Daughter with CD Frustrated & Scared

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Waitingtoexhale

Waitingtoexhale

Joined
Oct 22, 2012
Messages
4
I am new to this forum and hoping to find some form of support to put my mind/worries at ease... My 8 year old daughter was diagnosed with CD in August and the news hit us hard. We have had 2 healthy kids all of our lives! I am constantly feeling guilty, that it is my fault...
I am frustrated because I am in the middle of obtaining help from both Westernized medicine and Wholistic medicine. I am trying to following the regimens but frustrated because when we took her back for bloodwork/follow-up the results were getting worse! Hemoglobin/Hematocrit levels decreasing, weight is decreasing and the Doctor says she needs more calories and protein in her diet.
The wholistic doctor said absolutely no steroids and no dairy, etc...

Our 8 year old does not know she has Crohn's (we have not told her yet), however she obviously knows that "something" is going on with her... It is hard for us because she is already feeling like she is "different"... I constantly find myself crying and feeling bad that she is so tiny and I am terrified that what we are doing to try to make her better is not working and that she will end up with a colostomy or something... She will go for an MRE on Thursday and some Xrays to assess her growth development since she has lost so much weight.... I just wish that there was a group/support group for children with Crohn's... So she won't feel so isolated and alone...
I am looking to find some peace of mind... Soon....
 
I am all about incorporating a natural approach to maintain remission. There are many on the website that have used Enteral Nutrition (EN) and lots for you to read.

All that said, if she is getting worse, you may need to consider a "traditional" approach to stop the disease in its tracks. There are some kids that quite simply, require medicine to get in remission. Hopefully your daughter is one that won't have to stay on it forever....I respect that you feel strongly about that.

The CCFA website has some good information about Crohn's you can read with your daughter when you're ready. Sometimes giving something a "name" with your kids can help. It doesn't mean you have to tell her every possibility or overwhelm her with info. You'll get a feel for how much she needs. My daughter was 6 at diagnosis. She's 9 now and she knows basically that Crohn's disease makes her stomach hurt sometimes, she knows that she needs to eat healthy so she can grow (just like any other kid), she knows we go to the lab to make sure her medicines are working, etc. Sometimes she wants to talk about it and sometimes she doesn't. We try to follow her lead. Crohn's will never fully define our children but it is part of the wonderful, strong kids that they are. :) :)

I'll be thinking of you. I remember all too well being completely overwhelmed.... You'll find the right path for you and for your daughter. We'll all give you our two cents but ultimately, it's up to you to be the best advocate you can be for her.

BIG HUG!

Julie
 
Thank you sooooo much for your response... At least I do not feel alone. Your input is highly appreciated!!! Thank you so much xoxo and thank you for sharing...
 
I'm here for you. Trust me. I get it!!!!!! And you'll meet lots of us...:D

Hang in there.

J.
 
I second checking into the EN, AZMOM mentioned above. I'll tag Crohnsinct, imaboveitall, twiggy and Tesscorm as all of their children have utilized forms of EN.

It is all a bit overwhelming at first, I think I probably went through every second of my son's life after diagnosis trying to figure out what I could have done differently. In the end, I realized the only way forward was to learn as much as I could about this disease and all of the treatments(traditional and otherwise) so that I could be the best health advocate for my son.

His CD was fairly severe at the time of dx and we went straight to Remicade, he did well with the loading doses and it was great to see all the weight and life come back into my son. Unfortunately, we are still having to tweak the doses and recently added methotrexate in an effort to stop the inflammation, induce remission and hopefully limit scar tissue. Crohnsinct has posted some great info on clean eating and we are experimenting with that right now, all though when he has active issues low-residue seems to be the most comforting and provide the most symptom relief. Although, our next step will be EN depending upcoming lab results.

Hang in there, it does get better, the fear does subside considerably as you become more knowledgeable about CD and see the benefits of succesful treatments. I hope your little one achieves remission soon!
 
