My daughter just diagnosed and we are scared

My daughter Grace is 10 and was diagnosed with Crohn's Disease on 12/27/2012. We are in shock that this has happened to her. Our healthy little girl has been in so much pain and we never realized it until the last few months. She was diagnosed with lactose intolerance when she was 6 (it runs in the family) She managed it with a lactose free diet and lactaid pills. She did well for a number of years. Then in June of 2012 she was diagnosed with central precocious puberty by an endocrinologist, so after MRI's and ultrasounds were completed, she started a monthly Lupron injection. She is such a trooper to get that injection every month!! Starting August 2012 she began with more frequent diarrhea. She has had diarrhea off and on over the years, but nothing too severe. We saw her GI dr in late September because she started to complain of pain in her chest (heartburn). Dr rx prilosec and keep her on lactose free diet no lactaid pills. We noticed she had lost a little weight too. Well prilosec was helpful and after about a month or so we stopped it and she was fine, except diarrhea continued. I contacted GI dr and we began lab work, stool tests, urinalysis in preparation for a December visit with the Dr. Labs were abnormal Hemoglobin low, Sed rate and CRP high. Urine showed dehydration. C-diff was neg, but fecal calprotectin very high at over 1700 should be under 163. So on 12/24/12 we were at Children's Hospital for a colonoscopy and endoscopy for my baby.....Dr who did the scopes said it looked like Crohn's and that she had ulcers & inflammation throughout her colon. Her small intestine was inflamed and he could not get a good biopsy there. Our regular GI spoke with him and they started her on Prednisone, which is helping. GI Dr called us with biopsy results on 12/27 and its officially crohn's. We are keeping Grace on 5ml of prednisone until we see GI Dr on 1/3/2012 for full discussion. Other tests they did ruled out celiac and food allergies. We will get enzyme testing results next week. I have been doing a lot of research and these meds scare me!!! I did discover a thread on here for Low dose Naltrexone. It looks promising, but I have so many questions and concerns. Any advice/information would be greatly appreciated!!

Hi and welcome. Sorry you had to find your way here.

I also have a Grace.:ysmile: She three and was dx on the 28th.
Her dear father and I knew for years something was terrible wrong but much like your Gracie, she hid it well. So getting a doc to take it seriously was hard since she's so darn cute and happy (I'm a little bias)
Has anyone talk to you about EEN? If not PLEASE look into that.
I'll be happy to give you more info on it if you don't already know about it.
I know more dear parents will be along to give wonderful advice.

Hang in there mom. This road will be bumpy from time to time but we're all here with our kids bumping along with you.:ybiggrin:

Hi and Thanks for your response. What is EEN? So sorry that your Grace only 3 has this too. It is just dreadful!!!

Welcome
So sorry to hear your child was dx but glad you have answers.
Second looking into EEN it is as effective as pred in putting children into remission.
As far as meds they are scary but so is Tylenol if you read the whole pamphlet ( it can kill).
Number one cause of death for kids is a car accident ( 1 in 250)

So odds of a med causing an issue is in the thousands or tens of thousands.
Very low risk compared to under treated crohn's which can cause lots of issues.
The other problem is no one med is guaranteed to work for all.
We had one gi tell us there is no wrong way to treat Ibd only different ways and whatever gets your child to remission is the right one for the moment.
Some docs like top down- that way you don't leave the damage go on any longer than necessary. Some like bottom up start with the easy least effective drugs first hoping to have less side effects but potentially causing more damage as you slowly go through each to get to the one that works for your child.
Almost all children with Ibd need a maintenance med .
What that is depends on the extent of her disease and her docs.

Www.improvecarenow.org
Has a lot info including Ibd specialists across the country .

Get copies of all blood tests and pathology reports and imaging studies for your records .

Take a breath .

http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf

Paper on EEN
Exclusive enteral nutrition
Basically child is no foods and formula only
Preferable an amino acid or peptide based formula.

Your GI can prescribe it and then order it though a durable medical equipment supply company.
Your insurance may have a medical equipment clause.
My son drank all of his orally.
Others have used an ng tube .

Peptamen jr

http://m.abbottstore.com/abbott/catalog.do?cid=2061136
Peptide junior
http://www.nestlenutritionstore.com...OCODE=PDSS10&gclid=CPzX8-HywrQCFY-d4AodCTEAVw



Elecare
http://m.abbottstore.com/abbott/catalog.do?cid=2090262

Neocate
https://www.neocate.com/shop/c-6-nutricia-category.aspx
E028 splash

Our Gi Dr did mention they had just completed a study on a liquid diet for 6 weeks that increased remission rates for kids with crohn's. This must be what she's referring to. I will definitely look into it more. I know she wanted to discuss more details with us next week such as short term and long term treatment plans There is so much info out there. Trying not to get overwhelmed

Grace is on a bland diet for now which seems to be helping, but I'm sure the Pred is most responsible for that

Hi Gracesmom
welcome to the club! sorry you had to find us but glad you did. my daughter Caitlyn was diagnosed four days before her eleventh birthday. it has been a rocky road for us but this forum has been a lifesaver for us. I wish we had found it right away. I am glad you have been looming at the treatments. I highly recommend considering EN as your first treatment to try. it is nice to hear an American doctor is considering it as a lot of them seem to be negative about it. for us LDN has been what worked but we tried a lot of other things first. keep us posted i.e. how she is doing.

Hi there! Glad you found us!

There is some great advice listed here. When thinking of EEN some people are scared of it thinking omg how can I get through the holidays or go to functions and I have to tell my kid she cannot have any food. Sounds hard to do. But trust us going with the meds sometimes but not always gives you the results you need. Sometimes you have to add things that are much more painful to have to do to your child... Enemas, suppositories multiple times a day. So in regards to the differences the EEN is a way happier road to recovery in the end. I imagine there is a huge adjustment period and doesn't always work forever or even at all but this can buy you some time and get her better and you more time to wrap your head around all the different treatments and medicines. You can always feel good knowing she is nutritionally sound. So you aren't being hasty and are thinking clearly. It is so hard in the beinning to even come to terms with the fact that this is a lifelong issue your child and you will be dealing with. Before long it will become your new normal and you will realize how to navigate through it all mentally.

We took the bottom-up approach and it failed to achieve remission. EEN wasn't an option bc my DD was UC and not Crohns. The best thing you can do for her and you is doing what you are doing now. Educating yourself and working towards and end goal of remission.

