Newly diagnosed daughter on pred

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Stephyjane

Stephyjane

Joined
Aug 16, 2012
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225
Hi,
I'm new to this forum, my daugher was diagnosed with Crohn's disease just before her 10th birthday in June this year. She was started on a 9 week course of Prednisolone, starting at 40mg, and Azathioprine. When she had her scopes they found extensive Crohn's through her entire tract. We are now 2 weeks until finishing with the Pred and my daughter is still having a bad bout of diarrhoea each day, joint pain and no energy. Her inflammatory markers are still quite high, although her consultant won't tell me what they are. Does this mean that the steroids have not been as successful as hoped. It's so hard to get a straight answer out of the drs. When do I know when she is in remission. Sorry to ask so many questions, but I'm just so confused about it all, and paranoid about every little symptom she has. She says her tummy feels wonky most of the time and she has a lot of gas, but the Steroids have made her so hungry! Thank you for taking the time to read this. x
 
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Hi and welcome. Your instincts sound correct to me. I am sure the doctor has a next plan if the pred/aza is not enough. She may just need a bit more time for the aza. You should be able to request copies of all test results ... it is important for you to know the values too. Good luck.
 
Hi and welcome.
Sorry to hear about your daughter.
No advice to offer. Just wanted to say welcome.


Farmwife
 
Thanks for the reply Jeanne and the welcome Farmife:ysmile:, I have found this forum to be so helpful when everything has felt so crazy. I will ask the consultant at next weeks appointment about Ellas blood results, I only know they are still high as I get a copy of the letter he sends back to the GP after seeing Ella. He also says he is concerned about her stool consistency and may hold off on coming completely off the Pred. And yes you are probably right about the Aza as he did say it takes a while to start working. I still can't get my head around how life can change so drastically in a couple of months, but after reading the posts on here of what other people are going through, I feel bad for feeling like that.
Steph
 
Hi Stephyjane,

Glad you've found the forum :) but am sorry that it's your daughter's illness that brought you here :( Feel free to ask as many questions as need be - you'll find lots of supportive and experience parents and member here. :) But, as dannysmom said, you should certainly be able to ask and receive copies of results. At my son's GI, the nurse sends me 'excerpts' of the results but I am able to contact the Health Records department directly and request copies - perhaps your clinic/hospital has a similar service???

I don't have experience with pred or aza but I'm sure some other parents will be along with advice.

But, FWIW, if she is still having the symptoms you've described, I don't think the pred has taken her into remission yet. Remission should be symptom free, including inflammation markers, etc.

Did the GI mention Enteral Nutrition? It's another treatment option that's able to induce remission - it usually runs approx. 6 weeks and, unfortunately, means that during that time period, food is replaced by the EN formula which is formulated to be easily digested. It is a challenging treatment. :( However, it has no side effects, has a similar success rate at inducing remission as steroids, provides all necessary nutrition, allows for bowel rest and has anti-inflammatory and healing properties. the formula can be ingested orally (by drinking shakes) or through a naso-gastric tube as my son did (much easier than it sounds). Although, my son is older (was almost 17 when he started his treatment) and more aware of the necessity of treatment. The two links below will take you to more info re EN.

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/showthread.php?t=36345

I hope your daughter begins to feel better soon!
 
Hi StephyJane,

I am 25 years old and was diagnosed with Crohn's aged 11. I was initially blasted with steroids and mesalazine. I was on these for what seemed like years and they didn't make an ounce of difference, The steroids did bring the flares down but the side effects were awful. I was used as a bit of a guinea pig really as I think they didn't really know how to manage it either. I was put on an elemental diet using Fortisip drinks (I only liked chocolate ones) froma ge of about 14ish, this was done a few times over my teenage years and although hard to deal with at first (many fantasies about McDonalds and chocolate) I started to enjoy it, I felt great, my hair was growing back (fell out after a nasty flare). The crohn's settled and I didn't want to go back to eating if I was honest. That changed when I went to an adult hospital and the consultant is not pro-elemental diet. He wanted to attack any flares using biological treatments. I was one of the first 8 in the country to have Infliximab and it worked wonders, then it stopped working after a few months/ year. When this happened I had to have surgery as the crohn's was too much - I didn't need a bag. Over time the crohn's has settled more and I am now on Adalimumab (Humira) and it was working well, though has some annoying side effects -skin problems. My family and I read up on steroids and the long-term damage they can do. As I had been on them for a long time and I was worried of its effect on fertility I stated to the adult consultant as soon as I met him that I will never have steroids again. He has respected my wish and has never mentioned them.

I understand that steroids are effective (most of the time) at stopping a flare but there are plenty of other less side effect inducing treatments. If you private message me your email address I will send you research articles my dietician friend sent me in favour of elemental diet. I am pro-elemental and I think it will hugely benefit your daughter long-term as she is probably too young for biological treatments (not sure). Don't let them fob you off with steroid treatment all the time as I know it is the most cheap method and they like to keep it that way (I have been told it is the cheapest way by them!). I am now on £10,000 a year Humira but as the Loreal girls say "I'm worth it" lol.

I honestly believe that crohn's flares are difficult to manage with children/teens as the hormones can play mischief and I think that my flares were down to my hormone fluctuations.

I really hope your daughter's flare settles as it is miserable for a child to go through and my best wishes for good health go to her.
 
Thank you so much for your responses. Before Ella was diagnosed her main symptoms were chest pain, abdominal pain and constipation, we eventually had blood tests which showed raised inflammation, the doctors were not too concerned, but then she started losing lots of weight. Ella is very tall for her age at just under 5ft at 9 years of age and very active, swimming in a squad and dancing etc, the usual things a child likes to do, so I knew something was wrong when she no longer had the energy to do them. She then had suspected throat infections, UTI's, her school thought she must have an eating disorder or a problem at home as her dad isn't around. The doctors still said she looked really well and as she didn't really complain didn't seem concerned. We decided to go privately to have her scopes done and that's when she was diagnosed moderately severe. The doctor wanted to put her on a liquid diet and start the azathioprone at the same time, but when we came home and started her on it found out they had given us the wrong one. She was then put on Elemental 028 which she hated and it made her nauseus and gave her chronic diarrhoea. She tried Fortisips but by this point she just refused to drink it. Infact she was probably at the poorliest I had seen her, it was heartbreaking. The dr then gave Ella the choice of total nutrition or medication. ( as if a child knows what they are choosing when in a totally alien situation) and chose medication. So I think it will be really hard at the moment to even get Ella to drink the drinks. Sorry to blab on and thanks again for reading it
 
Your poor daughter, no wonder she wants nothing to do with EN! :(

But, just something to keep in mind, I know there are a number of parents here whose kids are on EN only as a supplement. She won't get the benefit of the bowel rest, etc. but she will get the nutritional benefit which may help her energy levels and help her regain some weight. In this case, I imagine you wouldn't necessarily need the 'true' EN formulas and you may be able to find a nutritional shake that tastes a bit better???

