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12-03-2011, 07:23 AM   #1
Bubbly
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Not with it at all!

Hi, havent been on here for a while, things seemed to have calmed down since the nightmare of Modulan, which ended up with son loosing 3kg, put straight onto Prednisolone.

Started on 9 x 5mg tablets, reduced by 1 every week, currently on 4 a day and about to drop to 3 on Monday.

He was doing ok, huge appetitie, eating me out of house and home, part time at school as very weary, weekly blood results are good, just started going fortnightly, so all positive, until.....

Thursday he said he had a headache, and felt odd, couldnt explain it, it was after school and done a full day, Friday went to school, said he didnt feel right, but i still sent him (bad mummy!) trying not to wrap him in cotton wool! he stayed all day, no phone call to collect him, but he said he felt strange, like he was in a dream and couldnt concentrate at school, not his usual bubby self at all at the moment, the last week or so he had really picked up, being a typical cheeky 12 year old!! He also aches, especially his legs, limps alot at the moment, have mentioned it at gp when doing bloods and they said it was a side effect of steroids.

Just wondering if anybody had any advice/suggestions of how to get through this, how to make things more comfortable for him.

Many thanks
12-03-2011, 03:33 PM   #2
DustyKat
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Hey Bubbly,

I'm not sure but some people do have issues when tapering Pred, symptoms start to reappear so an increase is required until it settles again and a slower taper is then commenced.

Is he favouring one side when he limps?

Aching can be a side effect of Pred, particularly when tapering but I wouldn't have said that limping necessarily was. My son was on Pred and developed a right sided limp, it turned out he had an psoas abscess.
Just be aware that Prednisone can mask symptoms and bloods can change quite quickly.

Is his CRP being checked?

Where is your son's Crohn's located?

I hope things settle for your boy Mum, it is such a worrying time for you...

Dusty. xxx
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12-04-2011, 10:58 AM   #3
AZMOM
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Imwith Dusty On the questions.

Have his joints been checked? Not to give you something else to worry about but keep peripheral arthritis on your radar. If the limp is worse in the morning and improves as he moves, I would ask.

I hate pred tapers because they do sometimes seem to crash. This last go Claire had terrible foot pain right after two dosage decreases but then it would subside.

Thinking of you all-

J.
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12-05-2011, 07:28 AM   #4
Bubbly
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Thankyou both for you comments, very helpful.

His aches have gone, nothing at all at the moment but will keep an eye on him. Just had his blood tests back which show his iron levels are low so therefore has anemia, so back onto iron tablets, well at least it does explain alot, so so weary at the moment, hospital say he should be back at school full time, doctors say take it day by day, he has gone today as he had a nice long rest over the weekend, busy term this term with all the christmas activities going on!!

Has said he still feels like he is in a dream and not with it at all, and didnt eat alot yesterday, which isnt like him at all! Steroids down to 3 a day from today, will wait and see what happens!

Thanks again to you all for your support :-)
12-05-2011, 02:58 PM   #5
DustyKat
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Thanks for the update Bubbly.

It's good to hear the aches have settled again. I hope it stays that way and it is indeed the Pred taper causing it.

Has he had his B12 checked? If not please have them check it as well as Folate and Vitamin D.

Good luck to your boy and keep us posted!

Dusty.
12-08-2011, 07:10 AM   #6
Bubbly
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Thought i would update on progress, or lack of it!

Aches have gone, but is sleeping alot, half day yesterday at school, left him sleeping this morning, so no school today, think he might doing tomorrow morning, then he also has to go to school on saturdays, mornings only!!

His symptons do seem to have come back, going to the loo after every meal, and loose bowels again, seems to have dropped low very quickly, the difference in 2 days, its been a shock to be honest, lost his appetite also, which isnt good!

Have rang the specialist nurse, yesterday and today and left messages, but no reply as yet!! Why is it always when you need to speak to somebody you cant get hold of them!!

Due to take hubby away for a long weekend, surprise for his 50th birthday, going to London, staying in a fab hotel, going to show, been booked for more than 6 months, but have to admit dont feel like going at the moment! My parents are having the boys, but mum has earlier on set alzhiemers (spelling!) just spoken to her and she was so confused, just need to speak to my dad, make sure they are ok to have them still!!

Sorry ranting and rambling away, currently feel like wishing december away, cant wait for January to come!
12-08-2011, 09:31 AM   #7
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Hi Bubbly,

I'm sorry he's not doing better. Hopefully, you'll hear back from the dr. soon and get some sort of plan for treatment.

