stomach. She is only 4, so she just does what they tell her.
I have thought about switching her to a home daycare setting, but she is so used to her current school (had been going for a year and a half before this started) that I hate to put her through the stress of starting all over again. Also, she will have to reacclimate to a daycare setting eventually for kindergarten next year.
We had a nanny before, but found it very difficult to find one that was trustworthy, they were always on their phones etc. and I do not have a back up. My parents all work full time and live 2 hours away.......
thanks again!

Work full time here.
DS is in third grade so full days as well for him.
We have a 504 plan at school and letters from Gi
His has unlimited access to the bathroom and water.
He can also rest/sleep in the nurses office as needed or just put his head down.
We treat stomach pain matter o factly
Just ask for location and a number 1-10.
There are smiley charts for pain for little ones.
I schedule as many doc follow ups together as possible and let DH take the kids to non urgent extra docs ( ped well check or eye appt etc)
This cuts down on vacation days.
Schedule first thing in the morning but I prefer late afternoon so if doc is late I don't care.
We hired a sitter for the morning and afternoon
Not sure if a sitter is an option for you so she would only need preschool a few hours a few days a week ....
In the us www.care.com has a list for kids with tubes or asthma etc....
Sitter city also is a good source

It is not easy but in order to pay the bills it is necessary.
Hugs

 

[jmckinley]

I think you're on track to keep her in her same school. Change can be a trigger for symptoms, so she will be more comfortable there. Education is the key. Any info you can give her teachers is helpful. So many people know nothing about IBD or think its just a "stomach problem". There is SO much more to it. Our kids are tired and unusually sensitive. The vitamin deficiencies they face affect their thinking skills, mood, and ability to cope. And the child does not understand "why" they feel like they do. I think a "safe person" at the school would be a good thing. My son had a teacher that he was allowed to go to when he wasn't feeling well...no questions asked. She would let him rest, talk to him, give him a place to be alone and calm down. Whatever he needed until he could return to class or decide to call me. We were very lucky that she also had Crohn's. Even with a 504 when she gets to kindergarten, a safe person is always a good idea.

If you have a plan in place and the job could be flexible, it could work!

 

[NMMom]

your post was all too familiar sounding to me! I have a young daughter, too, and managing a chronic illness while working is tough. One of my biggest stresses in additon to Ellie's health has been managing work and keeping my job while trying to take the best care for my little one as possible. I've found in our case we have to have back up plans - not just one, but a few. All of her teachers and the administrators know about her disease and are very supportive. It was really hard last year when she was in preschool because the bathroom had multiple toilets and no walls or doors. When she needed privacy she had to go to the lobby and use the adult restroom which created issues because that was an "unsecure" part of the center and so someone had to go with her and that threw off the teacher/child ratio. I'm sure you get the point but it. was. tough.

Now that she is in kinder the school has been wonderful. We have good friends and both my husband and I have very supportive employers. Without this I don't know what we'd do. You might want to even look in your area to see if they have "sick sitters". There are a couple I've heard about - usually nurses or MA's who you pay to come to your house and stay with your child for a day or two when they are ill and can't go to school.

Good luck! I know it's a tough spot to be in .

 

[nursejulieanne]

Thank you all for your help and advice. My daughters fecal calprotectin was negative so I am sure GI will not pursue the crohns any further. I think we have ruled it out with that.
I am thinking maybe it is IBS? Anyway, we are seeing the GI on Thursday so hopefully she will have some ideas on how to manage my daughters stomach pain. Thank you again for being so kind and welcoming.

 

[my little penguin]

just so you know
ds had normal everything
blood
imaging ( ct mre etc..) the only thing that showed what was wrong was biopsies on from the scope.
no single test can rule out IBD
so if she is still in pain
please push for answers.

 

[DustyKat]

I am much like Tess, I work full-time but my children were much older when diagnosed.

It has been difficult at times trying to balance time away from work and illness and appointments. Deciding when it is right to take time off and when not to.

Getting the school on board was a big factor and although they were always very supportive and I didn't have issues as such it did take some time for them to 'get it'. They always indicated that they had a grasp of the situation but they didn't until I actually had a meeting with the Principal and all teachers involved and told the whole story, and I mean the whole story, that they realised just how much it can and did impact on my daughter's life.

Good luck! I so hope you are able to find the right balance for your little one and yourself. It is hard enough road to hoe without these added pressures and Mummy guilt thrown in to boot! :hug:

Dusty. xxx

 

[AZMOM]

Like MLP I will say

504 504 504 504 504 504 504!!!!!!!!!

I was working part-time when Claire diagnosed and full time the last two years. She really does thrive at school and everyone is on board this year. it's made a huuuuuuuuuuge difference.

J.

 

[kimmidwife]

I have to second MLP labs and FC can be normal. Only scopes and biopsies can totally rule out IBD. You may want to seek a second opinion.