Desperately need support

[emma-myhero]

hi to all the parents. i'm new to this forum (as a participant....have been a silent stalker for months )
my 11 year old daughter, emma, was diagnosed with CD back in feb of this year. she has been hospitalized 6 times and has had too numerous to count visits to the emergency room. she's had picc lines, tpn/IL, 3 blood transfusions and has now failed 6mp, remicade and humira. now trying methotrexate IM and on max steroids (40mg and unable to wean). she has fallen way off the charts for weight and she's absolutely against ng feedings. (as am i....i'm an RN in an NICU and ng feedings are a way of life for me in my career but i don't want to see one in my daughter!) i know there is a point where i can't let her refuse anymore. i'm starting to come to terms with EN via an ng but i can't even begin to break it to emma. she has been through so much in the last year. she's missed almost her entire 5th grade year of school and so far, all of her 6th grade year. the emotional stress is taking it's toll...now even more so than the physical stress. we feel alone and isolated...no family around and friends have a difficult time understanding and don't know how to help. i've tried reaching out to the ccfa in hopes of finding a support group in the san diego area but no calls or emails have been returned. i'm hoping this site is still active and maybe i can at least "chat" with other parents who get it. thank you for taking the time. goodnight my new friends.

 

[Jennifer]

Hi emma-myhero and welcome to the forum! It's definitely active and we have a lot of knowledgeable and supportive members including parents.

I'm sorry to hear that your daughter has gone through so much already and I do hope that she'll go into remission soon. I hope the Methotrexate does the trick for her and if not there are still more options. A lot of the parents on here have children who are using EN or have used it and have/are having success with it so I hope your daughter does too if you decide to go that route. Remind her that it will likely be temporary until she's well.

We have a support group for people with NG tubes here: http://www.crohnsforum.com/showthread.php?t=48817
As you can see its in the subforum for EN under the main forum for Treatment.

I don't have children yet but was diagnosed when I was 9 and my school and friendships did suffer but it is possible to catch up in school eventually and keep friends or make new ones. I know its hard for her right now but things will improve, I promise.

I'm glad you found the forum. Keep us posted on how she's doing and how you're holding up as well. :hug:

 

[emma-myhero]

thank you so much jennifer! i'm encouraged to see you achieved remission for 14 years! wow! bummed to hear you're in a flare and i wish you a quick recovery and another 14 plus years of remission! thank you for offering support and encouraging words. i look forward to being a part of the group. ;-)

 

[Jennifer]

Thank you. My flare is just about over, just a bump in the road. That reminds me though that you could check out other people's success stories here: http://www.crohnsforum.com/forumdisplay.php?f=72
There are some people who have been in remission for a lot longer and still are.

 

[Jmrogers4]

Welcome Emma my hero,
My son is 14 and was diagnosed when he was 10. We just finished a 6 week course of EEN, he chose to drink it as he pretty much refused the ng tube. There are many other who have found success with it as well. We started originally on it as a supplement to gain weight as he was svelte underweight and he gained 23 pounds within 8 weeks, he will continue on 2-3 shakes to maintain weight. He is currently symptom free and feeling well in fact I'm sitting in his school parking lot at 3 am waiting for him to get back from the semi finals of their football team
does she have a 504 to help in school.
Hope the methotrexate works wonders and she is soon back to your normal child.
Please feel free to ask any questions, just vent, ask for support there is a fantastic group of parents on her

 

[CrohnsKidMom]

Welcome Emma-my hero; Sorry to hear your daughter is suffering so. My 8 yr old son started getting sick in Jan this yr, and was dx'd in Mar. He was on prednisone from Apr to Aug, and is currently doing methotrexate injections after Imuran did not work. He is doing well now, although I'm always on edge. Our GI highly recommended EEN via NG tube back in Apr. It is so good at achieving remission. But the emotional factor held me back, much like you. I know that's what we'll be looking at however, should my son have another flare anytime soon. Hang in there. Things will get better.

 

[my little penguin]

We also did EEN for DS . He drank it all no ng tube.
It was not easy at first he cried we cried but in the end he could drink it and he still does.
He started EEN on eight peptamen jr a day and over two years later drinks three a day as a supplement every day.

