Daughter just diagnosed at 14- advice from kids or their moms

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55555jlw
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Date Joined Dec 2008
Total Posts : 103
   Posted 12/22/2008 7:10 PM (GMT -7)   
My daughter is 14.5 years old.  She has lost nearly 6# since last month.  She eats, but isn't absorbing any nutrients.  I have crohn's too, am 38 and it is mild and controlled through meds and strict diet (maybe luck). 
 
They ahve talked about having her stay at the hospital to give her IV nutrients and meds.  The diagnosis was severe Crohn's.  It is everywhere.  She doesn't complain, but told me a couple weeks ago that she had blood in her stool for 5 weeks! devil    I wish she had told me sooner, but that is a teenager.  She thought it would pass.  Pediatrician said not to worry, nurse suggested we go to a specialist.  I am sooo glad we did.  She is down to 75#, I can't imagine what would happen if we hadn't sought further testing.
Any advice from moms of kids with Crohn's or kids with Crohn's?
I wonder why she just started having problems so young.  I was an adult when diagnosed.
 
Many of you are on so many meds.  What makes one patient different from the next with flare ups and medicines?
Thanks,
Jennifer

LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 12/22/2008 7:33 PM (GMT -7)   
What a question...I wish we could tell the difference. It might be easier to fix things then...
I was down to 97 pounds a couple of months ago and had to have two blood transfusions and a week of 24/7 intravenous fluids due to the blood and fluid loss.
During that time I drank a lot of ensure and boost shakes for the extra calories and vitamins(or what my body could absorb). I was also given steroids via IV and that seemed to help jump start things to where taking them in tablet form would ease the inflammation and give extra energy as well as the ability to eat(albeit a very soft diet). It took a few weeks for the bleeding to stop but it has for now so you might look into those.

What kind of medication is your daughter on and what does her diet consist of?
I understand about not telling anyone about the bleeding...I had it on and off for four years starting when I was fifteen years old and never told anyone until I ended up in the hospital. That really is being a teenager for you hah...

In any case, I hope you guys find the best solution for your daughter. I really wish the best to you both!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/22/2008 7:42 PM (GMT -7)   

Thanks so much for the reply.  We just got home from her colonoscopy a couple hours ago.  Had a strange day.  This mornign the hosp. called and her doc. was out ill, so they had another doc perform the procedure. (he specializes in IBD)  He suggested she stay at the hospital and do as you suggested, jump start with iv fluids/nutrition/prednisone/ and antibiotics.  He called her original doc and she wanted to wait until tomorrow to review the pictures and prescribe something herself.  Since it is Christmas, they thought she could go home and maybe come back if necessary.  She is so little and weak.  She has never been energetic, never had the energy for sports.  I am hoping they get her back in and get things rolling. 

Strangely enough, she hasn't complained much about pain, except for her rectum which is also inflammed and *****.  The photos were disturbing.  Much worse than mine- inflammation everywhere and ***** cankers. 

We shall see what the docs suggest.  I hope my daughter finds insight to this illness through this board.

God bless ,

jennifer


LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 12/22/2008 7:50 PM (GMT -7)   
I'm so sorry that things are so severe, but I am really glad that you guys were able to get her in!!! She sounds like she's been really strong and I imagine your support has been wonderful. You sound like a great parent...from my own experience it counts for so much in getting better..I don't know where I would have been without my mother.
Please, keep us updated! And I'm sure there will be answers for you and daughter on this site :) As well as many people who would love to help. Best wishes to both of you!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 12/22/2008 8:16 PM (GMT -7)   

Jennifer,

I'm so sorry to hear about your daughter's diagnosis.  My son is 14 1/2 also and was diagnosed with CD at age 11.  This site is great - lots of information, support and advice.

I also wanted to let you know about another website that is specifically for parents of kids with IBD.  It's another great resource  - basically the parents there have been through it all and can tell you what to expect.  The website is  http://www.dragonpack.com/ibdsupport/parents/index.html

Hopefully the link will work - I'm not too computer savvy.

