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Dealing with a 10 yr old granddaughter with crohns

Hello everyone!
My first time here and also my first time ever doing anything like this. I first heard about crohns a few years back when my aunt told me about her grandson being diagnosed. I could hear the fear in her voice as it cracked when she told me. She, nor I had really any clue to what it was. I was faced with that same fear earlier this year when my 10 yr old grand daughter was also diagnosed with the same. After going through some issues with stomach pains, we thought that she may be lactose intolerant like her father. One day I walked in on her in the bathroom and noticed blood. It was not a lot of blood but was still a concern. I asked her about it and she really thought nothing about it as she said it has happened a few times. I alerted her mother who made arrangements to have her checked out. Thus the road began! She went in for a colonoscopy in December, just after turning 10 years old. She was diagnosed in January and so the medication started. She was doing pretty well with some minor flair ups until this past week where she was so bad that she was admitted to Joe DiMaggio children's hospital and was found to be anemic and dehydrated. She had been going to the bathroom over 15 times a day. After 4 days in the hospital she was ready to come home only to be constipated now. What a roller coaster it has been. That is where we are now. Her mother makes her lunch to take to school everyday now. We always ask her how she is feeling and sometimes she says her stomach hurts a little. I am presently on the look out for a book called Beating the viscous cycle. We have been to nutrition food stores (Very Expensive) and picked up a few things. It would be great to know what lunch box, breakfast foods and dinners that she likes we can make for her. I have the bland, the fiber free, the SCD, and a few others that we are working on. I feel like I am still lost! Well that's my story. Thanks for hearing me out. Any and all suggestion would be greatly appreciated! :)
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Hi and welcome to the forum! I know how scary it can be seeing blood (even if it's not you that it's happening to). There are many others going through the same things you are. We have a wonderful section on here called: Parents of kids with IBD. This is a place where many of our parents get lots of support. A good friend of mine, DustyKat (who is a part of this group) I'm sure will be here shortly as well.

We also have a Teens Only part in our Support section. This is where our teens support each other and talk about their fears. emmaaaargh is part of this group and even though your grand daughter is 10, I'm sure she would welcome her and encourage her to talk to some of those in this area as well.

As you can see, there are many places on here for support and information. I hope you'll feel free to look around on here. Please let me know if you have any questions. Take care. :hug:
 
Hi and welcome.
I'm sorry I'm just seeing this.
It's so hard being that young and having this.
You sound like your doing a great job Grandma on trying to help her.

Diet is one of those things. It will work for some and not for others. I do believe it should be tried. and we should all be eating healthier.
We have a wonderful Parents section on the forum. Please come join us. PRESS HERE!
It's open to Grandparents and guardians as well.

HUGS
 

emmaaaargh

Moderator
Staff member
Hello and welcome to the forum! :)

I'm sorry your granddaughter was diagnosed so young. I was 9 when I was diagnosed and pretty much all I remember was how busy everything seemed! You sound to me like you're doing a fantastic job, especially as far as diet is concerned. I know how it feels like you're lost now, but please believe me when I say that sooner or later (hopefully sooner! :tongue:) everything will start to even out. Please do take a look around the forum and don't be afraid to ask us any questions you might have.

I wish you and your granddaughter all the best! :)
 

my little penguin

Moderator
Staff member
Welcome
Second looking into the parents group
My son was dx at age 7.
Enternal nutrition is a great added option for these kids to do in addition to their normal meds.
It helps with growth and nutrition.
My son drinks three peptamen jr a day .
 
Welcome! have to agree about parents section, my son was also 10 when he was diagnosed he is now 14.
What meds is she on now? You sound like a wonderful supportive grandmother and she is very lucky to have you.
I agree with MLP on the EN my son does this as well and has 2-3 a day to supplement but just came off a short time of exclusive enternal nutrition as he was having a slight flare. It gives the bowels a rest as they do not have to work as hard to process.
 

DustyKat

Super Moderator
Hi Jo Ann and :welcome:

I am so very sorry to hear about your granddaughter, bless her. :heart:

Diet is a very individual thing, much like many things with disease!, and you have already been given fab advice about that. One piece of advice I would give is to keep a diary, in general, when flaring which includes food...

http://www.crohnsforum.com/wiki/Diary-Inclusions

I would ask to...what medications is she taking and where is her Crohn's located?

Good luck and welcome aboard!

