How do you handle the chronic exhaustion of your Crohn's Kid?

[Pilgrim]

I would describe her exhaustion as moderate to severe. She spends most of the day on the couch - whether or not the t.v. is on. Sometimes I find her asleep in the middle of the day, on her bed or on the couch. She has siblings up and about, playing outside in the sprinkler or on the trampoline.

I find her energy is a little better right after she's had a BM. Much worse leading up to it.

I am getting pretty worried about her health, I mean besides the messed up bowels. Her growing bones, her muscles, her cardio system.

Should I just learn to live with this as the normal, or push her a little more?

 

[Clash]

When my son was first dx'rd he spent most of his time in bed due to fatigue. Remicade changed this immediately. But it is also important to check iron, b12, vitamin D and other vitamins levels as they can cause fatigue as well.

 

[Pilgrim]

We did a vitamin panel and she was low on Vit D. But not severely low. We are supplementing now. Iron is somewhat low but improving. Vit B12 is ok.

I will keep Remicade in my mind but, wow, after just reading the possible side effects that would be a difficult decision. I have a lot of admiration for you parents who have been working through the options over many years with the disease. I can't imagine how difficult these decisions are.

 

[Clash]

Remicade is great it can stop inflammation in its tracks but some kids get great response to Imuran or mtx etc it is so individual but the main thing is curtailing the active disease so things like fatigue, pain, fevers....whatever the child's symptoms are become something in the rearview mirror!

Good luck!

 

[Maya142]

When my daughter is doing well, fatigue gets much MUCH better. For example, in the last two months she's been anemic and so SO exhausted. We added Imuran in June (she was already on Remicade) and now she's slowly starting to feel better, her hemoglobin has gone up and she has a lot more energy.

Nutrition is also important, I find that when I bother her to drink two or three Peptamen a day (versus one) she feels a lot better because she's getting more calories (she just isn't able to eat enough).

 

[my little penguin]

As others have stated
Fatigue is not acceptable or the norm if your child is on the right treatment plan.
Side effects read the full phamplet on Tylenol its scary too.
DS tried all the drugs slowly one at a time so it took a year to get to remicade
But within a few weeks we had a new kid
He could swim at swim practice about an hour where as pre remicade
Put his toe in was an issue .

Good luck

 

[Pilgrim]

I've heard a little bit here about "top-down" as opposed to "bottom up" treatment, and it sounds like most people would say "top-down" treatment is a good bet. So, biologics first?

 

[Farmwife]

Grace deals with fatigue often. We cut her back from five half days of pre school (k5) to having Wednesday off. It worked out to give her a rest during the week.
Grace's fatigue is also linked to her disease(s).

 

[Momtotwo]

Fatigue was my son's worst symptom. I saw it increase from diagnosis to first treatment and it scare me a lot. I've seen improvement with Remicade but he isn't back to normal. He doesn't eat a lot, and I think that has a lot to do with it. The disease itself plus the lack on intake.

 

[Pilgrim]

Farmwife - I called and cancelled Hannah's spot in the pre-school program right after diagnosis. I couldn't imagine her getting through a day and we live about 20 minutes away from the school - hard for me to just pop over to help or pick her up early. I feel a little guilty though, like maybe being with other kids would get her on her feet more? Give her more of an interesting life. Oh well, her baby sister is a terror, so there's entertainment factor at least. I am impressed that Grace managed even 4 days. Good for her.

Momtotwo Sometimes I read a response and can feel the worry right through the screen. This is a terrible disease.

 

[Farmwife]

We also do quiet time at noon. She doesn't have to sleep but can look at books. I make my son do this also.

Our OT therapist said for Grace it's about energy preservation, as in save energy where you can.

At her worst we would make her do at least 15 minutes of play time an hour unless she had already played a lot. I took her in the sun and would just sit on a bench and cuddle. The sun helped both of us.

I found most of all that she would play if she could. She's never been one to sit around.:hug:

Her arthritis is her big culprit.

 

[Momtotwo]

Pilgrim- I think you have to take cues from your daughter. At her age, I don't think there is much risk of lounging for the sake of wasting time...like we do as adults! If she has low energy, there is a reason for it. We play a lot of board games, card games, etc but my son is a little older. Keeping that mind busy and taking advantage of each high energy day would be my advice. When she goes into remission, I think you will see changes. My son used to play two sports per season. That's not possible anymore. Now our goal is to get him to as many games (of one sport) as we can in the fall. We just have to take it one day at a time.

 

[my little penguin]

Until her disease is under control she probably won't play a lot or run around .
Not due to depression etc just dimple put her body is still sick and using all her energy to fight the inflammation.
Once the inflammation is under control the rest will come.
She is on EEN ? That takes at least 6-8 weeks to reduce the inflammation and then there needs to be another method to keep the inflammation from coming back.

We made DS go to school - but he was 7.
He could however sleep for a few hours in the nurses office everyday and put his head on his desk .
We were told to keep life as normal as possible ( take cues from kid) just with lots of breaks and rests.
DS has been swimming competitvely from age 6.
So he continued to go to practice after dx even if he just changed clothes , swam for five minutes etc...
Once he was under control it took a while to get his strength and stamina back.
He now has fatigue from arthritis related to Ibd even though his Ibd is under control .
We manage that though lots of physical exercise plus extra meds .

 

[lenny]

I really don't expect much of my son at all. He spends his days doing pretty much whatever he wants to do, which is usually laying in bed or on our sectional. I bring him most of his meals, but he does get his own snacks and drinks now and often takes our dog for a walk.

He has not attended school in quite a while or been to the gym.

 

[my little penguin]

Lenny has your child ever been in remission while on his current treatment ?
Meaning his energy activity where all normal as opposed to clinical remission where bloods and scans are within normal limits .
Normal quality of life is achieve able and should always be the goal
Per DS's Gi .

 

[CrohnsKidMom]

My son was extremely fatigued when he first got sick and was dx'd. Once treatment began, we saw this improve until he was in remission. Now that he is in remission, I would say he still gets tired quicker than his peers or little brother. But, it's not the same kind of relentless fatigue he had before, and I just chalk it up to being part of his disease.

 

[lenny]

My son has not been energetic since he has been underweight. He's now 112 and 5' 11".
His top weight was 121.