There are many different brands some kids do better with polymeric formula
Pediasure or kids boost . Se need semi elemental - peptide or peptamen jr
While others do best on pure elemental neocate elecare or splash .

I think you need to read a few of the research papers in the ped section
EEN is as effective as steriods just no side effects.
Some use a tube only at night and then pull during the day .

Have you taken her for a second opinion?
The top kiddy hospitals in the US for Ibd are chop Bch or cchmc .

It is never easy but EEN does not have to break a child
And an ng tube in an older child can be ok
There are more than a few sites where kids have ng tubes that are older
Some even went to g tubes .

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

 

[Sascot]

Hi and welcome. Sorry to hear about your daughter. I can understand how she feels about the NG tube, but it really isn't that bad. When my son was diagnosed we were told you had to have the EN for 8 weeks (Modulen) and since he couldn't drink it, he HAD to have the NG tube. He had just started high school and went to school with the tube for 8 weeks. He didn't like it for the first 2 or 3 days but after that he didn't feel it any more, and no one ever teased him about it.
For us the EN was great and worked really well (he was only mild though). Since he had the EN he has had no tummy aches at all and it allowed him to avoid the pred. I hope the methotrexate works for your daughter, and the EN might be the push she needs to help the meds start working well. Good luck.

 

[Johnnysmom]

Sorry to hear your poor girl is struggling at the moment.((((hugs))))

I can only add that these kids are really amazing. I am constantly impressed with how well they deal with all of this. It sounds like she has been through so much, but if the NG tube starts her feeling better, my guess is she will adapt. Others prefer to drink the formula. My son has adapted and endured things that I never would have thought he could. He takes things in stride now. She will find the strength. You will too momma!!

We are here for you!:ghug:

 

[Twiggy930]

:welcome: emma-myhero

So sorry to hear that your daughter has not been well. My son was diagnosed in grade 5 too.

I totally understand your feelings about the NG tube and EN. When my son was diagnosed EN via a NG tube was the preferred first line treatment presented to us but we (both my husband and I and my son) just couldn't come to terms with it. It just seemed too extreme. So we chose to put him on prednisone. It was the right choice for us at the time. However, when prednisone didn't work completely we got desperate and desperation led us to try EN via a NG tube.

For my son I knew he would never be able to drink the shakes that were required as he is a very picky eater. I was extremely worried about the NG tube couldn't imagine it going well. Somehow my son got it in his head that it would be a cool trick (think 10 year old boy) to learn how to put a tube up his nose and make it come out his mouth! :ybatty::ybatty::ybatty: So he approached learning how to insert the NG tube with that sort of cool/gross 10 year old boy humour. Much to my amazement he learned how to insert the NG tube in under 1 hour and barely even gagged. That afternoon when we got home the first thing he did was show his sister and grandmother how he could insert the tube (just for fun!?!?!?!!!). What I thought was going to be horribly traumatic for him was not at all. After about 1 week of inserting the tube every night he could insert the tube with no help from me in 12 seconds flat! I really could not believe it.

Some of the tricks to increasing the chances of having NG tube success in my opinion are.

1. A good calm attitude to learning how to insert the NG tube. I don't know how my son achieved this, he was way calmer about it than I would have been.

2. Have the child insert the tube themselves right from the beginning (with guidance of course). I think it is better to have the child do it as they can feel what is going on and it greatly reduces the "blind" pushing of the tube at the back of the nose where it has to make that turn to go down the throat.

3. Use a bit of numbing gel on the end of the tube and kind of snort it up the nose just prior to inserting the tube. My son only needed to do this for about 5 days and then he didn't need the gel any more.

4. Swallow some water through a straw as the tube is going down the throat.

5. Use a very small tube and remove the guide wire prior to inserting. We used a 6 Fr.

Good luck with it. If it would help your daughter to hear what my son has to say about it (directly from the kid himself) just PM me and I will get him to write her a note.

:hang:

 

[crohnsinct]

Hi and welcome emma-myhero. I am so sorry to hear about all your girl is going through it really does sound like it has been a tough haul. My daughter was dx'd at 12. She was on Remicade and prednisone and everytime we tapered the prednisone symptoms came back. The doc decided to stop prednisone and add methotrexate. We asked about EEN. He was supportive but my daughter was not having the tube. She decided to drink it. We started with Boost and Ensure as they are more palatable and thought we would work our way through if they didn't work. Before we committed though we just tried one drink. When she saw it wasn't that bad we moved to trying one day and so on. It worked. In addition to EEN being just as good at achieving remission as steroids there is also evidence that it is better at achieving mucosal healing.

