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Crohn's Disease Forum » Parents of Kids with IBD » My daughter just diagnosed.I don't want to give her steriod. Help please


03-31-2013, 05:16 AM   #1
Tamanna
 
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My daughter just diagnosed.I don't want to give her steriod. Help please

It has been three weeks my 14 years old is diagnosed with Crohn. I don't want prednisone or any steriod for her. I want something which can stop her bleeding without any side affect please help me. She has no pain but she has bleeding 6 o 7 times a day with diearia ..Any help?
03-31-2013, 05:27 AM   #2
DustyKat
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Hi magikarp and

I am so sorry to hear about your daughter...

EEN (Exclusive Enteral Nutrition, click on the underlined words for more info) is often a viable alternative to steroids. It is essentially a liquid diet and it provides both bowel rest to allow healing whilst providing all the nutrition that required. There are many parent's here that have experience with the diet.

I know steroids can be pretty nasty drugs but they do have a role to play in this disease and have saved many a bowel along the way. Just never say never when it comes to IBD.

You have found a wonderful place for info and support so please stick around.

Where is your daughters Crohn's located? Where are you located? I understand if you wish to keep this private but even if you can tell us what country it can very helpful when providing information.

Good luck and welcome aboard!

Dusty. xxx

PS. I have asked that this thread be moved to the parent's forum.
03-31-2013, 06:25 AM   #3
Tamanna
 
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Thank you so much for your help. We live in Canada. My daughter's Crohn is located in lower intestine. She has milk alergy. Do you know any liquid diet without any milk product? Thanks again
03-31-2013, 07:53 AM   #4
nitty
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Although steroids can cause a lot of problems if taken on a long-term basis, they can be extremely effective drugs in controlling symptoms quickly.

I can understand your reluctance for your daughter to have them, but it may be better to just put her on a short intensive course of prednisolone to stamp down the main inflammation, allow her to recover her strength, and give you both time to research and consider her longer term treatment plan.

Your daughter's symptoms sound very much like mine were, and my colon is the affected area, too. I struggled on miserably with the bleeding and urgency, and finally accepted the steroids - I wished I had done it earlier. I was only on them for about 8 weeks, tapering the dose down gradually, and now I am on a different therapy, but they very quickly brought my symptoms back under control (in just a few days).

Think of it this way - the damage that the uncontrolled disease is currently doing to your daughter's body (and her emotional health) could be much worse than any side-effects of a short course of steroids.

How involved is your daughter herself in her treatment? At 14 years old it is not unreasonable to give her an unbiased view of the options so that she can make her own decision. You may not necessarily like what she chooses to do, but as long as it is medically safe she may benefit from feeling she has some control over what happens to her.
03-31-2013, 08:11 AM   #5
Tamanna
 
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She does not have any pain.She never complains about pain. If she eats she needs to go to the washroom but not all the time. Certain foods she can not tolerate. Since she does not have any pain but blood in her stool, I am looking for something equal to prednisone. I found Tolerex. I will ask doctor about Tolerex in our next appointment. I think the doctor suggested Prednisone because I told him we don't have insurance.

Thank for your support
03-31-2013, 08:27 AM   #6
Tamanna
 
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My daughter believes she does not have any Crohn except blood in her stool. But according to the colonoscopy result, she has Crohn. She relays on me to find the correct treatment and that's a a burdon on my shouldler. Last three weeks, I have been searching for the right treatment everyday atleast 6/7 hours, gathering all the information to meet the doctor for the second opinion. I start to have pain in my tummy, going washroom frequently .....

I will ask for :
Biofeedback
Probiotic
Tolerex
And Suppliments

Anything else??

Thank you for your support
03-31-2013, 08:31 AM   #7
my little penguin
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Tesscorm may be able to help I will tag her.
Tolerex is elemental so most can not drink it orally and need an ng tube plus pump etc to get the formula in.
This can be very expensive - at least in the us since most insurance plans do not cover it.
EEN is also harder for teenagers since it means absolutely no food.
That being said my son did EEN .
In addition to either pred or EEN your child will need a maintence med
Please ask about them now.
Just because she does not have active pain does not mean there is t damage being done or her disease is not severe.
Most children dx with cd before the age of 20 have a severe disease
Course and it is important to get that under control as soon as possible.
Even if it means scary drugs.
Leaving the damage to continue makes it harder to control.
Good luck
And keep asking questions
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03-31-2013, 08:43 AM   #8
xmdmom
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You wrote
I think the doctor suggested Prednisone because I told him we don't have insurance.
While this may be the case, many doctors do start with prednisone in teenagers and adults.