Regarding the Predisone. We had a love/hate relationship. Loved it when it work but it only took 6 months of use for us until we didn't get any benefit from it anymore. It is a the first med usually used to stop the damage before you can get something that works for long term use. I would say your first goal should be to get off of the Prednisone as soon as possible and stay off of it. (Easier said than done for many of us). Keep in mind the Pred is the big guns, can be way worse than your worse fears of some of the other meds your researching. Pred likes to make you feel safe and then the ween starts and your back to being a mess with a sick kid. Gradually as you go through this process, she will go on it and off it, depending upon the treatments chosen she might go on it again. There is always a time of Predisone ween and were some of the roughest times we have ever had in our lives so far. You'll get there I hope your first choice is the only one you need for a long time.

My best to you and your daughter Grace. Please keep us posted. This site has been a sanity saver for me and we all work towards helping each other through the journey. Sometimes when things get bad we don't have the time or the info we need and this forum has saved me on more than a few occasions in the last year.

Stay strong!

Mary

my little penguin said:

http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf

Paper on EEN

Click to expand...

Welcome Grace's Mommy! I know all the info that may be thrown at you can get a little overwhelming. Actually, it doesn't take much to overwhelm me at all!! I have seen this link in a couple of posts lately and it is the most clear-cut explanation of Enteral Nutrition therapy I've seen. I would recommend reading over it before your next appt.. I wish I'd have been better armed when my son was dxed. Good luck!!

Hello, and welcome to the forum. I'm sorry you had the need to find us, but this place is an AMAZING support!
My daughter Devynn is 11 years old and has Ulcerative Colitis. Devynn's symptoms started at approx 18 mos old. It was always always chalked down to a virus, or some other childhood sickness. But in my heart I knew something was very wrong. She was originally *unoficially* diagnosed with Crohn's disease in Dec 2009 after an upper and lower scope. Her diagnosis was changed in Feb 2012 to Ulcerative Colitis. Although I don't think her dr's are sure. We have been seeing her GI since Aug 2009, and were just referred to the IBD clinic and a new dr (thank goodness). We go see him for the first time in Jan.
I found the forum almost a year ago (Jan 2012) and have gotten a lot of support and advice.
Devynn has been on Pentasa, Mezevant and is currently on Sulfasalazine. We are trying to get her into remission right now.
Good luck! I hope Grace is feeling better real soon. ((((((hugs))))))))

Hi and welcome! Sorry to hear about your daughter's diagnosis. My son was diagnosed last year and was put straight onto the EN liquid diet for 8 weeks. I know it seems hard, but it is really worth it and has no side effects. My son hated the taste of the Modulen so he had the Nasal Gastric tube in his nose the whole 8 weeks - he went to high school with it in. It was worth it as we have managed without any Pred since.
I don't have advice on meds as we are just starting them in january. My son is starting the 6mp, so we shall see how it goes.
Good luck with the appointment, hope it goes well.

Grace's Mommy
I tried to pm you back but it says your file is full. That's amazing since you just got here.
If it's a problem let us know. I'll try again a little later.

Do you know where her disease is located? How much damage is there? Have you had her vitimans levels checked?

They found ulcers and inflammation throughout her entire colon and inflammation in small intestine. Dr said biopsy results showed crohn's but I'm not sure which ones. They took biopsies from esophagus, stomach, colon etc. Pretty much everywhere. That's one of my first questions for the Dr on Thursday is where is the crohn's and how severe. Vitamin D level is within range but on low end. She sees an endocrinologist for her precocious puberty and we've had her on Vitamin D supplements for awhile now. Not sure if they'll need to increase the dose. What other vitamin levels should they be checking?? Another fact I find interesting is that I've read most crohn's kids have delayed puberty. Well my daughter's is early and she's been on hormone suppression injections monthly since July (Lupron). I don't know if the crohn's diagnosis will change the endocrinologist's treatment plan. I will check my inbox.....:ysmile:

Welcome to the community. I'm so sorry to hear about little Grace I can't imagine how hard that must be on you, her, and your entire family.

The good news is you've connected with the other parents here. I'm continually amazed by what supportive, knowledgeable, incredible people they are. You're in good hands.

All my best to you and your entire family.

Have them run a metabolic panel and vitamin panel it will give you a better idea than any of us telling you what we do since we all do different things. The big ones that I know of are B complex esp B12, Vit D, Iron w/ Vit C. Depends really on the disease and where it is located and what is being absorbed and what is not. I always found nutritional shakes to be the best thing bc it covers everything without over doing anything. Doctors can prescribe them or you can by over the counter ones like PediaSure but most like peptide based bc it is easier to absorb for the proteins are broken down. But the taste is defiantly compromised.

Also certain drugs can cause different issues like bone loss so some have to use a lot of calcium to offset the meds. It is such a tailored disease.

Hi Graces Mommy - glad (and sad) you are here but you're in a good place.

You'll want to write down questions for your visit. I would even make notes during. CCFA has a great website do familiarizing yourself with terms, med names, etc. and in my opinion, you've found THE best place for support.

Like Mary said, we too have a love/hate relationship with prednisone. It is a good "quick/temporariy fix" to stop the damage while you work with your doc to formulate a plan. My hubs use to joke it was Claires "fix a flat" to stop the leaking. Yeah.....he makes lots of bad jokes.

Big hug - keep us posted.

Julie

And one more thing......you'll probably find quickly that few kids meet the "cookie cutter" definition of a kid with crohns. Claire is just a few months from age 10 but the tallest kid in her class and normal weight when not in a flare.

All of our other specialists defer to the GI or at least always consult when changes are in order. Are your endo and GI at the same Hosp?

J.

Both of her specialists are at Children's Hospital in Philly and regularly communicate with one another. I will ask the Dr about the metabolic panel and vitamin levels on Thursday. Stinks we have to wait, but at least she's doing a bit better on the Pred and is not in so much pain. The pain was the worst:thumbdown: Thanks for all the advice:ysmile:

Hi Grace's mom, I was you a year ago. Freaked out that my healthy perfect child suddenly had a serious chronic disease. Crohn's came to my daughter seemingly overnight. All I can say is run, do not walk, to buy the book "Breaking the Viscious Cycle" by Elaine Gottschall. This book, along with LDN, has kept my daughter off the scary drugs. It is not an easy diet to get used to, but when it works, it works. My daughter has been mostly symptom- free since June, and she showed marked improvement within 2 weeks of starting the diet. There is a lot of help out there if you look. I'm so sorry you are going through this; I know how hard it is.

Welcome to the forum Grace's mommy, I'm sorry you had to search us out but you are in fabulous company.
My son was dx's at 10 he is now 13. My son is on LDN but has also been on Imuran and Methotrexate. I'm a fan of whatever works and gets them back to feeling like happy, healthy children again.
Keep us posted and hopefully we can help with any clarification on what the GI is talking about (not me necessarily as most of it just makes my head hurt) but there are so many on here that are able to explain things so that I can understand.

Welcome Grace's Mom! I am so sorry you have to deal with this nasty disease. This forum is fantastic and you will find so many warm and helping people here. It is hard now but time will pass and you will "get used to" worrying, checking, hoping, smiling at the smallest success and being disappointed some days too.

