Hi everyone. My daughter is five years old. She has always been healthy and has been on a very healthy diet of organic foods. One day about four and a half weeks ago she started having diarrea and a fever. I thought she just had a virus as the stomach flue had been going around so we took her to the pediatrician and she said the same. Give her lots of fluids etc. So we did thinking it was the flu. About a week later she had not gotten any better, in fact,she now had very painful cramps with the diarrea and screamed and cryed right before, during,and a little after every bowl movement so back to the doctor we went. Again the same answer (flu). A week later no improvement .i had had enough and took her to the er at the hospital. They hooked her up to the iv (i feel for everyone who has to go through anything like this with there child) they took blood tests,ultra sound,stool samples. The results showed elevated white blood cells .the doctor advised she shouldnt be at home with the results he reviewed so day two at the hospital we were transfered to a different hospital better equipped to deal with pediatric care. When at the hospital my daughter was seen by a pediatrician and a gi specialist ( i am very greatful for them) the specialist recommended starting her on flagyl (antibiotic ) thinking it may be c-diff (bacterial infection) .two days on flagyl with no improvement.the specialist waisted no time .she ordered her immediatly for a colonoscopy. After it was done (about 20 minutes) the specialist got us from the waiting room and took us back to our daughter so we could be there when she woke up from the anesthesia. She shared with us the pictures she had taken during the procedure. Tears started streaming from my eyes as she explained and gave us pictures. There were ulcers and puss all over her colon. Alot had been eaten away. It was very hard to take. She also took a biopsy wich we are currently waiting for the results. She put her on 30 mg. Of methylprednisolone (steroid) along with prevacid (antacid),vsl (probiotic,and kept with the flagyl antibiotic. We spent 10 days in the hospital total. She has been at home 3 days now.the diarrea has gotten less frequent and is starting to have a little form to it. Also there was blood and mucus in her stool and that has cleared up also. diagnosis awaiting our appointment for the diagnosis.i have been feeding her turkey,jello,white bread,things like that. No fruits vegetables or whole grains. It seems like everything healthy she cant have. This is all so hard to deal with as i dont know exactly what to do. It seems like a process of elimination as far as food goes is in order. I will post anything i find that brings her comfort and helps in any way. Im glad im not alone in this and i feel for everyone of you dealing with this.
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5 year old daughter with possible crohns /ulcerative colitis
- Thread starter joshk
- Start date
- Location
- Michigan, USA
So sorry to hear you and your family is going through this. It is very hard having a kiddo so sick. I crossed this same bridge in October of 2011 with my DD at the time she was 3. A lot of what you are going through I have done. I have done a 10 day hospitalization and a 32 day stay after that and many blood transfusions and heavy drugs later.
My best advice would be to stay positive and try not to be stressed out. Easier said than done... Right. Another big thing was not talking about my daughters disease in front of her. It really stressed her out. I would talk to the doctors in the hallway or at home go into another room to discuss her condition. My DD is a very good listener and hears everything and if you have doubts so will she.
Everyone else will give you even better advice... About drugs, diet, and triggers. I found it hard to determine diet without a food journal when dealing with a child so young. The only things we avoid completely that she loves is fried foods, spicy foods and citrus fruits... Very acidic. My DD can usually handle peeled apples, grapes, and honeydew melon. But again i am not the person to give diet tips beyond I wounldnt go diet crazy from one who did it. I had my DD on a pH diet convinced I could cure her. I just drove her mad and myself too, trying to feed her a bunch of stuff she didn't like. Stick with what works for you and cross every bridge as you get to it... You goal now is no steroids and remission, however you can get there. Have trust in your GI and if you lose trust get a new one.
If you ever need to vent we are all here for you.
Hugs
My best advice would be to stay positive and try not to be stressed out. Easier said than done... Right. Another big thing was not talking about my daughters disease in front of her. It really stressed her out. I would talk to the doctors in the hallway or at home go into another room to discuss her condition. My DD is a very good listener and hears everything and if you have doubts so will she.