If your daughter is going to try EEN, she will need to drink a lot of it, and often this is difficult because of the monotony and taste, or she will need a ng tube. From what I understand, EEN can be effective in producing a remission but to maintain the remission, one needs to continue EEN or add drugs. If you haven't seen this http://www.crohnsforum.com/showthread.php?t=23607, it may be useful.

I definitely hear you re "She relays on me to find the correct treatment and that's a a burdon on my shouldler." ((((HUGS))))

LDN is an experimental therapy that is thought to be safe. You can find more info here
http://www.crohnsforum.com/wiki/Low-Dose-Naltrexone

Best wishes!
03-31-2013, 09:08 AM   #9
Mehita
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Welcome to the forum, Magikarp. I'm sorry Crohns has brought you here, but this is a great place for advice and support.

You need to get her Crohns under control quickly before it causes too much damage. While I completely understand your reservations about prednisone, it's a necessary evil for most people with Crohns and she could be in a much better state within days of starting pred. The alternative is EEN, but that seems to be hit or miss with teens. Either they handle inserting the nose tube well and manage the feedings or they completely hate it and refuse. If she falls into the second group, then pred is really your only option. We've never done EEN, but I'm sure there are side effects with that as well? Maybe more emotional/social vs physical?

There are good medications out there that can help control the Crohns, but it will be trial and error at first until you find the one that works best for her. Coming from a mom who didn't push hard enough for stronger meds... my son's Crohns simmered under the surface until he got to the point of needing surgery and had 10" of his small intestine removed. Had we managed it better earlier and stayed on top of the inflammation, we probably could have postponed surgery many years. On the outside he had little to no symptoms, but on the inside he was a mess.

And take care of yourself, mom! Whenever my son was feeling miserable it seemed like I was getting Crohns too. Nausea, stomach aches, headaches... it is just stress and you need to be sure you take care of yourself. Limit yourself to only x hours researching, be sure to find an outlet to vent (this forum!!!), and let yourself cry.

Best of luck to you!
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- Small bowel resection, Jan 2013
03-31-2013, 09:35 AM   #10
Kev
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Hi magikarp

I understand the 'fear' that the meds given to calm Crohns creates. I went on increasing doses of pred for almost a year.. Every time I weaned off, the Crohns came back, faster and stronger. And repeating the pred wouldn't work as well in subsequent attempts, so I had to go with higher and higher doses. Now I have diabetes, and it likely came from the pred.

I don't know anything about the EEN option, but it may be worth exploring. That is up to you.

I stopped my disease with LDN. I have maintained my life with it for over 5 years now. And the potential side effects are minimal. There is plenty of info on it on this site. And it can be combined with <10mg of pred. So, if you wanted to start off with pred to get the disease under control, then add in LDN when your daughter has tapered down to less than 10mg of pred, I see no reason why it shouldn't work for your daughter too.
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03-31-2013, 10:47 AM   #11
Jmrogers4
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She relays on me to find the correct treatment and that's a a burdon on my shouldler.
This may change, she is a teenager and would probably just as soon ignore it and pretend she does not have Crohn's. It took my son a year before he would even talk about it, but just keep presenting her with her options

We have never done the full EEN route, we are PEN (partial entrenal nutrition) My son is 13 and drinks 8 cans a day.

We did the pred route when he was first diagnosed along with Azathioprine (Imuran) with the idea that by the time we weaned off the pred the Azathioprine would be working. Many of the maintenance medicines require some time to work so please do ask about them.