:ghug:
 
Sorry to hear about your daughter, she sounds like she is having a hard time. My son had the Modulen exclusively for 8 weeks - he couldn't stand the taste of it so he had the NG tube in (he went to high school with it attached to his cheek), but apparently alot of the kids manage to drink it fine with an added flavour - maybe worth seeing if they have that. Good luck, hope she feels better soon.
 
Hi StephyJane,

I am sorry to hear your daughter is so sick. It is hard not to be able to make it better with a hug and a kiss. I have a bunch of questions for you.

Did the prednisone ever help her feel better? I assume she is weaning off the prednisone - dropping the dose each week. Do her symptoms seem to get worse when the dose drops?

You said she had constipation as one of her symptoms. When did that switch to diarrhea? How much diarrhea? Has anyone done any stool tests for parasites or c. diff?

It usually takes 4 months or so for AZA to kick in and become effective. So you may have a little ways to go before you know if it is going to work or not.

How often is the specialist ordering labwork done?

As for the inflammatory markers, if he is getting her ESR done, that will stay elevated for a very long time, long after the inflammation is better, so it is not necessarily helpful.

Another measure is CrP which can be a more helpful measure of inflammation. If that is still elevated then that is a clearer sign that she still has a lot of active inflammation.

You might want to try limiting the dairy and bread products she's eating and see if that helps at all. Those foods have very large complicated molecules that are hard for the gut to digest, especially when it isn't working well. So cutting back on them may help her feel better and help reduce the inflammation a little bit. The exception to this seems to be yogurt. So if she will eat that, I would offer it, especially the kinds that don't have corn syrup in them.

Best wishes,

Patricia
 
Thank you to everyone for all your responses.
We have seen improvement since being on Prednisolone, she is also on Omeprazole which I think helps a lot too.
Her diarrhoea started pretty much from diagnosis, with one time when she got really blocked and needed an enema. I keep a food diary but cannot pinpoint anything that may be causing her problems.
She has blood tests weekly at the moment, I think that is because of being on the Azathioprine. The abdominal pain is much better, her main symptoms at the moment is the daily diarrhoea, joint pain with clicking when she
moves sometimes and terrible tiredness and lack of energy. She complains that her tummy is gurgley and has lots of wind.
We have been tapering the Pred, she started on 40mg for the first two weeks then we have dropped 5mg each week from then.
The side effects have caused extreme hunger and her face to puff up but that is fine if she feels better.
I hope all of your families are well and thank you for your help.
Steph x
 
Hi Stephyjane and :welcome:

I am so very sorry to hear about your daughter, bless her...:hug:

It's a shame that EN so very often tastes...bleh! :voodoo:...maybe an NG tube may be a consideration??? Although that often isn't an easy sell either! As Tess has suggested, maybe look into something that is a tad more palatable as a supplement. It may help maintain her weight and have her feeling a little better for it.

It is good to hear she having a response to the prednisone and as stated, it will take at least 3 months, sometimes up to 6 months, for the Aza to become fully therapeutic. Your doc sounds on the ball so no doubt he will have further plans up his sleeve if Ella isn't responding as expected.

To the fatigue side of things...has she been had blood levels done for B12, Folate, Iron Stores and Vit D?
If not it would an idea to request them and see if that may go some way to explaining her lethargy.

Good luck and welcome aboard!

Dusty. xxx
 
Hi Dusty,
Ella has her ESR and FBC and another blood test that checks everything else ( I don't know what that is) every week at the moment. I know that she has had different ones as we've gone along. I'll ask about the ones you have mentioned when we go next week. She is very emotional at the moment and has waves of sadness come over her ( her words), and wondered whether the medication may be contributing to that.
I want to thank everyone for their kind words and suggestions as it really does help.
Steph x:ysmile:
 
Hey Steph,

The other blood test you would be thinking of is serum chemistry, it covers electrolytes and liver and renal function.

Prednisone has the potential to cause depression, mood swings and personality changes so it may well be down to the medications. Just having this disease is a big enough cross to bear for them without the side effects of the drugs, poor love...:hug:

Dusty. xxx
 
Welcome to the board Stephyjane and sorry to hear about your daughter. I hope you can find a treatment that works for her soon and get her feeling better.
 
Welcome aboard Stephyjane and I'm so sorry to hear about your daughter! Our daughter was just shy of her 10th birthday (May 2012) when we recieved the diagnosis of Crohns. She had lost 22 pounds since the beginning of the year and had NONSTOP diarrhea every day with belly pain and EXTREMELY ELEVATED inflammatory levels. It is one of the hardest things to watch! :-( Breanna was started on Omeprazole, Prednisone 60mg, and Azathropine. After almost 3 months NONE of these were effective at all! Our GI doc was amazed at the complete lack of response to the Prednisone(she didnt even have a puffy face)! He discontinued the Prednisone and Azathropine and put her on Remicade Infusions. She has had 2 of these infusions thus far and is now in REMISSION!! She doesn't have the nonstop diarrhea, she has gained 10 pounds AND she is back to feeling normal with no belly pain! You will DEFINATELY be able to know when your litlle girl is in remission. I hope you see improvement soon and your little girl feels better! Prayers to you all! Keep your head up!!
 
Hi Breanna's mom,
Wow, I keep reading posts of children being diagnosed at this age, one thing that keeps going through my head is, were our children always going to get Crohn's and just waiting for something to trigger it, or could it happen to anyone of us. Did your daughter have any previous signs that something was wrong. My daughter has a nut allergy and had other mild allergies as a baby which she outgrew. Although she is extremely active and always one of the tallest for her age. I know deep down she is not in remission , as each day as we taper off the Pred she is having more symptoms.
I'm sorry your daughter is poorly too, but good news she is responding to the new treatment.
Take care Steph
 
When we rang our gi regarding symptoms comming back with the taper, on gi advice the taper was slowed. I advise contacting your gi.
 