Everyone else will give you even better advice... About drugs, diet, and triggers. I found it hard to determine diet without a food journal when dealing with a child so young. The only things we avoid completely that she loves is fried foods, spicy foods and citrus fruits... Very acidic. My DD can usually handle peeled apples, grapes, and honeydew melon. But again i am not the person to give diet tips beyond I wounldnt go diet crazy from one who did it. I had my DD on a pH diet convinced I could cure her. I just drove her mad and myself too, trying to feed her a bunch of stuff she didn't like. Stick with what works for you and cross every bridge as you get to it... You goal now is no steroids and remission, however you can get there. Have trust in your GI and if you lose trust get a new one.
If you ever need to vent we are all here for you.
Hugs
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joshk welcome aboard! I wish you the best in figuring out what is wrong with your little girl and if it is inflammatory bowel disease that you can get it under control.
I want to point you to another new member jworton who has three children two who are 3 and 5 years old each with Crohn's Disease. It might help to communicate with someone else who is in a similar position of babies with Crohn's.
I want to point you to another new member jworton who has three children two who are 3 and 5 years old each with Crohn's Disease. It might help to communicate with someone else who is in a similar position of babies with Crohn's.
DustyKat
Super Moderator
Hi joshk and :welcome:
I'm glad you have found your way here, it truly is a wonderful place for support and information. I'm so sorry to hear that your little one has been going through all this and I hope and pray that she able to find relief very soon, it certainly sounds like she is heading in the right direction.
I would like to point you in the direction of 3 forums in particular...The Parent's Forum has loads of info and you will find other parents there that know exactly what you are going through with either having a young child with IBD and/or a child with UC. Then there is the Ulcerative Colitis Forum, obviously loads of kindred spirits there and then the Diet Forum. The diet forum is a wealth of information and experience, unfortunately like many things with disease everyone responds differently and diet is no different but I personally believe it does have a role a to play, not in it's cause but in what it can do and provide post diagnosis. Many of the foods that you have her on, even though they go against the grain, are settling for the bowel.
We also have an Enteral Nutrition Forum you may like to have a browse through although EN is not considered very successful for UC but again it does vary from person to person.
Have a good look around and if you have any questions please don't hesitate to ask. Read up all you can and keep questioning your doctors, it keeps them on their toes! :lol:
Good luck! I look forward to seeing you around.
Dusty. xxx
I'm glad you have found your way here, it truly is a wonderful place for support and information. I'm so sorry to hear that your little one has been going through all this and I hope and pray that she able to find relief very soon, it certainly sounds like she is heading in the right direction.
I would like to point you in the direction of 3 forums in particular...The Parent's Forum has loads of info and you will find other parents there that know exactly what you are going through with either having a young child with IBD and/or a child with UC. Then there is the Ulcerative Colitis Forum, obviously loads of kindred spirits there and then the Diet Forum. The diet forum is a wealth of information and experience, unfortunately like many things with disease everyone responds differently and diet is no different but I personally believe it does have a role a to play, not in it's cause but in what it can do and provide post diagnosis. Many of the foods that you have her on, even though they go against the grain, are settling for the bowel.
We also have an Enteral Nutrition Forum you may like to have a browse through although EN is not considered very successful for UC but again it does vary from person to person.
Have a good look around and if you have any questions please don't hesitate to ask. Read up all you can and keep questioning your doctors, it keeps them on their toes! :lol:
Good luck! I look forward to seeing you around.
Dusty. xxx
Angrybird
Moderator
- Location
- Hertfordshire
Hello Josh and welcome to the forum. I am sorry to hear your little girl has been so poorly, I do hope she starts to feel better soon :hug: I do not have anything further to add as the forums I would say to check have already been mentioned so please do have a good nosy around, there is a lot of advice and support here.
xxx
xxx
thx everyone for your support
Thank you guys for your blessings and support im so grateful. We got the results and they diagnosed it ulcerative colitus. My daughter has been unable to find much relief from the terrible stomach pain she has had. Today her mom sent her to school and i feel like it might be a little much right now for her until this flare up is over. I have a hard time with this as i do not have this condition.i can only imagine how painful it must be. Does anyone know when the right time to send her back to school would be? I dont know how long this will last. Its so hard watching my little one hurt so bad? Any advice?
