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!

Up 5 pounds in two weeks!

Pumpkin is doing better than ever!  She's drinking the 2150 calories daily, along with some food each day.  She doesn't have much appetite for anything else, but she's gained 3 lbs a week ago, then 2 lbs this week.  In one week she grew .75 inches as well.  This put her up to the 50% for height and she is now actually on the growth chart for weight (still about 2% :) ).  At the doctor's office, she did not have any abdominal pain, which is the first time that I can ever remember.  Her gas has improved, too, since we took Peptide out the the drinks.  Currently she is drinking 4 cans Ensure Plus mixed with 3 cans Peptamen Junior.  She can't drink either of the formulas plain, but mixed together seems to do the trick!

Pumpkin loves to have fun!  Here she is dressing like a ninja!

My panda-angel maker!

NG tube pulled

Friday night Pumpkin pulled her NG tube (nasty process).  She is now tubeless and doing well!  8 cans she'll have to drink to keep up, but she's done it two days now.

Friday we started some table foods - liquids anyway.  She had a glass of apple juice - probably not the smartest.  It gave her diarrhea (just a little) and made her already foul gas worse, but it wasn't a long-time problem.

Saturday she got some beef broth made from organic beef bouillon.  This was her first warm, salty food in over 2 months.  She said it tasted like "liquid steak" and she rated it "hugely good" or something like that.  No side effects!  Double thumbs up!

I think today we may move to strained vegetables or potatoes.  We'll steer clear of the fruits, lactose or gluten yet.

Foul gas is our problem right now.  Not sure if it is from the Peptide or from the Peptamen with Prebio.  We'll eliminate the Peptide first and see how it goes.  The stinky gas started before the Ensure or other foods.  We'll also consider probiotics, perhaps water kefir, after that if necessary.

Great start to oral formulas

Right now Pumpkin is doing well drinking 1/2 Ensure, 1/2 Peptomen shakes.  She is drinking 4 a day.  We are cancelling the surgery for now and hopefully she will be able to get up to drinking 8 shakes a day and we can remove the NG tube and start oral feeding!

The girls and I needed a change, so we went to a movie Saturday night.

Surgery schedule pushed back

Due to the fact that the pediatric surgeon is on vacation, the MICkey button isn't going to happen this week after all.  It has been pushed back to 4-10-13.  I think this will help us get used to the idea.  In the meantime Pumpkin is trying other formulas (Peptide in 2 flavors) to see if she can drink them.  If she can and she tolerates them, we'll put off the surgery to what time she can't do it orally.  I think she needs this process to see for herself that she needs the surgery.  Personally I wish we could stay on EEN for at least another month, and this will actually give her at least another week to try the formulas before food is added to the picture.  She is over her flu and is not having any GI symptoms right now except stinky gas!  Lol!  (I'm not sure what that is about - maybe the Prebio in her Peptamen Junior, which we've been doing a little more than before since the medical equipment company couldn't get it before).

I'm frustrated with lack of a solid plan for reintroducing solids into her diet.  Our dietician is used to doing this for allergy kids, but not Crohn's kids.  Our GI doc said it would be okay to start with steak and potatoes, but our dietician said, "NO! Please don't do that!"  Ugh!  Now I don't have a plan.  Still researching that.  I'll have to search Cincy and Canadian children's hospital websites for recommendations...

By the way, Pumpkin has had two more doses of 6MP with NO SIDE EFFECTS!  Yahoo!  Also no reaction to her vaccines other than a little soreness either!  :)

Jae on schedule for MIC-key button

Poor Jae can't get a break. She has been recovering from illness after illness for the past 2 weeks. For 9 days she had a head cold. She was pretty much over it for one day, then the next night got the stomach flu with vomiting and diarrhea for 3 days. I thought she was finally over it last night, so we started her on her new medication, 6-MP. I guess she wasn't quite over it, because she had to stop her feeding during the night due to abdominal pain and nausea

Last week we were pleasantly surprised to find out that Jae had gained 2 lbs. This week we find that she has lost them again.

Anyway, it is time for her NG tube to be removed. It seems pretty clear that the enteric nutrition is doing her good, even if she hasn't reached remission. She is only one week from finishing her 8 weeks of exclusive enteric nutrition, but will need to continue supplemental feeding. Today we decided that since replacing her NG tube each month isn't going to work well for her (won't do it without sedation), that the best option for her will be to get a MIC-key button. I think it is being scheduled for Monday for placement.

