Corticosteroids and attitude

[Savannah's mom]

Although Savannah has not been officially diagnosed with IBD her GI has been treating her for it the last couple of months and for the most part after about 6 weeks of medications she better off now than she has been in years! She is eating better and even willing to try new foods for several years she would only eat what I will call safe foods.. The reason I am writing and I am wondering if any of the parents out there have experienced a child that's attitude has really went south!!! My sweet loving child is now mean and it occurred to me that some steroids have caused people to become mean! I have looked a bit online and haven't really found anything on kids and steroids being mean. She just refuses I think now to refuse! Just arguementitive! I spoke to her teachers at school and they really haven't noticed much change except they know she feels better. Savannah will refuse her dad but not with the enthusiasm she refuses me with.

Savannah is on;
Pentesa 250mg X2 3times a day
Entocort 3mg X3 once in the am
Hyoscyamine as needed

We go back to see her GI this Friday....
Anyways, just wondering if the Entocort could be the problem. What do you think??

 

[Savannah's mom]

Savannah is only 9 and it was so out of character for her to be this way at all but especially to me. I wish I would have thought of it being the steroids sooner cuz I have spoke to the school to see if anything was going on and I have grounded her and now I feel bad because she really may not have understand why she was acting this way either.
I will definately be talking to her GI Friday about the attitude. As much as I want my sweet kid back I really don't want her sick again! I was telling her dad the other day she is doing so well that I hate for the doc to start weaning her off the meds but now I will be happy to see the Entocort go of course she is at the adult dose so maybe it won't be so bad if he just lowers it.
Savannah is doing better as far as her eating but she hasn't gained any weight so I am not sure exactly what he is going to do cuz the doc wants her to gain some weight to.

 

[G's mom]

My DS Garrison went through the same thing. He is my sweet, thoughtful kid that never gets upset and is always the peacemaker between his brothers. But, when he is on steroids, things change a little. He snaps at his brothers and me, and one time he hit his little brother (totally justified in my opinion). But the rule still stands that "No one hurts one of my children" so he was punished. But the punishment was not a severe and we did discuss it quite a bit. So now we know when he is on steroids to give him a little room, or a lot in little brother's case. LOL!

 

[Brian'sMom]

While my son was on prednisone he was having behavior that was different from anything I'd seen from him before, I looked at the side effects of prednisone. The one that read: "Inappropriate behavior" is definitely what we experienced. He'd be extremely hilarious and bouncing off the walls...then crying...then angry outbursts, etc. He and I are also big time buddies...but the first time he was on prednisone he snapped a towel at my face and it hurt. He ran off crying. I hugged him and he kept saying, "Why'd I do that?!" After he would start tapering to a lower dose...it would get much better. He described to me once that when he was on 30 mg his brain felt like "WHIZZZZZZZZZZZZZ".

Maybe the younger they are...the more they don't understand what they are feeling and it makes it harder on them.

We also had nights at 2am...he'd come down (on a school night) and ask if I wanted to make hot chocolates and play a game?! Julie,(AZMOM), can relate to 'late night steroid activity!!"

 

[Dexky]

Ditto what Kathy said!! Exactly like that!!

 

[Savannah's mom]

I want to Thank you all for your responses, I appreciate you sharing your experiences with me! It is so nice to know that my child and I are not alone with what she/we is going through.

So, we went to Savannah's appt today and spoke to the doctor about Savannah and her attitude and of course her tummy. He did not feel like the Entocort is the issue since Savannah isn't showing any outward signs of the steroids no moonface or anything he said he felt since there were no signs her liver is digusting the Entocort properly. Savannah's sleep habits have also been effected the last week to an I even brought that up to him and he was like if it continues we will talk about. Monday - Wednesday were horrid days with attitude and not sleeping well Wednesday night through now my sweet kid is back... So maybe it was something else either way while she is on the medicine well definately keep that in mind an try to get her to see her attitude in other ways rather than sending her to her room.

The doctor did not change any of her medicines this visit and is talking about adding an additional medicine to stimulate her appetite and said it would also help with stomach pains. I don't remember the name..I was thinking today besides her not gaining weight she is doing better, she is eating better, and is not sick all the time. I was thinking he was going to start wiening her off some of these meds. He explained to me today that these are maintenance drugs and are obviously working and although we don't want people on these medicine for long periods of time she maybe on it for years to come! That breaks my heart!

 

[Crohn's Mom]

Hi Savannah's mom
I'm so glad you have your sweet girl back!
I agree with what Kathy said as well...just like it! Not with my daughter Gab tho, but with my middle son when he was younger and had to be on them for a few months. It was awful ~ I thought he was possessed ! LOL
Gab got ALL of the outward side affects from prednisone, just not an attitude problem :/

I hope she continues to feel better and better.
I know it's so hard to think that our babies will be on meds for life, it truly is sad.
They are strong tho and will rise above it and excel !