Stephyjane- Breanna had been battling allergies and had just started allergy shots in November of last year but she had reactions to them so they discontinued those and just kept her on Zyrtec. Besides that she was pretty healthy until around February we noticed she was losing alot of weight but never really complained of anything. She remained active and acted like nothing was wrong. Then it all started late April early May when she would be perfectly fine playing then just start BAWLING with belly pain. After about 25 minutes she would feel fine then go back to playing like everything was fine. It wasn't until one day I walked in on her getting dressed and noticed she was ALL SKIN AND BONES (the clothes really hid the massive weight loss!) :-( and the continued belly pain, lack of energy and paleness did we take her to the ER. I agree with Catherine, I would call your GI because she may need to slow down the tapering process. I hope you find relief soon!!
 
Poor Breanna, and the amazing thing is that they carry on, I know with Ella I made excuses in my head about Ella's weight loss, until friends started commented. I'm so glad that Breanna is feeling better and hope she remains in remission for a long, long time. Ella's started getting the burning feeling in her tummy so I shall speak to her dr today.
Take care
Steph x:ysmile:
 
Hi,
I just wanted to ask, does anybodys child complain of back pain? my daughter has very achy joints but is now complaining that her back hurts more than usual, even when I rub it. She also says it feels like her skin is burning sometimes. Could this also be down to the medication? We are seeing her consultant tomorrow, but I honestly think I get better answers here.
Thanks
Steph:ysmile:
 
Hi - Joint pain is an EIM of Crohn's ... including lower back pain. My son is not diagnosed w/ Crohn's, but does have migrating joint pain and sometimes complains of painful, tight skin.
 
Hi Steph,
It seems that back pain can be a symptom of crohns. It has been talked about on this forum in the past. It is usually a sign the crohns is active and maybe the medication is not doing its job. The skin burning I am not sure about.
 
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Hi ,
I have read about joint pain being a symptom, but I suppose I was still hoping that the Pred was going to work even though she's nearly finished the 9 week course.
I find it so frustrating as I know when we see the consultant he will say Ella looks really well and doesn't complain, but she has been like that all the way through, until they did the scopes and found she is really poorly inside. I feel like a paranoid mother. I'm also not confident when talking to the drs so don't get the answers I really want. :confused2:
 
Hi Steph,

My son has off/on again back pain. He had back pain for months preceding his diagnosis and treated the back pain with ibuprofens. I don't know if the back pain was an early indication of Crohns/GI inflammation or if the use of ibuprofens triggered the Crohns??? His back pain did disappear once he began treatment for his Crohns. My son's last MRE showed inflammation and he has recently been complaining of back pain.

However, while it seems that his back pain is directly tied to the GI inflammation, I can also neatly tie his back pain with physical activities/injuries... so, while I am not entirely convinced it is directly related crohns, I do consider it to be a very strong 'possible' indication of GI inflammation.

FWIW, his back pain was/is usually lower back and often radiated up to his shoulder on his right side. Do NOT use ibuprofen as it can worsen GI issues. My son found Tiger Balm ointment helped quite a bit to relieve his back pain. He's also found that stretching exercises help quite a bit.

Can't help re the burning skin.

:ghug:
 
Stephyjane said:
I'm also not confident when talking to the drs so don't get the answers I really want. :confused2:
Click to expand...

It's so easy to be overwhelmed by the discussion of treatments, symptoms, etc., etc. especially when it's all new and the terminology, itself, is new!

Before I see the GI, I write all my question down, with space for me to note the answers... I find that looking down the list and making sure I haven't left any 'blanks' keeps me focused and 'removes' that nervousnous... :) More than once, when the apptmt is 'over', and the doctor starts to stand, I've said... 'oh, I just have a couple more questions...' :) If I've written it down, I don't leave until every question is answered :biggrin:
 
Thanks for the advice,
I will definitely try the Tigerbalm on her back, Ella has always been a keen dancer and swimmer and was hopefully going to try a bit when she's back at school in Sept, I was hoping a little exercise may help with the achy joints.
I will take my qu's and notepad when I see the consultant and hopefully it'll help.
Thanks again Steph x
 
Hi:ysmile:
We had our appt with the consultant yesterday, and he has said Ella is to stay on the Prednisolone for now and has upped her dosage on the Azathioprine, he is also starting her on Salofalk 3x a day. He has concerns that her symptoms will come back with avengence if she comes off the pred.
She also has had a x-ray on her spine as her back is just so painful at the moment, I've also noticed that her appetite is diminishing again!
I feel sad that this steroid course hasn't worked, but the consultant does seem to be covering all areas.

I also want to say what a lovely, informative forum this is, it's really helping me at the moment as I think I'm going in for 'the most paranoid mum award!':rosette1:
I actually think Ella will be glad to go back to school after the hols to stop me watching her like a hawk, I'm dreading it.
 
Stephyjane said:
Hi,
I just wanted to ask, does anybodys child complain of back pain? my daughter has very achy joints but is now complaining that her back hurts more than usual, even when I rub it. She also says it feels like her skin is burning sometimes. Could this also be down to the medication? We are seeing her consultant tomorrow, but I honestly think I get better answers here.
Thanks
Steph:ysmile:
Click to expand...

While on prednisone, my son also complained of tingling skin sensations. Not necessarily "burning", but he said it was more like when your leg or arm falls alseep. We just attributed it to the pred and it was short lived. It was pretty annoying for him though and would keep him up at night.

Hang in there with Ella and the doctors! As her mom, YOU are the best advocate she has and know her better than anyone else. Be persistent, be proactive, and go with your instinct. Someone once told me that specialty doctors (like gastroenterologists) are typically only concerned with their 10% of the body. They may be the experts in that area, but you are the expert on your child. And, of course, keep checking the boards here... there are a lot of wonderful people with a lot of experiences.

Good luck!
 
Glad it went ok at your appointment. Her doc does seem to be trying to cover everything. Hope the increase in meds does the trick! I know what you mean about the paranoid mum bit - I actually have to stop myself from constantly asking how my son is as I don't want him to get as worried as me!
 