Oh, and poor Jaedyn got two vaccines today... pray she doesn't get seizures, we've often wondered if vaccines were a trigger for her seizures in the past... now I'm more convinced the seizures were triggered by malnutrition...

Checked in with Ped GI

Yesterday we drove to Anchorage and met with Pumpkin's GI doc.  She was pleased with how she is doing.  She said that Pumpkin has come a long way since the last time she saw her.  On that visit Pumpkin weighed about 68-70 lbs and was not diagnosed yet.  Now Pumpkin weighs 73 lbs and has an NG tube - which was a big step for her. 

Pumpkin is on her 5th week of enteral nutrition, the second week using the NG tube with Peptamen Junior.  She is doing much better right now - less abdominal pain, no diarrhea for about a week.  She is having joint pain in her right wrist.

The doctor is increasing her feed to 8 cans of P.J. per day.  Hopefully she'll start gaining again.  She also discussed starting 6MP as soon as Pumpkin is over her current cold.  Poor Pumpkin has a ton of nasal drainage and evening fevers.  No fun with an NG tube.  In 3 weeks she'll be able to start increasing her oral intake of food.  Pumpkin told her that her favorite food is steak and potatoes, and so the doctor has okayed her to start with that.  :).  Really?  I would have thought something soft, but she said it's good to start with a protein.  I hope her gut is up to that after a liquid diet for 8 weeks!

The doc also showed Pumpkin a Mickey button (and a Minnie button).  These are small tubes that go through the skin right into the stomach.  Unless Pumpkin can accept that she needs to learn to insert the NG tube manually, she may need to go to another method to get her supplemental nutrition.  The NG tube has to be changed every 4-5 weeks.  The Mickey would only have to be changed every 3 months, and that can be done right at home.  It's really quite small.  I think it would have its advantages.

Overall, I think we're at a good place right now.  Pumpkin is gaining, albeit slowly.  She has accepted the NG tube and has done two weeks of it already.  She even over at a friend's house spending the night tonight!  She brought all of her formula and syringes with her to start her feeding and refill it tonight with her.  Now that is a real friend who can look over this and invite her to spend time with her anyway.

NG tube tape art

My daughter is very creative.  Each day she colors the Hyfix tape that she uses to attach the tube to her cheek.  I talked her into letting me get a picture of it today.  She has had characters and creatures from her Legend of Zelda Wii game, a sword, and today a hummingbird.  I hope to get more pics to add to this.



The Hyfix is white and all the drawing and color is with colored pencils.



By the way, Pumpkin had another weigh in today.  She is up 12 oz from last week - a total of 3 lbs in 4 weeks.  (Last week she had lost about a pound, so I'm glad she's back on the upward move).



Sore throat

We took Pumpkin to the doctor on Wednesday for her sore throat.  It seemed to be more than just an irritating tube.  The doc thought she might be getting a virus, and that made sense.  She took a culture swab of her throat.  Yesterday I took Pumpkin and her older sister to get haircuts.  It was good for Pumpkin to get out of the house.  Her haircut looks super cute.

Today she was having a lot of melt downs related to schoolwork she didn't want to have, having a tube and just not having a good day.

After lunch Pumpkins pediatrician called to tell us that the throat swab came back positive for Group A strep.  Since we're trying to build up her gut flora with the EEN, we opted to give her a shot of bicillin in lieu of oral antibiotics.  Although she is only 72 lbs, she had to have the full adult dose.  This was not music to her ears when I had to call Tim and Pumpkin and tell them.  She had been getting better without the antibiotic, but I think she may be a chronic carrier.  Maybe this will stop the viscious cycle.  Three MAs came into her exam room to give her the shots.  One half of the dose for each leg.  The third MA didn't end up being needed.  Pumpkin said it hurt a lot though.  :(

The Deed is Done - The NG tube is finally in place.

Pumpkin went to the hospital at 8:30 this morning and was put under around 10 am for less than 30 minutes so the nurse could insert her NG tube.  DH said that everyone was really good with her, and they even offered to medicate her and teach her to insert the NG tube herself with meds for gag reflex control, pain management and relaxation meds, but she wasn't interested at all after last time.

The nurse said she understood why it would have been difficult for her to do the first time as she had to turn the thing around quite a bit to get it down.

Jaedyn after 3-4 days of diarrhea and belly aches, Jaedyn has had not tummy complaints, one soft stool and no diarrhea!  We're off to a great start!  Now if she will only get used to the tube being in her nose...