Hugs my son is 8 as well.
He was dx last year.
I was also going to only do EEN.
No other meds but the inflammation in DS's Gi tract had other ideas.
We started on pentasa and slowly over the past year have moved up through the drugs.
We also did EEN for 9 weeks.
We have used it at half dose since as a supplement.
DS drinks 3 peptamen jr with prebio a day.
It has whey no lactose but the proteins are semi elemental meaning the formula can be easily digested and absorbed by the first few intestine resting the rest of the gut.
DS drinks it all orally.
It does taste bad we had tears for a week but we treated it like meds .
Your GI can give you samples to try.
It is hard in the beginning.
It takes a while to figure out the meds .
Hugs
 
My heart goes out to you both!

I also go the natural route and so does my doctor. However his is quick to go mainstream meds if that's the best option to good health.

My girl is still undiagnosed. I've learned with IBD that SOMETIMES it's best to go with the "big" meds and bring under-control the disease than start going more natural if possible. The testing is key to make sure IBD is at bay and not doing damage.

My doc just suggested Aloe Vera Juice to help aid healing in her stomach. Works good for me and my heart burn. Haven't given it to Grace yet because I want to see where this is all heading. Also research is being done on K2 vitamin. Showing a lot of promise for healing in the GI track. Just some suggestions.

This is a great place to find support. Lots of info and help on this forum.
 
So sorry that your daughter was dx'd with crohn's. This is a great place for info and support. It is overwhelming to have a child diagnosed with a chronic illness. So much runs through your mind, sadness over the "normal"-ness they won't have and making decisions about meds/no meds....it stinks! That being said, our kids are very strong! I often find my son is comforting me over a bad situation, it shouldn't be that way, but he has the strength to accept and move forward.

Going the natural route is great, but it is important to get it under control as quickly as possible so the damage is minimal. We tried for months to go with a holistic Dr, but like you the symptoms kept getting worse. We ended up in the hospital and getting chewed out pretty good by the GI. Although Ryan is on meds, we do try to use the diet the holistic Dr had us on as much as possible and use several supplements/herbs. We also came out of the hospital on EN.

I hope your daughter gets some relief soon. Next summer, you should look into Camp Oasis

http://www.camptwinlakes.org/aboutus/camp_partners.html?gclid=CLDYrof2lbMCFQU5nAodzGkAkQ

or Victory Junction

http://www.victoryjunction.org/

Both have an IBD camp for kids where they can meet others that can relate to their struggles. Even the camp counselors usually have IBD of some form.
 
Hi waitingtoexhale and :welcome:

I am so very to hear about your daughter...:hug:...what a difficult and heartbreaking time for all.

You have been given wonderful advice already and I will add my support to looking into EN and safe and viable way of providing nutrition and in many cases intestinal healing and relief too. :)
Have a read through this booklet, it is very informative regarding IBD and nutrition...

https://docs.google.com/viewer?a=v&q=cache:MLANrN0VFsgJ:https://www.drfalk.co.uk/index.php/download_file/-/1555+https://www.drfalk.co.uk/index.php/download_file/-/1555&hl=en&gl=au&pid=bl&srcid=ADGEESiugnNci5FqFS7egKknPK0Faxvc869zUQeAUJ29XydVnlo6239rRdqjaTx9q8Nmv8FUkLynEJdh7-HOAQcYkfbOQql_-Zab142-la7Pit3TmmnuhsP9aJaD14i_s1zw2f2yF7Lk&sig=AHIEtbQax8F8A4JdXATNDJ2xZG5afV_UKg&pli=1

Where is your daughter's Crohn's located?

How extensive and severe is it?

Do you know what her inflammatory markers (CRP, ESR) are?

I personally feel that there are two very important aspects of dealing with this disease. The first is to keep and open mind, to not become so entrenched in one way of thinking that you block out all other options and opinions.
The second is to read, read and read some more. Question, question and question some more. To gain the knowledge to be the best possible advocate you can be for your child. Knowledge is power and that power gives you the confidence and ability to stand apart from the doctors and other health professionals and analyse a given situation independent of what you are being told. That's not to say you don't agree with what is being said but just that you are able to maintain a level control that is often difficult to find in these situations.