Take care,

Nancy (son Ben,14,CD dx 3/06; double Remicade, Asacol, Multi-vitamin)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/22/2008 8:17 PM (GMT -7)   
I've never had much pain either. My main symptoms have always been weight loss, bleeding (usually I can't see it but enough to drop my hemoglobin) and fatigue.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 20mg prednisone. Udo's Choice Probiotics (30 billion).


Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.

Tried SCD, didn't work, now avoiding gluten and dairy.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/23/2008 4:09 AM (GMT -7)   
Hi I hope they start getting some treatment going for her today as you said she has lots going on in there and it must be very hard for her. Please let us know how things are going. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 12/23/2008 6:11 AM (GMT -7)   
How is she feeling??  Good luck with everything.I have had IBD for about 9-10 years now,and I flare by weight loss.My almost nine year old goes to see a Peds GI next month,he is having some cramping,and has had a few episodes of "seeing blood",his Pediatrician did lab work,all normal,but his sed rate was 18,so ofcoarse that is a "marker",and I always had a elevated sed rate.
 
Best of luck wink

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/23/2008 6:30 AM (GMT -7)   
Hi Jennifer... my son was diagnosed shortly after his 15th birthday. He'd been anemic for a year and a half and we were going from doctor to doctor trying to figure out why. Then he had a classic flare with blood and the rest is history. Thankfully, he is doing very well now; continues in his sport, has gained back his weight, etc., but he follows the SCD very strictly. He takes several different supplements including probiotics.

I'm so sorry your daughter is going through all this! But as someone else here said, she is so fortunate to have you who really knows what it's like to deal with CD... I hope she feels much better really soon!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/23/2008 8:04 AM (GMT -7)   

THANK YOU ALL FOR YOUR POSTS. turn   VERY HELPFUL AND INFORMATIVE.  DOCTOR HASN'T CALLED YET THIS MORNING TO ADVISE ON MEDICINES.  WE ARE WAITING. 

I HAVE HAD SUCCESS GETTING THROUGH OR HEALING FROM A FLARE UP WITH THE MEDS, PRED/PENTASA/ AND ANAMANTAL FOR RECTAL AREA.  I ALSO FOLLOW A STRICT DIET OF nono NO DAIRY/ WHEAT/ NUTS/POPCORN/SKINS OF FRUITS/OR RAW VEGGIES.  IT SEEMS TO HELP.  I AM CLUELESS ON PROBIOTICS AND SOME OF THE OTHER MEDS AND THINGS YOU ALL MENTIONED, BUT I WILL CHECK THEM OUT.

I DEEPLY APPRECIATE EVERY POST.  THANKS SO MUCH FOR SHARING YOUR STORIES, HELPFUL ADVICE AND SO FORTH.

MERRY CHRISTMAS AND GOD BLESS. smilewinkgrin

JENNIFER

(AND DAUGHTER MARIE)--  yeah SHE IS ADDING ALL THE ICONS- ENJOY


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/23/2008 11:34 PM (GMT -7)   
Thanks for the update! I hope you guys get an answer soon.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 12/24/2008 9:57 AM (GMT -7)   

Hi Jennifer,

Well I'm not a Mom. I hope you don't mind input from a Dad. I usually don't reply to posts very often, only because there's so many on this forum with way more experience and knowledge than I have. I usually leave it to them. Since I'm in a similar situation with my 15yr old daughter, I'll try to offer some advise. 

It sounds like you've already done the right things for her. A good GI is mandatory. You need to have faith in who you decide on. I wouldn't be to worried about the extent of the disease right now, as when being diagnosed for the first time means the disease has had perhaps years to get to this point. I can only guess that they will likely prescribe 8+ weeks of Prednisone to beat the disease into remission. You will read alot about side effects to this, but try to remember that alot of it is rare to extremely rare. Prednisone can seem like a miracle cure for some, but a maintanence drug will likely follow. I woiuldn't worry about her slightness or size either as once the Crohn's is under control, usually everything will start to catch up. My daughter grew 6 inches in 6 months. Puberty is usually delayed as well, but again, will come normally. 