She is feeling pretty sore in the nose and throat right now.  They say it takes about 3 days to get used to it before you don't notice it any longer.  She is sleeping in the recliner tonight so that she can keep her body at a 30 degree incline, per a site we read on the internet...  I hope she has a good night.  Tomorrow we can get her a wedge pillow so she can sleep in her own bed tomorrow night if she would like.

Her older sister had a rough day worrying about her all day and ended up in tears once at school.  Tonight she pulled out her diary to try to get it out of her system before she went to sleep.

Going back to hospital in the morning...

Tomorrow at 10 am, Tim and Jaedyn will be going back to the hospital for NG tube placement.  The anesthesiologist will kindly put Jaedyn under long enough for one of the nurses to place the NG tube, then bring her back.  She's still having trouble getting much Ensure in - only 5 cans yesterday, and probably less than that today.  I'll be glad when our peds GI doc is back from her vacation, but I don't know that we'd be doing anything differently.

Update... Ensure failing

Pumpkin had a check in on Tuesday.  She had been experiencing a lot of diarrhea, but that seemed to resolve on Wednesday.  Tuesday she had gained another pound.  Starting 3 days ago, she started having issues with the Ensure again.  It makes her tummy hurt when she drinks it and she isn't able to get the full 7 cans down.  Twice in the past 2 days she has mentioned wanting the NG tube so that she can get another kind of formula that will be easier on her tummy.  All the better formulas taste terrible.  She tried one and said it tasted like vomit...well that makes sense, since it is predigested...  I guess I'll be talking to the pediatrician tomorrow about our options.  :(

First checkup on EEN

Pumpkin had a rough night and had difficulty getting to sleep. She is a little depressed and tired. School isn't getting done adequately and we had a talk about this last night and this morning, which I think upset her. Today we woke her up and brought her to the doctor for her first week checkup. She has gained 1 lb 6 oz. That is even with 2 of the days being less than 7 cans.

We are getting the nutritionist involved more with adjusting her caloric needs and fluid needs. She is having more stools, and they are not formed. Yesterday she had more GI upset and more frequent stools, but not really pain.

It is so hard seeing her down, and I know it is my hypervigilance, but I can't help being pulled down with her. I've sent her home with her daddy with the recommendation to get the diffuser going with her favorite oils to perk her up while she is doing school. I hope it helps.

The effect of Crohn's disease on me

I know this blog isn't about me, but Pumpkin's disease does affect me. 

I think I've become obsessive with her health.  How many cans of formula did she drink today? How does she feel?  Is she having diarrhea?  Are her stomach aches from her formula or from her Crohn's?  Is she on the right formula?  Should we be starting another med to keep her in remission?  Are we doing enough?  Are we doing too much?  Is this going to help?  Is this going to hurt?  Is she gaining wait?  Is she getting enough calories?  Is this Crohn's new or is it old for her?  If it is new, why has she had trouble eating her whole life?  If it is old, why didn't it show up on her biopsies?  Why were the endoscopies and biopsies clear and why the video endoscopy show inflammation and ulcerations throughout the colon 9 days later?

I wake up frequently at 4-5 am worrying.  Trying to figure it all out.  I can't read my Torah portion (Bible study) or even read a book without falling asleep.  I'm tired at work and have a hard time thinking about other stuff.

Pumpkin's homeschooling is frustrating me.  DH is not keeping track of her.  She is not doing all her work.  Last week she did one out of 8 assignments in history and literature.  Yes, granted she was in the hospital 1.5 days, but still she had 3 days at home.  Aargh!  I don't want to send her back to school.

Good article on IBD in childhood

http://www.wjgnet.com/1007-9327/12/3204.pdf

Pumpkin's First Treatment Begins

This week Pumpkin started her first treatment.  As you know from my last post we decided to go with a nutritional pathway rather than meds.  This made sense for us since she is so underweight and because of a low side effect profile. 

Once I accepted that she has Crohn's, I also had to come to the understanding that this isn't something that I can control or fix.  We've been trying to get her healthy on our own for 13 years.  Yes, we've made her better, but we've never fixed her and she doesn't get well.  She still can't eat much and she gets full quickly.

So Tuesday we brought her to the hospital to get a naso-gastric tube put in.  This would allow her to do a treatment called EEN (exclusive enteric nutrition) in which she gets fed a special formula exclusively for 8 weeks (no other foods) with water.  Studies have found up to 80% of kids who do this treatment go into remission, but then have to either continue it part-time (one month of every four exclusively, or 5 nights a week) or go on long-term meds to keep it in remission. 