Panic attack! I've just picked up Ella's new medication and she has to take an extra 6 tablets a day. She has real issues with taking medicine and when she saw the size of them and how many she has to take had a major breakdown. It's so hard to explain to a child that she has to and what could happen if she doesn't.
We already do a reward sticker chart for medications, weekly blood tests etc. does anyone have any advice, she adamantly refuses to take the medication rectally.
It's so hard also when drs promise that they'll feel better by now and it hasn't worked :-(
Thanks in advance
 
I know Sascot I say to myself each morning that I'm not going to keep asking my daughter if she's ok.
One of the Child Psycologists we are working with said something when we first saw her which I try and keep in my head to stop myself going over the top.
"Treat an child like an ill child, and they become an ill child"
 
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Hopefully, you’ll get some good ideas re the meds! My son was older when diagnosed so I didn't have to deal with this challenge.

But when my kids were younger, I often also did 'rewards' for homework, trying new foods (fruits and veggies were like the worst medicine EVER for Stephen :yfaint:)... a couple of things I did were...

- a treasure chest - I filled a box with little, inexpensive trinkets and they could choose one item from the box as a reward.

- reward chart - I filled a large poster with grids (like a calendar) but left the top 5 or 6 inches blank. In the blank area, I let my kids glue cut pictures or draw pictures of rewards they wanted and then I gave the rewards 'values', ie staying up 15 minutes later only 2 stickers, a trip to the zoo 20+, etc. To try to entice them to try new foods often, I had 'incentives' :lol: - bonus stickers if he reached a certain daily or weekly number!

Probably not too different from the rewards you're already giving but sometimes just a 'change' can create some interest/excitement for them :)
 
Thank you Tess, I love the idea of the treasure chest,:ysmile: the reward chart I use is a sticker one and then we decide the reward after so many stickers, but it's so hard to think of things that are non monetary, especially when Ella is having so many stickers a day. Also I need to work with her to understand that she can't have rewards forever, as she may need to take medication for a long time. I'm sure it'll get easier in time, it's all so new for her at the moment.
 
I know this might not work for you but...................
I love to sew. I'm going to start to make Grace a fairytale dress.
Her incentive will be to do a good job during her testing and
we will go to the fabric store and start picking out different fabrics and trims.
So over a month or two she will be able to see this put together and get excited.
Again it's something you can "tweak" to fit for you and your daughter.
 
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Stephyjane, I wouldn't worry now about her learning that she can't always get rewards. This is so new to her and its a responsibility most kids her age don't have! :ymad: Although I gave my kids rewards for doing homework, etc., at some point, the rewards did end. :) Crohnsinct once said something along the line that there's a difference between spoiling and just making your kid feel good when they need it. I think that would apply to this as well! :)

And, as for the non-monetary rewards... still trying to figure those out! :lol: But, I do remember that the 'staying up late' was a big deal for my kids, also, (don't really remember if I used this as a 'reward' but it was certainly a treat for them) sleeping overnight in sleeping bags in the family room! :boring: But, whatever... it made them happy! :lol:

Farmwife - wow, I love your idea! I've never been so talented! But, I think that's a great idea!!:medal1:
 
Hi Stephyjane! Sorry to hear about your daughter's struggle with Crohn's. Don't think for one second that you are alone in the paranoid mommy bit. We all have been and still are there at times! I must have stayed uptight with the "what ifs" for 6 months after Ryan's diagnosis. Now, I am still always watching every tired, dark circles under his eyes day to see if it's turning into something.

My son has been on 3 rounds of prednisone this year. He got sick when he tapered off the first 2 times. He is on remicade and methotrexate now and just coming off the steroids this week. Man, I know what you mean by mood swings. Ryan gets overly euphoric so he's so excited it's a zoo here.

If she is not on multivitamins and probiotics, ask about them. Vitamin deficiencies do some crazy things and when their crohn's is active, they aren't absorbing properly.

Sounds like your Dr is staying on top of things. I hope she gets better soon.
 
Hi Farmwife,
That is a lovely idea. If only I could sew. :ysmile:
I shall put my thinking cap on and see what creative thing we can work on as Ella loves crafts.
You're little Grace is beautiful and I've been reading some of your posts, I hope all the testing goes well and you get your diagnosis asap. You sound like a lovely mum, as do all the ladies that have posted on here :soledance:
 
Hi, thank you for your responses. I agree about not worrying about the giving of the rewards, as long as she'll take her meds I'm happy to do what I need to.
I will talk to the dr and dietitian about vitamins, I think she would possibly take them in form of a gummy bear type sweet. The last few days she is slowly cutting out different foods so I know she's not feeling right, as she was eating everything in site a couple of weeks ago!
Steph x
 
Hi again all. :sign0085:
Okay Ella has now started her new medicine which she managed to take fantastically, so altogether she has:
15mg Lansaprazole
10mg Prednisolone ( weaned down from 40mg)
75mg Azathioprine ( upped from 50mg)
1g Salofalk 3x a day (new med)
Paracetamol as needed

My question is this, last night Ella started complaining that she hurt all over, much more than usual, she found it impossible to lie on her sides as her hips hurt so much, in fact she said every joint hurt and ribs and throat. It sounded flu like to me, I gave her paracetamol and eventually she managed to get to sleep. Could this be related to her change in meds, even though she only started the Salofalk yesterday, or could it be her Crohn's flare coming back with avengence, which was her GI's concern?
 
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My son had joint pain that worsened while he was tapering Prednisone. It was the medication. He would have hip pain, then ankle pain, then knee pain. I would see to move around every few days or so.

It could also be a virus. Poor peach has been through so much. I know Johnny had a bad cold while on Pred and I just let him stay home and sleep and eat soup. Normally I would have made him go to school but I knew this was harder on him because of all the meds and his body steal healing from the crohn's. Once he got off the Pred things got much much better. It works but it is hard on the stomach. Johnny had his crohn's all through the G.I. tract too and although it made things better, it did upset his tummy.

Good luck Stephyjane and welcome to the forum. (((hugs))) to you mom, I know how hard this is.
 
