5 year old on Methotrexate

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hbonsky

hbonsky

Joined
Feb 23, 2011
Messages
56
Any parent out there have a very young child on Methotrexate? My son is 5. All treatments have failed. He has a J-pouch (and it is a nightmare). Now they want to try Methotrexate. This is a last resort for him and there are no other options at this point. I'm freaking out because his doctor is clueless.
Thanks for any advice
 
I don't have any experience with a child that young as my son is a teen but I wanted to welcome you to the forum and tag some members that are knowledgeable about MTX and pediatric IBD in general, my little penguin, Dustykat, Patricia56, hopefully one of them can direct you to some pertinent info. Also izzi's mom has a young daughter with IBD and myreinhard has a 5 year old with UC. Hopefully, some of these members will be a long shortly with advice or info.
 
Heather, wow, I feel so badly for you and Zachary! I am all stressed about having to go On Remicade and 6MP, AND read your post and thought, look what that little guy has to go through! I wish I knew someone on this drug. I looked it up and it sounds like an immuno modulator. If this doesn't work, I would have a non-doctor plan. For example, there is this book called Breaking the Viscious Cycle. It has been around for years, but still valid. A mom of a very young boy just learned bio chemistry in her own and came,up with a low-inflammation diet that worked! Worth a try. I think Brigham & Womensmin Boston did a study. One of my docs, Corey Siegel, is an expert of pediatrics....I'll try to message him. Hang in there!
 
:hug:
my son was on MTX this past summer for 8 weeks. He was 8 at the time.
We gave him weekly injections. He took folic acid daily to help with the side effects. He was very tired the day after the injection but otherwise ok.
For him the medicine was just not enough.
:ghug:
I would suggest buzzy the bee
for injections
according to my son it made them more bearable.

http://www.buzzy4shots.com

One other thing have you seen a 2nd opinion GI at any of the major pediatric IBD centers.

Here is a reasonable list:

https://improvecarenow.org/about/who-we-are


the top three centers in the US for tough cases which yours sounds like
are CHOP ( philly), Boston Children ( BCP) or CCHMC ( Cincy).
WE took DS to CCHMC for his 2nd and 3rd opinion.
I know izzmom had some success with Boston.
 
Is he dx with UC or Crohn's ? I ask because of the J-pouch and now the need for meds.Typically if its UC -then J-pouch =cure
Crohn's then J-pouch is not recommended.
So I am a little confused.
 
Haven't tried a second opinion yet, but need to. Our dr. is taking too long and waits until things are so bad that my son needs surgery. I'm totally clueless when it comes to going out to other doctors. My insurance plan only allows me to see one dr. in las vegas (and vegas is not the best place in the US for good doctors). So, I'm not sure I can go to those clinics unless I pay?? My dr. did mention a referral somewhere but it wasn't any place in philly or boston. I'm just starting to panic because he is only 5 and I wonder what will happen once most of his bowel has been removed and no treatments work.
Thanks for all of your replies
 
He was diagnosed with Crohn's. The J pouch was supposed to help becasue his colon was very damaged. He was so sick at the time, I didn't have a choice. He was underweight, constantly sick, running 104 temperatures and nothing would help. The J pouch helped a little, but slowly he is getting worse again.
 
Hi heather,
Welcome to the forum. My daughter is older then your son but was on methotrexate for two years with good results after two years it stopped working for her. She had no side effects. I agree with some of the others about looking into getting another opinion. Many of us here have done that in fact we got three. Two other treatments to look into are enteral nutrition and low dose naltrexone. If you go to the first page of the forum and look under treatments you will find both of those listed and a lot of good information there. Please let us know how else we can help.
 
Give them a call- especially boston and cchmc
both are children's hospitals- there is financial aid plus many have a free care fund etc....
talk to the intake coordinator explain what he has had removed and how is has not responded to any medicine so far. ASk if he can be part of a study etc to lessen the cost.
They may put you in contact with their social worker etc...
where there is a will there is a way.
SOme will do a review of records without seeing him which most insurances will pay for.
Check into your state dept of health website many kids with IBD are covered additionally under medical assistance.
 
I don't under stand why they didn't give him a stoma ( ostomy bag) instead to let him heal since most ( not all ) with crohn's develop pouchitis if there is a J-pouch.:frown:
 
Couple of other thoughts. There are good pediatric GIs at Phoenix children's hospital. That's where we were at diagnosis.