Our experience at the hospital was not what we were expecting.  We were planning that she'd get the NG tube put in easily (and be taught how to do it herself so she can take it in and out at her convenience), then would be monitored as they increase her formula intake for a condition called "refeeding syndrome".  Instead, the first time they attempted to put an NG tube in her, it was too big.  They somehow scratched up the inside of her nasal passageways and she was traumatized.  They had to locate a smaller NG tube and have it flown down 6 hours later from Anchorage.  She decided that she would do the placement herself with coaching after that, but both other attempts by herself with the softer, smaller (6 french) tube was too painful.  She finally flat refused to try again, even when we tried to sedate her to do it.  She decided it wasn't for her, and that she would drink the stuff instead.

We came home Wednesday morning, brought back to the medical supply store all the equipment we had prepared to use to pump it into her, and started the formula.  On Wednesday she drank 5 cans.  On Thursday she drank 6 cans, and yesterday she drank 7.  That will be her maintenance amount for now.  She continues with 7 cans a day.  She still doesn't have much appetite, and doesn't seem to be too bothered when food is cooking in the house or people are eating around her.  She still feels a little sick when she drinks the formula. 

On Wednesday she had a small poo, but then didn't poo again until yesterday when her tummy was hurting and she had some painful diarrhea.  I'm not sure what that means but the pain was relieved when it was over.  She hadn't had diarrhea for a couple of months, so it is concerning.  I hope it was just her body getting used to not having regular food.

I've found a good forum of parents of other kids with inflammatory bowel disease, and it really helps to be able to talk to other parents who have been there and done that with their kids.  They've helped me come to accept this diagnosis and I think will be there for me as we walk this journey wherever it leads us.

Pumpkins story before gastroenterology came to play

Our little Pumpkin was born the second and smallest of our (eventual) brood of 4 chickadees.  She was 8 lbs 6 oz and 22 1/2 inches long.  She was born with dark hair, but each time we washed it some of the darkness went out of it until she had a beautiful bright auburn hair.  It has since lightened up to a strawberry blonde, but will always be red to me.

Pumpkin had an issue with spitting up since birth.  She'd drink my white breast milk and it would come back up - orange.  She soon dropped down on the growth chart a bit to the 50th percentile for height and 25th percentile for weight.  Around the age of 1 she contracted the Rotavirus.  This gave her the worst diarrhea that our pediatrician at the time had ever seen.  She'd drink purple pedialyte that came out the other end so fast that it was still purple.  She was in the hospital for 5 days with an IV stuck in her little foot and went through 40 diapers in a day.  Her little fair bottom looked like hamburger meat from the soreness of the diarrhea.

I can't remember at what age she started having chronic diarrhea, maybe it was after the rotavirus.  Around 2 years of age she was diagnosed as failure to thrive because her weight had dropped to the 5th percentile and her height to the 25th percentile.  She had a big workup with lots of labs, a sweat test, saw a pediatric gastroenterologist, a pediatric urologist (for labial adhesions), and a pediatric endocrinologist.  In the end they diagnosed her as just being a small child with big parents.  They essentially told us nothing was wrong with her - that we needed to find a way to get more calories in her working with a nutritionist.  We tried that and tried all sorts of things.  She just stayed there on her low end of the scale (5th %) for weight and at the 25th percentile for height, hardly able to eat, frequent stomach aches, regular bouts of diarrhea, etc.

At the age of 4 Pumpkin started having seizures about a month after her 4 year old shots.  They were diagnosed as temporal lobe seizures and she was put on medications for this.  She took medicine called Trileptal for 1.5 years and the seizures seemed to be gone, so they weaned her off of it.  When she was 6 we went to Guatemala for 3 months.  She started feeling funny feelings in her arms that reminded her of how she felt with her seizures, and so back on the medicine she went. 

Before we went to Guatemala we had found a diet called the Feingold diet that helped with her seizures, hyperactivity and behavior issues (she wasn't ADHD, she was just challenging).  Cutting out the artificial colors, flavors and preservatives in her food really helped.  Reading the information that came with the Feingold diet we read about symptoms of gluten intolerance.  We decided to all go gluten free to see what would happen.  We found that eating gluten free helped with her chronic diarrhea (and mine too, hmm) as well as her belly pains.  We thought we'd found the problem.  Apparently we'd only solved one of the symptoms of her problem. 