Thank you guys for your blessings and support im so grateful. We got the results and they diagnosed it ulcerative colitus. My daughter has been unable to find much relief from the terrible stomach pain she has had. Today her mom sent her to school and i feel like it might be a little much right now for her until this flare up is over. I have a hard time with this as i do not have this condition.i can only imagine how painful it must be. Does anyone know when the right time to send her back to school would be? I dont know how long this will last. Its so hard watching my little one hurt so bad? Any advice?
Hi Josh,
Our stories are very similar, as my five-year old daughter was just diagnosed with Crohn's in January. I have started blogging about out Crohn's journey and you are welcome to read all about it here.
My husband and I are both chiropractors/acupuncturists, so we are trying a more integrated approach to our daughter's health. We've made a lot of diet changes that seem to be helping. I researched several of the recommended Crohn's diets, and decided to take a gluten-free, dairy-free approach for our family. We are also supplementing with fish oil, digestive enzymes, probiotics, and a good multi-vitamin. I'll be sharing more of the details on my blog soon.
We have also been doing laser acupuncture treatments and gentle chiropractic adjustments. She had some back pain during her flare, so this seems to be helping.
In the hospital, she was put on Cipro, Flagyl, and Prednisone. She took the antibiotics for 2 weeks and just finished her last dose of Prednisone this past Friday. She starting having formed stools about 2 weeks after starting on the medications and we have not had any loose stools or diarrhea since. In the past six weeks, we have only seen minimal blood and/or mucus in 3 bowel movements. She is going once per day and does not seem to have any pain or discomfort.
As far as school goes, we will not be sending Bella back to school until the Fall. I think preschool may have been one of the stresses in her young life, so we will send her to Kindergarten or home school.......time will tell. If she is not doing well, we may not have much of a choice.
Feel free to message me if you have any questions. I'm not an expert by any means, but I'm definitely willing to help or offer suggestions. Every person is unique and I am very aware that what we are currently doing may not work for everyone with Crohn's disease......it may not even work for us, but we have to try to help our daughter with the tools & knowledge that we possess.
Our stories are very similar, as my five-year old daughter was just diagnosed with Crohn's in January. I have started blogging about out Crohn's journey and you are welcome to read all about it here.
My husband and I are both chiropractors/acupuncturists, so we are trying a more integrated approach to our daughter's health. We've made a lot of diet changes that seem to be helping. I researched several of the recommended Crohn's diets, and decided to take a gluten-free, dairy-free approach for our family. We are also supplementing with fish oil, digestive enzymes, probiotics, and a good multi-vitamin. I'll be sharing more of the details on my blog soon.
We have also been doing laser acupuncture treatments and gentle chiropractic adjustments. She had some back pain during her flare, so this seems to be helping.
In the hospital, she was put on Cipro, Flagyl, and Prednisone. She took the antibiotics for 2 weeks and just finished her last dose of Prednisone this past Friday. She starting having formed stools about 2 weeks after starting on the medications and we have not had any loose stools or diarrhea since. In the past six weeks, we have only seen minimal blood and/or mucus in 3 bowel movements. She is going once per day and does not seem to have any pain or discomfort.
As far as school goes, we will not be sending Bella back to school until the Fall. I think preschool may have been one of the stresses in her young life, so we will send her to Kindergarten or home school.......time will tell. If she is not doing well, we may not have much of a choice.
Feel free to message me if you have any questions. I'm not an expert by any means, but I'm definitely willing to help or offer suggestions. Every person is unique and I am very aware that what we are currently doing may not work for everyone with Crohn's disease......it may not even work for us, but we have to try to help our daughter with the tools & knowledge that we possess.
Josh and MStout,
I'm sorry to hear about both your daughters! It was devastating hearing my son's diagnosis last May, so I can certainly sympathize with your heartbreak. It must be especially hard as yours are so young (my son is 17).
