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The Worried Mum's/Dad's/Carer's Club!

Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.

As of right now, he's doing great and his last labs in February were the best they've ever been. His GI said if he continues to do great clinically and endoscopically we could just do nothing... but after everything he's been through, that really scares me. His GI is also very open to both 6MP or Remicade as well, but quite honestly, I'm not sure he knows which direction to go either. It's like we're waiting for something (presumably bad) to happen to point us in a direction.

Hey Mehita...

I'm a little bit at odds with the GIs statement that Pentasa doesn't do much. My son has been on Pentasa since diagnoses and is doing *great*! That was 3 years ago in March (side note -I can not believe it has been 3 years!!)

Anyhoo... At one point early on his GI was looking at his labs and though they were not high by any means, they were not "normal" and she said, we might want to consider a Level 2 med - 6MP. I was opposed to go stronger at that time because his labs were not *bad* and I instead asked if we could up his Pentasa doseage - and she said yes we could try and see what happens. He was clinically doing great hence he wasn't in any danger (I think that is really important to know - as there are some kids who are in DANGER if they don't move on immediately to a stronger med).

You said your son is doing great... then why introduce a drug that he may not need yet? My Mum has always taught us - not to borrow trouble where there is none...

Talking to your GI is a great idea - but (and this is JUST me and my opinion!) I wouldn't want to give a med that may not be needed yet.

I hope that makes sense. I read this and walked away and then felt prompted to respond.

I pray he continues to do GREAT!
 

my little penguin

Moderator
Staff member
Shell-
I think her GI was going by all the studies for crohn's - since in general most crohn's ( not UC) folks ( including kids) just don't get enough from the ASA meds when used alone.
Again not all as your child is evident but that was probably what they were basing that statement on.
 
ChampsMom - Thanks for your input. I really do appreciate it! Believe me, it's crossed my mind to not rock the boat and my husband is currently in that camp.

I don't think Pentasa is the best med for Lukas since he had a stricture that only got worse due to off and on inflammation over the course of a year while on it. While the stricture has been removed and he's doing better now, just having had the surgery puts him in a whole new ball game and after reading up on post-surgical maintenance meds (thanks to MLP & our GI) I think we need to do something. I just don't know what exactly. All I know is that we don't want to have surgery again for a good oh... 100 years or so.

I think I've come to the conclusion that I need more info and that will be the MRE at 6 months post-op. For now, we just need to ride the high we're on... and I need to find a hobby that has nothing to do with Crohn's!
 

CarolinAlaska

Holding It Together
So if you have had the pre-test, then after starting meds you do a lab at 2 weeks and then a month after that. No sweat.
 
I'm a worried mom. Worried I'm going to make the wrong decision and possibly not decide soon enough.

Lukas had his small bowel resection three months ago now. Prior MRE showed no Crohn's any where else except the stricture and his surgeon said he didn't see anything either during surgery. Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.
Hi Mehita!

My son had a small bowel resection this past October. He has been symptom-free with good labs since then. But our GI showed us research showing that for kids who have had surgery, remicade is the best chance to keep them in remission. We battled insurance for five months until they finally agreed to cover it. Tomorrow he gets his second infusion. I know it is scary to think about giving them such powerful stuff, but I truly believe it is the best thing for him. Our GI is one of the best in the country and our Children's hospital is in the top 3, so I think we are getting good advice.

I read this book when he was diagnosed in 10/12 and found it helpful:

IBD self-management : the AGA guide to Crohn's disease and ulcerative colitis / Sunanda V. Kane

Best wishes!
 

DustyKat

Super Moderator
Hello Im knew to all this support group stuff but Im not sure who else to ask this question. I have a 12 yr old son who has been dealing with Crohns for about a yr now and Im glad to say that he is doing very well. He has always wanted to join the military, he talks about it all the time and in the past few days I have found out that he cant. Im hoping theres a parent out there that has some advice on how and when to brake this news to him. Should I tell him now or do I wait? I know hes going to crushed. Thank you to anyone that can help!
As hard as it is I would tell him now rather than have him continue to believe in a path in life that he can't take. I know he will be devastated, bless him, but he will push through it and find another passion...

My daughter also wanted to join the armed forces. I was unaware at the time of her starting university that this was her ultimate aim and she had chosen her course, psychology, with that in mind. Near the end of her first year she found out she was unable to join due to her Crohn's, she was absolutely heartbroken but she rallied round and changed her studies. I imagine that she has moments when she still wishes that she could follow her original dream but she has moved on and is happy with the choices she has made. :)

Good luck Camsmom, you are in my thoughts. :ghug:

Dusty. xxx
 

DustyKat

Super Moderator
@Mehita:

As Dexky has said, for us Imuran has worked very well. Both kids have been on since their ileal resections and have maintained remission. Sarah will be seven years on the 10th July and Matt was two years on the 7th April.

Good luck hun, there surely is nothing harder than making these decisions on behalf of the ones we hold so very dear. :heart:

Dusty. xxx
 
I am just throwing this out there for everyone to chime in on...how do you get your child to stick to any sort of IBD or Crohn's diet without making them feel left out? My 9 year old seems to go into the "oh poor me" mode every time one of the other kids eats something we have put on his no-no list. Any suggestions will be appreciated:)
 
Hey Kristy,

I did a couple of things with that issue.

1) For everything on his no-no list we went looking for some sort of substitution - and it was a bit of an adventure game. First he had to decide, was it the taste or texture he missed.

With pop-corn (which was a biggy) he said he missed the taste, but really missed the crunch (seemed like he was eating soft food *forever*!) We tried the hull-less popcorn - but it wasn't the right texture. After a few misses, he settled on Corn Pops (yep, the cereal!).

With ice cream - we tried a few different kinds: frozen yogurt, tofu ice cream, soy ice cream and lactose free ice cream. He preferred the lactose free.

For nuts - he settled on honey-nut scooters (like cheerios).

For pizza - he pulls back the cheese and adds toppings.

Then we tried to turn things around to a positive.