We have been fighting with CD for 5 years. My daughter is 12 now. We never tried EN as my daughter would never even try it. She used to be on MTX for a few years and it was great but after a while it wasn't enough. Now she is on Remicade and within 4 weeks (2 Remicade infusions) her blood test results are fantastic. I hope this continues and 2013 will be a good year for us. I wish you the same and am sure that this all shall pass and your daughter will feel better soon.

I have no good advice as far as docs and meds as we live in Germany and things are a bit different here - not better, not worse - just different...

Glad you found this forum!

Ania

Hi Grace's Mommy and :welcome:

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

I can't add to the fab advice you have already been given. Except to comment on your enquiry about bloods. Aside from the baseline ones that should automatically be ordered I would also request: B12, Folate, Iron Stores, Vit D (which will likely be done by the sounds of things), Magnesium and Zinc. I would ensure they do continued monitoring of CRP and ESR.

I would also include these sort questions at the consult, some are just for clarification of what you already know:

-What is the diagnosis?

-Where is the disease active?

-What form does the disease take (inflammation, ulcers, fistulas)

-How severe would you say the disease is?

-What symptoms do I need to report immediately to you, which can wait until my
scheduled appointment, and which signify an emergency?

-What treatment options are open to my daughter?

-What does (treatment) do? What side effects should I be aware of?

-How long before I should see an improvement?

-Does my daughter need to take any nutritional supplements such as b12 or iron?

Good luck! and be sure and keep us posted on how things are going.

Dusty. xxx

Thanks for all the advice and questions to ask the doctor. My list is getting longer and longer. Right now evening time is very difficult for her. She seems to be so much better in the mornings, but by 5pm she's cranky and very picky about her food. Not sure if this is the Pred?? We split her dose 2.5 ml at breakfast and 2.5ml at dinner. Dr said we could split the dose or give it to her all at once. Not sure if it will make a difference to give it all at once??
Wishing all of you a Happy New Year!

The main issue we had with splitting the dose is my kid would have trouble sleeping at night. In the beginning we did split it to twice a day and then eventually we just gave it all in the morning. Be sure to give her the PPI an hour before the Pred for the stomach upset.

We did a split dose so that the level is more even in the blood and less mood swings - but they were still there.
Evening is just tough in general.
We have a love hate relationship with pred as well.
It will get better.
Unfortunately it takes a long time

Hello and welcome!
On Pred-we split the dose as well. Moodiness was common for us with pred, and we also split the dose.
So glad that you found crohnsforum early on-they have been a tremendous amount of support for me over the past two years! Also thrilled that you are at one of the top three childrens IBD hospitals in the region- it is popular for second opinions and our GI trained there.
You have been given great advice already, but I wanted to comment that the meds CAN be scary. I refused to put dd on Remicade until we traveled to Boston Childrens for a second peds GI and our GI consulted his former colleagues at CHOP and they all agreed. I also needed to take into account the potential effect of untreated Crohns-it helped bring the potential risks of the scary drugs into perspective. I wish none of us had to put our babies on ANY of them...but sometimes we do.
Glad she is having less pain and WELCOME on board...keep us posted!

On Prednisone...we were told not to split it and Kasia took it in the morning as they said the natural level of steroids is the highest in the morning so with the "outside" dosage the result will be better. Of course as I said before, they do it differently in every country and it is hard to say which one is better . Just wanted to give another opinion....

Kasia didn't have any great mood swings - just a bit more energetic after some an hour or so and then later more sleepy. This was during summer vacation so being sleepy wasn't a problem (she actually didn't sleep more then maybe twice, she was just tired) I can imagine this could be a potential problem when at school.

Ania

If there are issues with wakefulness at night I would recommend that you do a full dose in the morning otherwise there is no issue with splitting the dose.

Dusty. :hug:

Hi just wanted to say welcome like u my boys diagnosis was a shock , he a had probs since he was 2 the docs never mentioned Crohns until the last few weeks before his dx he was 5 when he was dx. He was offered infliximab also known as remicade , he has disease in his rectum colon and small bowel , we took the infliximab as he has fistulas in his bottom and his abscess,s were coming every week , the infliximab wasn't enough so he's now on azathioprine . Were still having probes and I'm considering EEN aswell to get him back to normal ,

I think everyone's Crohns journey is totally different like getting the disease into remission works differently for everyone , my best advice is do what is right for you at the time we battled with the what ifs , maybes , for some time but our journey in the end will be the right one for Lewis , were still finding our feet and still struggling but u,ll find the right path for u and everyone on this forum has been such a help to us with the support. Hope u have a happy new year .xxx

:welcome: Grace's Mommy

So sorry to hear of your daughter's diagnosis. A year ago my son was also diagnosed with Crohn's, also at the age of 10. Sorry to hear that your daughter is finding the evenings difficult. My son also found the evenings very difficult. For him I think it was just harder to deal with both the physical and mental aspects of being sick when he was tired in the evening. It was like by the end of the day it was all harder for him to cope with.

On top of finding the right treatment I would recommend a visit to a child psychologist that specializes in kids with chronic illnesses. This, I think, is especially useful to help these kids process what it means to them to have this disease. They can also teach various relaxation techniques that may help with pain management and just coping with feeling sick at times.

I hope that your daughter starts feeling better soon. It took the better part of a year to get my son back to his normal self but he is finally there and acting like a normal 11 year old.

:hang: it will get better.

I just wanted to second what Twiggy said. My son was diagnosed a year and a half ago at 11 years old. It takes time to find the right medication and for your daughter's body to heal. But you will come to terms with this and find your way. Things are so much better for us than they were a year ago. I wondered if things would ever be normal again but they are, so hang in there. ((((((Hugs))))))))

Hi Grace's Mom,

I'm relatively new to this site...just found it a year ago myself when my then 11 year old was diagnosed. I know how overwhelmed you are and am sure I can say little to ease your concern and worry. I will tell you that a year later, we are all in a different place to where we were last December. Luckily, my son has done very well with the prescribed treatment thank god!. We did EN for the past year, my son drank it during the day rather than taking it overnight through a tube. It helped with my anxiety about him not eating during the day. He began with 6 bottles of Pediasure Peptide 1.0 every day, with 40mg of prednisone which he tapered off by January 2012 and pentasa. He now drinks 4 bottles a day...one with each meal and started Rifaximin in November. I've been very resistant to many of the meds his GI has suggested (Methotrexate, 6mp)..His last Barium x-ray showed little to no inflammation. It is a hard road...with many sleepless nights....this forum has been a lifesaver on many occasions. It just helps to hear others' encouraging words and stories. I don't mention my son's success to gloat, but rather because I remember wanting so much to hear that it would be ok...not just how hard and scary it can be (which it is!) There is also a great book on EN called "Beating Crohns: Getting to remission with Enteral Nutrition. by Margaret Oppenheimer" that I loved. Just a side note...we also changed his diet and really tried to cut out Gluten and processed foods...(he gained 30 pounds and grew 4 inches since last December...I think it was a combination of diet , EN, and meds!

