I year after diagnosis

Here we are a little over a year from our diagnosis - so glad to no longer be where we were a year ago - freaked out and at the beginning of our journey into the unknown...it was all so scary then, and I'm so glad to be past all of the first year's terror!

Pumpkin is 22 lbs heavier now (almost gained 1/3 of her starting weight), she has no abdominal pains, she likes to eat (in her own unique way), she seems content and ornery as ever (maybe even moreso), and is coming into her own personality.  I would like to see her gain another 30 lbs, but I'm glad to be doing better than ever since she was a tiny kid!  She hasn't had seizures except when given meds that lower her seizure threshhold. 

She is seeing a counselor now, which is going well, for her anxiety about food and Crohn's related stuff.  She is also working on social anxiety regarding peer relationships.  Hopefully they can find a way to help her sleep like a normal person soon too.  She has a terrible time getting to sleep.
Next month we see the peds GI again.  I'm a little apprehensive, as she has been pushing for Pumpkin to get a G-tube.  The thought of this freaks Pumpkin out, and is her #1 fear, according to the psychologist.  The psychologist even went as far as to say as pushing Pumpkin to get the G-tube would be traumatic to her and probably life-altering in a very bad way.  The last time I spoke with the GI, she pretty much said that any weight loss was too much at this point and unacceptable, at that point she weighed 95 lbs, but since then she had a tonsillectomy, lost 8 lbs and has gained 2 back in the past month.  We've tried two different appetite enhancers which both set off her neuro system negatively after once dose (seizure and pre-seizure symptoms).  She has given up on Ensure and Peptamen Junior - so sick of them!  NG tube was a traumatic experience too.  Right now she is eating food and drinking Carnation Instant Breakfast for supplementation.  She has started a swimming program and doing other PE activities about 4 hours a week.  I'm thrilled to see her building her exercise tolerance to be able to do this, but it isn't helping her gain weight.

I'm to the point of pretty much telling the GI that a G-tube is off the table, and if she wants to help Pumpkin, she'll have to find another way.  I know her heart is right, but I can't use fear as a motivator for Pumpkin - she doesn't work that way - and unless Pumpkin takes a terrible turn for the worst and we don't have any other options, we're not even going to talk about it any longer.

Has anyone else faced this issue with their GI and told them that a G-tube wasn't an option when they were feeling pressured to go that direction?  If so, how did it go?

Lastly, I'm thinking strongly about enrolling Pumpkin in a charter school program we have in our public school system where she will be working with other kids, but working at her own pace on the things she needs to meet school standards.  I think it will be a good situation for her - I just hope the anxiety of doing something different won't set her too far back health-wise...

I guess that is my update.  Thanks for reading, if you made it this far!

New Year Status

Stained glass pumpkin by Pumpkin

With the lights off

Pumpkin has finally started eating again and having less pain after her tonsillectomy that was done on the 18th.  She couldn't get enough popsicles last evening while watching a movie together, but only ate half of her supper prior to the movie.  She said it didn't taste good.  This is a common complaint - I think it is part of the picture, but not sure what to make of it.  After eating she later had reflux symptoms and needed tums, which has happened a couple days in a row...  :(

I am glad for the increased appetite, but was hoping for much more after 2 weeks of rest...  she's down to 89 lbs :(  but has only lost 3 since the tonsillectomy as she was 92.6 on the day of the tonsillectomy.  She still has a little throat pain.


Before



After (hers are the two on bottom!)

 Interestingly, the ENT yesterday said that of the 3 kids' pathologies on their tonsils, Pumpkin's tonsils were the only that showed ongoing chronic infection...  she was not symptomatic and I was wondering whether to even go through with the tonsillectomy at the time, but now glad I did.  She had that squirrely problem creep up too many times this year!


Ice fishing with dad before the tonsillectomy

 

Tonsillectomy

I


Pumpkin as Ginny Weasley, Dad as Lucius Malfoy, and Little Brother as Harry Potter

 I haven't been very good at keeping this up.  Sorry, friends.

Pumpkin has had a rough couple of weeks.  Two weeks ago she was so stressed out about her upcoming tonsillectomy that she couldn't eat, then she had the tonsillectomy, and now she is still having pain trying to recover.  She wants to eat but is so afraid of her throat hurting that she doesn't eat much.  I keep thinking to myself that she will be fine once she gets over this.  She says food doesn't taste like it should :( also.  She lost 2 lbs before even having the surgery, and we aren't pushing the formulas right now because she is so sick of them.  We are letter her recover in the same manner as her 2 siblings, who also just had their tonsils out.  In some ways she is doing better than her brother who had his out on the same day, so I feel reassured about that.  After 2-3 weeks, we'll start looking at the eating issues again, hopefully she'll bounce back like the other two are expected to...

On January 10, she will be seeing a psychologist to help deal with her anxiety and see if we can make some headway through the whole psychological part of eating.  I just wonder whether it is physical or psychological, but even if it is all physical, she has a lot of anxiety about living with chronic disease...  It can't hurt.  Right?