For example - because he can't eat 3 big meals (GI recommended him to eat small meals all day long so his body wasn't trying to digest large portions of food) he carrys a small cooler around *every-where-he-goes* (it's a laugh)... So he can eat anywhere!! When he was attending public school he was the only kid who could eat during class (we knew there were kids in other classes with diabetes and other issues who were also permitted, but in his classes he was the only one).

When we went to Disney World all we had to do was tell a Manager that he was on a restricted diet and they would make him anything he wanted and they'd make it especially for him :)

Last thing (that I can think of right now anyways..) is initially I changed everyone's diet in the whole house by eliminating things that he couldn't eat... but as he adapted and became comfortable with his personal needs, we started adding more - I think he enjoys the fact that regardless of what I'm serving for dinner - he knows he'll have something he likes (laughs..). And at the end of the day, regardless of what other people are eating, he knows what doesn't agree with him and what does - and the latter is better!

Is your son going to Scout Camp this year? If so - it is something to start thinking about - FOOD!!

Good luck!
 
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What great ideas all of you have to help with diets. We also changed the family diet for a while when our daughter was in a flare.

My concern now is that she is doing so well at this time, but her eating habits are awful. She is 14 and we go round and around......it is literally every meal, every cup of tea, every food choice she is making has way too much sugar, way too many carbs, no vegetables. I am trying to find an app that she can download that educates her as to what food groups she is missing each day but cant find one yet that she can use on her Android. anyone know of one? i know she will eventually understand how important all of this is, but I need to help her get a handle on it right now!!!

taking helpful ideas for stubborn, hungry teens... :)
 
We LOVE My Fitness Pal! We used it to track calorie intake and fiber when DS wasn't doing so well. He was able to see how many calories he was short or if he was close to getting too much fiber. The best part is the huge database of food that is already set up for you to choose from (even GF food). We printed reports for his GI so he could see calorie intake and that we really were trying to stick to the GF, low res, low fiber diet.

It's a wonderful app and is available for Android.
 
I just told her about it, but my concern is not the calories but the type of food and that she gets a well balanced diet. For instance, if she eats all carbs/sugars/fruits and no protein or veggies.... we will see if it fits. If it does great, if not we will find one!!! thanks again... cant wait to see if it works for her. At this age, it needs to be her idea and she has to put the effort into wanting to do it.
 
Hey Kristy,

I did a couple of things with that issue.

1) For everything on his no-no list we went looking for some sort of substitution - and it was a bit of an adventure game. First he had to decide, was it the taste or texture he missed.

With pop-corn (which was a biggy) he said he missed the taste, but really missed the crunch (seemed like he was eating soft food *forever*!) We tried the hull-less popcorn - but it wasn't the right texture. After a few misses, he settled on Corn Pops (yep, the cereal!).

With ice cream - we tried a few different kinds: frozen yogurt, tofu ice cream, soy ice cream and lactose free ice cream. He preferred the lactose free.

For nuts - he settled on honey-nut scooters (like cheerios).

For pizza - he pulls back the cheese and adds toppings.

Then we tried to turn things around to a positive.

For example - because he can't eat 3 big meals (GI recommended him to eat small meals all day long so his body wasn't trying to digest large portions of food) he carrys a small cooler around *every-where-he-goes* (it's a laugh)... So he can eat anywhere!! When he was attending public school he was the only kid who could eat during class (we knew there were kids in other classes with diabetes and other issues who were also permitted, but in his classes he was the only one).

When we went to Disney World all we had to do was tell a Manager that he was on a restricted diet and they would make him anything he wanted and they'd make it especially for him :)

Last thing (that I can think of right now anyways..) is initially I changed everyone's diet in the whole house by eliminating things that he couldn't eat... but as he adapted and became comfortable with his personal needs, we started adding more - I think he enjoys the fact that regardless of what I'm serving for dinner - he knows he'll have something he likes (laughs..). And at the end of the day, regardless of what other people are eating, he knows what doesn't agree with him and what does - and the latter is better!

Is your son going to Scout Camp this year? If so - it is something to start thinking about - FOOD!!

Good luck!
So many great ideas..thank you. He is going to scout camp, but it is only day camp and they make them take their own lunches, so we are all good in that department. He just gets frustrated with not being able to eat the same things his friends do. I know this is the early stages for us, he has only been doing this for a little over a month. But at school he will grab a milk to drink because he just really wants it. We have milk on the no-no list. He said he only drank 2 swallows...but his tummy hurt afterwards haha. I think sooner or later he will learn it isn't worth the pain. But right now I am trying to find good encouraging ways to keep those no-no foods at bay.
 

my little penguin

Moderator
Staff member
CAn you pack his lunch at school for a while ( less tempting that way)
We let DS pick "fun things he likes that are safe as well as good things to go in his lunch.
IF other are having brand xyz of chip then I find some other bag he can eat.
the point being taking him shopping with you alot and he will help you find things he would be willing to try that also taste good.

What is he actively avoiding?

DS was free of corn, milk, eggs, soy, peanuts, tree nuts, fish, shellfish, oats, barley, rye, and wheat one point....not any more thank goodness
So if I can pack a lunch for him...anything is possible.
 
CAn you pack his lunch at school for a while ( less tempting that way)
We let DS pick "fun things he likes that are safe as well as good things to go in his lunch.
IF other are having brand xyz of chip then I find some other bag he can eat.
the point being taking him shopping with you alot and he will help you find things he would be willing to try that also taste good.

What is he actively avoiding?

DS was free of corn, milk, eggs, soy, peanuts, tree nuts, fish, shellfish, oats, barley, rye, and wheat one point....not any more thank goodness
So if I can pack a lunch for him...anything is possible.
That is part of the problem...we keep learning new trigger foods, seriously almost 1 every other day. I get so overwhelmed when we decide another food is causing a problem. I am not even sure where to start when deciding what he can and can't eat. We started a food journal, that worked great until he had a flare...then everything hurt his stomach. Any advice on how to officially decide if it goes on the no-no list?
 
That is part of the problem...we keep learning new trigger foods, seriously almost 1 every other day. I get so overwhelmed when we decide another food is causing a problem. I am not even sure where to start when deciding what he can and can't eat. We started a food journal, that worked great until he had a flare...then everything hurt his stomach. Any advice on how to officially decide if it goes on the no-no list?
What you are doing is spot-on - food journal! There are some things that seem to show up on a ton of lists (but as always, what might be a no-no on one persons list is okay on anothers, sigh...)

