11 month old baby with UC - in need of help

[Mette]

Hallo everyone

First of all, I would like to say, that I am so happy, that I have found this forum! My Daughter, Astrid, is 11 months, and she has just been diagnosed with UC. We live in Copenhagen, and we have been informed, that never before has a child so young been diagnosed with UC i Denmark. This makes it very difficult to get information and advice about our situation, and there is also a lot of insecurity about her treatment and prognosis.

I was therefore so happy to find this forum and have the opportunity to talk to other parents, who have small children with this disease.

Our daugther have had bloody loose stools, since she was two months, and her growth is set back. Fortunately she has never been in pain. About a month ago we started treatment with 14 mg prednisolone a day, which helped very quickly, and she now has normal stool and is beginning to gain weight. Two weeks ago we started giving her pentasa in granular form, which is supposed to take over for the prednisolone. But its quite a challenge getting her to take the pentasa, since its in granular form, and I am worried, if we can obtain a stable dose over time.

The problem is, that the danish hospitalsystem have never treated such a small child with UC before, and therefore they dont have any experince with, what is best, - and most of the medicine they have in their stock is in pill-form, and can not be used to give an infant. I would therefore be extremely gratefull, if any of you out there, who have small children with UC, could tell me, what treatment your child has recieved?

Our doctor has mentioned, that Salazopyrin (sulfasalazine) could also be a good choice, but the hospital has not been able to get a hold of it in liguid form. Do any of you have children, who are treated with salazopyrin in liquid form?

It is so painfull to find out that your child has a chronic disease, and it makes it even harder, when there is so much insecurity about the treatment. Therefore, I really hope, that some of you will share your experience with us. It would be a tremendous help.

- Mette

 

[upsetmom]

Hi Mette and welcome

I'm so sorry to hear about your baby....:hug:
My daughter was diagnosed at 14 so i can't even imagine how hard it must be with a little one.

You've come to the right place for advice and support.

There are a few parents with young kids i'm sure they'll be along soon.

 

[ellie]

Hi Mette
Sorry to hear about your little daughter - must be so hard to see your child dealing with serious medical issues..
Am commenting from an adult (Crohn's) colitis perspective here. I've been on sulfasalazine for a couple of years now, and have had a steady, manageable response to treatment. Not sure about the availability of a liquid formulation.. Also, I should add that I take an enteric coated tablet, so have had minimal side effects.
It's probably worth talking to your paediatrician about the best way for a little one to take the medication to avoid side effects


HD

 

[Farmwife]

Hi and welcome!

It just breaks my heart to hear about your little one.
My Grace has been ill most of her life also. Grace (4 yr.) is dx with IBD. Her GI is leaning to Crohn's but hasn't rulled out UC. We'll know more at the next scope a couple months from now. Yes, these meds can be given in liquid forms. I don't know enough on the med side yet to help out. We have QueenGothel and Izzy'smom that will be able to help. They'll be along sometime. Both their girls who are young also have UC.
Hang in there and ask lots of questions! Feel free to pm me anytime.

 

[polly13]

Hi there and welcome so sorry you had to find us and that you're little girl has this diagnosis. My 4 yo Lucy has crohns she was diagnosed at two which is quite rare here in Ireland. On the meds I'm not familiar with the ones you talk about but so far all Lucy's meds have been in liquid form eventhough the pharmacist had to specially order one medication and we would have to wait up to week we were still able to get it in liquid form.

 

[QueenGothel]

Hi Mette, welcome to the forum, glad you were able find us, but so sorry your little one has been diagnosed with UC. Yes there is a liquid form of Sulfsalazine and even babies here in the US have been treated with Remicade with good results. Unfortunately I do not know these cases but my old GI told me that they have had babies on Remicade and have achieved remission.

We have had a rough road so I won't scare you and tell you my whole story bc it is very VERY lengthy and she had a lot of complications. I just wanted to point out that UC in the end can be cure by removing the colon. This of course is a scary road. I have lived through it my daugther was diagnosed at 3 and had her surgery at 4 and is now 5. How time flies. They in the end created a j-pouch for her and she is doing well. This by no means is an easy road and you would want to wait until she is older but if she can't it is done in babies to treat Hirshsprungs disease in the same way all the time. I know you are probably thinking this sounds like a horrible situation, but at least it is curable in the end. The medical terminology for this anatomy modification is called Ileal pouch-anal anastomosis, referred to as a j-pouch. The surgical procedure is called a total proctocolectomy with Ileal Anal pouch rectal pull-through with mucousectomy. There is a lot of information out there on this and the majority of children whom get this surgery achieve greater result than adults do.