The only other thing I could tell you is, you've come to the right place for help and advise. There are some really great people here that can answer some of the most difficult questions. Good luck with everything.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/24/2008 12:54 PM (GMT -7)   

Thanks and God Bless You.

Your insight is so helpful and settles my nerves a bit.  She will be so happy when I tell her she has a chance to grow- shortest in her class adn obviously hasn't hit puberty.   yeah

 

Jennifer 


CrohnsKasey
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/26/2008 8:19 PM (GMT -7)   
Hi Jennifer,

So sorry to hear about your daughter.

I was diagnosed when I was ten but I had been sick long before then. I didn't complain or tell any one about my symptoms because I didn't realize anything was off. I think that sometimes when you are in so much pain all the time, you think its normal.

I was down to 48 pounds and my pediatricians thought I was anorexic. They were obviously way off. I don't know if i would be here now if it weren't for my mom. She had to push the doctors so often. She made them put me in the hospital and do tests and thats when I was diagnosed. And since then, every time I have had a flare up and GIs act like its no big deal she has stood up for me to get the treatment I needed. There are no pediatric GIs around here so it was really hard.

I think it is awesome for your daughter that you know what she is going through and can relate. So many of us are on here because we don't no anyone in really life going through what we are.

Steroids have always helped me kick flare ups into remission but the side effect depress me. When I was diagnosed I went from 48 pounds to 80 in a few months because the prednisone gave me my appetite back and puffed me up.

Just be there for your daughter and talk about symptoms and med side effects. I think it helps so much just to talk to someone about it. Especially a mom who had been there. :)

55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/26/2008 9:47 PM (GMT -7)   
Oh, thanks so much for sharing your story.  I appreciate everyone's input, history, and well wishes.  I am unusually very open and honest with my kids  adn have had good converstions with my daughter about what to expect from the prednisone; more energy, better GI health, and possible mental side effects (as well as facial swelling). 
Depression runs in my family as well as anxiety disorders, so I am very watchful of my kids. I don't want them to suffer like I did for so many years when they could have the chemistry in their brains fixed with some meds and feel "normal". 
My daughter is hoping to gain 10# over Christmas break.  She is up 2#, to 78#, occasionally 80# at the right time of day.  So she is on her way.  Her appetite is so much better than it was just a couple weeks ago.  I am so anxious to get her biopsy results back on MOnday.  The nurse will call me. I will post what I learn.
Thank so much for your kind and helpful words.
Jennifer

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 12/27/2008 5:11 AM (GMT -7)   
Hi Jennifer,
 
Just wanted to share more of my own experience, and what I've heard over the last couple of years as well. I too was so worried about Prednisone side effects. Particularly the common moon face that seems all too common. When first diagnosed, usually younger ones are pretty emaciated. As you had said, your daughter was losing weight steadily. I think you'll find that the effect on her face will be minimal. I actually thought my daughter looked better, even with the slight effect on her face. No one really took notice. It would be more predominant if you allow her to just eat and eat and gain way too much weight. Try to keep her eating to low residue foods and the healthiest choices possible. Watch the avoidance foods.
It will be interesting to see what the result of the colonoscopy brings. Most seem to have Crohn's localized to a particular area, but some can have it much more spread out. A co-worker's son, (15y.o), was diagnosed about a year before my daughter. His Crohn's was everywhere. After an initial round of Prednisone, he was prescribed Pentasa. He has had no recurrence, and has been taken off Pentasa, and is thriving. 
As I indicated previously, don't worry about he size, as Crohn's can block nutrients from being absorbed. Once the inflammation is clear, everything starts getting through and she will really thrive. The one thing you might want to pay attention to is, her blood tests. I can only guess, that she is very likely anemic. Very common. This would explain why she doesn't have energy for sports and such. They will likely want her on an iron supplement, (Palafer). It takes quite some time to get the iron stores back up though, likely 6 months or more, but will make a huge difference in her energy levels.  
Good luck, and keep asking questions, as I said, the people here are really good.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/27/2008 7:50 AM (GMT -7)   

Thank you so much for sharing your experience.  I learn more and more every day thanks to all the wonderful people on this site.VIEW IMAGE

WHAT ARE LOW RESIDUE FOODS?