Trial and error seems to be the best (worst) only? approach. :confused2:

Good luck!
 

my little penguin

Moderator
Staff member
The other thing to keep in mind- until his inflammation is down- and he is done flaring- IT may be hard to pin point what is a truly a trigger food and what is "just" crohn's not under control.

remember most foods do not cause a flare but can make a flare seem worse.

We let ds lead the way on what he wanted to eat for the most part ( outside of nuts/raw veggies/seeds/popcorn)
for the most part he knew after a bit that food x made him feel worse.

but to know that he need to be feeling good first kwim.

I wouldnt eliminate any food at first just track for a few weeks then see if a pattern emerges- the results should be reproducible.
 

Dexky

To save time...Ask Dusty!
We let ds lead the way on what he wanted to eat for the most part ( outside of nuts/raw veggies/seeds/popcorn)
for the most part he knew after a bit that food x made him feel worse.
Ditto! It's amazing how quickly they tune-in to their bodies!
 
I was up at 2:00 am last night wide awake with worry and crying. I feel like I'm prednisone right along with DS sometimes. All the worst case scenarios were just rolling through my head. What if the Aza doesn't work? What if he's one of the 4 in 10,000. Unlikely, yes, but there are four people in this world who, statistically, will be those four unlucky souls. Why did he flare so fast? What if GI #3 is no better than 1 & 2? Why DS? Why not me instead? Why is there not a cure yet? Are we going to make its through the school year? What if they say no to my 504 changes? Should I have let DS eat that slice of pizza? Or will he pay for it in a couple hours? What if Remicade and Humira don't work? Will he get his high school diploma from a hospital bed?

And on, and on, and on. How do you turn it off? Someone please tell me I'm not the only one who has moments like this...?
 
When I'm way too stressed I find nothing sooths my brain like repetitive movement. Generally I'll knit or something like that, some how keeping my hands occupied, keeps my brain distracted enough from the whirling thoughts that I find them easier to handle.

I also find thought monitoring helpful. In my pain CBT course we we're taught to write down all those damaging thoughts and beneath each of them write, "Is it realistic? / Is it helpful?" Then write an alternative that better met those two criteria, which we'd then write out repeatedly.
 
No you not the only one!

My big thing is.....I can't believe I have the girl that can't eat. When did this happen? How did we get here?

For me like Maree I try to take my mind off of it. Whether by sewing or thinking about the following Sunday school lesson. Sometimes that works and sometimes it doesn't.
HUGS, we've all been there and I'm sure we'll make visits again.
 
I'm a worrier too and have found mindfulness to be very helpful. I have also found it useful to try to distance myself from the worries, thinking "I notice I am worrying about..."

[[[HUGS]]]
 

CarolinAlaska

Holding It Together
I get that way whenever Jaedyn is in a flare or we have to make a decision on what changes to make. Hang in there - it is the high drop of a roller coaster - scary, but you'll come through it all right.
 

DustyKat

Super Moderator
I was up at 2:00 am last night wide awake with worry and crying. I feel like I'm prednisone right along with DS sometimes. All the worst case scenarios were just rolling through my head. What if the Aza doesn't work? What if he's one of the 4 in 10,000. Unlikely, yes, but there are four people in this world who, statistically, will be those four unlucky souls. Why did he flare so fast? What if GI #3 is no better than 1 & 2? Why DS? Why not me instead? Why is there not a cure yet? Are we going to make its through the school year? What if they say no to my 504 changes? Should I have let DS eat that slice of pizza? Or will he pay for it in a couple hours? What if Remicade and Humira don't work? Will he get his high school diploma from a hospital bed?

And on, and on, and on. How do you turn it off? Someone please tell me I'm not the only one who has moments like this...?
You are not the only by a looooooooooooooong shot Mehita. :hug::hug::hug:

I have always found night time the hardest. The days are the time when you are busy and put up the brave front so your baby doesn't see the fear and uncertainty in your eyes. BUT come the night, when all is quiet and the darkness hides your face...that is when the front comes tumbling down. It can be a good thing Mehita, you need to release the anger, dread, frustration, ache and uncertainty, it helps to recharge the batteries and face the morning with renewed resolve when you see your dear son.

Can this go night after night? no it can't and more often than not it doesn't so it doesn't become all consuming. I didn't have the night after night problem with Sarah but finding that I had two children with Crohn's was utterly devastating and I couldn't sleep. I couldn't function like that so what did I do? I took a sleeping tablet every now and then until I was over the worst of it. For me that was the only way I could switch off and be any use to anyone the next day.

Dusty. :heart:
 
Hi Mums & Dads,
I just posted on the LDA support group, but wanted to repost here. Mainly because I am so extremely hopeful that LDA treatments we just started and LDN (medication we just started- new on the scene for kids as of Sept 2012-FAD approved and very few side effects!) will be making a difference for us here soon. I will continue to let you know how things go, but wanted to get the word out fo these methods since so far for us everything else we have tried ( incluing pentasa-adds to lethargy) has done more harm than good. For what its worth here is my long winded update. :) Best to all you Moms and Dads out there. My heart is with you I hope this might be helpful to someone.