Thanks Johnnysmom,
Ella is being halted on her 10 mg Pred for a couple of weeks to see if that'll help with her lingering symptoms, I suppose because her inflammatory markers are still high.
She has had joint pain throughout and has definitely got worse recently which would fit with the medication.
Luckily we are still on our summer school hols here so have just over one week left, I hope Ella's energy returns a bit before then :)
I hope your son is doing well.
Steph x
 
Hey Steph,

I am so sorry to hear of all your girl is still going through, bless her...:hug:

It sounds as if the joint pain may be a combination of being an EIM and the meds, both the reducing Pred and the introduction of the Salofalk. I surely hope things settle very soon for Ella and she finds lasting relief!

Thinking of you, :heart:
Dusty. xxx
 
Hi,
I thought i'd give you a little update and maybe get a few thoughts back.
Ella has been taking the Salofalk tablets 1mg 3x aday for 5 days now, aswell as her other medications, does anyone know how long until they start working? I figured they must be to help reduce her diarrhoea, but we have had no change yet, maybe a little worse some days. She is complaining of a slight sore throat so maybe fighting a little bug?
Another thing i have noticed is Ellas hair is coming out alot more than usual, is this common?
Thanks Steph:heart:
 
Thanks for the update Steph...:hug:

We have no experience with Salofalk at our end but I do know that hair loss and a sore throat can be side effects.

I hope things start to settle for your girl very soon, poor love...:hug:

Dusty. xxx
 
Just wanted to pop in and say hi and I am sorry I am late to the game but life got in the way of my Crohns obsession but I am back on track now.

As for the most paranoid mommy award..girl there would be quite a cat fight for that one. Just the other day my daughter came home from church with a headache and threw up..you should have heard my rapid fire questions..when was the last time you pooped, belly pain, fever, passing gas?..I had to laugh at myself and I have heard plenty of stories about the simple things we all attribute to IBD so all this to say you have to share that award!

Also, I see she stopped the prednisone and was actually quite the champ about taking it...my daughter takes it in liquid form and she is turning 13!!!!!

Sorry I don't have any experience Salofalk but was glad to see you post that hair question as I could make a small house pet with what came out of my daughter's head this morning. Unfortunately I don't have Salofalk to blame so I will just sit and watch.

I hope Ella gets relief super soon and can enjoy school, swimming and dance again!
 
Sorry to hear you are still dealing with a lot of problems. I don't have any advice I'm afraid, just wanted to send support. I remember reading hair loss as part of 6mp side effects so maybe it is the Aza causing it since it's a similar med?
 
Thanks again all for your replies, I'm afraid I've been feeling sorry for myself for the last few days so haven't been on to post anything.
We went to see a show in London which we have been so looking forward to, We had a great time but Ella felt poorly for most of the day and found it hard to stay awake for the second part of the show, I think that's when it really hit me that it's just not fair.
These are all such fab kids and don't deserve what's happening to them.
I wonder whether all the medication that Ella's on is making her feel rough as we don't seem to making much progress with the energy levels etc.
Right that's my whinge over, now to carry on! Xxx
 
Hi Stephyjane,

I have somehow missed this thread for awhile so I just got caught up on it. So sorry to hear about all that you and your daughter have been going through. My son also had severe hip pain and lower back pain. It got to the point that he could no longer bear weight on his left leg and had to use crutches to get around. After X-rays and a trip to a orthopaedic surgeon we ruled out any trauma to the bone. We started physical therapy which was of limited help until we could get to the bottom of what was causing the pain. Our GI put my son on Pentasa as it can sometimes treat the joint pains as well, I am wondering if that is why your daughter has been put on Salofalk. The Pentasa didn't do much for him but he was only on it for a month and I have since learned that it can take more than a month to work. Eventually we got in to see Rheumatology and they diagnosed him with inflammation of the muscles and tendons surrounding his left hip. They put him back on prednisone and started him on sulfasalazine. After a week of being on theses meds (dose of pred was high at first) he felt better and was able to walk for the first time in 3 months!

Sorry about the long winded story. Just wanted to let you know that we too had joint issues. I highly recommend that you push to get your daughter seen by a rheumatologist. They really are the docs to go to regarding the EMIs. My experience has been that the GIs have very little clue about treating the EMIs. One of the forms of arthritis that is seen with Crohn's is ankylosing spondylitis which affects the back. From what I understand it usually takes a long time to diagnose this type of arthritis but there is a genetic test to see if you are at an increased likelihood of getting it. I know they are monitoring my son for this type of arthritis but at present he does not have it.

I hope your daughter is feeling ok and they can get to the bottom of the back pain soon.
 
Hey Stephyjane,

Re: energy levels, have they been monitoring her blood levels of B12, Folate, Iron Stores and Vit D?

Dusty. xxx
 
Hi all,
Well spent all of yesterday in the hospital, not a good day :frown:
Ella started back at school last Wed and all was good, until she came home Fri with pain in her arm every time she tried to straighten it, she had not had any trauma to her arm. It gradually got worse over night until even trying to move it made her burst into tears, to cut a long story short, we ended up in hospital and after blood tests and examination by the 'evil bonedoctor' as Ella now calls him, they have diagnosed her with acute tendinitis. They said its probably all linked to her Crohn's and she ended up on Morphine for the pain. We see the GI on Wed so will see what he says. It seemed to come from nowhere, and the pain is excruciating for her.
Thanks for reading
Steph xx
 
Sorry Dusty didn't mean to not respond to your qu.
The blood tests that Ella gets done weekly are FBC, ESR and Full Profile. Occasionally they check CRP but I'm not aware of any others. The drs here are very reluctant to share results with parents other than saying, they are getting there!
It's so frustrating!!
Steph xx
 
Oh my goodness, I'm so sorry to hear this Steph, your poor girl...:hug:

Tendonitis is an EIM of IBD so they may well be on the right track there particularly since her Crohn's isn't under control. I surely hope they get pain and inflammation under control ASAP!

Please don't apologise Steph, I miss things all the time! :lol: You have enough on your mind hun. It does make it very frustrating when they aren't open with their findings. What I do know of the set up of your system I do understand that it isn't as easy as it is here to access information. Here the GP is the hub of all information and requests and they are kept in the loop when patients go to hospitals and specialists. I wish there was easy flow of access to results for you.

Are the bloods done through the GP? If not, and if you have a good relationship with your GP, perhaps you could ask them to do it.

Good luck on all fronts Steph!

