Fever question

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

LittlebitsMommy

LittlebitsMommy

Joined
Feb 23, 2012
Messages
180
Fever question Update after trip to ER Updated AGAIN :(

Kota hasnt real good today. He cried and whined alot in his sleep last night and when I would ask what was wrong he would say his tummy hurt real bad but never really woke completely up. The only thing that he did different or ate diffrent was Steve had some banana nut ice cream last night and Ko took one bite of it.

He has said all day he didnt feel good and just kind of laid around most of the day. He has said his tummy hurts off and on today and needs to throw up but hasnt. His back has been hurting and aching all day. He is really cool to the touch but I decided to take his temperture. Well it was 101.7. So I decided to use another one becasue he felt so cool. Well the was other one said 101.6 so I guess the tempature was right. I have just never had a child that was so cool to touch to have fever.

This is our first fever since he been dx. So I feel like a new mom with a new baby and dont know what to do. Does fever mean something bad. That he is going to get real sick again. He has felt so much better since we stopped the Pentasa. And now he feels so bad. Do I just watch his fever and give him tylenol?

Thanks for listening to me
 
Last edited:
Hi little bits Mom
Maybe the fever has nothing to do with his IBD, Lucy had a UTi recently and had a high fever so hopefully its nothing to bad. If he still has it later today maybe take him to the doc just to be sure. Wish you the best.
 
It is difficult to judge if the fever is something "bad" or not. I would give Kota Tylenol and continue to observe him, assuming his symptoms don't get any worse at which point I would have him seen to. If things don't get worse but continue to persist I would also have the doc check him over.

Good luck and let us know how you get on...:hug:

Dusty. xxx
 
Hope he's feeling a bit better by now... As above, if he doesn't worsen, I would watch and wait a bit and see if the fever subsides... :ghug:
 
:ghug:Aw, I hope the fever subsides. I hope it's nothing to serious. It's hard when something like crohn's is happening to your kid. You start to think, well is this because of it or is it something else. It's maddening.:ymad:

Farmwife
 
Last edited:
Hope he feels better soon. Andrew is funny with fevers too - can be feeling really hot but his skin is fine. Maybe Kota just has a tummy bug? (sad when we wish our kids have "normal" bugs).
 
Called GI this morning because he still had fever and wasnt feeling good. I knew the side effect list on the allepurinol said to report fever. When I talked to GI on call she told me to take him to er.
So we went to Er. The doctor there was awesome. I told her what was going on and that Ko usually has weekly labs but wasnt sure if lab was going to be open today with it being a holiday. She said well let me tell you what labs I am planning to run and then you tell me what else you want and I will add it. She said that way you dont have to worry about taking him to lab and he doesnt have to worry about being poked again. So I told her what was usually ran and she ordered those. Wish I would have thrown in the vitamin D check. So many people ask if thats ever been checked before and no it hasnt and his GI doesnt want to order it. She also ordered urine sample which I told her always had blood in urine. Then she ordered a strep test because Ko throat was hurting some. Blood pressure was good but heart rate stayed at 130 and above. All test came back normal. Besides the trace of blood in the urine which she said we already knew would be there. All his liver counts were good, white blood count was good. Strep was negitive. So she sent us home and said to watch him if he started hurting worse to bring him back. If he still has fever tomorrow to call GI for follow up. He says he is so sick at his stomach but hasnt thrown up. Doesnt feel like eatting and trying real hard to get him to drink. Says he aches really bad and tummy hurts bad. Fever is back. This is the second day he hasnt had a bowel movement. Is that okay? I know that might be a stupid question but he is one that usually goes multiple times everyday always. Thanks for everything. Hope everyoen having a great day with the ones they love most.
 
Thanks for the update hun...:hug:...I so hope things settle for Kota, bless him.

How long has Kota been on Allopurinol? Could the stomach pain and nausea be a side effect of it?