 

[Brian'sMom]

Hang in there Savannah's mom! It's a lot for both of you to take in. Frequent tummy aches would cause some attitude too Once Brian stopped having cramps, many people commented on how much happier he seemed to be. I think he might've not known how bad he felt until he fully got into remission. Now he looks back and can't believe that he lived with daily pain like that. Glad to hear that your little one is feeling better too.

 

[izzi'smom]

I just wanted to say thanks for the reminder...dd has been on Pred since October this time but her attitude has gotten her in trouble a LOT this past few weeks. (She will be 5 in 2 weeks). I was thinking it was an age thing but am wondering if it took a while for the lower dose of steroids that she is on this time around may have taken a while to cause side effects (her cheeks have just become swollen and her appetite is now increasing). Guess I should give her a bit more leeway...although her attitude/rudeness is going to drive me CRAZY!!!!!

 

[Savannah's mom]

Poor Izzi I can not believe these babies have to go thru this!
One of my neighborhood mom's growing up has Crohn's(has been diagnosed for 44 years) now she is a dear dear friend of mine! She has held me had thru this since Savannahs pediatrician came to suspect Savannah having Crohn's back in January. I was talking to her about the effects of steriods and she said that everyone said she was a B!tch while she takes hers but she doesn't even relize it until she is off the medicine and can reflect back. She is a super sweet caring individual I can't help but believe her. It looks like us moms are gonna have to take a deep breathe and try to figure out a way to deal with our sweet yet aggressive steroid affected kiddo's.... I think I am just going to start waking up earlier so when I do get Savannah up for school I am actually awake and hopefully be more understanding with her.

Also, anyone have any high calorie food suggestions?????

 

[kimmidwife]

Hi savannah's Mom,
My daughter too was a nightmare while on steroids. She is normally my sweetest most easy going child. I am so glad she is now off the steroids and is back to herself. As my husband and I say when Caitlyn is happy the while world is happy and when she is unhappy the whole world cries!

 

[izzi'smom]

Do the steroids make her hungry too? WE never have weight problems while on them...she is constantly hungry! Have you tried any shakes? Izzi didn't like the taste of any of them, but Carnation instant breakfast was suggested and seemed the most palatable of them all.

 

[Savannah's mom]

I think the steroids do make her hungry but she still only eats a few bites and she is done. My 16 month old grandson will eat circles around Savannah. Carnation Instant Breakfast is a daily thing pretty much and on occasion she will drink Ensure. When I go grocery shopping I take her with me and just let her get what she wants for the most part so she will have something she will eat. Food used to make her sick, she would take a bite or two and just stop eating. She doesn't complain any longer about feeling sick but she still doesn't eat. So, I am looking for high calories foods that she may eat but not so much junk food. If she doesn't gain any weight by March when we go back the doctor is going to put her on something else to stimulate her appetite and she already takes 9 pills a day and sometimes as many as 12 depending on how she is feeling. I don't really want her on anymore medicines.

 

[Brian'sMom]

The calorie thing is hard! I boasted on another thread that Brian was one ounce from 60 pounds (He's never broke that mark!) and as of today we are back to 57 Everyone always suggests Ensure, Carnation instant breakfast, ice cream...etc. The problem with a lot of crohn's kids (Mine included) is too much milk products cause tummy aches. And I try not to do a lot junk food.

 

[Savannah's mom]

Hi Brian'sMom, Funny you wrote that because I was just telling my husband the samething..Whenever you ask about high calorie foods you get Carnation Instant Breakfast and Ensure.. Savannah has never broke 60lbs either. She has been close 59.6 lbs but now is back to 58lbs. The other thing I question is her temperature her temp between 96-97 degrees..... Before she got sick it was the normal 98.6.... Anyone else have a low body temp? the doc only said if she gained weight her temp would probably go back up.

 

[kimmidwife]

My daughter also has a low body temp and her hands and arms always feel very cold. Her body weight is normal. In fact the steroids made her gain 10 pounds so now she is a little overweight.

 

[Tesscorm]

May be totally unrelated but I am ALWAYS cold... I am low in iron and my doctor did mention that being low in iron can cause you to feel cold. Perhaps Caitlyn and Savannah are low in iron??

 

[kimmidwife]

I know at Caitlyn's last blood draw she was good. She is going to get some bloods tomorrow and it will be checked again.

 

[Savannah's mom]

Savannah's blood has always been good also, she is not on any supplements at this time. I searched Crohn's and low body temp and it may be a common thing what I haven't been able to find is the cause of it. I did read somewhere and I wish I would have saved it but low body temp is also an auto-immune symptom. At her check up Friday her temp was 95.5 I think below 95 is dangerous.
I talked to a friend of mine that suggested adding heavy whipping cream to milk to add calories and use evaporated milk for mac n cheese or mashed potatoes.