Dusty. xxx
 
Thank you very much for all you good wishes and help and concerns. I haven't had the chance to get back as she is back in the hospital again and now they say her crohns is a very aggressive one. She went back due to a cyst that formed and they didn't want to do anything before they ruled out a few things. They have been giving her antibiotics intravenously and now they have switched that up. They want to put her on remicade now and I have looked this up and the side affects are very disturbing to me. I am also reading something I found on the internet from a Dr. Dahlman in Ohio who specializes IBD. Hyde Park Holistic center. Has anyone heard of this. I am about 1/3 through the reading and it is making sense to me. I forgot my password and name to this but have since written down where I can find it! OMG, this is blowing my mind! I am on a mission now and if any of you have any suggestions for reading, research or helpful information please let me know.
 
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Every drug is scary have you read the side effects on a bottle of tylenol? It is a difficult decision to make with regards to all the medications. Untreated/under treated Crohn's can also cause a lot of damage.
Try not to rule anything out, remicade has helped many on her get their life/child back.
I have not heard of Dr. Dahlman, I briefly looked at his website and it seems like a lot of money for vitamins and probiotics.
The most important thing is to get the inflammation under control so it does not continue to cause damage.
You may want to look at LDN, my son is currently on it. Here is the link to the LDN page http://www.crohnsforum.com/showthread.php?t=31142. There have not been many studies done. It does not have as many side effects.
We know these are difficult decisions to make and you have to do what you feel is best for you and your family. Sending loads of support your way.
 

rygon

Moderator
Yes remicade and other drugs seem to have bad side effects, but so has crohns when not treated properly. I take drugs but also rely heavy on my diet. Everyone is different unfortunately and one diet program will not cater for all.

Ive had a look at that website and I'm guessing the information given is freely available elsewhere (look for paleo or SCD diets) and I'm sure you could also buy the same stuff for much cheaper if that's the way to go. (I hate website which you have to join up just to find out what they are trying to sell, normally means a scam of some sorts).

He isnt a medical doctor either, actually what he says on another website he isnt a doctor at all as he only has a degree in nutritian. http://www.ibsgroup.org/forums/topic/48700-what-are-dr-dahlmans-credentials/

Just remember that the internet is not regulated like physical shops and the "it cant hurt to try" mentality is definitely one you cannot adopt, as I have seen poisons that have been on sale which supposedly cure IBD (as well as many other problems and diseases).
 
rygon, I even noted on that site he makes statements against SCD:

Specific Carbohydrate Diet has two potential shortcomings: The Specific Carbohydrate Diet is both too restrictive and not comprehensive enough to address all the common gastrointestinal complaints.
Also I saw in some blogs where he talked of curing CD. The closest it came on his site was this:

A cure for Crohn's Disease can be accomplished as it is Dr. Dahlman's opinion that Crohn's Disease can be completely reversed. No symptoms, brought to a conclusion without the requirement for medications and it never comes back.
Of course, we can't get his regimen without first paying for a consult and some food allergy test is also recommended as then apparently you purchase his products, supplements and so on...seems a little fishy.
 

rygon

Moderator
Yes totally, especially seeing that food intolerance testing is a waste of time

Should I still take a test for food intolerance?

No, do not be tempted to do this. Recent NICE (National Institute of Clinical Excellence) guidelines recommend AGAINST tests such as IgG testing, Vega testing, hair analysis and kinesiology because the results are unreliable and not based on sound thorough scientific evidence.
http://www.allergyuk.org/food-intolerance/identifying-your-food-intolerances

and food allergy testing should only be done at licensed places and not at home/via post
 
I tried to personally talk to some of you but I guess i am still to new to this and my post was not allowed. I don't even know how I was able to find this area of the forum again. I will get it!
 
I'm sorry she's back in. Poor dear.:hug:
I am also holistic in approach so please remember that when I say this.
Aggressive Crohn's is called that because it's aggressive.
The body is attacking it's self and isn't stopping.
Sorry not trying to scare you.

We had to get my girl's colitis and other disease under control before more damage took hold. Once she was in remission then we use a more holistic approach for her.
We still use meds like LDN.

FIRST - Stop the progression = Meds that can do the job
Second -Then help the body stay there = meds for remission and or holistic approach.
There's no cure for this. TRUST ME I LOOKED!
There is HOPE, she will be back to the cute grandbaby you knew.:kiss:

Hang in there. We're here for you.
 

my little penguin

Moderator
Staff member
When Remicade works - it is truly a miracle
my son was on it for 8 months and we almost forgot he was sick.
which is more than i can say about all hte various other drugs.


there are risks to everything
riding in a car risk of dying for those under 14 is 1 in 250
swimming- risk of drowning 1 in 1000
and the list goes on..
the difference is no one is showing us the statistics when we take these
risks with our children daily.

the risk of t-cell lymphoma is 2 in 10000 for anyone on the street.
adding remicade + an immunosuppressant is does double but only to
4 in 10000.


seeing my child run and play and not be in pain priceless .


hope it works for her.
 
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