Good Luck to you and your precious Grace. Keep us updated!!!

Well we saw the GI doc this morning. We reviewed all of Grace's tests: Digestive enzyme testing all normal, so the prior diagnosis of lactose intolerance probably incorrect though we are keeping her on lactose free/bland diet for now. Upper GI with small bowel follow through showed mild esophageal dysmotility. The duodenum, jejunum, and ileum all normal and terminal ileum normal too. No bowel obstruction. The biopsy showed mild esophagitis in esophagus, Stomach (antrum) shows active chronic antritis. Small bowel normal. Terminal ileum the sample was insufficient for evaluation. Right colon shows mild active chronic colitis. Left colon shows more severe acute inflammation and granulomas. Diagnosis is severe Crohn's. She is recommending we keep Grace on 5ml of Pred and start Pentasa 1000mg twice a day. She also asked us to consider EN diet. Plan is to start Pentasa tonight and on Monday start to wean the Pred to 4ml. If we cannot wean her without symptoms, she wants us to consider one of the Immunomodulators (6MP or Methotrexate) or Biologics specifically Remicade. Needless to say I really don't want her on any of those if I can help it, but don't know that I'll have my way;-) My husband and I feel that if we cannot wean her from Pred without symptoms that we want to try EN diet with the Pentasa before any of the BIG drugs. Any advice? Also she wants Grace to have bone density scan, see opthamologist, see nutrition at CHOP, as well as their psychologist. We return to see GI Dr and nutrition on 2/21/12, but I have access to the nurse/Dr anytime I have questions etc. My head is spinning......

I understand that the "big" drugs are scary but the problem with EN is once you go off of it, the inflammation slowly starts to come back. EN can be a FANTASTIC treatment option while you're on it bit if you segway to just Pentasa, I would be concerned. I say that because, while Pentasa can help some, it's definitely not for, "Severe Crohn's disease". Heck, it's not approved for ANY Crohn's disease for that matter as it's not been proven to be that efficacious. It's approved for Ulcerative Colitis.

There ARE other options such as Low Dose Naltrexone but most GIs aren't on board with that treatment yet. But check out our LDN subforum for more information there.

I'm all for the EN. If they want to use Pentasa, fine. But I think it needs to be Pentasa + something else. Pentasa by itself would have me concerned.

So sorry to hear all of this.

We start our Grace on EN tomorrow.

Even if it doesn't bring remission at least the knowledge of her getting all her daily nutrient will be meant. One less worry for you. Just a thought. Hugs to you both!

Just my mommy opinion here but sounds like Crohns Colitis. With that being said EN doesn't usually work for colonic involvement. But I believe dustykat recently found something regarding how it might be useful for colonic involvement. Remicade is kinda the same not usually helpful in colonic involvement but does work on some people pair with a Immunomodulator. Idk any kids it worked for with colonic involvement without the pairing. Peds and adult are different for some reason. I have know more people that have had success with Immunomodulators than most other treatments. My experiences are purely colonic bc my DD was UC not crohns, the only reason I even have an opinion to share. Otherwise I usually do not even chime in on a Crohn diagnosis beyond my hugs and support which defiantly are yours.:ghug: Regardless though a good nutritional shake added to her daily routine is a definite must.

I did see that Pentasa is for ulcerative colitis and not crohn's. GI said she wanted to use this to decrease inflammation and see how she would do. I guess she is taking a more conservative approach?? I have been reading about LDN and printed out the studies. I asked our Dr about it and she did know about all the studies and felt the one done last spring on pediatric crohn's was not organized enough. She says that a bigger one is being done, but no info on it yet. She says they have few patient's on it at CHOP and did not seem to want to consider it

It's always head scratching for me when a GI is willing to prescribe a formulation of mesalamine for Crohn's disease when a Cochrane review eviscerated its use yet won't consider LDN when three studies have found it to be efficacious.

Regarding mesalamine in Crohn's disease:

A Cochrane review of 1420 patients found there was no improvement over placebo and didn't feel further study was justified.

Click to expand...

From this thread.

Maybe the last LDN study wasn't, "well organized" but I can assure her that the Cochrane review sure was!

I agree with you David! Even though I am new to all of this, it just doesn't make complete sense.....I will definitely keep it in my back pocket for now and we'll see how my little one does. She really hated taking the Pentasa tonight...Dr said we could sprinkle it on food for her to swallow since she refuses to learn to swallow pills. She threw such a fit!!!

Hi Grace's Mommy, hope you are doing okay ! x My son was diagnosed with Crohn's last Aug, and I remember my head spinning with it all too!!! Just take one day at a time and find out as much as you can, which you are already doing!

My son started on 7 weeks of EEN, he has just had another pill cam scope and his ulcers in his small intestine have nearly cleared up, still there, though the dr says a huge improvement....

Hugs ...
I agree with David
Which I would have over a year and half ago.
EEN is great short term but does not fix the big problem.
We used it in addition to 6-mp
Pentasa alone did nothing for DS - he was only on it a month.
6-mp - DS took for 8 months while DS suffered with stomach pain , vomiting, joint pain , nausea etc... Thinking if we could just get his dose right then that would take care of it.
Unfortunately- the 6-mp kept going to his liver so we couldn't get the dose high enough even with allopurinol.
He was monitored very closely so the Gi knew what his ast and alt numbers were before and real issues could happen.
He even stayed on EN half dose . We tried a diet free of this and that to no avail.
The point being watching your child cry and suffer for months on end makes you more willing / begging sometimes for the scary drugs.
Some of those scary drugs work and work well that you get your child back and your life back.
My son now asks when his next infusion of remicade is.
He looks forward to them .
He knows how well he feels after wards .
Because living a very long time but curled up in a ball is not life for a child .
Given surgery will not even cure it .
Our only hope is to take the scary drugs as long as they will work to keep our children's gut as healthy as possible until the good drugs get approved .

We know its hard and have all been there crying our eyes out.
But seeing the drugs work is truly a miracle to take away all the misery and give our children their childhood back as much as possible .

I truly hope the pentasa works for your child but do not be afraid of changing for fear of side effects - this only prolongs the damage and pain.

Wish you the best

Here is link to learning to swallow pills
Crohn's = pill swallowing period
Pentasa works better if swallowed whole
Used the empty capsules as practice to swallow the pills
Orflo cup
Or mini m&ms
Tic tacs
Bribe with a toy she can have once she swallows

http://www.ccfa.org/resources/pill-swallowing-techniques.html

https://www.oralflo.com/Default.asp?