Good luck with what ever you decide. I hope the Mtx is her magic bullet!

 

[Sudsy]

Hi and welcome. So sorry you have to be here....We didn't use EEN with my kids but rather tried the Specific Carbohydrate Diet (SCD--there is a subforum on here). My kids' GI doc recommended it over EEN "because you get to eat food". Might be worth looking into. It's hard. EEN is hard. This whole rotten journey is hard.....

May your daughter soon find the path to good health.

 

[Devynnsmom]

Hi emma-myhero, welcome to the forum. I'm sorry you had to find your way to us. But you have come to the right place.
My daughter Devynn was diagnosed with Crohn's disease when she was 8 years old. They have since changed the diagnosis to ulcerative colitis. She is currently on sulfasalazine and although she is not in remission, shes doing ok.
You will find parents here with lots of information, ideas, and support. It's nice to be able to talk to people who get what you are going through.

 

[farmerswifey]

Hi and Welcome! You'll love the support here, lovely families with amazing children! xox

 

[kimmidwife]

Hi and Welcome,
Your story sounds similar to ours. My daughter was diagnosed in fifth grade. She was allergic to many of the medications. We tried EN but she wouldn't drink it and refused an NG tube. We were at our wits end when someone on this forum sent us a message about a medication called Low Dose Naltrexone. For us it has been our miracle. If you google it you can get a ton of info on it. It is an off label use for this medication. After you read up on it you may want to discuss it with your doctor. A lot of doctors do not agree with it but there are many who are open minded and willing to give it a try.
Even though my daughter is currently having some new issues all her Crohn's tests have been comings back normal. According to all her tests her Crohn's is finally in remission.

 

[emma-myhero]

holy moly.....thank you ALL for your prompt responses, support and advice!! i'm so relieved to have found this site!!! i'm responding to several replies in one message....i hope that's ok and within the forum's guidelines.

kimmidwife- actually, i had already read some of your posts a few days ago which prompted me to put LDN on the top of my list for the GI doc tomorrow!! even after 11 long months of this, i had never even heard of LDN until your post. i did some research and i'm all for it and i'm so encouraged to hear that your daughter has responded well to it. could you tell me how long it took to see results? do you mind if i ask what the dose is? thank you so much!


sudsy- wow, 2 with crohns and one with celiac....you must have the strength of a bull! did the SCD diet alone help with all of them?


crohnsinct- how long has your daughter been doing the EEN? has the response been as good as expected? is she still on the methotrexate? my daughter won't drink the ensure or boost because she has vomited them up and once that happens for her, she will never ever consider putting whatever came up back into her mouth. sorry if that's too gross. has she tried the peptamin? i've seen it online and heard it talked about here but don't know if it's going to taste similar.


twiggy930- thank you for your wonderful note with details and humor! it made me smile. i would love to have your son write my daughter a note about the ng process. i do think kid to kid is much better received! thanks for the ng tips...going to print those up and save them for later. still hoping to get away without the tube, but.....your story is encouraging.


johnnysmom- thank you for the inspiring words!


sascot- wow...going to high school with an ng. that's one brave and strong young man you have there! i absolutely know emma would never do that. i'm just hoping for nighttime ng feedings just to boost her weight. Modulen is what i have been looking for but they discontinued it here in the US. do they still sell it where you live?


my little penguin- thank you for the detailed information! i will look up the neocate, elecare and splash....had never heard of those. (well i know of neocate formula for neonates but did not know it was also made for pediatrics?) i'm amazed your son could drink the 8 a day. the most i could get emma to drink was 2. she got sick on both the boost and ensure so now she won't drink either. did your son prefer the taste of peptamin jr? did he try the boost and ensure? would you consider his CD as mild, moderate or severe when he was first diagnosed? i'm curious as to how many kids with severe cases such as my daughters responded well or achieved remission only through EEN.....


crohnskidmom- thank you for sharing your success story with methotrexate. that's definitely encouraging for me! i'm so happy your son is doing well on it. how long did it take to see results? any major side effects? my daughter responded with high fever, vomiting and extreme fatigue after first injection. after second injection, she was prescribed leucovorin rescue (5mg) 24 hours after the injection and she did better that week. tomorrow will be her third injection. i'm hoping to see better response soon....


jmrogers4- great to hear your son is doing so well! i'm curious what other treatments you tried in the 4 years he's had CD. had you done EEN another time in that 4 years or did he just respond to other therapies? and as far as the 504 plan goes...we've been working on it but response has been slow.