I just wanted to mention a couple of treatments that are less risky than the conventional medications. My son is on Enteral Nutrition. There is no risk nor side effects and, for children with Crohns, has a comparable success rate as steroids. (Josh - I'm not sure if it is as effective for UC.) It is commonly used in Europe but less so in Canada or the US. I think this may be due to compliancy as the initial treatment is a period of time (6 weeks for my son) of no food, EN formula only. Not easy to do. But, since then, he has added back all foods, maintenance is still EN but at half dose and his only medication is Nexium (antacid). Another difficulty is that my son ingests the formula overnight through an NG tube - he found it easy to learn to do but, with young ones, this may be a bit more difficult (tube does not need to be removed daily, can be kept in if preferred). However, there are also drinkable formulas available. But, the upsides, as I mentioned, are no risk, no side effects, quick remission (within days his symptoms were mainly gone), is anti-inflammatory, provides all the necessary nutrition and, I believe, can be used in combination with other treatments. Please have a look through the Enteral Nutrition subforum under Treatments - lots of info there.
Also, look through the Low Dose Naltrexone (LDN) subforum (also under Treatments) - this is another very low risk medication, however, has been approved for treatment of other illnesses, not auto-immune/Crohns/UC, so is not often suggested by GIs. There have been a number of members here who have had success with LDN. When/if EN fails to keep my son in remission, this would be the medication I would like my son to try before others.
And, as was mentioned before, have a look through the Parents of Kids w/IBD subforum - you'll find many helpful, supportive parents there as well.
Good luck to both your little girls!
I'm sorry to hear about both your daughters! It was devastating hearing my son's diagnosis last May, so I can certainly sympathize with your heartbreak. It must be especially hard as yours are so young (my son is 17).
I just wanted to mention a couple of treatments that are less risky than the conventional medications. My son is on Enteral Nutrition. There is no risk nor side effects and, for children with Crohns, has a comparable success rate as steroids. (Josh - I'm not sure if it is as effective for UC.) It is commonly used in Europe but less so in Canada or the US. I think this may be due to compliancy as the initial treatment is a period of time (6 weeks for my son) of no food, EN formula only. Not easy to do.
But, since then, he has added back all foods, maintenance is still EN but at half dose and his only medication is Nexium (antacid). Another difficulty is that my son ingests the formula overnight through an NG tube - he found it easy to learn to do but, with young ones, this may be a bit more difficult (tube does not need to be removed daily, can be kept in if preferred). However, there are also drinkable formulas available. But, the upsides, as I mentioned, are no risk, no side effects, quick remission (within days his symptoms were mainly gone), is anti-inflammatory, provides all the necessary nutrition and, I believe, can be used in combination with other treatments. Please have a look through the Enteral Nutrition subforum under Treatments - lots of info there.Also, look through the Low Dose Naltrexone (LDN) subforum (also under Treatments) - this is another very low risk medication, however, has been approved for treatment of other illnesses, not auto-immune/Crohns/UC, so is not often suggested by GIs. There have been a number of members here who have had success with LDN. When/if EN fails to keep my son in remission, this would be the medication I would like my son to try before others.
And, as was mentioned before, have a look through the Parents of Kids w/IBD subforum - you'll find many helpful, supportive parents there as well.
Good luck to both your little girls!
Just wanted to say hello...my daughter was 4 when diagnosed. Just a note to check out a Section 504 plan for your dd regarding school...crohn's is considered a disability and she has certain rights, including home tutoring if she is feeling poorly for long enough.
I often give dd the option of staying home (although she only does half day pre k right now)...she always wants to go, even when she is laying on the floor in pain at home. She still complains of some pain at school but she is the type that other things help take her mind off of the pain.
I often give dd the option of staying home (although she only does half day pre k right now)...she always wants to go, even when she is laying on the floor in pain at home. She still complains of some pain at school but she is the type that other things help take her mind off of the pain.