You have received some great advice. It is a lot to take in and a lot of decisions to be made, this is a great place not only for research but for support. Welcome and please keep us updated on your daughter's progress
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-31-2013, 11:17 AM   #12
CarolinAlaska
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In addition to what others have mentioned, I might also add budesonide - it works almost as well as prednisone and has less side effects, it works better in the lower intestinal tract. I don't know how much it costs. I honestly think that EEN is going to be a very expensive route for you without insurance. It costs (here in US) us thousands of dollars (which fortunately the insurance is picking up) plus the cost of insertion, etc.
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
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03-31-2013, 11:32 AM   #13
xmdmom
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Budesonide =ENTOCORT EC is a glucocorticosteroid indicated for:
• Treatment of mild to moderate active Crohn’s disease involving the ileum and/or the ascending colon. (1.1)
• Maintenance of clinical remission of mild to moderate Crohn’s disease involving the ileum and/or the ascending colon for up to 3 months. (1.2)

so if the Crohn's is in your daughter's lower colon it might not be appropriate. You can certainly ask her doctor.
03-31-2013, 12:13 PM   #14
nitty
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so if the Crohn's is in your daughter's lower colon it might not be appropriate. You can certainly ask her doctor.
Ditto xmdmom. I have patches in ascending, transverse and descending colon, and I was told that Budesonide would not be effective. Had to be prednisolone. It's worth asking about, but I'm not sure that it's the best option.

Unfortunately, most drugs which act 'locally' on the bowel are no longer effective enough by the time they reach the large intestine, and so a systemic approach is needed.

Having said that, before they did a scope and found the patches further up, I used mesalazine suppositories for the immediate problems of urgency and some of the bleeding and they worked really well. If any of your daughter's inflammation is near the rectum she may well get relief this way, with less drug absorption issues - that is, if she will entertain the idea of having to administer things rectally - it's not an easily acquired habit, especially at 14!!

Last edited by nitty; 03-31-2013 at 12:21 PM. Reason: Not finished post
03-31-2013, 12:27 PM   #15
my little penguin
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Same here - DS had issues from stomach to anus so not an option for us
04-01-2013, 08:07 AM   #16
Tesscorm
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Hi Magikarp,

I'm so sorry you've had to find your way here due to your daughter's illness. It's a lot to take in at the beginning but, this forum and it's members are a wonderful resources!! Both for information and for support!

My son was 16 when diagnosed and he has used Tolerex to induce remission and maintenance. He did six weeks of exclusive EN (EEN) using an NG tube. He would insert the tube nightly, ingest his formula overnight and remove the tube in the morning. While everyone is different, Stephen had very little problem learning how to insert the tube, and within a week, was doing it in seconds. The six weeks without food is quite a challenge and, as the formula is ingested overnight, does allow for the extra challenge of battling hunger (especially towards dinner time).

Some options are leaving the tube in, eliminating the need to insert nightly. This also gives the option of ingesting some formula in the daytime to minimize hunger. You can also try a formula that is 'drinkable' such as modulen, peptamin, etc. so that she can drink some shakes during the day and the balance could still be ingested overnight by tube (if the amount to drink is too much).

This treatment worked very well for my son. His crohns, at diagnosis, was located in his terminal ileum with additional patches in his duodenum and colon. His symptoms disappeared almost immediately (although he also have one week of IV flagyl). Once the six weeks ended (May-July 2011), his maintenance EN has been 1/2 dose, 5 nights per week. His only medication, until recently, was Nexium.

However, while the EN controlled his crohns and eliminated inflammation from all areas except TI, the continued inflammation in his TI was a problem. Once we transferred to an adult GI, the new GI was adamant that EN was not enough and Stephen recently began remicade.

So, please keep in mind that while I think EEN is a GREAT option as it provides all the necessary nutrition, has healing properties and as high a success rate at inducing remission as steroids, it is not a permanent solution. Supplemental/maintenance EN is also a great choice - whether it is the healing properties or simply that it provides the nutrition your body needs, it is a worthwhile option to explore, BUT, in most cases, the supplemental EN should be used with other maintenance medication.

Also, our insurance did not cover the formula and it is quite expensive, however, a local regional agency has covered the cost of formula! Our hospital made the initial arrangements with this local agency.

Please feel free to ask any other questions.

Good luck!!!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-01-2013, 10:40 AM   #17
Farmwife
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Hi and welcome. Sorry you had to make your way here.

My 4 yr old is on EEN via a n-g tube (goes through the nose and down to the stomach).
I also NEVER wanted pred and I mean NEVER! But she grew worse even on EEN. I loved the fact that EEN was at lease suppling all her nutritional needs but she was still in a lot of pain. So onto pred she went. WOW, what a change. We still struggled for a few weeks but now she's the happiest she ever been. It was work it to us. All these choice are hard but once she's in full remission, it's worth it. HUGS
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I'm mom to............... Little Farm Girl 8 yr old
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04-01-2013, 03:45 PM   #18
Tamanna
 
Join Date: Mar 2013
I am overwhelming by having all the information. By the will of God , all of you are guiding me to choose the right medication for my daughter. I am greatful to all of you.

