Why oh why is my son getting worse rather than better!

[Bubbly]

Well it seems to me that Callum is having a 2nd relapse. Been of steroids for nearly two weeks, been ill with a horrible cold/cough, sick last week in the night, and now the runs have reappeared, have done for the last few days!

He is so so weary, been of school for 2 days, will try and do tomorrow morning, but we will see.

I am just finding this so frustrating, before his diagnosis, he seemed well, he was small for his age and very slim, loved his skinny skinny jeans, lots of energy, desperate to get in the football, shortlisted, and that was his aim for this season, alas no sport been played for 6 months, hardly goes outside, no energy whatsoever, whereas before, he was running backwards and forwards to school, he wanted to get fit for sports day, wanted to win, he game 2nd, loved every minute of it.

Just cant understand why is he going downhill rather than uphill!

Will be ringing hospital tomoz, dont really want him to go on yet more steroids, hate what they are doing to him, not sure what other treatment is out there.

We are UK, so if anybody has any suggestions it would be much appreciated.

Oh and modulen was a nightmare, so thats a big no no!!

Thankyou and i am going to do some research.

 

[imaboveitall]

I can relate to the no energy thing, that's Violet's only symptom at the moment.
Being in the UK, I'm guessing your son's doc uses enteral nutrition? I see you said it was a fail; but do you mean drinking it was? Violet would nerve drink the stuff; she places an NG tube each night at bedtime and removes it as soon as she wakes up. If some of your boy's low energy is due to malnutrition secondary to malabsorption, the formula feeds may help tremendously.
Placing the tube is really nothing; I thought it would be a huge deal at first, she did have it indwelling for the first three mos, then when she started taking it in and out I felt foolish for thinking it would be such a big deal.

I know well the feeling you have; this is absolute torture for us mothers.

 

[David]

I'm sorry to hear he's having trouble

His sicknesses and not going outside makes me think he's probably deficient in vitamin D which no doubt isn't helping things. Or have you had him checked? If he is deficient (many Crohnies are), proper supplementation isn't going to fix everything, but I bet it sure helps and avoids other issues down the road. And no energy always makes me think vitamin B12 (especially if he has active disease in his terminal ileum) or anemia. Small for his size makes me wonder about protein and essential fatty acid intake/absorption.

Too bad Modulen didn't go well

Good luck to you and Callum!

 

[Crohn's 35]

Ok, first what dose is he on now? 20mg and under the symptoms come back he needs to be on something for maintenance. Modulen sucks but I heard you can get Ensure or boost, (ensure is better) and has all the nutrients he needs. Pretty sure your pharmacist or drugist can order it in. My fave is strawberry, shaking it well and keep it cold.

Try to avoid Prednisone it is a nasty drug and long term side effects. Keep us posted ok?

 

[Sascot]

Hi, sorry to hear your son is getting worse. I noticed you said Modulen was a no go. Did he try to drink it then give up? My son went onto Modulen and just couldn't face it - truly disgusting apparently!
We went into the local hospital and they put in a long term Nasal Gastric tube (can stay in for 3 months) and he took the Modulen for 8 weeks via the tube. He went to high school with it in and as far as I know no one ever made fun of him. He was allowed 7up which he drank with family and our regular coffee shop had 7up too which was nice. Between that and the chewing gum and foxes mints he managed fine. It certainly seemed to help him and as yet hasn't had any problems with his stomach.
Good luck

 

[Bubbly]

Thankyou all for your kind words and support, it certainly is tough!

Modulen didnt work due to him refusing to drink it at all, only lasted 4 days and lost weight, we mentioned the nasal tube but sadly he isnt suitable for it due to the fact he sometimes has a problem with swallowing, so they didnt want to go ahead with that option sadly.

I have rang the hospital this morning again, and spoke to a different nurse who was just about to go into a meeting with the consultant, so will speak to him about the issues we are having and call me back, we just waiting on that call.