Comments about your little girl
Joshk........ my heart is breaking for your little girl. Just today I was listening to an interview of a 38-year-old woman who has been battling these symptoms since she was 2 years old and what she is doing now.
I am going to try to link you to that interivew. Hopefully, I will be able to figure it out!
crohnstestimonyEDIT_32kbps.mp3
This is what I got when I pasted it onto a Word .doc but I'm not used to this format: Listen: Crohn's Disease Audio
You may have to hold down the control key while hovering your cursor over the link.
What this woman is doing is the same thing that helped me get rid of my breast cancer, back in 2004. Let me know if you're able to listen to this,
There are lots of us who care, Josh.
Joshk........ my heart is breaking for your little girl. Just today I was listening to an interview of a 38-year-old woman who has been battling these symptoms since she was 2 years old and what she is doing now.
I am going to try to link you to that interivew. Hopefully, I will be able to figure it out!
crohnstestimonyEDIT_32kbps.mp3
This is what I got when I pasted it onto a Word .doc but I'm not used to this format: Listen: Crohn's Disease Audio
You may have to hold down the control key while hovering your cursor over the link.
What this woman is doing is the same thing that helped me get rid of my breast cancer, back in 2004. Let me know if you're able to listen to this,
There are lots of us who care, Josh.
- Location
- Michigan, USA
I have had a rough go this week and am looking further into EN and LDN. From what I have read LDN has really no side effects and I wish I would have heard about it sooner. Gastro docs don't usually agree to it. If you want to check it out further... Go to www.ldnscience.org it explains it really well. I wish I would have saw this months ago as my DD has gone from mild UC to severe UC in less than 4 months bc the meds prescribed made her UC worse.
My best to you and yours.
My best to you and yours.
Thank you everyone for your support and all the wonderful info. My daughter emilie is finally gotten relief from the pain..it seems the combination of prednisolone 30mg. Vsl. Flagyl.and prevacid are working.. she has had no pain for about a week now and is back in school full time..we met with the gi two days ago and she said we are going to start weening of the prednisolone to see what happens and rather than jumping right to medication, she recommends continuing the probiotic and adding a prebiotic along with a dairy free diet ..she also directed us to the lab for more blood tests and we got about four bottles for stool samples..she also gave us a special stool sample kit that has three seperate windows on a card that for three consecutive days a stool sample is to be placed on a window..she directed us to make sure to tell the lab to send it to a lab in san diego california wich is supposedly the best lab around for this kind of thing..this was ordered in order to find out where she is at with her disease..this is where we are at..we have been directed to go ahead and feed her fruits and vegetables and brown rice along with the pre and probiotics to see what happens..so far..so good i pray that all of you and your little ones and loved ones find relief from this..i am very greateful for all of you and your support..i will keep you informed of everything that happens in our journey with this in hopes that it may help someone ..thank you all
Angrybird
Moderator
- Location
- Hertfordshire
Thanks for the update Josh, it is really good to hear that Emilie has improved Yes please do keep us informed on how things are going, I will keep fingers crossed that she continues to do well.
xx
Yes please do keep us informed on how things are going, I will keep fingers crossed that she continues to do well.xx
- Location
- Michigan, USA
Glad to hear it. Find out what the doctors plan B is though. Always have a plan B. Heck I have a plan C. lol So happy to hear she is feeling better. I had a love/hate relationship with predisone but now I just hate it. It made Rowan feel great the first 2 times she was on it. It really takes a toll fast. This time we have all the side effects and non of the good really. It stops working the more you use it.
Keep up the great job. Keep her smiling, and dance with her daily.
Keep up the great job. Keep her smiling, and dance with her daily.
Thx for the heads up with the prednisone mary ..this is our first time around with it..i understand its not good to be on it especially for long periods of time..did you experience similar results your first time with prednisone? Did it take away your daughters symptoms for awile? I dont really know what to expect as we are just now starting to ween off it..i guess the next plan is medication..i also saw a book on the internet about healing crohns and collitus through diet..i think a vegan diet..im going look into that a little more ..hope your daughter is improving thx for the info..thx everyone
Angrybird
Moderator
- Location
- Hertfordshire
Hi there, I have just finished a course of prednisone and did not experience anything like this but it cannot hurt to just check with the doc.