P.S. CheapBohemian and Sibol, I'd be happy to correspond with you, but I don't know how to go about that.

Recent stat summary:
*Currently age 14, Crohn's diagnosis 1-2013 - age 13.
*EEN finished 4-5-13, gained 20 lbs and did great until she got strep throat and a virus in 7-2013 and lost 7.5 lbs.  Back to 90 lbs 10-8-13, up to 94.8 lbs 11-2013!
*Prednisone 40 mg daily starting 9-14-13 done 10-11-13
*6mp 50 mg daily
*Vitamin D3 1000 IU daily
*Zinc gluconate 50 mg 4 days a week
*Supplemental EN (1500 cal/day) - was drinking about 1750 calories a day until about 12-15-2013, this has come to a halt while she recovers from her tonsillectomy...  She's currently getting a break from it as she is burnt out on it...  weight was 92.4 the day of her tonsillectomy and we're a week out now.  Hopefully she'll heal quickly and start eating normally again...

Eating disorder?

I'm wondering if a childhood of pain and feeling poorly secondary to Crohn's can psychologically change the child to have an aversion to food.

My daughter's GI thinks that her Crohn's isn't in flare (normal labs and calprotectin, no pain, etc), but she has ongoing loss of appetite and frequently feels nauseated or "gushy" in the stomach if she eats.  Some days she won't eat at all because of this aversion to food.  She has definitely found a hypersensitivity to some textures (lumps in potatoes, graininess of some foods, etc).  Her GI is suggesting IBS, but without pain, constipation or diarrhea, I am doubtful of this diagnosis along with her Crohn's.  Pumpkin has a history of seizures and the IBS meds she is suggesting (amitryptiline, desipramine) can lower seizure threshold as well as potentially cause suicidal ideation, anorexia, nausea, etc.  Pumpkin did get suicidal on two seizure meds, and I am loathe to go back there.

Healthier than Ever!

Here's an update on my sweet Pumpkin.  She is doing great.  After 2 weeks of being on Prednisone, we found out that it wasn't her Crohn's flaring because her fecal calprotectin test was better than ever!  It took another 15 days to wean off the pred, but she did well.  We found some enteral nutrition that she was able to drink to help her put back on the weight, and I am happy to say that she has finally gotten through the 90 lb threshhold weight.  She is doing super at her homeschooling, keeping a good attitude, has a nice group of friends, winning poster contests...  Life is good!  She hasn't had any seizures again that we've witnessed either!

Recent stat summary:
*Currently age 14, Crohn's diagnosis 1-2013 - age 13.
*EEN finished 4-5-13, gained 20 lbs and did great until she got strep throat and a virus in 7-2013 and lost 7.5 lbs.  Back to 90 lbs 10-8-13, up to 92 lbs 10-15!
*Prednisone 40 mg daily starting 9-14-13 done 10-11-13
*Culturelle 1 daily starting 9-3-13, stopped 10-24-13 when she ran out, seems to be doing well, will see how she does without.
*6mp 50 mg daily
*Vitamin D3 1000 IU daily
*Zinc gluconate 50 mg 4 days a week
*Supplemental EN (1500 cal/day) - currently 3 cans Dark Chocolate Ensure and 3 cans Peptamen Junior orally.

A major setback :(

Pumpkin and I went to Anchorage today for her check up with her GI doc.  It was perfect timing because she has been going downhill fast.

At the end of July Pumpkin contracted strep throat again.  Just as she was finishing her amoxicillin for that she had a bad sinus infection so she took another 10 days of an antibiotic called Omnicef.  By the time these 3 weeks were over, we were hoping that she'd bounce back, but she didn't.  She did get over her throat and sinus infections, but she didn't get her appetite back which went away with the illness and antibiotics.  Over the course she lost 7.4 of her 20 lbs she had gained in the previous 6 months :(.  She had been up to 90 lbs, but now is back to 82.6 :(.

This morning frightened me a little.  We got her up early because it takes 3.5-4 hours to get to Anchorage from here and had to get a start by 6 am.  As we were gathering our supplies for the road, Pumpkin tripped on her pillow and then had a seizure (not sure which happened first).  This really got my attention, because she had not had a seizure for over a year.  When her nutrition is good, she doesn't do this...

Anyway, her GI doc thinks the recent illnesses flared up her Crohn's and wants her back on either enteral nutrition or prednisone.  Pumpkin doesn't do well with enteral nutrition - she won't go out of the house with an NG tube in.  She is too self-conscious.  She also is not wanting the MICkey button, but this may have to be in the works if the prednisone doesn't turn things around.

We start tomorrow on the pred and call the GI doc next Thurs or Friday.

July update

Pumpkin is pictured here with her teammate and friend.  She is on the right.  She had a great time at camp and had a really good soccer season.  She was quite weak at first, but after a few weeks she was able to play the whole game without coming out to rest.  She is still drinking the same amount and same kind of formula, but is doing so well her pediatrician is starting to talk about reducing the amounts.  She is up almost 20 lbs now and has grown 3 inches!