As she continued on the seizure meds she got more and more malnourished.  We tried another med because she had started getting bad side effects from the meds.  She got stomach pains, heartburn, depression, suicidal ideation, weight loss, anorexia, weakness, inability to focus...  The new med was not better.  She was so bad at one point she couldn't hold a pencil without fisting it.  We decided the seizures were better than the meds.  We stopped the meds and tried to fatten her up, unsuccessfully.  She still had little appetite, textures were a big problem, but she didn't have any more seizures... until we were in the middle of our move to Alaska two years ago.  They found another kind of medication that she seemed to tolerate better - at least she wasn't wanting to kill herself or crying all the time.  This one had the unfortunate side effect of heartburn and GI upset though.

Last spring I took a look at her growth chart.  She was down to the < 1% for weight and 0% for BMI.  Her height was okay in the 25%, but you have to realize that both of her parents are 6 feet tall and all her siblings are tall people, and her grandfather was 7 feet tall.  25% isn't her expected height range.  She hadn't any female pubertal characteristics.  I took her to a pediatric endocrinologist who came to our office quarterly.  She measured her bone growth and at just shy of 14 years her bones were measuring that of a ten year old.  She felt this might be why she was pubertally delayed.  All her labs showed she didn't have any endocrine issues.  She wanted to see her again in October to see how she was doing.  In October I mentioned my concern about her lack of appetite.  I thought maybe her stomach was congenitally small because she couldn't eat much and she got full so easily.  I also mentioned she was having some joint pains.  This led to the referral to more blood work and found that her sed rate was elevated to 51 (<20 normal, I think) and her CRP was 2.9 (<1.0 normal).  This got us referred to rheumatology (which we still have yet to get an appointment) and gastroenterology.

The rest of the story you can read from the beginning of this blog.

Turning Points

If last week was a turning point in that I had to stop ignoring the fact that Pumpkin isn't getting better, this past weekend was a turning point in accepting that supplementing her and not treating her was not going to make her better.

On Saturday, Pumpkin got all dressed up for a tea party she was invited to with her friends.  My three girls were so pretty in their fancy dresses and makeup.  Their two friends came here and we took pics together.  After about 5 minutes of the photo shoot, Pumpkin needed to go lay down.  This has been happening whenever they do anything - take a walk, shop, etc.  She gets tired out quickly.  She has been needing to sit or her stomach hurts.  I found out on Sunday night that she had gone to McDonald's on Friday and had some french fries and a shake.  This may have been the source of her pain.  Seeing her so thin in her dress up clothes, hurting, weak, not able to eat...it was breaking my heart.

After dropping her off, I cried in my car.  I realized the time had come, we had to do something.  I talked with Pumpkin about her treatment options, which for me right now seem to be prednisone (very effective, but many side effects and often symptoms return after weaning off of it, so has to go onto another heavy duty med), budesenide (a steroid, not as successful but less side effects), or EEN (exclusive enteral nutrition).  EEN is a full liquid diet of a special formula (many to choose from) either by mouth or by NG tube.  As Pumpkin cannot even drink three cans of her Ensure a day, it would be near impossible for her to do 6 or more a day.  After we watched a video of a little girl showing Pumpkin how to do it, she decided that the NG tube probably would be a viable option.  She would have to do this for 6-12 weeks continuously, then slowly start regular foods again when all of her Crohn's symptoms have subsided.

I wrote Pumpkin's GI specialist an email and she called us on Monday night.  She is in agreement with this plan and will call our pediatrician when she gets a formal plan written up.  I'm still waiting to hear from them.

Facing Up to The Monster

So I have a few minutes to stop and think.  Of course what my minds first leads me to is my daughter, Pumpkin, who is 13 and was just this month diagnosed with Crohn's disease.  She weighs 70 lbs and is in the <1% for her weight in this age group.  Although she looks tall because of her skinniness, she is only in the 30th % for her height, which started out at the 75th% or better.  She is just starting puberty.

Pumpkin homeschools because the stress of school makes her abdominal pains and anxiety worse.  She has trouble with the social realm of being a shy, sick girl in a private school who struggles academically.  She is much happier at home.  Academically she is doing fine, in my opinion, and is thriving with real literature like 101 Arabian Nights, Beowulf and soon will be studying Arthur and the Knights of the Round Table.  A couple years ago she had some neuropsych testing and found that she doesn't learn well auditorily at all.  I think this was her biggest struggle in the realm of a regular classroom.  She couldn't take the information presented auditorily at the front of the classroom and process it into words on a sheet of paper (notes).  She also had problems keeping up with written notes on the board getting put down into written notes into her notebook.