 

[Sudsy]

When my older dd was dx'ed, she started on strict SCD along with everything under the sun--prednisone, imuran, flagyl, omeprazole (I'm sure there are a few others I'm forgetting), plus she saw an acupuncturist. We figured we would throw everything we could think of at the Crohn's and hope it worked. Thankfully, it did!

She was on the SC diet for 5 years, two of which she was totally med-free with great labs. She is now 16 and off the diet as it is "too hard". I agree that it is very hard. Then again, nothing about having severe Crohn's disease is easy.....She is currently on Entocort (a type of prednisone). We'll see how she does once she's weaned off that.

We have a GI doctor here in Boston who is renowned for the success he has with kids on the SC diet. He has trained a nutritionist at the hospital to help him get families started on SCD, and has told me that he tries to get all of his kids with IBD to go SCD.

I hope your daughter is better soon. Sending support your way. This is a really rotten disease

 

[Mylittlesunshine]

Hi and welcome to this great forum
I'm so sorry to hear about your daughter
And what she has gone through this last yr

My Lucy is 4 and was diagnoised with crohns
When she was 3 years old.
We where on EN via NG tube but now we use
A mickey button, if it wasnt for EN I don't know
What we would of done.
My advice would be don't rule out EN as it helps
In many ways and you know your child is getting
All vitamins and nutrients they need and gives
Your body chance to heal.

I hope everything works out for you and
You find a med or treatment that works.
Please keep intouch and update us when u
Can x x

 

[crohnsinct]

My daughter just used EEN to help the Remicade het her to remission. She drank 10 shakes a day for 8 weeks and slowly reintroduced food. The EEN was our magic bullet and our GI was thrilled with the results. Her disease is mainly in her colon and reports back then were that it works better for small bowel disease but go figure! She even has a friend with UC who used it and it worked for her. Unfortunately, EEN typically only works while on it. Once it is stopped the remission will only last a while (differs by patient anywhere from a few weeks to a year or so). For this reason most GI's will want the patient to be on a maintenance med to maintain the remission as inflammation followed by healing leads to scarring and that isn't good.

For my daughter the Remicade alone wasn't enough to get her to remission and the long term use of steroids wasn't an option. So we used EEN to supplement the Remicade and it worked beautifully. Our plan is to hot any future flares with another course of EEN.

She has not tried any other formula but I hear that Boost and Ensure are the most palatable so not encouraging if she threw those up. BUT I would try again with another flavor maybe that will help get it down better. Maybe she was just feeling sooo poorly that she would throw anything up. Also, if she was full from eating and didn't have an empty stomach maybe that contributed? Maybe now it will be different..grasping at straws.

Some hints to get them down easier....serve them very cold, drink through a straw that way the formula bypasses a lot of the taste buds, keep them in a container with a small opening for just the straw so they can't smell it as much. Bribery! I took my daughter for a mani pedi after the first day. After that they were a weekly treat.

She was put on methotrexate for psoriasis and psoriatic arthritis but I have to say it has also really helped her Crohns and helped us move from a 5 week infusion schedule to a 6 week schedule.

Maybe also explain the science to her and the fact that she can avoid all the nasty side effects of steroids with the formula. I would want to give the methotrexate the best possibility to work and if the EEN helps get her to remission maybe the mtx doesn't have to work so hard?????

My daughter certainly wasn't jumping for joy about the EEN but once she started and started feeling better she was a fan.

She would also be open to emailing or facebooking with your daughter if she wanted. Just send me a pm.

 

[Jmrogers4]

jmrogers4- great to hear your son is doing so well! i'm curious what other treatments you tried in the 4 years he's had CD. had you done EEN another time in that 4 years or did he just respond to other therapies? and as far as the 504 plan goes...we've been working on it but response has been slow.