Callums medication currently is; 2 x Adcal-D3 (calcium and vitamin D3) 75mg Azathioprine, and 2 x 210mg ferrous fumarate. Came of Prednisolone 12 days ago, after a course lasting 12 weeks approx, gentle tappering.

Will keep you upto date when i hear back from hospital, thankyou once again to you all x

 

[izzi'smom]

We are Pred dependent around here...the longest we lasted without it was a month.

 

[Bubbly]

Well still waiting for a call back from hospital, nothing yesterday, rang again today and got an answer machine, will keep on trying!

Bless him, he developed a bad back last night, not sure if its related or not to crohns, never had it before, anybody else had experience of back issues, or is it related to something inside agravating it?

Well i will continue to wait for this call, will start to ring them every hour i think, i will get an answer to this, sent him to school for the morning, he really didnt want to go but thought he might pick up once there as with friends sometime helps, just feeling guilty, pick him up at lunchtime, hopefully he will be feeling a bit brighter.

 

[DustyKat]

I'm so sorry I am late to this Bubbly...:hug:

Have you heard back from the hospital?

Thinking of you, :heart:
Dusty. xxx

 

[Tesscorm]

Hi Bubbly,

Yes, my son had back issues... hurt his back at the end of last summer, all winter his back hurt off and on, his pediatrician thought it was from slouching, the fact that he had grown almost a foot in the previous year and that his injury was not healing quickly as he was still playing hockey (twisting, hitting, etc.). Her recommendation was ibuprofen before games when his back was sore to lessen the inflammation. Stephen was diagnosed in May, at the time, we thought that it was his use of the ibuprofen which had triggered the flare and his GI, then, didn't believe his back pain was related. But, now, Stephen's back hasn't bothered him AT ALL since commencing treatment for crohns and his GI now believes that the back inflammation was related to the inflammation surrounding his intestines.

Stephen's back pain seemed to be 'muscular' and was usually around the mid to top half of his back. We had back x-rays done (nothing spinal) and his pedi. could feel the 'tight muscles'. Regardless of what caused the pain, massage helped him quite a bit as did Tiger Balm ointment. Do NOT take ibuprofens or other nsaids - not good for Crohns!

 

[Bubbly]

Morning all,

Sorry to have to say things are not better for Callum.

Hospital rang back yesterday, they said it sounded like reflux, so are doing a perscription for that, have reduced his iron tablets to just one a day, the calcium doesnt need when not on pred, so he has come of that.

However last night, we had a pizza, something he loves, but he only ate one piece, then at about 8pm he told us he felt ill and sick again, so he sat with us, we encouraged his to get ready for bed, when he got upstairs to the bathroom he was sick, we sat with him in his room, he find it more comfortable to sit up in bed, so lots of pillows, we then left him quiet, just trying to keep him calm, been downstairs 10 minutes, when he came down and said he felt really sick, he was then violenty sick in the downstairs bathroom, he was he tears, saying he hates life at the moment, he wants it all to stop and go away! Eventually at 11pm last night we took him to bed, and hubby said he would sit with him, so propped up in bed once again, hubby in chair, hubby did want to take him to A&E not sure they would do anything to be honest! Callum was white at this point and shaking with cold, his temp was 37.1, he was sick a couple of more times in the night, but eventually fell asleep with hubby reading to him.

Rang the hospital this morning, greeted with answerphone and awaiting call back! About to call the GP, this cant go on, the boy little lad is so poorly at the moment, and we feel completely and utterly helpless with the whole situation.

Will of course keep you all up to date with any changes x

 

[Sascot]

Oh dear poor boy! Hope he feels better soon. I just noticed in your post that you said he is on iron tablets. You are also in the UK so I thought I would say that my son is on iron but he is given an iron liquid (Sytron, I think). I was told by a nurse that it has alot less side effects than the tablets. I'm not saying the tablets are causing his symptoms but I have heard that iron tablets can upset the stomach and cause nausea. It might be worth checking out.