This week, Dr. Wilson, the pediatric GI doctor called and had a conference with myself and Pumpkin's pediatrician, Dr. Schramm.  They want to start her on prednisone.  Frankly, I'm freaked out with the side effects of all the Crohn's meds.  I wish I could see into the future.  Will the meds help her overall in the long run, or will they hurt her?  Will she become dependent on them?  Will she ever be able to maintain as well as she is now (which isn't good) without them?  Will they help or will they hurt?

I hate that there is no good cure for Crohn's disease.  I have no one who is giving us hope of a healthy life - only of remission for weeks or years, with the fear that one day, without reason, it could relapse and she'd be back to square one in a matter of days, maybe worse.

I read books about Crohn's and diets.  They all seem so contradictory.One says low fat, one says low carb, one says all natural/organic, another says use supplements like Ensure or Boost.  Ugh!

I guess I have to go back to the Person all my hope comes from, and that is in the Creator Himself.  He knows Pumpkin and this health problem that she has.  He is the Healer.  He may use the meds, or He may choose to heal her silently like He did for my other daughters, Bubbie's scoliosis and The Boo's seizures.  Lord, help us.  This is too big for me, and I feel paralyzed with fear of making her worse.  Only You know the perfect cure for her sick body and emotions.  Help me make the right decisions.

A little hike in the snow

On Sunday the weather decided to warm up a bit.  It had been rainy all weekend but I decided it was time to get the kids outside for some fresh air and exercise.  We went downtown Soldotna and walked along the river.  Pumpkin was feeling pretty weak and sat down a few times on our less than 1/2 mile hike, but I think it was good for her nonetheless.  (I asked her when we got home what she had eaten before our noonish walk and she told me that it had been very little - that is probably why she was so weak and tired.  She perked up after a good meal.)  We tried to play at the park a bit before we went home, but it was just too nasty out and with Pumpkin feeling poorly I decided it was best to go home. 

We have a diagnosis

If you've been following my blog at all, you know that we've been waiting to here back from Pumpkin's pediatric gastroenterologist regarding her diagnosis as to why she can't gain weight.  Well she called back and we have a diagnosis - Crohn's disease.  Her video endoscopy showed a lot of inflammation in her small bowel (especially in the terminal ileum) and also ulcers throughout her colon.  The GI doc isn't sure the ulcers weren't biopsy sites and she is waiting to see pics of the spots herself.

In some ways knowing the diagnosis is worse than the waiting.  Perhaps I just need to let it soak in.  Perhaps part of me is still in denial.  Perhaps I'm just scared of what this is going to mean.

Living in Alaska all of a sudden seems so remote.  It never bothered me before now.  Having a doctor call me and give me a bomb like that over the phone was her way of not making me travel 3 hours to do the same in her office, but now I feel like "What do we do now!!?"  I know better than to get onto some yahoo support group - that was disastrous when my first daughter had seizures - I was so freaked out by the stories!  We have been looking at Mayo Clinic and some Children's Hospitals websites online.  It seems other places have whole teams to helps patients newly diagnosed with Crohn's.  We get a phone call with the doctor essentially asking me what I want to do.  Yes, I may be a PA, but I'm not a gastroenterologist.  I'm a freaked out Mom like everyone else would be wondering what is the best choice for my daughter.

Right now the options seem to be 1) giving her a short (2 week course) of prednisone then putting her on an immunomodulator.  Uh, are you sure this is first line?  2)  Putting her on total enteral nutrition, which consists of having her drink nothing but a nutritional supplement like Ensure or Pediasure for 6 weeks - no food, only the supplements or water for at least 6 weeks.  3) Watch and wait and redo the tests in 3-6 months.  4)  Go naturopathic - whatever that would mean.  "The Maker's Diet"?  The Whole 9/Whole 30 diet?  See a naturopathic doctor?

On a good note, my 8 year old daughter, Bubbies, who had some serious scoliosis going on last summer was re-xrayed this week and it appears to be completely gone!  That makes one less trip to Anchorage.  Thank You, LORD!

Please keep us in your prayers as we face this beast with Pumpkin.  If He can make a crooked girl straight, He can heal another girl's inflammatory bowel disease.