Dusty. xxx
 
He has been on it since May 10th. When they dropped the 6mp to 25 mg a day instead of 50mg they added the Allopurinol. They took him off the Pentasa at that time also thought maybe that was playing a part in the high heart rate. About 5 days after stopping the Pentasa his stomach felt better. He said momma my stomach has never felt like this before. He was afraid to say much about it not hurting afraid the pain would come back. Well it is back :(
 
I tell ya it's heart breaking!
Grace had the same thing. Her tummy pain went away.
She was happy, we were happy. Now hers is back too.
So Sorry to hear. I hope it gets better.
How's his fever?

Farmwife
 
It is heartbreaking.It breaks my heart to see him hurt. And he is afraid to say he feels good afraid that will jinx it and he will be sick and hurting again :frown:.

The fever is coming down with tylenol but doesnt stay down til time for another dose. He is just laying around today feel miserable and of course I cant get out of his sight lol

I was really glad we had a good dr today. It was so nice to also have someone listen to me and care what I think. She just kept saying how good of a job I was doing and she could tell I was very involved and stayed on top of things with Kotas medical. It was nice to finally find a dr like that. Wish I could have just taken her with me. I am very glad everything came back good. Because Ko is so afraid of going back to the hospital. He thinks now everytime he goes to the ER they are going to put him in the hospital :( I was able to tell him this morning see you are not going to have to stay everytime. Yes there maybe a time that you do have to stay but not everytime. We just have to be extra cautious when you feel bad with some of the medicines you are on. But just because you go to the ER that doesnt mean you are going to have to stay there.

Hope everyone has a blessed day
 
My heart breaks reading about your poor boy! I'm glad you got a good doctor - it makes such a difference. Sorry I can't offer any words of wisdom and it sounds like you are doing all you can. Hang in there, hope he starts feeling better.
 
Oh poor Ko! I am so glad you got a doc who listened and who you like. Double glad you were able to show him you don't always get admitted!

I HATE when they get fevers and you can't figure out the cause.

Keep us posted on what the GI says tomorrow.
 
I'm sorry! That does now sound fun at all -- yes, call GI in the morn. I sure hope they can help you!! My Gracie wasn't feeling good for the holiday, either. And now she's up tonight -- which is a bummer b/c she's actually been sleeping lately. I think she's warm but the thermometer is in my older daughter's room and I don't want to wake her at 2 AM! Hope you're hanging in there!!
 
Call the GI at 8 this morning cause he still had fever. Got to almost 104 at midnight. Nurse didnt call back til 1030 so now he has had tylenol and no fever. She said I need to take him to the ER and let them do some pictures since they didnt do any yesterday.

Ko woke with a nose bleed this morning. Heart rate is 147 when he woke. Says he feels a little better and doesnt want to go to the ER. We are getting ready to go to ER now.

Hope everyone has a great day
 
I hope all goes well at the ER. :stinks:
Keep us posted.
Poor KO. He's just to darn cute to be so darn sick.
Your doing a good job mom!!!!:kiss:

Farmwife
 
Ugh people just piss me off. We went and spent all day at the hospital. The dr today well let me just say... He was one of the worse doctors we have had so far. He said I think its dumb you are back but whatever. They did labs yesterday and everything looked good. But we will redo them today. Not that I think they will be any different today then yesterday:eek2:

Ko's weight is down a little under 2 pounds since yesterday. They started an IV and gave him fluids. Started IV the first time that was the best part about today. Gave him zofram and thats all they did. Dr comes back in and says I am letting him go home. I have talked to GI on call and she also laughed and said she didnt know why you were back today. Its just a fever and he is use to his stomach hurting. Said he is on such a low dose of 6mp that it really doesnt matter its not like he has cancer. I was so pissed. I said well it sure the heck wasn't my idea to have him out here and you do nothing. I wasnt the one that wanted to bring him back I was doing what I was told. He said well there is nothing wrong with him. Uh okay he just has a fever of 102.6 right now just for the heck of it. The dr says I am discharging him with fever and crohns :ybatty:

So when he leaves the room I get on the phone with Ko's Gi office. This being the same office as the on call dr that laughed because I was back out there with him. Ko's nurse said she was told to tell me to come back to ER by the PA because Ko's Gi doctor is out of town this week. She said I will call you back in the morning. Because I am going to get to the bottom of this becasue something should have been done.