Also re the MTX, Claire was on it early in her JRA course. She was on it for a year - age 4 to 5. We weaned that when she got to remission on Enbrel. After the Crohn's dx and failing 6MP, we are back on MTX. It can be slow going BUT she hasn't had any ill effects from it.

The suggestions you got from the other members for hospitals are great too. Let me know if you ever need Phoenix Children's doc names.

Big hug -

J.
 
Wow! Your son has had a really rough time. Mine is older, but we are having great results with the methotrexate and the side effects are pretty manageable. He is tired some and has some hair loss (minus constantly cleaning hair up which is a peeve for me, it's all good!)

I agree with the 2nd opinion suggestion by everyone. Crohn's can be anywhere in the GI tract, so removing the colon won't make it go away.

I also agree EN and about the diet. There are some good paleo/GAPS diet websites to find recipes to help you make a change. The diet won't cure anything, but will sure help.

www.wellfedhomestead.com has some good recipes for GAPS that are yummy!

Sending lots of hugs your way!
 
It sounds like things have been very difficult. Are you a single parent? Do you have anyone to help you? To go to medical appointments with you for example so you can talk things over with someone later? Or give you a hand researching things like calling your health insurance?

I strongly suggest that you put your son on a liquid diet (exclusive enteral nutrition or EEN or EN) right away if you possibly can do it. This is the MOST likely way to get him better for the short term. Usually the doctor orders it through a medical supply company. Until you can get that going through the doctor you can use Boost or Ensure. It is really important that he stop all regular food including all liquids except water for a while.

This would not be instead of starting Methotrexate. It would be hold him until the Methotrexate kicked in (if it's going to) and/or you get him to a 2nd opinion doctor and to improve his nutrition. It may put him into remission but usually the remission from EN will not hold unless you add medication.

Your next top priority should probably be to figure out your health insurance and how you get a 2nd opinion consult done with an out-of-state pediatric GI. Because that is what you need and you need it before you find yourself faced with emergency surgery or who knows what.

From Las Vegas you could go to Phoenix or you could go to LA. Frankly if I were you I would go to LA. You have a couple choices there but the one I would suggest is Cedar Sinai Pediatric IBD Clinic with Marla Dubinsky. If your insurance won't let you go there then you could go to UCLA's pediatric IBD clinic.

There are two safety nets for children with serious health issues - Medicaid and Children's Medical Services or CMS. If your private insurance will not cover a 2nd opinion with someone who specializes in pediatric IBD then you may need to turn to Medicaid/CMS for that. CMS is the payer of last resort in the state for children's health care and in Nevada it's embedded within the Medicaid program. The two are not actually connected except that to get CMS you usually have to have a denial from Medicaid.

That's a long way of saying - follow this link, apply for Medicaid - even if you think you won't qualify - so you have that in place if you need it.

http://www.insurekidsnow.gov/state/nevada/
 
Hi and welcome.
My little lady is 3 1/2.
Grace is still undiagnosed but were fighting for answers.
You need a team of docs you feel are in control of the situation and you trust.
Your DS has this for life and for many years you will have to deal with his docs.
I hope you find answers.
 
Hi there my dd is 4 and we have had a conversation about methotrexate with our GI yesterday. I'm in the same position as you - what do I do next ? No easy answers but sending you support
Polly
 
Thanks so much for all of the support,
I'm so overwhelmed at this point, but am going to look inot Medicaid. I thought he wouldn't qualify, but its worth a try. Its just my husband and I here in Vegas. We moved here for work a while ago so we are each other only support. I am going to call some clinics and see what they can do to help me. Hopefully we can get some financial assistance. We are in the process of short selling our house due to excessive medical bills and are going to relocate to Michigan where our families are. So, I am going to look into IBD clinics in that area or surrounding area.
 
Hi hbonsky, my DD has a J-Pouch she was diagnosed with UC. We are fearful of Crohns. Rowan had her surgery at Motts in Ann Arbor Michigan. They were very specific and triple checked to be sure she had UC and not Crohns. I am kinda shock that they gave your son a J-Pouch, I was told this doesn't happen. I would get a second opinion also and possibly a attorney. Did they forewarn you of this outcome? If not I would definitely get an attorney. Crohns is the one reason to not do a J-pouch. Anyway, we are living in the present.