Try to enjoy the weekend! I know it won't be the same as a 'worry-free' weekend but getting away, seeing a show, etc. will relieve some stress! I had a similar situation in mid November - went away to Bahamas for a 50th as well and kids at my parents but with the worries in my head and all the organizing (son's needs, parent's concerns, etc.) prior to leaving, I would've been happy to cancel. But, I went, had fun, no concerns at home and came back wishing I'd booked for longer! Just leave lots of detailed instructions - what to do if 'X' happens, what foods are good/bad, all the emergency numbers (GI, ped, etc.), directions to clinic/hospital, etc. As I happened to be speaking with our GI office a few days before leaving, I even explained the situation and made them aware that I would be away... just in case my parents needed to call... Most of the info was unnecessary but it alleviated some of my concerns and my parents'.

And, just a suggestion for the future... do you know any other IBD parents nearby? If possible, try to meet some... Coincidentally, very good friends of ours (actually my son's godparents!) have a daughter who also has Crohns and is a patient of the same IBD clinic. The biggest concern 'reliever' while I was away was knowing that both my son and mother could contact them and they would be as experienced as me in deciding what needed to be done.

I hope things improve for your son and that you enjoy your weekend!
12-08-2011, 10:38 AM   #8
Bubbly
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Thankyou for all the advice.

Hospital rang back, after lots of questions, they confirmed that he was sadly having a relapse and best course of action is to up the steriods up to 40mg, not a shock to be honest at all. When i mentioned that the gp wanted to put him on iron, she said to hold off it for a while, his insides didnt need anything else at the moment to deal with, will make a decision after bloods next wednesday, which hopefully will show things have improved!

Just being typing lots of info for my parents, re tablets, times, quantities, complete with tick boxes so they are sure they are done! Lots of phone numbers and contact details also.

Right best go and get myself packed!! Just need to go and get this perscription, which they have probably run out of, as normal!!!

Thanks to you all x
12-08-2011, 03:10 PM   #9
DustyKat
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Hey Bubbly,

Good to see they are getting on top of things. I hope all settles for your boy again!

Now away you go and enjoy, enjoy, enjoy!

Dusty.
01-09-2012, 10:51 AM   #10
Bubbly
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Though i would just update, as been a while again!

We had a fab weekend away, just the two of us, much needed time together.

Callum still not right, steroids going down slowly, iron tablets started slowly, and bloods taken on Thursday at hospital, so fingers crossed they come back ok.

He is still part time at school, the hospital said they would like him back full time by half term, 6 weeks to go, we go back to hospital in 6 weeks to check on progress and also to decided about iron levels, if they havent seen an improvement in that time that will administer iron by iv, which doesnt sound nice at all, Callum also not happy about the prospect, so trying to find iron rich foods to help him along!

Still very dreamy at times, and feels spaced out, been told its to do with medication, Christmas was one long sleep session! We had to cancel new year plans as it wasnt fair on him, quiet night instead with a bottle!!

Sadly he does feel like he is missing out on things at school, friends parties he has had to miss, paintballing, not a good idea and he couldnt face it, friends are also doing alot in the holidays and sadly he isnt getting invited at the moment, he does seem very quiet today when i picked him up from school, he also said that people have noticed the change in his face (moon face), one of them called him something not very nice, which i think they thought was harmless, but they way he feels at the moment has upset him, so will be speaking to school about it! He has enough on his place at the moment without being called names!!

Steroids are currently on 5 a day, down to 4 on friday, fingers crossed that the symptons dont return this time, we go to 3, just, last time and symptons returned, hospital mentioned that if it does return they will look at changing the steroids to a different type, have to admit i worry about the steroids and the effects they are having on him. He has gained 1 stone, but not grown, which apparently is normal, hopefully the growth will come if not he will be refered onto a specialist!

Callum also has problems with his eyes (a squint) not the technical term, but easier! Had two ops already, one when he was 18 months the other at 5 years, needs a further, which we are going discuss on friday, however i feel will everything else going on i will be asking for it to be put on hold, it is for cosmetic reasons, so i think they will agree, he is also due to have a brace fitted in July time, but again, think this may also be delayed, again good idea i think.

