Daughter age 11-severe Crohn's

[SCD+LDN]

My daughter was diagnosed w/ severe Crohn's Sept. 2010 on her 11th bday. She was put on Remicade while in hospital 8 days end of Oct. She started SCD diet Nov. 1st. The 2nd and 3rd Remicade infusions caused anaphylactic reactions so they stopped. Her Drs. want her on Humira, but we're holding off, since her labs have been perfect since Dec, (except for Calprotectin which ranges from 67-261.) We use monthly Calprotectin tests to check inflammation which could predict potential flares. Her only symptom since Nov. has been soft stools.

We sent a blood sample to the Johnne's testing Center to test for MAP. It takes a year to grow in a petri dish.

She started LDN 3 weeks ago with no side effects. I watched the hour interview w/Dr. Bihari, Harvard MD who discovered using Low Dose Naltrexone for autoimmune diseases, etc. Very interesting and convincing.

She also takes SCD legal probiotics, Vit. D, and Cod Liver oil. Her Drs. say she will likely have a flare soon, but they also say they're laughing at her perfect labs. We don't know if she's growing since it takes so long to measure progress. My husband is concerned that her hair doesn't look healthy. We've been taking her to get Vitamin I.V.'s ev. 2 weeks. She feels fantastic so far, and we're thankful.

 

[Misty-Eyed]

Hi and welcome to the forum!

I'm glad your daughter is feeling better these days. She's lucky that there's these newer treatments around to treat her with (remi and humira). Back when I was diagnosed I was on steroids for years and it wasn't good.

In the end I kind of got better by myself and I found the other side of adolescence. I had been so ill for so long that it was amazing to get through to the other side and go off to university like the rest of my peers. There is always light at the end of the tunnel!

Also, although it may be distressing to see your daughter in pain etc when she's ill, I'm actually kind of glad that I was diagnosed when I was so young. It's enabled me to adapt to living with crohn's. It's certainly not something I'm ashamed of or bitter about. It's made me a stronger person

Also there is a parents forum around here which you may find helpful. I'd link you of I wasn't on my phone!

 

[crazycanuck]

I too am glad she is getting better now. I really feel for the parents on these forums as I remember what my mom went through after my diagnosis. I'm sorry you and your daughter have to go through it but it sounds like things are going well now which is great and I hope she continues with that forever.

These forums are a great resource and welcome to them.

 

[Dexky]

Welcome!! I hope you give us a better name than SCD/LDN My son's GI is at Vandy. He also turned 11 last Sept. He is on Humira for a couple of months now w/o incident. I hope LDN works out for your girl. Have you found yourself losing weight with the SCD??
We tried that for a while and I lost nearly 1/4 of my body weight over a six month period!! I just couldn't imagine my son being able to grow while on it. Good luck, I hope you stick around!!

 

[littlefreebird]

hi, that's great your daughter is doing well, it's so important at her age to get the disease under control while she is developing, i was diagnosed when i was 10 and i'm now 21, i'm thankful that after all the years of flaring, i managed to maintain remission at 15 and finally went through puberty.
can you state what scd and ldn stand for?

all the best. hannah.x

 

[adkplunk4]

My Daughter and My son and I have crohns. My daughter was 9 when she was diagnosed and she is now 14. She is on remicade and is doing very good. I am glad your daughter is doing well. I also have been on remicade for about 10 years and that is the only medicine I am on.
Sincerely
aplunk

 

[SCD+LDN]

Thank you so much everyone for your encouragement and replies. There are so few people in my world who even know what Crohn's is-so good to hear from you.

I picked SCD+LDN as a user name since my daughter is on the Specific Carbohydrate Diet (SCD) and takes Low Dose Naltrexone (LDN) so if anyone sees it, is doing the same, and wanted to reply.

Michelle and Hannah, great to hear you got better with time. Malabsorption is our biggest concern. My daughter stopped growing for a while, and we're trying to monitor her growth now. Did any of you have growth issues, or did you catch up? How did you know you were in remission? Did you continue to have soft stool even while in remission? (Hope my questions aren't too personal. Trying to figure out if she still has malabsorption.)

Mark- My daughter has gained 12 lbs on SCD and I've gained 18! (We both needed to gain weight.) It's nutrient dense, including lots of good healthy fats. There is a Chef here, Shane Kelly who has been an enormous help, as well as Benjamin at, the new Community Supported Kitchen, Feast Together, in Nashville. I read many of the 235 reviews on Amazon.com for Breaking the Vicious Cycle, and the tremendous results people have had on SCD after trying so much else with no help. We too go to Vandy GI and also got a 2nd opinion at Cincinnati Children's Hosp.

Looking forward to reading more on this forum. Thanks so much!
Leslie

 

[littlefreebird]

my growth continued at a slow rate, but i don't think i ever had a 'growth spurt'. i am quite petite (5ft 1'). try not to worry about your daughter's growth too much, during remission development picks up where it left off and continues, you will find that it will stop and start but on the plus side your daughter is so young she has many years of growing left to do.
i class myself as being in remission if i can work (so in your daughter's case go to school), if i have a good appetite & able to gain weight and symptoms in general are non-existant or even greatly reduced...obviously whilst in remission you can have the odd stomach ache here and there or the odd 'off day' but in general everything is pretty much normal.
it is possible to have soft stool whilst in remission, you may find that they are constantly changing consistancy and this can be normal, what i wouldn't expect to find from stools during remission is blood, mucous, extreme water-like stools or pain whilst passing stools. diet also plays a huge factor in affecting consistancy.

 

[Dexky]

Hey Leslie, the diet we tried was on a recommendation from a naturo and designed around blood-type. We scrapped it after a while because it was making everyone, my son included, miserable. Do you guys see Dr. Acra?

 

[Misty-Eyed]

Unfortunately I didn't grow anymore from the age of 10. Luckily I was extremely tall for my age at 5'1 and I've stayed the same ever since. I like being short though, to be honest, and the lack of growth was probably due to being on pred for so many years.

Where abouts is her crohn's? A soft stool doesn't necessarily mean malabsorption if her crohn's is in her large intestine. She may just not be absorbing water from there which would make them soft. Just make sure her iron levels are checked regularly. I used to have bad anemia from my crohn's and it made me very tired all the time!