My son went to see our local LDA doc here in MD. Dr. Layton in Towson. He is so thorough and took his time with us. He had seen us back in 2008 but we thought we couldn't afford the treatments for (at the time) recurrent strep infections, severe ADHD, gluten sensitivity, allergies, and sensory integration issues. Now five years later after two surgeries(adnoid tonsil), colonoscopy, Crohns Dx, malnutrition, 2 years of not being able to attend school outside of home, and failed medication after failed medication we returned to seek help with him again.
Hind sight is 20/20, but needless to say I wish we had not been so skittish about it not being FDA approved, costing $ and being slightly painful. We would have saved a ton of heartache, pain and money.
He has only had his first round of treatment last week. We did 4 shots one for environment (mold trees, pollen, dust etc) one for chemicals and plastics, and medications and one for common food sensitivities, and one specifically for bacteria associated with Crohns.
The doctor warned him as he took blood samples that the LDA would be much more painful. He was totally honest and gained my sons trust. It was extremely painful esp. after just having blood taken but he has been sick for so long and was so brave. He held my hand, and when I told him to squeeze it hard if it hurt he said he didn't want to hurt me and he just closed his eyes hard. The next day he was tired and his arm still hurt a lot. But he is on board completely with the treatments which is huge! He is a teenager and had previously announced he would refuse to take the next level of meds after our horrible (HORRIBLE!) experience with steroids.
I cant give a complete scientific cause and result effect here because he also started taking LDN the same week we started LDA. He has been pretty tired, but not more than his usual ( bed ridden for the most part) He has been engaging much more in conversation and family games and even went for a bike ride with his friends (the next day he regretted it though was wiped)
Honestly I cant believe it has only been a week since he had the treatment. I am so encouraged. Though he has complained every day about how awful he feels, (unusual for him) and his appetite comes and goes, he seems more alert than I have seen him in a long time. He wants to start the specific Carbohydrate diet today (suggested to him by Dr Layton) He knows what it is like so he put it off for a week. So today I have to get organised and plan ahead for that. (Easy SCD ideas and snack thoughts welcome!) I find it hard to keep it diverse enough for him to want to stay on it. I usually get stuck on just serving meat, salad and nuts. He craves his potato chips, (but this is for another section of the support forum~I digress)
Will keep you posted on his progress with LDA. Love our Doc! He is so amazing! Best bedside manner and he reads every report and really cares to do the right thing. He helped my son to see that he was settling for the life of an old man when he has his whole life ahead of him, and while he cant guarantee it he has helped so many he would be surprise if he didn't feel better after the treatments.His goal is to get him back to feeling good. The doc asked my son "when was the last time you remember having energy and feeling good?" His reply was that he remembered the feeling of running strong once when he was maybe 8.( more likely 6 I am thinking) My son doesn't even have much of in idea of what it feels like to feel good and the doc drove this point home to him so he would have incentive to get better and a baseline of reference for where he is now, and how he is feeling when he goes back for his next treatment in 2 months. His running memory will be a 9 on his scale with his current state will be the 3-4 marker. ( he said 4- Dr Layton & I both thought more like 3)
So, thats where we are just thought I would share a bit of our progress here. Yet again, hoping for the best. Cant tell you how many times that has stung me in the end, but here I am again. Fingers crossed, prayers good vibes and kind thoughts welcome. oh and SCD hints too! Thanks for being out there and sharing your stories. Particularly Scottchopchop, yours inspired me to go back to our LDA doc. thanks. :] will try to keep you posted.
~liz
__________________
 
Does anyone have any great tricks for helping with joint pain associated with Crohns? My 9 year old has had hip and knee pain before, the steroids helped...but we are off those now and hope not to need them again any time soon. Any suggestions will help :)
 

Jmrogers4

Moderator
We've used heating pad, essential oils. Even used sports wrap and wrapped up ankles and wrists when it got bad.
Sorry he is still having joint pain. Have you seen a rheumo as well? I know there are quite a few who regularly see them for joint pain. We have not but if Jack starts having joint pain again we definitely will, I just never thought of it and had not found this site yet when he was really having issues with it.
 
Hey Kristy,

We treated my son's joint aches with ice, Tylenol (for pain) and for a solid year he took omega 3 supplements. Hope that helps.

Shell
 
Hey Kristy,

We treated my son's joint aches with ice, Tylenol (for pain) and for a solid year he took omega 3 supplements. Hope that helps.

Shell
How much omega 3? We have been doing the ice and Tylenol but never tried the omega 3. He weighs about 54 lbs, so I don't know how much to give him.
 
Ugh... I wish I could remember. I can tell you that we used the Nutrilite brand (my go to brand for all vitamins and supplements) and they have changed their joint supplement to Glucosamine 7 (based on what I read is better than just the omega 3s - but is not recommended for kids under the age of 12). I would check with your local health store they tend to be knowledgeable about how much per weight. IF he can eat salmon - you could also add that to his diet (loaded Omega 3s).

I remember when Alex would get out of the car to walk into school and I thought, "He looks like an old man walking..." I would bawl as soon as I got out of the parking lot - he was so stiff and just kept pushing through... Sorry I'm not more help :(

I had him take a lot of supplements early on... At one point he was taking 23 pills a day and half of them were supplements. Now he's down to 11 with only 4 supplements (daily, vitamin c, calcium w/magnesium and a flintstone - laughs).
 
Ugh... I wish I could remember. I can tell you that we used the Nutrilite brand (my go to brand for all vitamins and supplements) and they have changed their joint supplement to Glucosamine 7 (based on what I read is better than just the omega 3s - but is not recommended for kids under the age of 12). I would check with your local health store they tend to be knowledgeable about how much per weight. IF he can eat salmon - you could also add that to his diet (loaded Omega 3s).

I remember when Alex would get out of the car to walk into school and I thought, "He looks like an old man walking..." I would bawl as soon as I got out of the parking lot - he was so stiff and just kept pushing through... Sorry I'm not more help :(

I had him take a lot of supplements early on... At one point he was taking 23 pills a day and half of them were supplements. Now he's down to 11 with only 4 supplements (daily, vitamin c, calcium w/magnesium and a flintstone - laughs).
That is exactly how I feel, I see him try to walk up the stairs and it takes him forever. At church on Sunday someone said he looked like an old man walking...and the good sport he is, he started to talk like an old man and used a pen and pretended it was a walking stick :) At least he tries to find the humor in all of this. I am going to ask his Dr. if there are some supplements he recommends. He is doing folic acid right now and 2 multi vitamins and that is all. Thanks for the advice :)
 

CarolinAlaska

Holding It Together
Jaedyn uses lemongrass, geranium or other essential oils and has had good luck with them, but I don't think her joints were ever as bad as that.
 
So my 9 year old has been off of steroids for a good month yet he is still having troubles sleeping. He is taking 6mg of melatonin about 30 minutes before bed time, but it doesn't seem to be helping. It's not like he is getting up in the middle of the night and using the bathroom...he just can't seem to sleep. It is not fun for anyone at our house. Have any ideas to help him???
 