I would consider telling your daughter that she has Crohn's, at a level that you feel she is able to understand. I think to give something a name will allow open discussion and perhaps allay any fears of the unknown that she may be having.

It will get better Mum...:hug:...truly it will. I know nothing seems further from the truth right now. We all understand the guilt too. I have near driven myself crazy with guilt and trying to work out how both my children ended up with this disease. I have made endless comparisons and analysed to the nth degree only to come up with a big fat zero! :lol: I had no choice but to move on for fear that I would end up crouched in a corner, slowly rocking and plucking my eyelashes out one by one. :eek2:

Good luck hun, keep asking questions and welcome aboard!

Dusty. xxx
 
Hi and welcome. Sorry I am late to the party but looks like you have gotten top advice already. I also am a wholistic gal but want to caution you on trying to do both at the same time. In the field of IBD it is hard to find two medical GI's who agree on a course of treatment let alone find a medical GI and a wholistic doc who will agree. I admire you for looking at both approaches but perhaps after you have done your research pick one and go with it for awhile to save your sanity.

That said, I agree on the EEN option but even that does not have the full support of a lot of docs here in the US (although it is getting much better). My daughter did EEN as an add on to Remicade and it worked like a charm and I swear by it for her. However, keep in mind that while EEN has been very helpful at inducing remission, it has not been as successful at maintaining remission and many EEN users do resort to some sort of drug in the end or cycle on and off EEN as needed.

We are now on a clean diet and the diet seems to be helping our daughter tremendously. Even our doc can not believe the difference he has seen since we started but keep in mind she had been on Remicade for 7 months prior.

I am sure your doc has told you this but you did NOT do anything wrong. These things happen. Please do not beat yourself up. You are obviously a great parent. Look at all you are doing to get yourself educated and make the right decisions. I do second telling her a bit about her Crohns. Like azmom said, sometimes just having a name for what is going on helps. Also check with your nearest children's hospital or CCFA chapter for a kids support group.

Also, just food for thought, we didn't know our daughter had Crohns and then she just had diarhrea for two weeks and ended up in the hospital near death and malnourished. They told us the disease was quietly wrecking its havoc on her system and that untreated you can go a long for a long while and then are in a sudden serious state. I agree that if you go wholistic, make sure you continue monitoring blood and some imaging to keep a watchful eye on things. In the end we went with the heavy guns and are still on them but do everything we can to support them naturally and have used EEN rather than adding more drugs when those times came.

Good luck with the MRE and your decisions.
 
Hi WTE (LOVE that screenname) :D

Excellent, excellent advice above, YES to Camp Oasis, Violet went one year and loved it. It's quite inexpensive for five days of sleepaway and all, ALL the kids have IBD and MOST of the counselors do too. They have docs ON SITE the entire week and at V's, which if you are in Maryland will be the same region as we are, one of the docs had UC.

BIG YES to the enteral nitrition, formula feeds via NG/pump as V does OR drinking it if the kid can manage that.
I get all broken record-ish on here about it as it was /IS still such an essential element of V's treatment so I shan't go into detail here, do read my earlier posts for details or feel free to PM me.

I will say with firmness that under/malnutrition is rampant in this population and that is unacceptable to me when formula feeds can circumvent it. I shall never, ever understand why more parents do not avail themselves of it when they have underweight/underdeveloped kids.

NO (in MY opinion) to holistic medicine. As a scientist I need double blind studies to embrace a concept/treatment.
 
jmckinley said:
We ended up in the hospital and getting chewed out pretty good by the GI.
Click to expand...

Haha I seem to remember you doing your fair share of chewing yourself there jmk!

Aaah...look how far we have all come. Hang in there WTE...you will be looking back soon to! It does get better!
 