- Location
- Michigan, USA
Vegan diet I wouldn't do if that is not your thing. She needs protein or that predisone will start eating up her muscles. Lots of protein and it is hard to get in with a vegan diet. To each their own but soy changes your hormone levels if your female also, so I would be scared of it. I would go down the gluten free road first. I think of wheat as sandpaper now... We have been gluten free for two days now and she is doing better already. She is having a colectomy on April 11th. Not trying to scare you BUT I wish I would have tried diet first, and not listened to the doctors that say diet doesn't matter. Bc in my opinion though they think it is not diet... If you asked them what caused it they still do not know. So this is a total contradiction in my book. Just bc they don't test positive for celiacs doesn't mean the gluten is not sandpaper making matters worse. That is just my opinion though, I am a huge skeptic at this point.
The joint pain is normal if she is still in a flare. But is the IBD not the steroids. I would go into the pcp for the sore throat. I had to buy Rowan a new bed her back pain got so severe. Ohh and sorry to be so late responding but yes Rowan did very well with predisone the first two times. Took away all her symptoms. It wasn't until her third round of IV steroid that I started hating them so much. They can mask the disease and make you feel as if all is well when really the gut is getting worse.
If I could do it all over again I would have blood allergy tests done first and do the diet. Either gluten free or SCD. Or start gluten free and start working towards SCD.
Things can move fast if the disease is bad enough. Rowan went from Mild UC to complete colectomy in 6 months. Now I just don't want to see her in pain anymore and I want her off the predisone... It has been too long now.
My best to you and family. Please take the advice given... I didn't and I regret it everyday.
P.S. Also start feeding her nutritional shakes... Use Bryers Lactose free vanilla (no carageenan, a known flare causer, It is the only one made without carageenan.). Carnation instant breakfast makes a lactose free one. If she stops eating food which eventually she will put two and two together you need a plan b for nutrition.
The joint pain is normal if she is still in a flare. But is the IBD not the steroids. I would go into the pcp for the sore throat. I had to buy Rowan a new bed her back pain got so severe. Ohh and sorry to be so late responding but yes Rowan did very well with predisone the first two times. Took away all her symptoms. It wasn't until her third round of IV steroid that I started hating them so much. They can mask the disease and make you feel as if all is well when really the gut is getting worse.
If I could do it all over again I would have blood allergy tests done first and do the diet. Either gluten free or SCD. Or start gluten free and start working towards SCD.
Things can move fast if the disease is bad enough. Rowan went from Mild UC to complete colectomy in 6 months. Now I just don't want to see her in pain anymore and I want her off the predisone... It has been too long now.
My best to you and family. Please take the advice given... I didn't and I regret it everyday.
P.S. Also start feeding her nutritional shakes... Use Bryers Lactose free vanilla (no carageenan, a known flare causer, It is the only one made without carageenan.). Carnation instant breakfast makes a lactose free one. If she stops eating food which eventually she will put two and two together you need a plan b for nutrition.
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- Location
- New Jersey
I am new to this whole thing myself and have been ill for 8 months with no concrete diagnosis yet. While I may not be able to offer any great advice, I just wanted to let you know that you and your daughter will always have support here. I'm 24 and it feels terrible to be this ill and I am so sorry to hear your daughter is going thru this horrible mess so young!! I would not wish this on anybody... the whole experience is terrifying for EVERYBODY in the family!
There is always a light at the end of the tunnel though and hopefully since you are such a great advocate for your daughter, you and the physicians can decide on the right treatment plan to get ur little girl feeling much better!! Wishing you guys all the best!!
There is always a light at the end of the tunnel though and hopefully since you are such a great advocate for your daughter, you and the physicians can decide on the right treatment plan to get ur little girl feeling much better!! Wishing you guys all the best!!