That is so hard. A few suggestions. Make sure he has no caffeinated beverages after 2pm if he drinks any. (We don't allow them at all but I know every family is different.) turn off tv and computer one hour prior to bed. Have him take a warm bath then a warm drink and then lie down with a book quietly for half an hour until lights out.
 
Is he physically active in sports at all? On days that my son gets some exercise, he sleeps well. On days when he sits around watching TV all day are the times he can't fall asleep. Just a thought.
 
That is so hard. A few suggestions. Make sure he has no caffeinated beverages after 2pm if he drinks any. (We don't allow them at all but I know every family is different.) turn off tv and computer one hour prior to bed. Have him take a warm bath then a warm drink and then lie down with a book quietly for half an hour until lights out.
He isn't allowed to have any pop...the bubbles hurt his tummy. So that isn't part of the problem. He reads for 30 minutes before he actually is suppose to go to sleep. But the bath might be a good thing to try. About 2 hours after he is suppose to be asleep he gets out of bed crying saying he has just been laying there and can't sleep. He will get up 3-5 times during the night...it's almost like having an infant in the house :'(
 
Is he physically active in sports at all? On days that my son gets some exercise, he sleeps well. On days when he sits around watching TV all day are the times he can't fall asleep. Just a thought.
This a good idea... now that it is summer and too hot to play outside he does spend a lot of time infront of the computer and tv. I am going to try to make him get some form of exercise in about 2 hours before bed time, and see if that helps. Thanks for the idea.
 
Once he is asleep does he stay asleep?

If he does get off to sleep at what time is that?

Dusty. xxx
His bed time is 8:00, but he reads for 30 minutes then is suppose to go to sleep at 8:30. He will get up on and off until midnight. Once he finally goes so sleep he stays there for a couple of hours then wakes up again and he says " I just lay there mom, I don't go back to sleep". He will get up 3-5 times a night.
 
Did he have trouble sleeping before steroids?
He has always been a sleep walker...but when he first got sick he was waking up lots just to go to the bathroom. I sometimes wonder if it is a mental thing now, because he just wakes up and doesn't use the bathroom at all. The steroids seemed to make a mess of his sleeping patterns. I am just at a loss and I feel like I am being mean to him when I have no ideas other than "keep trying" "just close your eyes" "think of good fun things". I just want to help him and I don't know how.
 
Also, when my kids can't sleep, I tell them just to stay in bed and read. I don't care if they read for hours. They're at least resting (and I'm sleeping!) and eventually they fall asleep at some point.

Is he tired during the day when he doesn't sleep well? Our GI was pretty concerned when DS wasn't sleeping well since that is the body's natural time to heal and recover.
 
Also, when my kids can't sleep, I tell them just to stay in bed and read. I don't care if they read for hours. They're at least resting (and I'm sleeping!) and eventually they fall asleep at some point.

Is he tired during the day when he doesn't sleep well? Our GI was pretty concerned when DS wasn't sleeping well since that is the body's natural time to heal and recover.
He doesn't really act tired during the day...but then again he will sleep until 8:00 am. which will not work once school starts up again. I have been telling him to go ahead and turn his desk lamp on and just read, as long as he stays in bed. But we only started that rule this week and he still came to my room in the middle of the night at least 3 times this week. I am just wondering if this is something I should be calling his Dr. about or is it just another side effect of Crohns...we are still newbies at this.
 

DustyKat

Super Moderator
Is pain still an issue for him?

Is something worrying him?

or both?

I know with my son I have to ask very specific questions of him to get the answers I need.

Dusty. xxx
 
My son has difficulty with sleep too. If you give a bath put Epsom salts in it, that really helps! and also pulls out excess toxins and adds magnesium to his system. I have been giving my son 200-400 mg of magnesium caps (Kirkmans) at night for several many, it helps with anxiety, (also helps with his constipation, but this may not be advantageous to you). There is a drink mix at the health food stores or online called "Kid Calm" which is primarily magnesium. It really helps if he is short on magnesium, or has any anxiety or difficulty unwinding. they also make "Mama Clam" which helps me when I get overly stressed, essentially the same formula different flavor.
ALso you say you are giving him 6mg of melatonin, not sure if that has worked for him in the past, but i can tell you that my son has been taking 1mg for the past 5 years and within 30 minutes he is drowsy, However if he has 2mg or more he is wired and has difficulty going to sleep! Sort of like benadrill for some people too much can make them wired.
So maybe try a small dose of magnesium after an Epsom salt bath and add some magnesium to his nightly regimen. If I run out of either the magnesium or the melatonin he sometimes cant settle down. I use only "Source Naturals" melatonin as over the years i have found it consistently to work best for my son. when it is not hot out i give my kids a stuffed animal filled with flax seed that has been heated in the microwave for a couple of minutes, it gives them a toasty friend to hold onto and feel safe and cozy. Can be good for joint pain or stomach pain, like holding a little warm animal friend. We call ours heat up bunnies. :) good for the spirits whenever extra care is needed.
I hope this helps. good luck. I remember how hard it was before I got this regimen down for my son, hours every night trying to get them to sleep can be really nerve wracking. all my best to you and yours. I hope this helps.
 
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The steroids seemed to make a mess of his sleeping patterns. I am just at a loss and I feel like I am being mean to him when I have no ideas other than "keep trying" "just close your eyes" "think of good fun things". I just want to help him and I don't know how.[/QUOTE]

I didnt see that he was on steroids before, we had a tough time coming off those. I recommend giving "Drenamin" a try (an over the counter adrenal support supplement) recommended by our pediatrician and purchased online after we tried to wean off steroids with difficulties. My son was really having a tough time for six months after being on steroids only for a couple of months, once he was on the drenamin for awhile he returned to his old self. :) he has stayed on it now, about 7 months. I leave him on it because he has low stamina and i think it helps him deal with stress, but it definitely helped with his adjustment off the steroids.
Other ideas for what to do at bed time you probably already know, having a routine at bedtime can help induce sleep because the routine becomes associated with sleep and then helps to trigger it, so no matter what you decide try to make it the same routine as often as possible and be sure to avoid any screen time for at least 1 and half hours before attempting sleep( studies show this is how it takes your brain to change rythems after screen time)
My son loved to listen to books on tape or CD to fall asleep , we went through just about every one in the library.
If he is still recovering, rubbing his back for a few minutes could help wind him down and be soothing, but then make sure you have a consistent exit time so you don't get stuck in there for hours maybe leave on some classical music that is the same every night and will help trigger the signal to sleep eventually.
Can you tell i have been in your shoes before? hope it helps some. :)
 