I'm just going to agree with everyone else :) Welcome to the forum, as you can already see from the responses, there are wonderful parents here who are fantastic at offering knowledgeable advice and support! :ghug:

I also strongly recommend EN. Even if you are unable to do EN exclusively (no food, formula only) to induce remission, it's still something well worth considering as a supplement. Here's a link to a thread, Kids on EN - I think you'll find lots of info here... http://www.crohnsforum.com/showthread.php?t=36345

Also agree about talking to your daughter. As was said above, you certainly don't have to give her too much detail but she could be imagining far worse :( When my son was approx. your daughter's age, we took him to a walk-in clinic for a truly 'non-serious' pain but something we wanted to check as we were going away. After the doctor's instructions, etc. the dr asked my son if he had any questions. My son asked 'am I dying?' :lol: Poor baby, my main concern had been if we'd need to leave a bit later for our travel, and he's thinking who knows what!! :eek:

Good luck at the MRE; I hope the results allow you to move forward in a treatment that will have her feeling better soon and that you are happy with as well!!
 
I'm so sorry you are going through all of this. I am going through the same journey as you so I can relate very well. My little girl was diagnosed in August 2012 with severe UC/ possible Crohn's. For a while I did feel as though I had somehow done this to her - maybe it was because I fed her too much processed food, maybe I should have spaced out vaccinations, maybe i should have nursed her longer..... the list went on and on. Therefore, I felt as though it was up to me to "fix" her - cure the disease. Even though I read and read I still thought if we could be Vegan, gluten free, organic only never eat processed food she would be healthy. I just about drove myself and family crazy but it was something I had to do or at least try. I've now had to accept that this awful, horrible, terrible disease won't go away how I'd prefer - naturally. I've had to concede that in some conditions medications have to be a part of the process.

I pray that during our children's lifetimes there will be a cure for IBD. Being the parent of a child with this condition is very hard and very lonely. Hang in there and if you need to vent you can always come here - the people are wonderful!!!! PM me if I can be of any help.
 
I just wanted to welcome you and say I agree with the others look into EN it is a good way to start. Also about support groups my daughter and another girl started one in uSt. Louis. If there is not be by you you may want to try to start one up.
 
Oh yeah...guilt...my daughter has Crohns because I didn't breastfeed her (pumped and fed back but got plenty of formula also) and she drank too much soda:shifty:..
 
Sorry to hear about your daughter's diagnosis. I would second all those above in going for the EN. My son was placed on the Modulen via an NG tube for 8 weeks exclusively and it helped immensely. Worth doing even at the same time as the other medications. I stuggle as well with the thought of the medicines, but I know that at some point we will have to use them.
I am surprised that your doctor didn't tell your daughter about having Crohns. They are really big over here about talking openly about these things with the children there, so that they can learn about their condition from the start. I don't blame you for not wanting to tell her but it might help her if what she's feeling has a name. I believe there is quite a good book on Crohn's for younger children to read, but I can't remember the name as my son is 13 so it was too young for him. Good luck with her treatment!
 
Kids pick up so much we don't think they understand.
My son whose 5 started to tears up and said I'll miss Gracie.
I said what in the world do you mean?
He said because she has to have her blood taken out.
My heart broke for him and made me realize I need to tell him more.
 
You should never feel like this is your fault. I started having symptoms when i was 19 and didn't get diganosed till i was 26. But no one in my entire family has an autoimmune disease or anything like ibd. In the beggining it was really hard to accept but as time progressed i felt better about having an illness.(more so when i started feeling better). I feel like everyone is different in some way and we all have our cross to bare.A support group is a great idea and i wish all the best for your daughter and family.
 
I would also like to welcome you to the forum! My little boy was diagnosed on July 8 of this year, a couple of months after his 4th birthday. When the doctor did his scopes and told us he was 95% sure it was Crohn's, I was blown away. He'd never been sick a day in his short little life. I knew enough about it then to say to the doctor, "This will never go away..." I started going through all the things that I had done wrong that could have caused it. It makes me tear up to think about it; I still have feelings of guilt. I think it takes quite a while to come to terms with it, so give yourself some time. It has helped me to research as much as possible so I feel better equipped when something happens and when he goes for follow-ups with his GI. You are NOT alone in your guilt and I think it's normal as a parent to feel that way.