I second David's information. LDN is off label prescribing and doctors don't like to do off label prescribing. But you can go to ldnscience.org and find a link to a doctor willing to prescribed it in your area. With that being said I THINK... That it will always be off label prescribing bc the pharmaceutical companies don't want people to get better using LDN when they can make so much money off of bigger drugs like Remicade. Doctors get their information from pharmaceutical reps and trust me they are not going out of their way to inform them about LDN. It is all of us and our research and demands that will have to drive LDN out of the dark corner they have pushed it into.

Ok off my soap box. I was not happy that I was refused it and unfortunately my DD was in terrible health once I found out about it. So that being said it is defiantly worth looking into bc when it does work it is little to no side effects. Like the side effects are vivid dreams.

Welcome. I've never posted, but I seldom sleep anymore. John has gone out of remission it seems. Now offered Imuran. Totally worried. I understand the feeling of being overwhelmed. My Mom had lupus and rheumatoid arthritis, so I guess I should have expected this.

But i have to say that one hour here is better than 10 spent blindly searching. May yours get better, and soon!

Hi JCsDad and welcome!

I hope your son starts to feel better. These choices are never easy.

Welcome JCsDad

It will be ok - if your truly not sleep - then try to find some down time something non Ibd , a family friend to talk to etc.....

Hope the Imuran works for your child quickly .

Thank you for the links my little penguin! My husband can't wait to order the oralflo cup and we will definitely try the candy route. She sure does love her candy Thanks JC's Dad. I hope your son starts to feel better soon and you can get some rest. I know how you feel. Can barely keep my eyes open! As far as LDN is concerned, our GI Dr did say FEW children at CHOP are on it, so that means there is at least 1 doc there that is prescribing it. I may just have to talk to that Dr. As much as I like and respect our current GI, I must explore ALL the options for my daughter. As they say, leave no stone unturned even if it does end up meaning the scary drugs

Research and ask questions. For the record, we are on our second peds GI due to a move. Loved them both. Neither supports use of LDN at this time.

I may be repeating myself but so often with this disease, what works for one doesn't work at all for another. That's why I say research and ask lots of questions. Make sure you have a doc you trust. Ask why and why not and what heyve seen work and fail. We are all in this together until these precious children are old enough (gasp) to make their own decisions.

In the meantime, we're here for you!!!

J.

Grace's mommy, do you know if the Pentasa she is taking is the pill that you can melt? My daughter Devynn was on Pentasa when she was first diagnosed and her nurse told us to put the pill on a spoon, add a few drops of water, and when it sort of disolved (into hundreds of balls) we would dip it into applesauce.

Devynn's mom it is a capsule and we can open it and put it in food like apple sauce. It does have hundreds of balls in the capsule and luckily they have no taste

Oh before you do the mommy scream
You will see white balls in her BM
That is normal with pentasa

Glad you brought that up MLP. We had balls in the stool and floating atop the water. That earned the GI another call.

J.

Ok good, that made it easier to take for Devynn.

This is the article that Mary is referring to:

http://www.naspghan.org/user-assets/Documents/pdf/PositionPapers/Use_of_Enteral_Nutrition_for_the_Control_of.29%5B1%5D.pdf

In regard to the success of EEN and Crohn's disease location the general consensus has been that ileal disease responds far better than large bowel disease but there appears to be some doubt about that now and the authors of the article suggest that it be used for all CD regardless of location until proven otherwise.

Dusty. xxx

Thanks Dusty I have been so scatterbrained I had no idea where it was posted or how to find it. You are awesome!

Update on Grace: My poor baby was hospitalized on Friday....We started the Pentasa Thursday night and Friday morning she woke up with excruciating pain! She had not had a BM in 24 hours and had been eating a lot due to the Pred so after a call to GI Dr on call we gave her some Miralax. Well then she started to vomit so off to CHOP ER we went. Spent most of day in ER in severe pain. Morphine did not really help By 4pm transferred to GI unit and pain a little less, but my little girl was so uncomfortable still. They ran a lot of tests....xray, ultrasound, blood work, urine, then at 10:30pm they did ct scan. Dr thought it might be an abscess in her colon, but turns out it was kidney stone!!!:eek2: Apparently kids with crohns are prone to this??? I had kidney stone back in 1995. Soooo painful! My poor baby!! She finally passed stone last night and hopefully she will come home today:hug: Originally we believed the Pentasa caused all this pain since it is a side effect. Now we have to figure out how to proceed from here. Guess I will be calling our GI Dr tomorrow to figure this all out. I hope everyone else had a better weekend than we did!

Grace's Mom:ghug:

Hope you can figure out a plan soon with the Gi .
Hope she feels better soon.

Oh my. Poor kiddo...I hear stones are TERRIBLY painful, and I *do* remember reading that they are prone to them.
It isn't Crohn's colitits, as that ONLY affects the colon and she has involvement throughout. Pentasa is approved for UC, but they are probably trying it because she has severe colonic disease...my question is what are they doing for the REST of the disease? Pred is great short term but she needs to be on something else. I am a huge fan of EN, but we did it to staunch weight loss and in tandem with Remicade. Fortunately it had the side effect of easing her symptoms, but I am not sure how her visual/microscopic involvement was at this time.
How old is Grace and how long has she been on Pred?
We declined the bone density scan...it is radiation, albeit a small dose, but her treatment plan wouldn't change based on the findings. I understand that they like to have a baseline to compare changes to, but I refused a lot of imaging in the beginning...as we encountered symptoms or considered new treatment options this has shifted.
Wishing you lots of luck...sorry for the awful weekend and hoping the decisions come as easily as possible.
Oh, and I forgot who here said it, but as you try treatment option after treatment option and your little one doesn't respond, those big scary biologics begin to look like baskets of kittens. I was in your boat two years ago...diet restriction, EN via NG, you name it. It worked with varied results but now she is on a big, scary, scantily researched drug (for Crohn's anyway) but I have my little girl back (and she has a life back). I feel your pain...(((HUGS)))) I hope that something less drastic works for you, but if it doesn't...remember, baskets of kittens :heart:

Just very thankful they figured it out. Kidney stones can be very painful. My mother suffers from kidney disease and reoccurent kidney stones she does lypthotripsy treatments yearly and is a frequent flyer afterwards to the ER for morphine when the stones get too big. Poor Kid. I hope she is feeling much better. I will be lurking and following. Prayers sent!

I know I am starting to sound like a broken record, but people with Crohn's disease are VERY commonly deficient in magnesium. And inadequate amounts of magnesium can lead to kidney stones.