The nurse then comes in and takes IV out and we sign papers and she says we are free to leave. So Ko is getting dressed and the nurse comes back into the room and says dont go anywhere the lab just called back and I have to find the dr. So dr comes back into the room and I asked what did lab have to say? He said well it seems the culture that was taken yesterday is growing something.. Okay so what does that mean? He said well I think its nothing and just skin contamination. So I am not worried about it. He can still go home because he looks fine. Really have you flipping lost your mind. You can tell by looking at him he isnt fine. Dr then says Oh and you dont have to bring him back tomorrow if he still has fever. Said with quite abit of sarcasim

Well on the way to the car. Ko gets this look on his face. A look I have never seen and says Momma I dont think we should be leaving. I ask why Ko whats going on. He then says momma can you take me back in please. So as we are walking back in he says can we go to the restroom please I dont feel well at all. When we get to the restroom he starts crying. I ask whats wrong son talk to momma. He says I didnt make it. I pooped and I dont know what to do. My heart just broke for him because this has never happened to him before. Someone was in the ladies restroom so I went in the mens with him and just dared someone to say something to me. Got in and started to help him get cleaned up and he cried and kept saying how sorry he was :(

Just in case I havent said this today I HATE CROHNS and everything it puts our babies through.

Sorry for the rant but wanted to update everyone
 
Oh LBM I just don't even know what to say :(

I have been down this road and i Am so sorry you both had to endure that ridiculous treatment!

I hope the lil man has a restful and peaceful nite - he doesn't deserve this garbage !
 
Wow, I don't know what to say either! What terrible treatment! You've really had your challenges with medical staff! :ymad:

I don't remember if you've mentioned how involved Kota's general pediatrician is with his current tests, treatments, etc. but can you contact him/her and try to have a conversation and get some advice as to how you should proceed? i.e. which specialist to call, how to manage the differing symptoms and various specialists, what to do with conflicting advice, etc. Perhaps the GP, not being involved in any one specific area, could give you some guidance. :ghug:
 
Are you still waiting to hear from the nurse?
Perhaps you should call and lite a little fire under you know what, to get thing moving.
Sorry I'm still upset about your trip.:ymad:
At least I get to think of your problems and not mine. Thanks, I think!:yrolleyes:

Farmwife:hug:
 
We are on our way out to see a pedi in his primary care ofice. His primary pedi is not involved at all. Gi nurse just called back and wants him to come there also to have xray at hospital NOT through ER. I also called another GI that specializes in Crohns at Dallas Childrens they are waiting on Kotas records to be sent to them and then they will get him in. Ko is in so much pain this morning. There has to be something going on.

I will keep you all posted Thanks everyone for everything
 
I am so sorry for all that you are going through...:( (((HUGS)))
We expect low grade temps around here (under 101); they are considered normal in Crohns kids.
I would find out what culture came back positive and ask to have it redone. "probably" contamination doesn't cut it for me...especially not beside a high fever.
Are you letting the ED know that your doc on call is sending you in?? Ridiculous how they are treating you, and completely inexcusable, but maybe this would help.
Sadly, belly pain was our norm too...nothing could be done for it. She would lay down and cry, but other than Tylenol and hyoscyamine (and a lot of back rubs from mama ;)) they couldn't do anything for us. We were also allowed some as needed Zofran, which he was reluctant to give us, but we were having trouble keeping anything down. We never visited the ER...for that reason. Our doc is super accessible, though, which helps immensely.
Hoping Ko is feeling better soon...you guys need some relief! :ghug: hang in there, mama, you are doing a wonderful job!!
 
Well we are back from the PCP office and of course she is of no help. All she could say was well it looks like they already did labs. So I release for her to fax what records she has to Dallas also. Then we went to have the xrays done. Stopped by Gi office to sign release to forward records to Dallas Gi there.