I detest doctors and hospitals (home birth for me! That's a story in itself!), and I totally believe in food as medicine (clean eating here, perfect 10 diet), and I really worry what the meds do to his body. However, I know that for him to get better, he has to have medicine that is proven to work. Diet, supplements, and the like I think can help the meds to work more efficiently. Our wonderful Dr. C listened to my concerns and said that he understood. He's been great about starting with less potent medications and working his way up to find what works, and working to get him off his prednisolone as soon as possible (which he was done with a couple of weeks ago). He had lost 10 pounds and has gained that and a little more back. He still doesn't have a lot of energy sometimes, but he isn't in pain like before and he is more his old self. Currently he takes 6MP, ranitidine (Zantac), iron supplement. He was on Pentasa, predisolone, ranitidine, 6mp, and Canasa suppositories all at the same time, some several times a day (I think I'm forgetting something, but maybe it just seemed like more). He also had a terrible infection on his arm that we had to deal with (not CD related, but sticker related-another story!). I forgot to mention that we are dealing with CDiff still (second round of meds) and A. Hydrophili so he is taking Vancomycin 4 times a day, which we will reduce to twice a day on Thursday and add Bactrim to that twice a day. I also give him Culturelle and I've been trying to get him to drink kefir every day (next to impossible, but I'm not giving up!)

I still worry about all of these chemicals going into his little body. And I still wonder what I could have done differently. But I know that I'm doing the best I can to help him go into remission and stay that way. You will find some awesome support here and I mean awesome. They have put up with my questions and rambling (can you tell I don't get to talk to adults much?) and have been nothing but supportive. Knowing I can encourage others helps me to count my own blessings, too. Sorry to be long-winded, but I could see myself in what you posted! I will be praying for you and your family :)
 
Sorry to hear about your little girl.
I also beleive you have to tell her that she has crohn's.
My daughter was 14 when she got diagnosed and all the specialist told us was she has crohn's. He never explained anything. I kept asking questions and all he said was we will talk next time. Next time never came. It was up to me to do my own research into this disease i had never heard of it in my life.My daughter at the time thought well i just have to take tablets for awhile and i will get better. Little did she know that she was on medication for life. I don't think she did any research on her own so it was up to me to explain everything.
I didn't know how to let her know about this disease but everyday i would mention a little bit about the disease. It took awhile but she has accepted that she has crohn's.
Your daughter is a lot younger so take things slowly....:hug:
 
THANK YOU TO EVERY SINGLE PERSON that has posted a thread on here... This is definitely a tough time for us right now... We are doing the best that we can right now. I am having a bit if problems with the ulcers in the back of her throat... Does anyone have any suggestions as to what I can do to relieve her pain? Is there an over the counter remedy for relief or a natural/wholistic suggestion? Thank you...
 
I think mlp had an over the counter swish to relieve ulcer pain. My son uses a mix of carafate/lidocaine/malox. Also, you may want to look into Oil of Oregano. You can mix it with water and do a swish of it as it is an anti-inflammatory and should help in healing. My son didn't find relief with this but other kids on this forum have, I believe.
 
We used a 50-50 mixture of Benadryl/mylanta.( 5 ml of each)
Swish and spit.do not swallow.
It helps numb the area.drink plenty of water .
If it gets too bad and fluid intake is limited make sure you call the oncall Gi.
We were told to go to the er in that case. We were also told to try and see the urgent care ped in our area just so an md could evaluate him.

Good luck
 
The ulcers are a manifestation of the Crohn's. So it will be difficult to get them under control until her Crohn's is in remission.

Be sure her doctor knows she has them. Ask the doc if they have any suggestions or meds to help and I would run the benadryl mixture by them although I think it sounds OK. The mylanta will help a little.

There are topical numbing agents they can order for her but, having used those myself, they have their own unpleasant side effects and may not be worth it.

If you have not moved her onto an all liquid diet yet then this is the time to do it in my opinion. Have you discussed this with her GI doctor? What is her current treatment plan?
 
Sorry we haven't had to deal with mouth ulcers much, so no real advice there. I would think a pharmacy would probably be good to ask for advice. Hope you manage to get it under control as it can't be pleasant for eating/drinking.
 

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