Anyway, sorry keep rambling, i will sign off and go and attack some housework!
01-09-2012, 01:07 PM   #11
kimmidwife
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Hi Bubbly,
I know kids can really be mean. My daughter also really suffered with the moon face and she also got very bad steroid acne. One of the kids did make a comment but I spoke with her school and they took care of it immediately. Is his school supportive and helpful? Also for the IV iron it is not bad. I had to have it twice when pregnant with my last child. I had hyperemesis (severe vomiting) and became very anemic. Some people do react to the
iron. Make sure they infuse it slow and ask if he should be prememdicated with benadryl or another antihistamine. There is a great very gentle liquid iron supplement that we use now when Caitlyn is anemic. It is called Floradix. It is made from flowers and well absorbed. I think it is available over there because it is made in Germany. If not you can get it online. If you call the company and tell them your sons iron level and his weight they will tell you exactly how much to give him instead of using the regular dose on the package. They are extremely nice.
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Last edited by kimmidwife; 01-09-2012 at 01:08 PM. Reason: spelling mistake
01-09-2012, 03:04 PM   #12
DustyKat
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Hey Bubbly,

Thanks for the update hun.

So good to hear you had a fab time away.

Good luck with the bloods! Keep us posted on how he goes! Have they tested his B12, Folate and Vitamin D too?

I hope things start to settle soon and your boy hits on the right treatment for him, he has so much going on at present, poor love...

School can be a difficult place to be at times for our kids. Please have a look through this thread, you may find something there to help you and your son when dealing with the school...

http://www.crohnsforum.com/showthread.php?t=18420

Good luck!

Dusty.
01-10-2012, 09:41 AM   #13
Bubbly
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Thank you both for the support, advice and kind words, much appreciated.

Floradix is available here in the uk, he did have it a couple of years ago, he caught swine flu and was treated, and i have to admit he has never really been the same since, and a friend recommend Floradix which he tried, didnt like it, but gave it ago, will look into it once again, might be worth another go.

The other blood tests mentioned above, i believe the hospital have tested, just awaiting results this week, with give them a call to check up on them.

He is doing a full day today, so fingers crossed he manages ok, he does have a good support group of friends and school have been good and supportive of all issues, which is good.

If he has the iron by iv, it will be a day in hospital, they have to try a very small dose first, and wait to see if there is any reaction, if all ok he will be given it very slowly over a couple of hours under close supervision. Will say he seems to have sorted me out with needles, used to hate the sight of them, but not bothered by them, which is good, and i have never let him see that i disliked them!

Touch wood for a good few weeks and treatment plan settles down.

Thanks again to you all xx
01-11-2012, 04:45 AM   #14
DustyKat
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I hope all goes well with school hun and he is able to get through okay.

Good luck and keep us posted!

Dusty. xxx
01-13-2012, 12:33 PM   #15
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Hi Bubbly,

My son is 12 and has iron infusions on a regular basis. (Knock on wood) He has never had a reaction but is still given benadryl before every treatment. He also has something for nausea because it does upset his stomach. What we have found to work for him is to drink a lot of water starting 3 days before treatment to get his veins in good shape for the IV. The treatment last about 6 hours so we make sure he has plenty of snacks such as crackers, pretzels, etc. to keep the nausea to a minimum. He has no problems returning to school the next day and his iron stores are almost back to normal. So the treatments are helpful. I hope they work for your son as well.

Take care,
Vicky
01-19-2012, 06:26 AM   #16
Bubbly
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Thought i would just update on how Callum is getting on.

Started iron tablets slowly, so far so good, seems to be picking up also, slowly, but being cheeky so a good sign.

Tiredness still a big issue, and only part time at school, comes home monday and wednesday afternoon due to sport those times. He has also had exams this week, just for school purpose, to help with setting etc, he has been excused from taking some as missed so much, we will see what effect the results have on his school life and whats best for him, if he goes back a year, or if he can drop some subjests and concentrate on others.

Had a phone call yesterday from hospital (Addenbrookes) just confirming iron level low, but also that his renal (spelling!) his slightly higher than they would like, so they will discuss with the consultant and let me know the outcome! Not quite sure what all that means, but will have a read and find out some more.

So all in all, improving slowly, going in the right direction, steroids slowly going down, we go to 3 tomorrow, which is what we got to last time before the relapse, so fingers crossed.

Thanks to you all for continued support and advice xx
01-20-2012, 04:35 AM   #17
DustyKat
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Thanks for the update Bubbly.

I so hope things continue to head into positive territory...

Renal is right if they are talking about his kidney's. Let us know how he gets on. Everything crossed that that the taper goes well!

Dusty.
01-20-2012, 07:52 AM   #18
G's mom
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I hope Callum's progress continues. What are his iron levels? Garrison would be exhausted by the end of the school day when his levels were especially low. We now see a hematologist, which has made the difference in Garrison and school. While he is still not back to normal, he can stay at school all day, sometimes even all week.
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