Tears before bed, again.....

[Ands]

My big man has cried himself to sleep yet again tonight. Total exhaustion and bloated tummy. He now has another 8 days left of predisolone and as I've mentioned before his symptoms have been slowly getting worse over the last two weeks. Spoke to his ibd nurse last Friday and they thought symptoms sounded more virus like and as my other son and I have had a cold/flu like virus I sort of went along with it. However, as the week has gone on his tummy has got worse.

I feel so helpless knowing what to do for the best, he's got an appointment next Thursday so not long to wait. Might try and get him a blood test first so at least they can review it next week. He's settled so well into his new senior school and now he is worried about having time off. He's not missed a day yet and just about getting through by having about 11 hours sleep a night and not doing any evening activities.

Just wish I could take the pain away from him.

Thanks for listening. X

Ands x

 

[DustyKat]

Oh Ands, my heart goes out to you hun...:hug:

Many people have a relapse of symptoms when tapering off the Pred and it is often the case that they either need to slow the taper further or bump back up to a higher dose before tapering again. Keep onto them if you think this goes beyond what they are suggesting.

I would definitely run the full gauntlet of bloods before next weeks appointment.

Good luck hun, I hope things settle for your lad and all goes well with the appointment, bless him.

Dusty. xxx

 

[Sascot]

Sorry to hear your poor boy is suffering. My son also hates having to miss school when he's not feeling great. Sounds like a good plan getting the blood test done before the appointment otherwise it will be more waiting around which is frustrating when watching them upset and in pain. Hope he feels ok soon!

 

[Ams-Qld]

I'm so sorry...I hope it is a help to know you are not alone. I know very well how you are feeling and I'm sure all of us here send hugs your way. xoxo

 

[Twiggy930]

I hope things get better for your son soon. My son has been dealing with chronic pain since January and finds bedtime the hardest time to cope. I think the time before he falls asleep allows him some time to reflect on everything and it often becomes overwhelming. He has seen a psychologist and it has helped but when he faces yet another night in pain it is just plain hard.

:hang:

 

[Ands]

As Jojo not in a state to go into school today ran his IBD nurse. Getting bloods done later today and then seeing consultant on Thursday. Hanging in until then.

Thanks for all support.

xx

 

[my little penguin]

One simple thing microwaveable hot pack they sell them for backs . DS uses one every night it is calming and helps him fall asleep. It doesn't take away the pain but helps.

 

[Sascot]

Yes, microwavable heat packs are great. When Andrew had his sore tummies he used to virtually have it attached from morning till night. Think it's kinda comforting.

 

[Johnnysmom]

My son also cried while on Prednisone. He is not usually emotional at all but he would just get so sad and frustrated. For some reason this got worse while tapering the Prednisone instead of getting better. His body was also adjusting and he would feel tired but couldn't sleep, and had some stomach and stool issues, and bad headaches. It slowly got better after he was off the Pred but it took probably 2 weeks.

I would certainly talk it over with the Dr. but for my son it was part of the prednisone side effects and withdrawal. He is back to feeling completely normal now. Also Pred is very hard on the stomach and my son was prescribed a PPI until a month after he was off prednisone.

(((((Hugs))))))) Mom and good luck at your appointment.

 

[Farmwife]

I hope the appointment went well and things are setting down.

 

[jmckinley]

Ugh! So sorry your son is having such a hard time! Hope the bloods come back okay. It is possible that a virus or bug might skew the blood results, so ask IBD nurse about that. Yes, the heat packs are great. My son likes heat on his back and ice on his front at the same time...I have no idea why! We did 4 rounds of prednisone this year and he got worse every time we tried to taper off. Really bites considering how badly prednisone plays with their body, mood and appetite!

I hope he can relax, get better, and not worry too much about school.

 

[izzi'smom]

So sad...I am sorry for his (and your) pain- and hope things improve quickly.