 

[Tesscorm]

I'm so sorry that Callum is feeling so badly! I hope you hear back from the hospital soon so that some treatment can begin! :ghug:

 

[Bubbly]

Evening all,

Feeling more positive about things tonight after spending the afternoon at the hospital.

They believe he has a further issue, which looks like where the small bowl joins the large bowl, sorry not very good medical terms, when they did his scopes they couldnt see this area as it was so red! The consultant thinks its the thickening of this section, he examined him, and his poor tummy still very sore.

We have the option of two procedures, barium but done with a feeding tube, or god a cant remember the name, but he has it under a general, similar thing with something down the throat and dye, sorry been a long day! The decision will be based on which appointment the consultant can get first, he wants it done asap, and they will ring me the begining of the week with details.

They dont want him to go back on steroids, but he is on azathioprine and a reduced iron tablet dosage, and perscribed him something for the stomach cramping and also very strong liquid coydene, so hopefully these will help in the meantime.

The consultant feels it is the narrowing of this section and if tests confirm this he will require an operation to remove this section. Have to admit thought the operation stage would be years away, so that is a shock, but we will do whatever is needed to make him better.

They wanted to try and put him on a liquid diet, but after the disaster with modulen, they are holding off at the moment, dietician will call on monday to discuss other options. They feel the section is very narrow, therefore his food isnt getting through hence the sickness etc, so he needs soft food, being a 13 year old is a struggle, but currently we have decided on ice cream, angel delight, custard, he doesnt like milkshakes or smoothies, so wi will be experimenting with things i think.

Thankyou all for your support and advice, will keep you all upto date this his progress, and try and remember the name of the other test!!

 

[David]

I'm glad you're feeling a little more positive

They're likely referring to the terminal ileum. That is the last part of the small intestines which then connects to the colon via the ileocecal valve.

 

[Miss Underestimated]

The swelling and blockage can happen really fast. I hope they got the tests done smoothly and you all get some peace.

 

[DustyKat]

Hey bubbly,

I am so sorry I haven't been back till now and I'm so sorry to hear that Callum is still having issues...:hug:

I wonder if the other test could be an enterogram? My son had one following his colonoscopy as the GI didn't want to push through the inflamed area. It was very accurate at pinpointing exactly how much of the small bowel was affected.

I hope more than anything that things start to settle for Callum very soon.

I understand how scary the thought of surgery is and I also understand that surgery is considered a last ditch option, in many cases, when it comes to Crohn's and why it is considered so. I don't know if this will be of any comfort to you but I shall put it out there anyway. I have found myself in the situation of both of my children requiring surgery as an only option and I have worried over the years about their need for further surgery. I have also wondered over the years what Sarah's life would be like now if she had had the opportunity of going down a different path, meds etc, as she was diagnosed on the operating table. Then Matt became ill and although medication stabilised his condition they were unable to to do anything beyond this, perhaps this gave me a glimpse into what Sarah may have gone through. My children have had wonderful outcomes from surgery, it put them both straight into remission and they have since gone on to living their lives to the full, such a stark contrast to the dark days they were in prior to it. I am in no way a proponent of surgery but I do wonder at times if surgery isn't held off a little too long in some cases. I am just thinking out loud here bubbly and am in no way saying this is the case with Callum.

Dusty. xxx

 

[G's mom]

Hi Bubbly,

Poor Callum, my son was on a soft diet for over a month because of swelling in the TI area. Our dietian recommended www.kidshealth.org. I looked under the cystic fibrosis menu for high calorie items. Have you tried making a real thin potato soup? Since Garrison was loosing so much weight I put heavy cream as well as lots of butter, cheese and sour cream in it. We added protein powder to everything we could and were able to get some tasteless (almost ) liquid protein from the dr that helped. Did they tell you to avoid fiber? Fiber really irritated Garrison. I hope things improve quickly.

Take care,
Vicky

 

[kimmidwife]

Hi Bubbly,
I just wanted to see how your son is doing.