He always has some stomach pain and can deal with that it has just gotten so bad the last few days. Angie I know what you mean about back rubs and tummy rubs. Ko is always asking me to rub him but I can always tell when it gets go bad because he will say momma I dont want to be mean but dont rub today it hurts to bad :( Yes I tried to tell ER both times that we were sent out there by the GI and it didnt seem to matter at all.
Hopefully we will hear something on the xrays before long. Amanda his Gi nurse said his Gi doc will be back tomorrow. She said I will let him know exactly whats been going on. I told Amanda I was needing to have his records sent to another dr and hospital. I told her I was very upset with the way Ko had been treated in the ER. I said for the Dr in ER to tell me him and the on call GI laughed about me bringing Ko back out there really upset me. SHe said oh I am sure it did and thats not exceptable at all.

The nurse is the only one in this GI clinic that I ever talk to. As most of you know I havent been very pleased with the office since Ko was dx. We havent seen the doctor since he left the hospital in Feb. He didnt think it was necessary to see Ko until the middle of June.

I did find out this morning that the NEW Gi clinic at the new hospital does keep a certain day of the week open just for kids who are hurting or having a flare up. The dr that Ko will be seeing does specialize in Crohns and IBD. So maybe he can figure someting out that this GI isnt doing. Maybe just wishful thinking but I think we need to do something else.
 
Oh lbm...:hug:...I hope more than anything that Kota is able to be seen at the new clinic and they are able to provide him with lasting relief, bless him. :heart:

Dusty. xxx
 
I'm so sorry you're having to watch your poor boy go through all this. I cannot believe they actually sent him home!! I am feeling angry for you!!! :voodoo:
I really hope the new hospital has some answers for you and treats Kota better. He doesn't deserve that! Best of luck, hang in there!
 
Well fever went down yesterday mid day and so far hasnt been back :) He acts like he feels so much better. At least laughing and playing alittle. He finally ate a few bites of baked potatoe tonight. Hasnt eatten in a couple of days. He last lost 8 pounds since he got sick on Sunday. I still have no idea what was causing the fever. I do think he got a bit constipated. Something we are not use to :( Because he had the solid watery poop when we were leaving the hospital. That was the first BM he had had in 3 days. He usually goes 3+ times a day. Then the after the watery one nothing until the next day and he had a few hard solid pieces and now back to really loose BM. He had a horrible nose bleed this morning. The first this bad in a quite sometime.

We did go see Nuero dr yesterday. We were able to finally see the MRI from Feb and to see the malformation on his brain. We were also able to see the one from 2010. It was there also but you couldnt see it as much. Dr said it was because technology has improved so much in 2 years. So this looks like something he has probably had since he was born or very small. He wants to do another MRI with contrast on July 31st to to double check it. Dr doesnt think this plays a part in Kotas learning delays. So who knows.. We did talk with the social worker and I wasnt sure how that was going to go after talking to her a few weeks ago on the phone. But it actually went better than what I thought it would. She said she was sorry if what she said bothered me but she had to let me know about programs that were offered. And when she mentioned for me to sign him up for the program that there was a 10 year wait on. It wasn't so if he had to be institutionalized it was so that he would have coverage with medicaid his adult life. It would also help him pay his bills if he is unable to have a full time job or to help family members financally if he has to be taken care of as an adult. I still have to do more reading on it. I told her I know he has some learning delays but for her to tell me over the phone he is mentally retarded I said that really upset me. She said well the word that needs to be used is Intellectual disabilities.

Hope everyone is having a great day!
 

Similar threads

C
Your thoughts, please. 10 yr old.
Replies
14
Views
1K
Crohns dad
C
C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
D
Swollen lymph nodes
Replies
5
Views
2K
Maya142
Maya142
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
K
Calprotectin level after stopping Remicade
Replies
14
Views
3K
kernelmom3
K

Latest posts

Back
Top