God Bless You,

Jennifer


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/27/2008 8:20 AM (GMT -7)   
Here's a nice link put together by a medical center on low residue foods:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/LowResLowFiber.pdf (copy and paste into your browser)

Be aware that the high amounts of refined carbohydrates (pasta, breads, etc.) which are recommended on this diet break down into sugar in the gut. This diet is in direct conflict with the Specific Carbohydrate Diet which eliminates these bad carbs so as not to feed the bad bacteria in the gut.

Not wanting to stir up controversy here on diets; just simply want to make you aware there are different schools of thought as to which is better for Crohn's.

Best wishes to you and your daughter!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/27/2008 8:35 AM (GMT -7)   
Thank you, I will research both and go with my gut,---:) yeah
I have actually been using the low-fiber low residue diet without realizing it for 8 years and it has helped my symptoms.  Took me a long time to quit pouting about the foods I couldn't eat, but it is so much better to just feel healthy. 
JEnnifer

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/27/2008 9:07 AM (GMT -7)   
Hi Jennifer and welcome to Healingwell. I agree she should probably be on Pred right now, that has always been the best medication to get my flares under control quickly. And hopefully she will be able to add one of the 5-asa's meds (Pentasa, Asacol etc) to compliment it and get it under control quickly. I was 18 when diagnosed and am now 51. She was diagnosed at the average age most are. The second age is usually after 30, but the most common age to be diagnosed is in the teens. I hope you will keep her on some type of maintainence med. I live on a low residue diet and you will need to see which diet is best for HER. Many have success with the SCD or Makers Diet, but they are also very strict diets, and sometimes teens have problems with these strict of diets, also they don't work for everyone, but for some they do. If you google a low residue diet you will get an idea of foods that are allowed. I eat alot of fish, chicken and turkey. Easy to chew, easy to digest foods. Stay away from pre packaged foods as these usually have alot of preservatives and aren't really good for us. She is lucky to have a Mom who understands exactly what she is going thru. But hugs to you Mom as just like any Mom with Crohns you would never wish this on your children. Good luck and keep us posted.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


mchaz
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/30/2008 9:10 PM (GMT -7)   
So sorry to hear what you are going through. My son was diagnosed at 8 and is now 10.

I know that for him the hospitlizations have helped. The IV meds and the fluids really seem to speed up his remission.

His flares do not seem to have any logic either. The older he gets the more discreet he seems to get as well. We have full confidence in his GI doctors and we travel an hour and a half to Philly for them.

It is so hard for our kids to have to go through this, and all we can do is pray and be patient.

One time they had to put him on Prednisdone and he ended up having steriod physcosis during withdrawl and I felt so bad. I know that I can never put him through that again, but I needed to try.

I will pray for you and your family.

55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 12/31/2008 7:12 AM (GMT -7)   

Thaks for your response.  Thank you also for you for prayers. 

My daughter has been on prednisone oral pills for 9 days.  I believe her energy level is maye at the best times of day 20% improved.  Her energy level seems to fluxuate quite a bit during the day.  Sorry about your son and his post prednisone problem. 

Now I am wondering if my 12 and 6 year old have it too as they have trouble growing, gaining weight, but no blood in their stools or diarrhea.  So, I will probably wait until one of those symptoms develops, or have them get a blood test to test for IBD.

God Bless You too,

Jennifer

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