Zab - what is an LDA doctor? Sorry, I'm not familiar with it or having a brain-cramp... either way, unsure.
Sorry i didnt see this question sooner. I think it was answered already, just wanted to say my son is now on his second LDA treatment.( our doc does one treatment every 2 months) he had 6 weeks of great improvement in his ability to get up and be more mobile before he got lethargic again. The shots are very painful, but worth it, this last time my son was ready before I was to go to the doctors appointment! I usually have to track him down and beg him to go to other doctors. He doesn't mind going in for the LDA shots because they seem to be really helping him. They work to strengthen his bodies ability to cope with immune system malfunctions. I am so grateful!
He also started LDN (a new drug for crohns approved for kids in Sept 2012)at the same time, So I dont know for sure which is helping more. they both have great track records and with LDN there are reports of actual healing of the gut, so I am really hoping for some good changes in a few more months. So far he is steadily improving after being pretty much bedridden for the last few years. its hard not to get too carried away hoping for a miracle but afraid to believe it. i have been burned before so I am waiting, trying to wait patiently. Nine years of damage doesn't heal over night I am told. :) and he is slowly improving. Able to do more and laughing and engaging with the family more. inch by inch. Healing takes time.
 
Sorry i didnt see this question sooner. I think it was answered already, just wanted to say my son is now on his second LDA treatment.( our doc does one treatment every 2 months) he had 6 weeks of great improvement in his ability to get up and be more mobile before he got lethargic again. The shots are very painful, but worth it, this last time my son was ready before I was to go to the doctors appointment! I usually have to track him down and beg him to go to other doctors. He doesn't mind going in for the LDA shots because they seem to be really helping him. They work to strengthen his bodies ability to cope with immune system malfunctions. I am so grateful!
He also started LDN (a new drug for crohns approved for kids in Sept 2012)at the same time, So I dont know for sure which is helping more. they both have great track records and with LDN there are reports of actual healing of the gut, so I am really hoping for some good changes in a few more months. So far he is steadily improving after being pretty much bedridden for the last few years. its hard not to get too carried away hoping for a miracle but afraid to believe it. i have been burned before so I am waiting, trying to wait patiently. Nine years of damage doesn't heal over night I am told. :) and he is slowly improving. Able to do more and laughing and engaging with the family more. inch by inch. Healing takes time.
Thank you so much!!! I am going to give a few of these ideas a try. At this point I am willing to try anything. We have been on vacation and it is summer time so his sleep routine has not been really consisant...but this all gives me hope that we will all be able to sleep again...soon :) Thanks again!
 

Dexky

To save time...Ask Dusty!
We have been on vacation and it is summer time so his sleep routine has not been really consisant.. Thanks again!
I think that may play into it quite a bit! My kids are all up at odd hours in the summer. They pay for it the first few days of school though:)
 
Help Please,
My daughter is 14yrs old and she has been suffering since she was little with stomach pains, diarrhea, vomiting, sores in her mouth, joint pain, had trouble gaining wt, very tried. I have had her to a lot of drs who said it was either in her head, she was faking, or some children just have stomach pains. Her new pediatrician sent her to a GI dr who deals with crohns. She said that my daughter is showing sign of crohns. The dr ran blood test and it showed that my daughter does have an autoimmune disease. My daughter is going in the hospital tomorrow because she is now not able to go to the bathroom and we have tried everything. On thursday she will be having and colonospy and they are sending down a capsule. She will be going to see a rheu dr in sept. Help I so scared and confused
 
Kerrbear1030,

First of all, here is a virtual <<hug>>.

I'm so sorry for you and your daughter. I hope the GI will lead you towards a resolution soon. It sounds like the tests are on target, but maybe others can chime in on that. I'm still pretty new to this also.

Regardless of whether or not this is Crohn's, the ambiguous days of not having a diagnosis are really scary for everyone. I'm really glad you found this site because there are wonderful and kind people who are extremely knowledgable and will be able to answer some of the technical questions you will have.

You should start a new thread about your daughter under your name.

Many kids who are diagnosed find good, working solutions with certain medications. I know everyone is different, but try not to get too hung up on the extreme cases. Take one day at a time.

Hugs.

Kimberly
 
Kerrbear... Just breathe. You're on the right path now by seeing a GI. It's overwhelming and scary initially, but it gets better, especially once you get an official dx.

Get copies of everything for yourself so you can look things up and ask questions here.

Make sure they take biopsies w the colonoscopy. A pill cam is a good way to see what's going on in the small intestine.

I'd also ask them to test her for Celiac Disease. It has many of the same symptoms as Crohn's, yet easier to manage.

Good luck Thursday and let us know how it goes. Feel free to start a new thread with all your questions an concerns. You'll get a better response with a new thread.
 

CarolinAlaska

Holding It Together
Hi KerrBear. It sounds like your daughter has a lot of symptoms our daughter had. How is she doing? What did the tests show?
 
Kerrbear,
Welcome to the Forum. This is a place where you will get a feeling of community among parents of children who are going through the same things yours has. On any given day, when you come here, you will find someone going through the same thing you are and others who just came out of it.

It sounds like Crohn's for sure based on all of the symptoms you described, but of course, you won't know for certain until all the tests are run, and even then, maybe not right away. It could be a long process, so get ready.

On the other hand, it sounds like your daughter, and of course you, have been through hell already over the years based on what you described. So, maybe this hospitalization will give you validation that this is NOT in her head, nor is she making it up despite what has been suggested by certain idiots along the way.

As suggested by Kimberly, I believe, you should start a new thread in the "Parents of Kids with Crohn's" under your own name so we can follow your progress and offer you support along the way.