Dusty. xxx
 
Hi, Our doctors surgery won't carry out blood tests on children, so we go to one of the children's wards to the nurses there, who have been absolutely fantastic with Ella, they even made sure one of the nurses were able to take her blood yesterday instead of the dr who was going to do it.
I know we have a right to Ella's information but when they are so reluctant to share its hard to push as we have to work with Ellas consultant until she's 18, and want to have a good relationship with him. He's the only one in our hospital has. We go to a bigger hospital in Oct for a review of Ella as they have to share care so maybe we'll get more detail from them.
Thanks again for you help xx:)
 
Well would you believe it when I arrived home today I had a letter with her last blood test results, maybe they are listening to me after all!
Ella's ESR is 34, CRP is 10 which has definitely come down. Then there were a whole list of other ones that i don't understand.
Can you tell me what we should be aiming for in her ESR and CRP, is 34 still high?
Thanks Steph
p.s I don't know what i'd do without this forum xxxxxxx
 
Maybe they are! :)

According to our reference ranges they are still high. If they sent the results as they would have received them from the lab you should have the listed test...CRP for example, with a set of brackets after it. Contained within that set brackets is the Normal Reference Range (NRR) and with any blood test that is what you should be aiming for.

Just be aware that different labs can have different NRR's, so always look to the brackets for confirmation of what is normal according to their protocol. Also your attention should be drawn to an abnormal result as they are marked with an asterisk.

Dusty. :)
 
Hi Dusty
Unfortunately it was just typed out in a letter without any any other info apart from the result. I know the Esr reading is pretty much the same from when Ella was first being investigated, so have no idea why that hasn't come down. I know that was one of the GI's concerns from when we last saw him 3 weeks ago.
Ella still can't straighten out her arm tonight and is so upset as she has school tomorrow and it's her writing hand :-(
Well tomorrows another day :) xx
 
Just wanted to chime in and say I hope her arm improves quickly. It may be the ESR is not comming down because she continues to have these symptoms, as mentioned earlier ESR shows inflammation and if her crohns is not in control she has inflammation in her body. The fact that the CRP has started to decrease is a good sign.
 
I so hope the her tendonitis resolves soon, poor love...:hug:

Kim is right, since her bloods do reflect her status it is indicative that her disease is still not under control. ESR does however take longer to respond to changes in the body so that may explain why where there hasn't been a lot of movement in that reading. CRP on the other hand has a much quicker response and out of the two that is the one that is used to gauge response to treatment. The fact that it is decreasing is a promising sign. :)

Dusty. xxx
 
Thanks for that, please chime in as much as you would like, I feel totally obsessed about all thing Crohn's related at the moment so any advice and info is so appreciated.
Also thank you so much Twiggy for sharing your sons experience, did you find his came on suddenly or just got gradually worse? Ella's back and hip pains seem pretty constant, definitely worse in the morning, but the tendonitis came on very suddenly and is the worst pain she has experienced.
I believe the Salofalk was prescribed because Ella still has daily diarrhoea, but if it helps the joint pain that will be great. Unfortunately they will only let her have paracetamol for pain relief which does absolutely nothing, and she can't have Morphine out of the hospital.
Hope your son is doing well.
Steph x:hug:
 
My son's hip pain came on suddenly and lasted for 3 months. In that time it never really subsided but thankfully didn't really cause him pain unless he tried to walk on it. He had only ever been offered acetaminophen for pain relief and as you said it does NOTHING for the pain. Has your daughter been seen by a rheumatologist?
 
Ella was only diagnosed in mid June, so we have only seen a paediatric gastroenterologist. We are seeing him again on Wed and if Ella is still unable to use her arm we'll see what he says. It's having such a huge impact on her life at the moment, just trying to keep her positive but when I don't know what the answers are its really hard to know what to say. X
 
I would get her seen by a rheumatologist as soon as possible. Hopefully your GI will make sure that happens. Our GI made the referral, after I requested it, and then sat back while we were offered an appointment with rheumatology 7 months away!!! There was no way that my son was going to be able to wait for 7 months, he couldn't walk!!! So I called rheumatology and got nowhere in my attempt to get a sooner appointment. I then went on a search for a doctor that would push for a sooner appointment for him. We got our GP to refer us to a paediatrician and the paediatrician took one look at my son and got us an appointment 2 days later with rheumatology. The rheumatologist was GREAT and put him back on a course of prednisone and added sulfasalazine and he was walking 1 week later.

I have come to learn that the GI docs are NOT experts in the EIMs of Crohn's. At least ours wasn't. Ours also approached the hip issue as secondary but really, at the time, it was the symptom that was having the MOST impact on his daily life. He couldn't do so many things and no one could tell him when it would get better which really had a huge effect on his general well being.
 
I am on my second round in a year of prednisone and all her symptom match mine. They are normal and they downside of taking a steroid for long term. The joint pain, moon face, extreme tiredness etc is all part of prednisone. The steroid is somewhat helping me, but I am still having diahhrea, bloating and cramping weekly. :(

I do not know much about crohns in children, because I was diagnosed as an adult. I just stated cimzia yesterday and I am hoping that will put me in remission. But this is an adult drug I believe??

Just wanted to offer what I know about prednisone. Hope she starts feeling better soon and I hope she can get off prednisone too! It's not a fun drug.
 
Steph - I'm late weighing in here but just wanted to second the comments about double checking things with a rheumatologist. As mom of a kid whose arthritis came before the crohn's, I know it can be intensely painful!

Worth asking..........

Hugs,

J.
 
Thank you for your advice.
Ella had joint pain well before she was on Steroids, but maybe by being on them hasn't helped her, hopefully she'll be off them soon.
I was told after her diagnosis she would only ever be on them for no more than 8 weeks and no more than 3 times a year. Well we are coming up to our 10th week already so that obviously isn't true.
Thanks again xxxx:ybiggrin:
 
Please call for a Rheumo .
Ours is the best at handling the EIM's.
DS does not have jra but his joint pain got worse as he weaned pred.
Rheumo said it was frOm uncontroled inflammation .
Gi did not agree thought it was pred wean.
More EIMs surfaced including vasculitis so Rheumo talked with Gi .
We had to increase pred and change maintance meds to Remicade.
Hope she feels better soon.
 
