Tonsillectomy

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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!

June Update

I am looking back and seeing that it has been two months since my last update.  Pumpkin is doing awesome.  She no longer has the NG tube.  She is drinking a mixture of Ensure Plus 50/50 with Peptamen Junior - about 1800 calories a day and eating regular food.  She has gained 16+ pounds since January!  She is actually up to the bottom of the growth chart and is not looking like she just came out of a concentration camp!  In April or May she started 6MP and for the first time she has had a normal fecal calprotectin level.

This summer Pumpkin has been spreading her wings and getting outside of her comfort zone.  She had swimming lessons in May and passed to level 4.  Hopefully she'll do more swimming after camp.  She went to drama camp and in spite of her original reservations she took on a pretty big part in a play and did very well with it.  She is playing soccer with the Boys and Girls Club.  She is also in the process of getting braces on. 

Right now she is at Camp Oasis, where she had to fly to Seattle with a chaperone for a week.  It has been stretching for Tim and I to let her go away so far and to not have contact with her for a week.  I think it might be harder on us than it is on her!  I heard a good report today that she is doing well and having fun.

Random pics of Pumpkin with her NG tube

In the safety of her own home, no holds barred!
 

Pumpkin gets her haircut short.  She looks super cute, but this creates a problem for a tall, thin, young lady with Crohns:  other kids mistake her for a boy...  She overheard one girl say to another at a store that she thought "the boy over there (refering to her) was cute..."  Pumpkin told me she thought, "THEY BETTER NOT BE TALKING ABOUT ME!"

 

Notice the great artwork in this pic and the first one!  All her originals.  She made the earrings too.

The beginning of Pumpkin's Ensure can castle

It even has a draw bridge with a working pulley system!