I'd also like to suggest, if you haven't done it already, that you read other threads by parents to see what their experiences have been like. I think it will give you a sense that you are definitely NOT alone.

I wish you my best as you go through this process, and don't hesitate to advocate for your daughter as strongly and loudly as you need to if you feel like you're not being listened to or being disregarded. We're here for you!

Stacey
 
I am looking for members that might live in or around Salt Lake City, Utah. I have been trying to find some kind of support group for my 9 year old. I think it would really help if he could make friends with kids his own age that are dealing with the same Crohns issues he is. I feel like this forum has helped me to connect with a lot of parents that are going through the same things we are, and I want him to feel like he has that same kind of opportunity. I have looked all over and can't seem to find one. Any suggestions would be appreciated :)
 

Jmrogers4

Moderator
Have you checked with the local CCFA? His Ped GI office? I know we don't have a support group around here. Jack often feels as if he is the only one in town. We head your way a couple of times a year for skiing or Lagoon even though Jack is a bit older he would be happy to meet/have lunch or whatever.
A couple years ago they had an article in the paper about a local baseball pitcher at one of the high schools that was dealing with Crohn's and through some friends we were able to contact his coach who set up a lunch for them. It was fantastic and even though the boy is now in college he will still occassionally check in with Jack to see how he is doing and it is great for Jack to see someone who is a few years older playing ball and going to college and just enjoying life.
 
Have you checked with the local CCFA? His Ped GI office? I know we don't have a support group around here. Jack often feels as if he is the only one in town. We head your way a couple of times a year for skiing or Lagoon even though Jack is a bit older he would be happy to meet/have lunch or whatever.
A couple years ago they had an article in the paper about a local baseball pitcher at one of the high schools that was dealing with Crohn's and through some friends we were able to contact his coach who set up a lunch for them. It was fantastic and even though the boy is now in college he will still occassionally check in with Jack to see how he is doing and it is great for Jack to see someone who is a few years older playing ball and going to college and just enjoying life.
That is a good idea to talk to his GI dr. The only CCFA we seem to find is the national one...they really didn't seem to have anything local. I mean we have Primary Children's Medical Center here you would think there would be a huge need for something like this, but so far we haven't been able to find a group for him. Maybe we get to start one :)
 
Kristy, I would encourage you to contact someone local from the CCFA. I recently signed up for the Take Steps Walk through CCFA and was immediately contacted by a local representative. We've kept in contact through emails, phone calls, and even met one morning for coffee. She's not only helped with our fundraising efforts, but also gave me information about local support groups and gatherings for kids with IBD (that were not on the CCFA website). There are parents in our area that hold informal gatherings for the kids/families throughout the year in addition to the more formal groups. Perhaps there is something like that in your area. If not, someone from CCFA should be able to help you get a group started if you'd like to do so. I've found them to be very friendly and helpful.
 
Kristy, I would encourage you to contact someone local from the CCFA. I recently signed up for the Take Steps Walk through CCFA and was immediately contacted by a local representative. We've kept in contact through emails, phone calls, and even met one morning for coffee. She's not only helped with our fundraising efforts, but also gave me information about local support groups and gatherings for kids with IBD (that were not on the CCFA website). There are parents in our area that hold informal gatherings for the kids/families throughout the year in addition to the more formal groups. Perhaps there is something like that in your area. If not, someone from CCFA should be able to help you get a group started if you'd like to do so. I've found them to be very friendly and helpful.
Thank you I will do that :)
 

Tesscorm

Moderator
Staff member
Non-crohns related question (wasn't sure if I should post here or "Much ado" thread???) but wondering if anyone has any experience...

My daughter often has really itchy skin (can happen anywhere - arms, legs, back, underarms, etc.) - sometimes there's a bit of a raised rough rash, other times there are little bumps (not rough, more like tiny hives), sometimes red patch, sometimes there's nothing but an itch. But, when she scratches, she literally ends up with rows of raised white welts (the welts almost look like hives but in 'rows' from her fingers).

A couple of years ago, we did find that stress seemed to trigger itchiness (ie she gets itchy all over when studying for a tough exam) - doctor once told her it's an allergic reaction to stress. But, it's been happening more frequently lately with no real stress and at random times, ie sitting at dinner last night her thighs got itchy. Also, happens at home or out.

She's used benedryl anti-itch cream and it helps sometimes, not always. If she ignores it (but it is really bothersome!), the itchiness eventually goes away.

I've told her to go to the doctor but, she's working now and doesn't want to take time off work (she has her annual in Oct so, if not before, will see Dr then).

Anyone have any ideas??? I know allergies can develop at any time so, could allergies have random episodes like this? And, would an allergic reaction just stop itching after a short time (ie 10-15 minutes) and then start up again in a different spot an hour or so later? And the raised welts from scratching are also really bizarre?? It's really odd to me and I don't know what to suggest to her...
 
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YES!
I get them too. My mom says their from a weed outside but I always notice them when I'm overworked/stressed/sweeting.

My went away for a few years but now have come back with a vengeance.
I now take an allergy med with Cetirizine in it. It's a cheap over the counter med and doesn't cost a lot but works like a charm.
 

Tesscorm

Moderator
Staff member
When you say you get it when you're overworked/stressed/sweating, do you get it immediately? Or just at some time that 'day', ie overworked in the daytime but the itch comes in the evening?

Because I am thinking it is some sort of allergic reaction but its randomness in time and presentation is confusing me. :ywow:

Also, just to clarify, sometimes the itching is in multiple areas (her words 'I'm itchy all over')... :ybatty:
 
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When you say you get it when you're overworked/stressed/sweating, do you get it immediately? Or just at some time that 'day', ie overworked in the daytime but the itch comes in the evening?

Because I am thinking it is some sort of allergic reaction but its randomness in time and presentation is confusing me. :ywow:

Also, just to clarify, sometimes the itching is in multiple areas (her words 'I'm itchy all over')... :ybatty:
Mine show up right away or latter.:tongue: Both I guess. The older I get the worse it has gotten. I remember being itchy a lot and not always having hives.
Now it's at the same time. Since starting the med I don't get it at all.
Oh, my hives seem to leave during winter BUT might show up once or twice in the winter months. Confused yet??? Welcome to allergies!:ybatty:
 

CarolinAlaska

Holding It Together
It may be urticaria, or just stress. I think certirizine (generic Zyrtec) is a great place to start. Hydroxyzine would be good for night-time relief, but it makes one tired...
 