I really hope you are able to get the UC under control with medication and achieve a lengthy remission, but 1/3 of people with UC in the end get this j-pouch surgery and find relief from the pains of the disease.

Feel free to PM me anytime as well, we are here for you. Rest assure you are not alone.

Take care,

 

[Mette]

Hi there and welcome so sorry you had to find us and that you're little girl has this diagnosis. My 4 yo Lucy has crohns she was diagnosed at two which is quite rare here in Ireland. On the meds I'm not familiar with the ones you talk about but so far all Lucy's meds have been in liquid form eventhough the pharmacist had to specially order one medication and we would have to wait up to week we were still able to get it in liquid form.

Thanks for all of your replies .

Polly13; Two is also a very early age to be diagnosed. It must have been hard.
Could you tell me, what kind of medication your daughter is recieving? The name of the medicine? I would very much like to hear the experience of others, who have small children with this disease.

 

[Devynnsmom]

Hi Mette and welcome to the forum. I'm so sorry your baby is so sick, so young. My daughter Devynn is 11 and was diagnosed at 8, although her symptoms started when she was about 18 mos old. Devynn started out on Pentasa and it was AMAZING! She improved almost immediately and it worked great until we had a death in the family and she went into a flare. She is now on Sulfasalazine (pills) and is doing very well.
You said the pentasa is granules, can you put it in some apple sauce and feed it to her? Thats how Devynn took her pentasa the whole time she was on it. We would melt it (pill form, but would turn into hundreds of little balls when wet with water) and then she would put the spoon into a bowl of apple sauce and swallow it.
Good luck! I hope you get some relief for your little one real soon.

 

[Mette]

Hi Mette, welcome to the forum, glad you were able find us, but so sorry your little one has been diagnosed with UC. Yes there is a liquid form of Sulfsalazine and even babies here in the US have been treated with Remicade with good results. Unfortunately I do not know these cases but my old GI told me that they have had babies on Remicade and have achieved remission.

We have had a rough road so I won't scare you and tell you my whole story bc it is very VERY lengthy and she had a lot of complications. I just wanted to point out that UC in the end can be cure by removing the colon. This of course is a scary road. I have lived through it my daugther was diagnosed at 3 and had her surgery at 4 and is now 5. How time flies. They in the end created a j-pouch for her and she is doing well. This by no means is an easy road and you would want to wait until she is older but if she can't it is done in babies to treat Hirshsprungs disease in the same way all the time. I know you are probably thinking this sounds like a horrible situation, but at least it is curable in the end. The medical terminology for this anatomy modification is called Ileal pouch-anal anastomosis, referred to as a j-pouch. The surgical procedure is called a total proctocolectomy with Ileal Anal pouch rectal pull-through with mucousectomy. There is a lot of information out there on this and the majority of children whom get this surgery achieve greater result than adults do.

I really hope you are able to get the UC under control with medication and achieve a lengthy remission, but 1/3 of people with UC in the end get this j-pouch surgery and find relief from the pains of the disease.

Feel free to PM me anytime as well, we are here for you. Rest assure you are not alone.

Take care,

Thanks for your answer, QueenGothel. It sounds like you have been through a lot with your daughter. I'm glad to hear that she is doing well after the surgery.

To be honest, the thought of surgery does scare me quite. I haven't really thought of that as an option. But of course, this is all so new to me.

I thought that surgery was only necessary in severe cases? So far, my daughter's case seems to be mild, the doctors say. Her only symptoms have been loose, bloody stools and slow growth. Otherwise she is happy and does not seem to be in pain. The coloscopy showed that her colon is inflamed, but no severe damages. I had no idea that such a high percentage of people with UC require surgery. I'm surprised that her doctor did not tell me this.
Did your daughter need surgery, because she did not respond the medication or because of complications?

 

[QueenGothel]

Sorry again my point was not to worry you but to let you know that regardless of medication there is a cure.