I would try the Low Dose Naltraxone without a doubt. Idk about the EN with a J-pouch bc it for sure would give him so much incontinence and butt burn. I am assuming he is having pouchitis or is it Crohns? What did they tell you was happening? If it is pouchitis I assume he has been on Cipro which works great for pouchitis better than Flagyl by far by what I research from studies at Cleveland Clinic. Also VSL is supposed to be great for staying in remission during and after Cipro.

I have no experience with MTX. So no real advice there. I would defiantly recommend Mott if you move to Michigan or Cleveland Clinic which is not too far away for a even better second opinion.

I would say he need and permenant end ileostomy to relieve his symptoms. Poor kid should have never had a J-pouch. It is only for FAP, Hirshsprungs, Cancer, and UC.

So sorry that he and you are dealing with this now and with having to move now that is a double whammy. But the good news is you would be eligible for State Aid and it covers everything even if you have a primary insurance. We have Childen Special Health Care and it picks up everything our isurance doesn't cover, including co-pays, VSL, Lopermide, Peptamin Jr... Everything related to her UC. I don't know how long you have to be a resident though or if that is a factor. You have to make a lot of money to not qualify, we make monthly payments to the state and it is well worth it as our secondary. Guaranteed coverage due to IBD.

Hugs to you so sorry your going through this right now.:heart:
 
Last edited:
Also LDN is hard to get prescribes bc it is off label prescribing. Penn State does a lot of research about it and I would contact the website. www.ldnscience.org directly and get a good referral to a doctor willing to prescribe in your area.

I know they do have a lot of people on J-pouch.org whom were re diagnosed with Crohns after getting the J-pouch and they use all the different meds from MTX, Biologics, LDN. Someone might help you further there.

Again so sorry your dealing with this now.
 
Wow, I am so frustrated. Our doctor never explained anything and I didn't know that a J pouch is not recommended for Crohn's. It was a quick decision when he was in the hospital last year and I thought we didn't have any other option. He has the worst "butt burn " ever with blisters, bleeding and he can barely sit/walk. His dr says that will go away once the symptoms go away which of course is never because they haven't fixed his problem. On Friday, he is going to have a pill camera put down his throat to get some pics of his bowels so maybe I'll know more then.
 
Idk if I would even try the pill cam blockages are huge with J-pouchers. Is there a reason to not do a pouchoscopy? Do they believe his inflammation is that bad at this point that it is a risk for perforation? What about an MRE? Less evasive and just as reliable. Just trying to avoid further complications down the road. Has he been on Cipro?
 
Is there a way you and your son can go to Michigan now and your husband stays behind to deal with the short sale? That way you can start getting better medical care right away without having to do the insurance dance.

As for the perianal sores, blisters, etc. are you saying that the doctor thinks those are from the Crohn's?
 
I haven't had a chance to read all of the responses, but we were told by our surgeon that generally speaking, Crohns patients are poor candidates for j pouches. Also, we appealed our insurance company (twice) to allow us to visit a large, well-known hospital that was out of network for a second opinion. They approved it, and we were actually approved to go there for surgery and a year of care. We did, however, have the support of her peds GI. (((HUGS))) and I wish you and your son all the luck in the world. :ghug:
 
We use a Coco Bidet to avoid the butt burn. They are expensive ($400) but we save a lot in TP, wipes and rash cream. Not to mention I like the bidet!:thumright: It attaches right on the regular toilet. If this is not an option I know they make squirt bottles for rinsing, where to find them idk... Maybe a medical supply place. I had one when I had my episiotomy and used that it really helped with the butt burn so much we elected to get the bidet. It seemed to help with the internal burning somehow to.
 
I definately have alot of work to do. I really want to go to Michigan now, but we still need both incomes to make the move and other things work. We should be able to get there in the next few months. I am so thankfrul for all of the comments and ideas. I have lots to take to his next appointment and hopefully can get referred to someone who knows what needs to be done next.
 
Please start the transfer soon.
Let the GI staff in Vegas know your moving and you need to get things set up for when it does happen. If they push you for a date give them a ball park time. There's NO reason that Mott's or wherever you go shouldn't at least get prepare for his arrival.
I understand about money restrains.
 
Oh my goodness, what a difficult and heartbreaking time for you both and your little guy...:ghug:

I can't add to the fab advice you have been given except to say that you are in my thoughts and I hope more than anything you are able to get a sound and accurate second opinion and your lad soon finds lasting peace and relief. :heart:

Dusty. xxx
 
Hope you manage to get something sorted soon, your little boy deserves to get treated right so he can enjoy his childhood more!
 