Tesscorm

Moderator
Staff member
Thanks CarolinAlaska! :D The welts from scratching really closely resemble images and descriptions of dermatographic urticaria. And, from what I read, the first outbreak of urticaria can cause outbreaks in other parts of the body even if they haven't been directly touched or scratched. Seems to fit in with the raised welts from scratching and the fact that they will disappear after a little bit but then another spot appears.

She hasn't seen her doctor but might be easier once school starts as her dr. is minutes away from her school.
 
Not IBD related.

Today l have been so stressed.

At 3am l got a call from my son saying that he'd smashed the car.
When l got there l couldn't believe what l saw.:(

Apparently a fox had run out in front of the car and instead of breaking he accelerated and tried to swerve. He hit a metal barrier and the car spun around. The car is a write off but luckily no one was hurt.

I know it was an accident but l keep wondering was he speeding and what were they doing driving around when he was only supposed to be dropping off his friends after a night of watching soccer at our place.

I suppose l'll never know the truth.
 

Tesscorm

Moderator
Staff member
Thankfully no one was hurt! But, poor you! I can imagine how frightening it must have been!! I always worry about my kids driving, whether it be their perceived invincibility or simply lack of experience. :( I'm just glad he's okay! :ghug:
 

DustyKat

Super Moderator
Oh no upsetmom! What an awful scare for you! :ghug::ghug::ghug:

Thank goodness everyone was okay. :) Hopefully if he wasn't quite doing the right thing he will realise how lucky he was and learn from it.

Thinking of you! :heart:
Dusty. xxx
 
I know first hand how scary a car accident is, I lost my 18 year old daughter to a car accident almost 5 years ago...glad your son is ok:hug:
 

DustyKat

Super Moderator
Oh Jessie's mom, my heart goes out to you. :ghug::ghug::ghug:

I hope all goes well for Jessie and Remicade works wonderfully well for her. :heart:

Dusty. xxx
 
So glad everyone is okay... We live in an area with lots of deer on the roads so it is something that is covered significantly in training classes... Alex has not been anxious about driving and thus far I've been okay about it... but I know the day will come..

So, so glad he's okay and no one was hurt! Cars can be replaced.

Jessie's Mom - I am so very sorry to hear about your loss...
 
So Jessie stopped her mp6 med so she can start remicade on the 10th,with her colitis she doesn't go to the bathroom much,but has many ulcers,that's why they are trying the remicade.somdr took her off mp6,it has been almost 4weeks now and she was going to the bathroom more and more and today she started with diarrhea and I am so scared its gonna just get worse before Tuesday,any advice would be helpfull.
 
I'm sorry to hear she's feeling bad so quickly after stopping the 6-MP.

I suggest going to an exclusive liquid diet of Boost or Ensure and see if that helps calm things down for the next 5 days at least. You may need to keep her on that until the 2nd or 3rd Remicade treatment since it doesn't always kick in with the first treatment.

You should consult her doctor about this and I would be sure to let them know her symptoms are returning very rapidly. They may have some other advice for you like using Imodium. but you shouldn't use that without them telling you to do so.

I don't know how old she is but if she's fairly young or extremely malnourished you should keep an eye on the number of bouts of diarrhea she has in a day. You want to make sure she stays hydrated - drinks water (not juice or soda) and small amounts of gatorade-type drinks.

If she has 10+ bouts in a day (less if she's very young) I would call the GI or her primary care doctor as you may not be able to keep her hydrated at home with that number of BMs.

I hope the remicade works great and right away.
 
She is 17 but also has partial trisomy 16 which is a genetic condition that not much medical is known.for her she is mentally a 4-8year old and very small,she has a very high pain threshold which makes this worse the dr often tells me he can't believe she don't complain because of what he sees in her scopes which is the only way to monitor her,this whole thing just sucks
 
Well it did get worse we have been in hospital since Friday,fever high heart rate diarrheah ,vomiting this has been a awful week. Today finally doctor feels it is a bad flare and started her on steroids, once she is fever free we will proceed with the remicade .today she looks a bit better still receiving Iv wont drink anything for me and has no control of bowels at all. Praying the fever don't come back she has been fever free for about 12 hrs now had one dose of steroids about 7 hrs ago.she has been lucky I guess since she has not have a flare since she first got ulcertive colitis in 2006. Hoping the remicade heals these ulcers because they seem to be more and more:(
 
Jessie is doing better only 4 BM today and last one was not in her pants,she had her first remicade tonite with no reactions,seems ok,hoping we get out of the hospital sooner then later.just wish her dr would come in and not resident doctors.i will for sure be having a chat at her next dr visit,this week has been horrible and felt he should of been here more than 2 times in 6 days..does anyone see effects of remicade in following days or are they just during infusions
 

CarolinAlaska

Holding It Together
I'm glad she is improving. I hope she continues to get better. Sorry, we haven't done Remicade at this point. If you post your own post on the Parents of Kids with IBD page, I am sure you'll get more traffic and more people with experience with that can pipe in.
 
Alysa, my grand daughter, has had her 2nd infusion of Remicade. She is also on her second full week of school. Seems to be working for her at this time. Hopefully this will be what others have talked about, and put her in remission for some time. The medications she was taken have for the most part been taken away with just a few of them now that she still takes every day. I wish the best for all of you! Just wanted to give an update!:ghug:
 
I am happy to hear shes doing good. My daughter begins remicade on the 22nd. We are praying it works good with minimal side affects.
 
Well, I am sad to say we are back. With our daughter being in remission for 6 months, we were keeping busy and hoping all would be well. I thought of all of you during that time and would look at the site from time to time and try to offer support to the many sufferers of this disease.

A few days ago, Crohns symtoms came back with a vengeance. Our GI thinks that it could all go away in a month and that this is not uncommon. A virus still can trigger an inflammation but go away soon with the Remicade treatments she continues to get.

I can feel myself locking up and getting worried, but hope to keep positive and know it will work out.
 
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