Well we've just come back from our appt with Ellas GI, he seems pleased with her overall progress, :ysmile:the plan is to be totally off the Pred in the next two weeks and decrease the Salofalk to 500mg 3x day, she's also coming off the Lansaprazole. He says he is not going to increase the Aza anymore at the moment and just see what happens and she's to go to 3 monthly bloods instead of weekly.
The registrar we saw in hospital over the weekend regarding Ellas arm was also at todays appt, and told Ellas dr they had diagnosed her with Muscalskeletol? pain, so he wants her to have Phisio on it.
I'm really pleased with the drop in meds:ysmile: but am quite concerned about the joint pain and the fact she cannot straighten her arm without extreme pain. And has also still got pain in her hips and back (her back xray came back looking normal)
Her dr says he thinks it is not linked to the Crohn's, if it was a fracture he would but not with what she has.
So now just have to see what happens at Phisio.
 
Yes, my Grace does get pains but hers are in her knees and Left ankle and has complained of back back. I never believe when the docs tell me it's not related. IT IS!!!!!!!

I hope her arm gets better. Have you tried the hot and cold treatment yet?
Put her arm in cold water for 10 minutes. Then put her arm in hot/warm water for 10 minutes. This was what I had to do after paying volley ball. I guess it helps loses up the joint and getting the blood supply circulating again. Just a thought.
 
I am no expert on joint and back pain but just from reading this forum it totally does sound related...dang I hate when I have to agree with Farmwife!
 
My son had back pain months prior to showing GI symptoms and eventual diagnosis. As my son had hurt his back previously and played/practiced hockey almost every day, we'll never know for certain what caused the pain but GI did think it was possible that the back pain was related to inflammation. His back pain went away when he began his treatment for Crohns (however, his hockey schedule also lessened considerably at the same time??). GI did send him to a rheumi but, by then, the pain had gone and rheumi did not find any problem with his back.

With him, I do watch for back pain as an early Crohn's/inflammation sign as it has sometimes coincided with periods when he's felt some mild GI symptoms.

Whether Crohn's or not, Tiger Balm ointment is something that really seems to help alleviate his back pain (but not sure if it helpswith 'joints' such as her knee or arm :(). Also did physio and massage - he found both helped; recently, he's tried hot yoga when his back begins to bother him and he's found this helps as well.

Good luck! :ghug:
 
Thanks all :)
I think I also think it is linked so am hoping when the inflammation is under control so will the joint pain. I'm hoping the Physio will be good to strengthen her muscles and joints as she does have hyper extension also.
Does anyone have any experience of coming off the steroids when blood tests still show inflammation? Are the Azathioprine tablets supposed to carry on bringing it down. It's all so confusing.
I shall go to the pharmacy this afternoon and get some Tigerbalm to try on Ella's joints and maybe try a hot water bottle :) xx
 
Stephyjane

Hi! I only just joined the forum. My son was diagnosed in June at the age of 10. Had Modulan for 6 weeks, now on Pred.

I haven't come on here much but everyone has been so supportive - it is great to know you are not alone....

Andrea x
 
Stephyjane,

Be watchful if you use the Tiger Balm and the heating water bottle together. Stephen applied the Tiger Balm once after a hot shower and said his skin was very uncomfortable and 'burning' for quite a while afterward. Not sure if it was that his skin was hot or the 'open' pores from the shower but either way it was not a pleasant experience.
 
We also got these wishy washy responses to my son's back and hip/leg pain from the GI and the orthopedic surgeon. From what you are describing I really think a rheumatologist should have a look at her. I am baffled by how little GI docs know or care about the joint EMIs of Crohn's. Did they mention rheumatology?

My son's xrays and MRI of his back and hip/leg also came back normal. From what I understand it can take years for things like ankylosing spondylitis to cause enough changes in the back and hips to be seen on the xrays. My son has not been diagnosed with ankylosing spondylitis, and I sure as heck hope he never is, but they (rheumatology) are keeping a close eye on him because patients that present with Crohn's and back pain have a greatly increase risk of developing it. From my experience with rheumatology it doesn't need to be a clear cut case of arthritis for them to get involved, especially with kids. They are the docs to go to for Crohn's EMIs and I don't have any earthly idea why GI docs drag their feet in referring our kids to them!!!
 
StephyJane,

Johnny had joint pain too, his knees were the worst. The physical therapist he saw put these patches on him that delivered an anti inflammatory to his joints. The G.I. said it was okay because the anti inflammatory would not get into his G.I. tract. The physical therapist thought this was important because there was nothing to take the initial inflammation down and so he really couldn't start healing. I can't remember the name of the patches but I could call her and find out if you need the information. They really helped Johnny's pain. I am sure it all depends on what is causing the pain though. Our orthopedic felt it was a combination of the prednisone weakening ligaments and bone starting to grow and pressure on the joints. He didn't feel it was R.A. Our pediatrician did look into something called Chronic recurrent multifocal osteomyelitis. Apparently it can occur in conjunction with crohn's. It might be worth looking into. Hope Ella is feeling better soon! Good news on the reduction in meds. :)
 
Did Johnny use Voltaren? Stephen used this ointment (but I think Voltaren also has patches) when he separated his shoulder. I spoke with the on-call GI before using it and was told it was okay to use sparingly but not for too long... We only used it when we thought it would have the most benefit, i.e. right after he was hurt and after physio when his shoulder was extra sore from the therapy.
 
Hi,
I decided to try Arnica gel on Ella's joints to see if that helps.
I beginning to wonder whether it is partly the Pred taper as she's felt quite unwell this past couple of days. Headache, shivery in her sleep though her cheeks were hot and very bad bathroom visits!! :-(
Do you ever feel like you are going round in circles?
And why does it always seem worse at the weekends when there is no dr available?
Oh well, hope u all have a good weekend xx :)
 
Sometimes as you taper, the symptoms will return, meaning that the active disease is not under control. If this continues, I would definitely contact her GI because he may want to re adjust meds or slow the taper or up the dose again of steroids.

Sorry I'm late to the thread but I agree with everyone else. In fact, long before C showed any GI symptoms he had achey joints and joint pain in the right arm, lower back knees and ankles. Once we were able to get him under control with the CD the pains subsided or reduced dramatically. Unfortunately, he is again have flare symptoms and joint pain was one of the first things to show up with night fevers/sweats so back on the pred we are!!!

I hope your Ella gets to feeling well soon and they are able to sort all of this out.
 