I just wanted to give you a little update. After Ryan's shot on Saturday, he told me that he feels nauseated for about 6 hours after the shot....Only been taking it 6 months and just now telling me this has been going on every weekend! So, the plan next weekend is to try bentyl or zofran with the shot next weekend and see if it's better. Obviously, the nausea is not terrible. He hasn't shown an outward sign at all! It makes sense because he hardly ever eats the night of the shot. Now I know!

Just wanted to let you know to look for that if you start the methotrexate.
 
I suggest you do the shot immediately before bedtime. Then he can sleep through the nausea and any other side effects.

But don't do the shot in his bedroom. His bedroom needs to be a "safe" space where he knows he won't get hurt by things like shots.

And if you go ahead and use the meds be sure to give them enough in advance that they are working at the time you give the shot.

He's doing great and so are you!
 
Agreed. Bedtime is key. That's what we do. Also administer one regular strength Tylenol and 25 mg Benadryl one hour prior. This is what our GI recommended and it made a difference for Claire for both the morning after headache and the nausea.

J.
 
Hi and welcome to the forum!
I know what you are going through. That is why I would advise you to keep in mind that many immunodeficiencies may also cause IBD and thought you might find this thread interesting:

http://www.crohnsforum.com/showthread.php?t=43355

My 5 year old son's immunity system has been tested recently and it seems that he has some sort of immunodeficiency (tests are still going on). Last summer the doctors proposed Humira after Remicade failure and we decided to ask for a second opinion. The doctors of the new hospital recommended broad immunological tests, thank God! And now he has been on EEN for 8 eight weeks and IVIG treatments were started last week. Since your son is also very young with a severe disease, I would demand the immunological tests for him.
 
Thanks for all of the help. We are still waiting on starting the methotrexate (waiting for insurance approval). Don't know what I would do without this forum. Most of you seem to know so much. Las Vegas is terrible for medical care. Everything I know, I have asked others or had to research.
 
So sorry for all that you and your family are going through!

I would just like to reiterate what everyone else has said, and if I were in your shoes, I would have them put him to sleep for a short while, and insert an NG tube or PEG tube and intiate an elemental diet as soon as possible.
 
Just an update about the methotrexate. We gave Ryan his weekly shot yesterday and a zofran along with it. He has not had the nausea he was having and has been going strong all day today!
 
Glad to hear you guys had a good injection with it! I was on Methotrexate for over a year and had success with it but unfortunately for me it lost it's effect. I hope that's not the case for you guys though and it continues to work!
 
:ghug:JMckinley--Glad the shot is starting to work.

May it continue

Hbonsky-- how are thing going?
update when you can.:hug:
 
Hello there, Im sorry for the late reply, my son hasn't been very well and its kept me rather preoccupied.

My little boy started methatrixate injections once a week when he was five years old. It worked for a year but after this we had to add infliximab infusions to his meds.

he has now been on weekly methatrixate for three years and continues infliximab infusions two monthly. This has kept his crohns at bay for almost a year.

the methatrixate injection itself doesn't hurt if you use emla cream but the actual medication seems to hurt as it comes out of the needle under the skin. We have tried icepacks which worked for a while, different sized needles (you would have to discuss this with the doctor)but have found the best distraction is iPad, iPod, ice block (all the big i's in life). Afterwards my son feels pretty awful. lots of nausea and pretty tired. We take Zofran to combat the nausea but still, driving in the car makes him sick, he has a hyper sensitivity to smells and often things make him sick and his appetite wains so I don't push food too much on the weekend and just let him decide what he wants to eat, usually toast.

Often my son says to me mum how come I have to take something that makes me feel sick and I say to help make you feel better. Seems crazy to both of us but i guess what it boils down to is the lesser of two evils. I do think the drug works for his crohns and for that reason alone I persevere with it but its not a nice thing to have to do to any child really.

I know your anxious and Im sorry that your child has to have this drug but if it means helping to combat crohns and the damage the disease can do without proper treatments that work for your child, it is worth it.

Oh and Im sure you already know this but be vigilant around people with infections and viruses. Good luck and if you need any advice or just a chat please don't hesitate to contact me.

all the best, tara
 

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