April 3rd, we are hoping to see the doctor. After we come back to the doctor, I will let you know what medicine my daughter is going to take.

Thanks everybody from the bottom of my heart. I am greatful to the Almighy God to introduce me such a a wonderful support groups . May God bless all of you and your families with sound minds and good healths . Ameen .
04-01-2013, 09:02 PM   #19
sickofcrohns
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Thank you so much for your help. We live in Canada. My daughter's Crohn is located in lower intestine. She has milk alergy. Do you know any liquid diet without any milk product? Thanks again
Are you in the GTA? Sick Kids has tons of resources & they actually have a specialty food shop right in the hospital that can give you a lot of help about diet. You can call or email them and get specific advice about supplements/meal replacements that would be suitable for your daughter's needs. And they ship within Canada as well!

I don't think that the Specialty Food Shop carries it, but this is another brand you might be able to use for protein supplementation, depending on whether she tolerates soy and the other ingredients: Vega. The products are 100% plant-based (no dairy).

As for me, I have a lot of unusual food allergies so I couldn't use any of the supplements in the food shop, so when I have flares, I generally survive on peanut butter, eggs, fish, tea, saltine crackers, apple sauce, cooked carrots, and coconut milk.

All that said, diet is just one part of dealing with Crohn's. As a lot of the other posters pointed out, the damage done by untreated Crohn's can be worse than the side effects of steroids. Steroids are not to be taken lightly, but they do work well for this disease, especially in the short term. I hope you will not rule them out entirely if they are what your daughter's specialists recommend.

I hope her appointment goes well and that you will have a helpful and caring GI to guide you through this. Best wishes to your entire family!
04-02-2013, 08:02 AM   #20
QueenGothel
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So sorry about the diagnosis. IBD can really be a shock to everyone involved and then there is the meds and the side effects. Getting the inflammation under control as fast as possible is what needs to be done. The reasoning being... inflammation = scar tissue. Scar tissue = narrowing. Narrowing = surgery. So the point is to avoid surgery. What about topical steroids they come in enemas, suppositories, foams. Beyond that a maintenance med is always a nessesity. I always wished I would have tried LDN with my DD but the science was not there at the time like it is now. But hindsight gets me everytime. A nutritional supplement has always been so very helpful during the rough times. My DD had UC not Crohns and I am under the impression EEN really doesn't help much with large bowel disease, but helps greatly with people with small bowel disease.
04-05-2013, 03:55 PM   #21
Tamanna
 
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Hello everybody, we went to see the doctor April 3rd. After having a long discussion, the doctor finally prescribed Pentasa. My daughter starts to take Pentasa 3 Tablets in the morning and 2 tablets in the evening including other suppliments. Her bleeding stopped. She will take to take homeopathy "Johneinum" besides Pentasa. Our target is to reduce Pentasa slowly and continue homeopathy. I believe Crohn is curable

Thanks Everybody to make a right decision
04-05-2013, 04:34 PM   #22
my little penguin
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IS your doc going to still monitor her blood work and imaging studies while your daughter are off meds??

I only say this since sometimes the disease is silently causing damage.

I hope it truly works for her.
04-05-2013, 05:33 PM   #23
Tamanna
 
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Yes, always the Allopathic doctor will monitor her as he is doing now. Our target is having Homeopathic treatment besides Allopathic treatment. Allopathic Doctor says,"there is no cure." I don't believe it.

I believe God sends every disease with cure. If modern science is not able to discover cure for Crohn disease, then we must look it somewhere else.

Homeopathic is closed to natural treatment without any side affects. It works slowly but it treats the root of the disease. It does not suppress the disease rather it heals the disease in such a way that the patient gets other health benefits.

I had polyp and a bad tumor in my right leg. My Allopathic doctors wanted to do surgery in both cases. I denied and took Homeopathic treatment for a year. My polyp is not there. And the tumor got out like rotten meat from my leg. In both cases I was under observation of Allopathic doctors too but I did not follow their treatments.
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