Yeah that^^^^^
Easy fix Formula ( aka peptamen jr) gives just the right amount
Too little kidney stones --too much the runs ..
Hope the Gi has answers

:hug:...I hope shes feeling better.


@ David thanks for the info i'm learning something new everyday..:ysmile:

Awwwww poor dear. Poor Mommy! I don't have anything good to add but a big hug! Im sorry y'all had such a tough weekend.

I hope she's home (or close to it) as I type.

J.

Grace is home!! She is very tired and cranky. Poor kid!! David I will definitely check into the magnesium levels when I speak to her GI Dr tomorrow. Izzi's mom Grace is 10 and has been on Pred since 12/24/12. She is on 5ml now. Not sure when we will try to restart the Pentasa, but will figure it all out tomorrow hopefully

Good to hear you are home! Poor Grace, what an awful time for her...:hug:

Having ileal disease does increase your risk for kidney stones due to uric acid not being reabsorbed back into the bowel.

Good luck with the consult today!

Dusty. xxx

Wow, that must have been horrible to watch! So sorry she had to go through all that. Glad to hear you are home and she is on the mend.

Good that she is back home. We had a colonoscopy yesterday with no problems. Now, our diagnosis is sort of up in the air. The GI said it looked like it could be Crohns', UC, or "undetermined-aka. we don't know"). But I think something like granulomas or something are seen by a pathologist and were last time.

Regardless, while pain in kids is horrific to watch, at least you know is how I feel. My little one just hopes for some certainty. They want it to go away, but at least knowing what you are up against will be better than not knowing.

Regards to Grace and thanks for welcome. It was not good of me to interject on this thread, but after weeks of no sleep it was just coming out of me.

And John at least for now is responding to Apriso and prednsisone so he won't be on Imuran for now. I hope he can ween off prednisone and stay in control.

On a side note, does flu or norovirus cause inflammation? We had that in the house when John had his last flare. I see that this is widespread. I will look for that in search and say, Go Grace. Go John. Go kiddoes. Later.

And Amen to the 'learn something new' each time. Thank you to those who post and reassure here.

Well Grace will NOT take the Pentasa. Very frustrated Mommy and Daddy here!! Oraflo cup ordered and on the way so we will try it. She has swallowed some candies, but says it hurts. She sees CHOP psychologist on 2/4, but we cannot wait. Diarrhea and some abdominal pain is back since we decreased Pred from 5ml to 4ml on Tuesday. I did some research yesterday after speaking to GI nurse who said Asacol and Colazal could be options. Spoke to a compounding pharmacy to see if any could be made into a liquid. Colazal used to come in a powder packet that he said could be made into liquid solution, but when our GI called to give them rx order, he tried to order it and its not available anymore Anyone know how I could find out if its made in Canada or overseas anywhere?? If I can get a powder packet then we can do it. Desperate!!!

You can open the pentasa and place it in applesauce
Until she can swallow the pills no stress that way.
Asacol is pretty big and you can't open it up.
Plus that only works on the lower colon not TI area or above

I have had Crohns for about 17 years and am very familiar with all the treatments/surgeries and latest technology. A small word of advice, do not be afraid to seek other opinions from GI doctors regarding your daughters care. Although you may have a very good doctor, you owe it to your daughter to seek other opinions/options. For a long time, I only saw 1 doctor and looking back now I wish that I would have tried other options at a much earlier time. Steroids are 'not' good for anybody especially a 10 year old, there are better methods which can help her. My previous experience with steroids has given me severe osteoporosis. Do not let the doctors make you think that she needs steroids because it is not true.

We have opened the pentasa and she tried it that way. Says it hurts her throat and mouth and she feels like vomiting.... Don't know what else to do....

Sulfanizine ( sp?) old school ASA comes in powder but if she won't swallow applesauce you have problems.
Personally if she is starting to flare while lower pred not entirely sure the 5asa will do anything . Most Gi s compare it to giving aspirin for a brain tumor .
Not going to hurt but not really help either kwim..

Waiting for a call back from compounding pharmacy. Hoping they can take the powder from inside the capsules and make it into liquid for us or we can get the cherry syrup to mix on our own....Keeping my fingers crossed

Crushing the little beads defeats the purpose.
That is why the instructions stated you can put it in applesauce but not chew.
Sorry.
If she won't swallow the applesauce there are bigger issues at play then the tiny beads.
That is the methods used for infants( beads in applesauce).
I would still give it to her tears and all.
If she vomits within 15 minutes of taking it . Check with your doc most will let you give it again.
From what your posting the"pill" is not the issue at all.
Does she get to ride in the car without a seatbelt if she says its bothers her.
You have to treat this the same . Matter of fact.
It is what it is. She has to take the med even if it hurts and even if she vomits.
Once you make it clear it is non negotiable things may change.
Feeling sorry for her will not help.
A chronically ill child needs to be treated like a regular child otherwise things will get out hand quickly.
I know its hard DS cried for a week or more trying to take pentasa.
He did not like the beads one bit and could not swallow but...
It was not something we said ok you don't have to do it .
Hugs
It is never easy .

mlp, Devynn was the same way at first with Pentasa. She would cry and gag and tell me how disgusting it was. But it worked.. and we saw results very fast.
When the Pentasa stopped working we moved on to Mezavant. O.M.G... they are HUGE horse pills! Devynn had never swallowed a pill and has always had a strong gag reflex. We practiced by swallowing mini m&ms and then tic tacs for a few days, and then she tried the pills. It was a bit scary for her, but she did it! She was so proud. Now (10 mos later) she could swallow anything because they really don't make pills bigger than those suckers!

Short of physically restraining her which I won't do, we have told her she has to do this and why. Explained everything every which way I can to her. She literally freaks out. We are very strict with her and she knows there are rules for everything. She's a great kid and usually follows all the rules and does everything we ask of her. This is the first time she won't listen to us. I believe she truly is experiencing severe anxiety re: pill taking and the trauma of everything she's been through lately. If I hit a true dead end with the compounding pharmacy then we will have no choice.

Poor sweety How about opening it and putting it in ice cream? When my son was about 18 mos he was on pred for ashtma. They told me to put it in ice cream because the cold of the ice cream took the awful taste away. Maybe something with a bit of texture to it?
It's so hard. (((((hugs))))) you are doing a great job. Just keep reassuring her it will only make her feel better. I hope the pharmacy can turn it into liquid for you.

This is just one of those things she will get use to. Stay the coarse an be very persistent. I have always been very upfront with Rowan, if you don't take the medication by swallowing it we can go to the hospital. I know it is cruel to threaten her but she hate going to the hospital and hates the idea of getting it in an IV or even worse rectal meds. But my kid is a pro and knows the awful things that can happen at the hospital.

When this doesn't work I go to bribery. She loves to put quarters in her piggy bank.

Hope she gives in soon.