Thanks Clash,
Ella's dr has said Ella has been on the Pred too long already so she has to come off it, hopefully the Azathioprine will kick in a bit more , though not liking the hair loss factors!
I shall keep an eye on her and the dr has said to call if any concerns. It's hard sometimes wondering whether I'm being overly Paranoid.
Thanks again. X
 
I know the feeling for sure. Even this time when I was certain C's symptoms indicated trouble and not a "virus" I still fretted about the being paranoid bit!! But it's like crohnsinct said in this thread or another one, the gi nurse are fairly used to the phone calls and they have to completely understand the worry and apprehension of a parent with a recently diagnosed child. I truly hope it is just a one off and she improves quickly!

C did not have good experience with pred the first time as it didn't seem to work on the inflammation and I was and am worried about being on it again but his ulcers do seem better today so that is a plus, I'm just ready for his Remicade infusion on Monday.
 
Good luck for Monday :)
It's funny you should say that about the inflammation. Ella's hasn't really come down in her blood tests. But her symptoms are much better.
I'm so thankful for this forum as I feel I can be as paranoid as I need to be :) xxx
 
Hey Stephyjane,

Hmmm, I agree with the consensus here. Since your daughter has large bowel involvement the chances of her EIM's should not be ruled out by the GI and certainly not because imaging shows as normal. The irony is that her pain was diagnosed as musculoskeletal and according to many studies that is the most prevalent EIM.

I personally wouldn't go from weekly blood tests to 3 monthly. The time between tests should be slowly increased. So from weekly to fortnightly, fortnightly to monthly and monthly to two monthly and finally three monthly.

Good luck! Is the cream helping at all?

Dusty. xxx
 
I just wrote out a reply then accidentally deleted it :-((
I'll try again.
Ella's arm is much improved thank you, I think the resting of it and maybe Arnica helped.
That can't be said about her toilet visits, she improved when she first started taking the Salofalk but is now worse than she was before, and her dose is being reduced as of next week!
She has been feeling nauseas and off her food for a couple of days so still wondering if she has picked up a bug from going back to school. I try not to think everything is Crohn's related but it's hard.
We have a review of Ella in Oxford in a couple of weeks so maybe they'll check her blood tests there. Ella's GI here, says he likes to treat the person not the numbers. Whatever that means. Maybe it's because I keep asking for the results :)
 
I'm glad Ella's arm is better :), but sorry the GI symptoms haven't improved as much! :ymad:

I don't have experience with the 5-ASA meds (Salofalk is one) but have read that some people experience GI side effects from them (diarrhea, etc.). When the meds have side effects similar to the illness, so hard to determine the actual cause! Ugghh!!! :ymad:

No different here with trying to keep the 'crohns' related worries in check... I try not to relate everything to Crohns but then I worry that I'm missing/ignoring symptoms of the illness! :yfaint: I think you just have to trust your instinct??? (now aren't those helpful words of wisdom, eh?? :ybatty:)

Do you have the doctor's or nurse's email? Especially when Stephen was first diagnosed, I found it much easier for me to send an email with my concerns and let them reply. I was able to note 'all' the symptoms and my concerns without feeling rushed and, if they were silly or irrelevant questions ('silly' to them, not to a concerned mom!!), I didn't hear the sigh of exasperation on their end! :lol: If you don't have their email, perhaps you can ask at your next apptmt?

I hope Ella's symptoms begin to alleviate soon! :ghug:
 
Tesscorm,

Johnny did not use Voltaren, it wasn't an ointment. It had little batteries in it and slowly released the anti inflammatory. Our Dr. had to write the prescription for our PT to use them. I know I wrote down the name of them somewhere.. Johnny's medical file is just getting too thick :(
 
Thanks for the update hun. :)

So good to hear the arm is improving! YAY! But so sorry to hear about the GI symptoms. :(

I don't disagree with the doc about treating the person and not the numbers but it is the numbers that often help treat the person. He really should look to both, I think they call it a wholistic approach. :wink:

Dusty. xxx
 
Welcome to the group...:welcome: my son was dx about a year ago, at age 10, and was put on pred and aza. He did pretty well up to recently. He did complain of back pain in the spring and his gi doc ordered a back x-ray and rhuemi consult. The rhuemi said it did not look like arthritis and ordered phys therapy. The PT did an evaluation and gave him stretches to do twice a day and his back pain did go away.

Hope Ella starts feeling better and the physio helps.
 
Hi,
We are now down to 5mg Pred and tomorrow she is alternating between zero and 5mg a day for a week then stopping. Also halving the Salofalk dosage.
Pretty much since seeing Ella's GI last Wed Ella has started getting some stomach pain again, she also has doubled in the amount of D she is having daily :-(
I did think maybe going back to school she had picked a bug up, but today there was a lot of blood in her D and very sharp pains. I have read so much about people having symptoms when weaning off of the Pred, so I guess my qu is, do I sit and wait and see if it improves over the next week or speak to the dr?
I'm scared at what will happen next :-(
Thanks xxx
 
I think you have work out what is *normal* for your daughter and work from there. What I mean by that is, is bleeding a *normal* symptom for her when flaring?

If the answer is no you ring the doctor. If the answer is yes then you go to the next step, is the amount and appearance of the blood *normal for her? If the answer is no you ring the doctor. This principle can apply to any symptom your child has.

A symptom that is new always warrants attention but if a symptom appears that is characteristic of her disease presentation then you need to establish what is *normal* and can therefore be monitored and what is an escalation of normal. If at any time you are unsure then always err to caution and seek medical advice.

Dusty. xxx
 
Sorry to here Ella isn't feeling better. I agree with Dusty but what I will say is my daughter is a bleeder and the blood in and of itself is never a big worry for our doc BUT the presence of blood, diarhea and stomach pain would all signal a call to the doc. Especially since she is tapering off the prednisone. Could be you have to slow the taper down a bit.

Good luck and keep us posted.
 
Thank you.
Ella didn't have Diarrhoea as a symptom before she was diagnosed, a little blood as she had a tear. Sorry to go into detail but it's the only way to describe what it is like,
Ella tends to urgently need to go to the toilet 3 or 4 times in the morning, each time she goes it is more liquidy and more blood. It's like she has to keep going until she's totally empty and nothing left to come out. She tends to get sharp pains when she needs to go.
After reading your comments I think this is not a 'normal' for Ella so will leave a message for Ella's dr.
Thanks again xx
 

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