My daugther was diagnosed with Mild UC and had a rare reaction to the 5asa (sulfasalzine, Asacol, Pentasa, Canasa, etc) it caused rectal bleeding. She went from mild to severe in 5 months. Many people whom suffer from years of mild to moderate get the surgery electively also to rid themselves of the drugs and pains of UC. I was told that my dd having UC at such a young age she was guaranteed to eventually have this surgery sometime in her life. Granted we did the surgery bc it was a nessesity, but once we move onto Remicade I was ready for surgery bc of the risk of side effects (cancer) from that drug. We use the remicade as a bridge to get her healthy for surgery. I weighed my options of having a kid flaring all the time and on heavy medications missing her childhood or having the surgery and living a drug free life. She is young enough to where she really might not remember all the bad things that have happened along the way.

She is honestly, even with the stress of sugical complications (adhesions) and being in and out of the hospital so many times 100x better than she was with her UC. She is med free and hopefully now after a long journey... cured. :medal1:

 

[Lewiss mum]

:ybiggrin:hi and welcme to he forum . my son had problems feom the age of two he was dx at 5 and is now on i fliximab (remicade) and azathioprine . u have to tbink of he positives u now have a diagnosis u r daughter wont have to wait months even years to be dx i no his is og little help now but u must research amd ask as many queations as u can i have also heard of small babies being given remicade . i wonder what ur health care is over there do u think u could private would ur insurance cover it . can the docters refer u to a big childrens hospital or have meds broght in from other countires that have. ur legaliation and that are permitted . it is a long road to remission sometimes so u must stay strong amd healthy and dont be afraid to ask for help we ve all been there and felt alone but u.ll find good people on this forum . id never divulged so much personal info about my kids to anyone other than docs and family man am i glad i did . take care hu ny .xx

 

[CarolinAlaska]

Mette, have you talked with your pharmacist about ways to make the granules more palatable for your baby? We have a local compounding pharmacist who can help get the meds in such a form that they can be taken. I'd try talking to yours. Blessings to you and your little one.

:hug:
Carol

 

[Sascot]

Hi and welcome. Sorry to hear about your daughter, so young to have this diagnosis. No help with little kids - sorry, my son was 12 when diagnosed. I just wanted to wish you well - hope that they manage to get some help from other hospitals in other countries, so that they can give the best treatment!

 

[Jmrogers4]

Mette
Welcome to the forum sorry to hear about your daughter. You have certainly come to the right place for support and research. I can only echo what was said already.

 

[Aniuko]

Hello and welcome! I am sorry you had to find this forum but believe me, the lovely people here help a lot and offer a lot of support. We live in Germany and if it is not too far away for you maybe you could contact a very famous doctor of ours. If not coming to Munich, maybe contacting her. She is Head of the Division of Paediatric Gastroenterology and Hepatology in Munich University Hospital- Sybille Koletzko.

http://2012.excellence-in-paediatrics.org/node/2143

 

[Mette]

Hello and welcome! I am sorry you had to find this forum but believe me, the lovely people here help a lot and offer a lot of support. We live in Germany and if it is not too far away for you maybe you could contact a very famous doctor of ours. If not coming to Munich, maybe contacting her. She is Head of the Division of Paediatric Gastroenterology and Hepatology in Munich University Hospital- Sybille Koletzko.

http://2012.excellence-in-paediatrics.org/node/2143

Thanks for the advice . I would be great talking to an expert in the field, - but I dont know, if she has time to respond to requests from people from other countries. Is she your doctor?

 

[Aniuko]

Mette,

yes, she is my doctor but because she is sooooo important for the last three years I saw three times. There are other doctors who see us every time we have an appointment but she is the one who "takes" patients. I know she has kids from other countries. Maybe for a start, write her an email, if this doesn't help, try to call, if not we had an appointment March 8th and I will be happy to tell one of her assistants to talk to her. Maybe it won't be needed, maybe she will write back. I found her address on the hospital page: [email protected]

Hope it helps,

Ania

 

[Dexky]

It's terrible when any child or anyone else for that matter has to deal with any of this but an infant, I can't imagine. I wish you and your sweet baby the best!

 

[Patricia56]

Below is a link to an article published by three doctors in Rotterdam at Erasmus MC-Sophia Children's Hospital last year.