Grace's mommy, (((Hugs))))

I think they do get traumatized. My son was after his first visit to the hospital, he was given awful care. But it will get better. I have found these road blocks along the way and somethings I can find a reasonable alternative for them and others are truly non-negotionable. We went to bribery and it worked like a charm, we have also used the line QG suggested, "If you don't do this then X will happen". And in a way it is very true. There aren't a lot of meds out there and most don't work for everyone so chances are good things will just end up getting more invasive. Hold strong momma and keep at it! It is so hard and so unfair but you will get through it and she will be truly proud of herself. My son is pretty tough now because he has had to face a lot of fears and anxiety.

Good luck mom and let us know how it goes. :ghug:

I have nothing to add Grace's Mommy except to say my heart goes out to you...:hug:

It is so hard to see our children having to endure so much. They never cease amaze and inspire us and more often than not they roll with the punches but at times it all becomes too much for them and they resist and our hearts break. My children did not have to deal with all this at such a young age but I have met with the resistance and my only way to push through it was with perseverance (yes, rules and truths) and bribes. Some people don't believe in bribes and that is fine but in my case I just always felt...ya gotta do what ya gotta do to ensure the most important things happen. Heck, if my kids didn't have Crohn's I wouldn't need to use incentives but they do so that it how it is.

Good luck Mum, I hope you able to find a solution very soon. :heart:

Dusty. xxx

Update on Grace:

Well we started her on Colazal (special compounded liquid) 1tsp 3 times daily. She began Tuesday evening and so far so good. No side effects yet.....:biggrin: Next week will be very telling when we drop her prednisone from 4ml to 3ml:rosette1: She is having loose stools and a little bit of pain with her BM in the mornings. Hoping Colazal will help with that, but we'll see. My husband and I are trying to take one day at a time. Very hard! Next week she has labs drawn for Prometheus TPMT Enzyme test. Hopefully insurance will approve it. She also sees opthamologist on 1/31 per GI Dr's recommendation. February is also full of appts: dexascan, psychologist, nutrition, and follow up appt with GI. Whew I'm exhausted just thinking about it. I can't imagine how she must feel I am praying very hard for a cure for all of our children:ghug:

So glad the pain is a little less.:heart:
You definitely take the little things like that, with a bigger appreciation.:wink:

Hang in there!

Hugs to you both.

Hi Grace's Mommy. As you can see you are very welcome here. I just joined a few days ago, myself, and have been welcomed with open arms. We've been dealing with Crohn's since Aug 2007 when my daughter was 4, and she was diagnosed in December 2007.

First of all, don't be scared. I always put things in perspective and compare what we and my daughter go through to what others have to face. Yes, it's horrific seeing our children in pain. And yes, we wish none of them were sick. However, I remind myself all the time that there are parents out there facing far worse medical problems with their children that they children will likely succumb to, like leukemia or other cancers, etc, and I realize that as bad as it can be sometimes for my child and us, this is something she can live with and not die from. I don't mean to minimize IBD, trust me....we've been through hell like everyone else here. I'm just saying that we are lucky that we aren't planning funerals. Those are the families I grieve for.

Also, remember that, as many have already said above, no IBD patient is the same an another. The meds work for some and not for others, and in different combinations. Some eat food, some are on enteral nutrition only. While some kids are able to tolerate no food, my daughter has a mickey button in her stomach that she is fed through at night with an Infinity pump while she sleeps, but she would NEVER go without actually eating/tasting/chewing something even though she eats very little because it triggers pain. Keeping her from solid foods caused her to be very depressed, which caused me to experience anxiety attacks and to go on medication, so that plan was scrapped in days.

Anyway, find comfort from the people here, as I have already in only a few days of finding this forum. Welcome!

Thanks Marni's Mom! Everyone's story and journey is so different. I hope your daughter is improving. Recent update on Grace: Well Colazal not really cutting it. Her labs still show some inflammation even though she's on Pred too. So we are increasing Colazal to max dose for her weight and decreasing Pred a little tomorrow. This will surely induce a flare (imo) and then we must decide between 6MP, Methotrexate or Remicade. Any advice? How to decide? We also discussed liquid diet, but I'm not sure we can handle the stress of it....DR would like 70% liquid....we can only try though.

DS has been on all three over the past year.
6-mp took a while to see if it was working 3 months or more
But no real side effects.
It didn't stop DS inflammation from progressing and never gave him relief of his symptoms while we waited. It did cause his liver enzymes to rise very high twice.

Mtx has a shorter window to see if it works - 6 weeks
DS had fatigue and headaches with it .
He was only on it for eight weeks. His disease progressed more and he added vasculitis while on it so we switched yet again to remicade.
Remicade took about 6-8 weeks until we saw a massive improved .
No side effects except skin stuff so
For us it was a good drug.

Some kids do well on Mtx .
Ask your Gi if it was his/her child which med would they recommend.
Also realize your insurance may not cover remicade until you have fails at least 6-mp or Mtx.

Mtx is a shot given by you weekly
6-mp are pills she will have to swallow
Remicade is an iv given at the hospital every 8 weeks for about 4 hours in a child friendly infusion clinic ( video games movies food etc ...)

Good luck

MLP went over it pretty well. Although I would tell you don't discount the liquid diet also called enteral nutrition. A lot of kids on here have done very well on it. In Europe it is the first stage of treatment. It is rough in the beginning but once they get used to it most of the kids seem to take it in stride. The best thing about it is it is very safe and has few side effects. I would encourage you to go to the first page and look at the treatment forums. It really gives a lot of great advice. One of the moderators Dusty has recently started a treatment section here in this section as well but it is not as comprehensive yet. Good luck with whatever you decide and keep us posted!

Hello Grace's Mom,

We have no experience with 6-mp but Kasia took MTX for 3 years. Until October 2012 when the mTX wasn't enough for her, things were very good. At first she had injections with no or little side affects (fatigue the next day), then they told us we can switch to MTX pill and for some reason this is when the side effects kicked in (fatigue and really sick the next day). The docs recommended some meds to take with it to ease the nausea but didn't help. We switched back to injections added folic acid and when I remember I give her Dramamine (however I am convinced it works as a placebo for her - she forgot to take it once or twice and she was fine) and everything is great now. We had to add Remicade in October as her Crohns came back (no outside symptoms, just blood results and Colonoscopy results). So far (she is after 3 infusions) she is doing great. No side effects, eating well, growing and blood test are superb!

That's all I can add together with hugs and warm thoughts .

Ania

Hi Grace's Mommy. I am very sorry to hear your news. Sounds familiar = a lot like the news we got almost 7 years ago when our son Badger was 10.

I'm tired and impatient tonight (not with you!!) so my post may be a little abrupt and not filled with the usual caveats about how I am not a doctor and how great a mom you are (you are!) and stuff like that.