We've done Imuran, methotrexate and now LDN. The methotrexate actually worked really well at getting the disease under control he is just one of the very few that it caused lung issues in and we had to stop it. Imuran, we were probably at 90% of controlling disease just never quite there. LDN we have had incredible results - his last scopes in February showed healthy pink tissue with no disease activity and completely normal labs. We added supplemental EN at that point as he was so severely underweight and we had 4 months of incredible health and I think we would probably have still been there had he not gotten C-diff over the summer which I believe was caused by an antibiotic given to him for cellulitis he got from a bug bit. Which started a flare in August.
He absolutely did not want prednisone but agreed to a 5 day burst which we were hoping would be enough to let the LDN take over again and work. It didn't and he was given the choice of full course of pred or EEN and he chose EEN.
I will tell you the first time we tried supplemental EN (Pediasure Peptide) it was not pretty, we had a week of crying, gagging over the sink and about 2 hours to get one down. We poured it into a cup with a lid and a straw so he couldn't smell it which helped. We only got in 3-4 the first few days and he got used to it and can now drink them pretty quickly.
He won't drink Boost/Ensure says they hurt his stomach and make him feel like he is going to throw up.
I know you asked kimmidwife about LDN but I will chime in also - Jack takes 4.5mg every night and has been on it for a year and half. It does take a while to work anywhere from 6-12 weeks and then it seems to (personal opinion here) work slowly healing the intestines until all the sudden you can't remember the last time they complained any Crohn's symptoms.

 

[Brian'sMom]

Emma,
I was so worried about the NG tube also. I got so much good advice and support here about EN. I shared it with my son. Once he was on board...he just took charge and has had no trouble doing the NG tube. Your daughter has been thru soooo much that I think she'd have no trouble with it either. It's painless and an easy way to get the nutrition. My son likes the tube far better than drinking it. My son can relate to the drugs just not working. Someone on here said to me, You are doing injections and enemas...you can do this. I think once you are on board too...I also feel you guys can do it. Good luck. Please reach out if you have any questions.

 

[Tesscorm]

Emma, I've got to support the EN through NG as well. My son was older than your daughter when he did it (almost 17) but he also learned how to insert and remove quite easily, and was very comfortable with it within days. After his six weeks exclusive period, he continued with it as a supplement for two years. During this time, I did offer up the option of drinking shakes instead of using the tube but he actually preferred the simplicity of inserting the tube and ingesting the formula while he slept - he didn't want the bother to 'have' to drink a minimum number of shakes. I really believe he thrived on this. He's now away at university and didn't want to take the tube, pump, etc. with him so now he drinks 1-2 Boost shakes a day (but, this is only 15-25% of what he was getting when he was supplementing by tube - much easier to control/ingest when done overnight!).

 

[Jenn]

Sorry for being late to the party and to hear about your daughter's struggles. Welcome to the forum! I understand how you feel about tube feedings, but I hear they can be very beneficial. I hope methotrexate is her ticket to wellness, it can be.

I noticed you are not far from me! Feel free to private message, happy to share in gory details. Is she seen at Childrens? CCFA San Diego is great, we have joined in several walks and a couple of activities. The best by far is Camp Oasis, applications begin in Jan. I have not attended the support groups, but they meet at Scripps the 3rd Thu of every month. Check out their site here: http://www.ccfa.org/chapters/sandiego/

Your daughter may also benefit to reaching out to other kids, though not quite yet a teen, try: http://www.ucandcrohns.org/

Hang in there!
Jennifer

 

[CrohnsKidMom]

Emma-my hero; to answer your MTX questions... it took about 8-10 wks I think, for it to really kick in. He was still on Prednisone when he started it, so there was an overlap there. He did have some fatigue after the first few injections, but that gradually decreased. He feels a little nauseated after the injection, but I think it might be more psychological in his case. We were prescribed a heavy-duty anti-nausea med though, in case he needs it. I give the injection on Fri night at bedtime, so he sleeps off any affects. Our GI was having us do biweekly bloodwork to watch his liver enzymes, etc., but now we just have to do it bimonthly. I am sure your GI will monitor your daughter's levels closely, and if all is well there, maybe just a little more time is all she needs to adjust to the med. Take care!