The first doctor is Dr. DeBie and his/her e-mail address is:

[email protected]

If you are not already getting care there then I strongly suggest you contact them and ask to have your daughter seen at their clinic.

Here's the article, it isn't about UC but that doesn't matter right now. You need doctors who specialize in treating children with IBD and are in contact with other doctors in Europe.

http://www.ncbi.nlm.nih.gov/pubmed/22820027

Use of exclusive enteral nutrition in paediatric Crohn's disease in The Netherlands.
de Bie C, Kindermann A, Escher J.
Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children's Hospital, Dr. Molewaterplein 60, 3015 GJ, Rotterdam, The Netherlands.

Practical matters:

Sulfasalzine does come in liquid form if your doctor writes the prescription that way.

If your local hospital doesn't have it then it will have to be ordered.

If they won't do it or it is going to take a long time you might need to order it yourself from another pharmacy.

Pentasa only comes in the little balls because it has a coating on it. The coating makes sure the medicine inside is released in the colon instead of the small intestine.

You could try mixing it with applesauce, ice cream, yogurt, and such. Don't mix it with anything really acidic because that might dissolve the balls.

Put the pentasa in just a little applesauce, for example. Enough that you can feed it to her in 2 or 3 spoonfuls. That way it's over fast. If the doctor has prescribed so much that you can't give it to her in that small an amount, talk to him about spreading the dose out or whether she really needs that much.

Try to be calm and simple about giving her the medicine. Not a lot of playing or coaxing trying to get her to take it. You set her down, say time for medicine, scoop it in her really quick, maybe a sip of juice and off we go back to playtime.

IF she fights, don't fight back. You are only teaching her to fight you over this. Instead you set the medicine aside and try again in a few minutes. And again and again until she understands that she is going to have to do it. And she will. If she misses a dose because of this, don't worry. Just keep at it and in a day or two she will probably be taking her medicine easily.

It's probably a good idea to have a set time of day when she's going to get her medicines. Having a pattern is good for everyone and if there is some playtime afterwards or a warm bath or something to distract her that can help.

It's best not to make a big fuss over her taking the medicine when she finally does take it.

This will be a part of her life for many years - perhaps her whole life. You don't want to make a fuss over her every time she takes a pill when she's 5, 7 or 9 so don't do it now.

I may sound kind of mean but really our kids are smart - even when they're that little. They learn fast and once you teach them that they should be rewarded for doing what has to be done, it's very hard to go back from that.

Many children with UC are given enemas to treat their colonic inflammation. I'm surprised they haven't suggested that.

Did they tell you clearly when you should be taking her to the hospital or calling the doctor after hours if she gets sick or has new or worse symptoms? For example, if she has diarrhea and vomiting what should you do? How can you tell whether she is in bad pain and what should you do then? If she starts bleeding more than usual, what do you do?

If not, I suggest you ask for that right away because little ones can get so sick so fast.

To show the doctor how much blood she is loosing if she starts bleeding, take her diaper with the blood and put it in a plastic bag and freeze it right away. Write the date and time on the bag.

I am so sorry that you are having to face this. It's OK to feel sad and angry. It's also good to remember that there is treatment that will help even if she gets worse.

All the best

 

[Niks]

So sorry to hear about your little one, she is so tiny!

You will get some fabulous advice and support on here.

Hugs and good luck xx

:ghug:

 

[Mummygee]

Hi Mette

Sorry to hear about your little one. My son was diagnosed at 18 months with UC. That was four months ago. It's a roller coaster of emotions, and some days I feel like it spinning out of control but today is a good day. Grasp the positive days to keep you strong!

With regard to what meds he takes..............HTH..........

He takes sulphasalazine in tablet form, strange child crunches them, they are a dispersable type so no coating, dr's have told us he's fine doing that. He had a 7 week tapering course of prednisilone which had fab results while we were on them. He has had two courses of liquid metronidazole ( flagyl) for some blood. He started lactobacillus (prescribed by GI) a week ago which (touch wood, hate to type it in case I jinx it) has resulted in solid bm's twice a day. The lactobacillus is capsule form but I empty and mix with his multivitamins and he takes happily from a syringe.

Good luck with it all. Always here for a chat x