Instead I'll just tell you what I think, one mom to another. Do with it what you will.

Given that she is fighting you over the pills and you did not stand your ground on that issue (you need to work on that - it's a hard lesson to learn, I know BTDT big time) I would forget the methorexate completely. You have to give her a painful shot every week on the same day of the week about the same time of day that is fairly likely to make her feel lousy for several hours. Right. I don't think so. I had to give my son Humira shots every 2 weeks for almost 3 years. Giving your child a shot that hurts over and over - well let's just say it is hard to do - at least it was for me. So think that through carefully.

Your child is 10. Unless she has a swallowing disorder there is no reason for her not to swallow pills. Yes she's anxious but if you act anxious too and don't act like this is just normal everyday stuff (which it is for tens of thousands of kids her age) then she only gets more anxious. And things get worse plus she has no reason to work on it knowing you will give in. You are in this for the long run. You have 7 + years to go. The tone you set now will stick with you for a long time. I am sooo sympathetic - but you are the grownups and you have to give her an example to follow. Here's your chance. Remember to keep your eye on the prize OK?

If you need to take away privilieges like TV time, give her an early bed time, offer an incentive that is NOT purchased like you read to her before bed - then you do that. You should not give in and let her run the show. You will only regret it and she will suffer for it. How old will she have to be before it's OK to "force" her to take pills? 10 1/2? 11? 12? 13? You get the idea. My 10 year old was taking 9 Pentasa caps a day plus other pills with no problem. He didn't like it but he did it. We worked hard to help him understand what was happening to his body and what the meds were supposed to do to help him. If you haven't don that yet, maybe it would help. IDK. I just know that she should be taking pills not liquids when it comes to taking her meds and that's the standard you should be expecting, barring unusual circumstances you haven't shared.

Did I mention that you might also want to get a counselor yourself cause this process is gruelling for everyone?

If you and your husband are clear that you are not yet up to dealing with making her take pills (it's ok if you're not there yet. Lots us aren't or weren't for whatever reason, me included. I can guarantee that you will have lots of chances to practice over the next few months/years) it is much better for you to admit that to yourselves now and make your choices accordingly.

In that case, you can forget 6-MP which requires daily pills and must be taken at the same time each day, preferably on an empty stomach without milk, etc. AND requires frequent labs at the beginning. In the first 3 months she will will need labs drawn at least 8 times. And that's if everything's OK.

Since LDN seems to be off the table, that leaves you with remicade which requires 3 loading doses by IV (0, 2 and 6 weeks) and then infusions every 8 weeks. INfusions are done in a child-friendly atmosphere where the nurses do the dirty work (IV) and you get to fawn over your child while she plays video games, watches movies, whatever. Unlikely she will have any unpleasant side effects during or after and they usually give them benadryl before hand which helps them stay calm.

EEN is absolutely what you should be doing and you should be doing it now not waiting to see what happens when you stop the pred. You can practice your compassionate, detached, non-power playing parent skills with that.

Pred does not heal anything. It only suppresses the inflammation. It saves her gut from worse damage and maybe saves her life depending on how bad things are. But EEN promotes/causes actual healing of the mucosa. Doing both together only makes sense.

And if you're going to do Remicade - or any of these meds - the sooner you decide and start the better because they all take a while before you know if they are working. 6-MP takes the longest (4 months) followed by MTX and Remicade typically gets a response by the 3rd infusion at 6 weeks.

Remember too that nothing is set in stone. Just because you start a med doesn't mean you have to keep her on it. Theree will be consequences of course - your doctor can explain that part - but the world will not end if you put her on Remicade for a year, she gets into a perfect remission, full mucosal healing and you say - OK we' want to take a break now or we want to step down to MTX or 6-MP or LDN.

goodnight

Hugs to you and your girl. This journey is so different for every one. I know from your writings that your girl is your life and you'll do what you have to do to help her. She'll be a better person because she has a mom and family that cares.

Farmwife:rosette2:

Hi everyone!
An update on Grace: Remicade infusion scheduled for this Tuesday 2/5. She is really flaring and after much discussion we decided to go ahead with remicade and not 6mp or methotrexate. She sees the CHOP IBD Team psychologist tomorrow, so hopefully that will help with her anxiety and anger.

Any tips for the remicade infusion?? What to bring? What to expect?? Just want to make her as comfortable as possible and take this one step at a time. Thanks for your support!:hug:

Ds has his infusion Thursday .
Our infusion clinic has a tv - movies as well as video games .
They give Zyrtec or Benadryl + Tylenol to start . Typically pills but they may have liquid.
Then after height weight bp check - they start the iv with remicade on the pump.
Our clinic has a rocker for parents and recliner with tray and multiple pillows for patients .
They want kids to eat during the infusion.
We bring all his food since he has food allergies .
I have seen others get food sent in from the cafeteria.
Lots to drink as well.
Short sleeve shirts work best since Iv goes into elbow area.
Ask about buzzybee our clinic now has them ( thanks to DS - we brought his and they loved it )
It takes about 4 hours from start to finish
2.5 hours of actual infusion time .
Half hour before and half hour watch after wards
We bring a portable DVD player or iPod/ipad so DS can watch what he wants
Handheld games are harder since moving your hand -arm is hard.
First and second infusion is hardest.
We have had a few infusions since then and things are good.
If she gets cold maybe a special blanket or robe with a slit cut in the sleeves with Velcro so the no cuff and iv can fit.
Extra clothes for you and her in case she vomits or has an accident .
Good luck

Oh and she will be really tired after wards and may have a low fever.

Fingers crossed things will go well and she will get a fast response.

All the best

No experience with Remicade - just wanted to wish her luck, hope all goes smoothly and it works quickly for her!!

I hope it's her miracle! Good luck tomorrow!

We used to take all kinds of things to do, but they give Benedryl in case of allergic reaction which made her sleepy. So, she slept alot of the time. If not asleep, she can do whatever activities they offer for kids at your infusion location. She should be able to walk around with the IV pole.

Good luck!
I hope it works out. We had no luck with Remicade. We're on Humira now.

Thank for all the well wishes and advice! Grace did really well today except for the IV freakout we had at the beginning, but she got past it:ybiggrin: She actually said afterwards it didn't hurt as much as she thought it would. :rosette1: Nurses, Child Life staff and psychologist were there and so helpful. The infusion itself took about 2 hours and she did great! No major side effects except fatigue. What a relief!!! We were so nervous about the side effects. Her next infusion is in 2 weeks 2/19 and then we see gi Dr on 2/21. Hopefully we can start to wean down on some of the meds after that visit, but trying not to get ahead of ourselves

Glad it went well.
DS has his on Thursday .
Hope things improve
But remember sometimes it takes up to three infusions or more to see improvement.