Hi everyone i havent been here in a while as my daughters symptoms wer better for quite awile. About two months ago her symptoms came back. The gi put her back on a high dose of prednisone and this time it didnt work . She has been having high fevers around 104 degrees along with diarrhea and pain. The gi put her on a medication called apriso (mesalamine) . She has been on it for about 4 weeks and she seems to have less frequent diarrhea but she is always really pale and tired. The gi says the medicine takes 4 to 6 weeks to work. I dont really know what to do at this point. Its hard to watch her constantly suffer . Does anyone have any experience with mesalamine? She has an appointment for another colonoscopy january 30th.
. She has been having high fevers around 104 degrees along with diarrhea and pain. The gi put her on a medication called apriso (mesalamine) . She has been on it for about 4 weeks and she seems to have less frequent diarrhea but she is always really pale and tired. The gi says the medicine takes 4 to 6 weeks to work. I dont really know what to do at this point. Its hard to watch her constantly suffer . Does anyone have any experience with mesalamine? She has an appointment for another colonoscopy january 30th.
JoshK
YOu may wnat to head over to the parent section
here-->
http://www.crohnsforum.com/forumdisplay.php?f=49
THe drug you are asking about is a 5-asa.
Pretty standard in crohns and UC.
Did they have her on anything for maintenance from March until now???
IF not please find a second opinion GI.
Here is a list of
www.improvecarenow.org
which specializes in pediatric IBD
from:
https://improvecarenow.org/about/who-we-are
FWIW my son 9 uses Asacol daily ( a similar 5-ASA)- but he needs remicade to really do the heavy lifting to help with his disease.
YOu may wnat to head over to the parent section
here-->
http://www.crohnsforum.com/forumdisplay.php?f=49
THe drug you are asking about is a 5-asa.
Pretty standard in crohns and UC.
Did they have her on anything for maintenance from March until now???
IF not please find a second opinion GI.
Here is a list of
www.improvecarenow.org
which specializes in pediatric IBD
from:
https://improvecarenow.org/about/who-we-are
FWIW my son 9 uses Asacol daily ( a similar 5-ASA)- but he needs remicade to really do the heavy lifting to help with his disease.
Thank you for your response my little penguin. The gi has had her on vsl #3 probiotic twice a day and now 4 times a day. Prevacid once a day and belladona once a day and within the last month she is taking the apriso twice a day and we have weaned her down to 5 mg of prednisone from 40 mg over the last month and a half
not sure on the belladonna- but everything else she had been on was not an IBD maintenance med --
Probiotic is an extra nice thing to do but not a my kid has ulcers everywhere sort thing.
Maintenance meds are:
5-ASA (mildest form of drugs)
immunosuppressants ( 6-mp and AZA)
Biologics ( Remicade & Humira)
Please find a large pediatric IBD center -
A second opinion can take at least two months typically after they get all the records ( which your current gi does not need to know about if you don't want)
The record gathering can take a few weeks. So at least 3 months sometimes more to get an appt.
IF you start now and things don't go as planned then at least you have a back up opinion sooner rather than starting at the 3 month mark when you really need to be seen with in two weeks KWIM.
Plus most GI like 2nd opinions if they are good.
regardless getting a 2nd opinion does not mean you are leaving your current go.
DS had a 2nd and a 3rd opinion and we are still with our original GI.
good luck
Probiotic is an extra nice thing to do but not a my kid has ulcers everywhere sort thing.
Maintenance meds are:
5-ASA (mildest form of drugs)
immunosuppressants ( 6-mp and AZA)
Biologics ( Remicade & Humira)
Please find a large pediatric IBD center -
A second opinion can take at least two months typically after they get all the records ( which your current gi does not need to know about if you don't want)
The record gathering can take a few weeks. So at least 3 months sometimes more to get an appt.
IF you start now and things don't go as planned then at least you have a back up opinion sooner rather than starting at the 3 month mark when you really need to be seen with in two weeks KWIM.
Plus most GI like 2nd opinions if they are good.
regardless getting a 2nd opinion does not mean you are leaving your current go.
DS had a 2nd and a 3rd opinion and we are still with our original GI.
good luck