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02-19-2013, 11:45 PM   #1
Kimberly27
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Son's update

Well, there is nothing like a blood test to confirm what you already knew in your heart and soul...things got worse.

Reed's SED rate went from 24 in Dec, to 20 in Jan, and now it's up to 30! His pain had gotten so much worse. We're going the wrong way! Bummer.

The Xifaxin he started two weeks ago really exasperated his abdominal pain, so now he's off. Plus in a couple of days UCSF will drop him down from two VSL#3 probiotic capsules to one (and possible none for awhile). Additionally, they may consider dropping his Pentasa frequency from four times a day to two. (I guess there is research showing that twice a day may work better?) Lastly, they confirmed that he is on his maximum dose of Azathioprine 125mg for his weight (110 lbs). (Dec.19 - Jan 19 at 100mg; and then Jan. 19 - Feb. 19 at 125mg). They want to start fish oil after the next blood draw.

Anyway, Reed will get new blood work done in two weeks. They are also running a TTG even though he is gluten free just in case.

On a side note, I hold my breath when they measure him hoping, but no such luck, no growth.

I'm a little hopeful that there is a plan that involves less medication, but at this point, I'd shove 30 pills a day into him if it worked.

His doctor is the one who runs the IBD camp in Northern California. Reed is signed up as a jr. counselor. He will finally, officially meet others with Crohn's.

Reed and I snapped at each other a bit at the appointment, and the doctor just gave me a big smile. He gets it: Teenager and Crohn's!

Kimberly
02-20-2013, 03:23 AM   #2
Sascot
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Sorry to hear things are getting worse. Hope things start to improve soon!
02-20-2013, 04:01 AM   #3
upsetmom
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..I hope things start to improve.
02-20-2013, 05:47 AM   #4
my little penguin
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Hugs
Sorry he is still having issues.
Is there a plan to scope/mre ?
Or switch meds to Mtx or a biologic to get him some relief ?
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02-20-2013, 07:23 AM   #5
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Hugs, I hope they find something to bring relief for your son.
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02-20-2013, 12:23 PM   #6
Kimberly27
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Thank you to all for the support.

My husband and I are hoping that the inflammation was caused by a reaction to the Xifaxin. We'll see. I think they want to wean him off of a lot of the meds to really evaluate how well the Azathioprine is working.

Reed did have an MRE in late November which didn't show any strictures or fistulas. His scope was clean. In fact, he was diagnosed through a biopsy. Reed's main presentation is pain, not diarrhea, so they feel okay about taking him off of the probiotics for now.

Reed went back to school in late November, and has started martial arts again. He spends the night at friend's, and is basically functioning through the pain. He does get tired. He is supposed to go on a school Spanish trip to Costa Rica in early April. The doctor and his awesome nurse feel that there is no reason for him to cancel his plans. (Yes, I'm worried.) They will not put him on a new drug before he leaves. We all expect the numbers to go down, but we'll see. Fortunately and currently, Reed doesn't have bathroom issues that might affect his participation.

On a side note, Reed was part of the American Youth Leadership Program in Cambodia for a month last summer (environmental community service). A couple of months after he returned, he was in the hospital which lead to the Crohn's diagnosis. I can't help but wonder if the microbes were the environmental trigger that got the ball rolling. So...microbes in Costa Rica? As I say, I worry, but not enough to clip his wings. We did, however, pay for the extra medical insurance.

Kimberly

Last edited by Kimberly27; 02-20-2013 at 04:53 PM.
02-20-2013, 07:28 PM   #7
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As I say, I worry, but not enough to clip his wings.
What a great way to put it!! Let 'em live
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02-20-2013, 07:56 PM   #8
Johnnysmom
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My son started losing weight a few months after we came back from the Dominican Republic. I will always wonder too if that was his trigger.

I agree about not clipping his wings but did your GI say anything about his travels? My husbands family lives in Dominican republic and he wants to go back but I am afraid to.
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02-20-2013, 08:13 PM   #9
Kimberly27
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@ Johnnysmom,

The GI is the one who is encouraging him to go! I'm sure not having strictures, etc. might make the doctor feel more at ease with this. I figure if he's the head of the department, he probably has a good take on these types of things. I was surprised. I thought they'd discourage the travel.

Are your in-laws in or near a city with access to a good hospital? I think there is some kind of medical flight insurance available if you need to be airlifted out of the country. I'm not knowledgeable about that, but I bet there is someone on this site who is! Partly, I want Reed to see that he is still capable of doing amazing things.

I will always wonder about Cambodia... I wish there was a place to put that heavy feeling away.

Kimberly
02-20-2013, 08:14 PM   #10
Mehita
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I'd love to hear more about his travels too... especially gluten free. We were considering Costa Rica for spring break, but with my son having Celiac, we are so gun shy to leave the U.S.

I'm sorry he's not feeling the best right now. I hope you get some answers soon.
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02-20-2013, 08:22 PM   #11
Kimberly27
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@ Mehita,

Reed's kind of a pro at being gluten and casein/dairy free. He's going on nine years of experience. I packed way too many power bars for his month trip in Cambodia. He mostly ate fish, rice, and fruit.

I hear that in Costa Rica it's easy to go gluten free. Meat, rice, beans, fruit. Simple foods - easy compliance.

I did take extra care to pack over the counter medications in case he got sick. I didn't want him to try to find gluten/dairy free medicine in a foreign country.

I think your trip sounds exciting!

Kimberly
02-20-2013, 08:27 PM   #12
Johnnysmom
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We have a friend who is a Dr. and said he would arrange for airlift. He did say never to get treated at a hospital there or anywhere else if we can help it.

I am glad your son is able to travel and the GI is encouraging him to go.

I am sure once we have a little more experience under our belts about what to expect we will decide to do a trip. I am just a worrier!
02-20-2013, 10:33 PM   #13
Maree.
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I'd suggest having a hunt online and finding the most active expat forum for Dominican Republic, then check out what expats living there have to say about medical care. We've lived in a couple of developing world countries and the medical care has been patchy, some reasonable doctors and hospitals others you wouldn't touch.

Expat communities who live in place like that are generally really on the ball about what is and isn't acceptable standard (by western standards) locally and have a good sense of what circumstances they'd go straight to medical airlift out.
02-20-2013, 11:55 PM   #14
Kimberly27
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@ Johnnysmom

I totally get it! I was raised by a worrier, and I have acquired some of those habits. It can be hard to find balance in life. Also, the line for balance keeps moving, so you have to find it all over again! My antidepressants and my hypnosis/meditation track on my ipod that I listen to every night (no exaggeration!) have helped me tremendously. It's liberating to "let it go".

If Reed's numbers continue to escalate, then we will make a different plan. But for now, I don't want to borrow that worry. For now I'll concentrate on the positive- he's functional.

I would imagine that for Coast Rica and the Dominican Republic, Miami would be the airlift location. I bet Miami is set for emergency transfers from Central America and the Caribbean. I hope I don't need to know that first hand! Lol.

I think I'll contact the embassy and my congress representative to let them know when Reed will be there. If anything goes badly, I want someone to already know who he is.

Kimberly
02-20-2013, 11:59 PM   #15
Kimberly27
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@ Maree

Great idea! Clever!

Kimberly
02-22-2013, 03:51 PM   #16
Kimberly27
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Bad night at karate. Am I a bad mom for encouraging Reed to return? Now he doesn't want to quit again, but I'm afraid that he is aggravating his abdominal region (sit-ups, hits, kicks) and that it will affect his numbers on his blood test in two weeks. I don't want him to go on a more potent drug because I'm not protecting him. (You should see him fight. It's odd for me to suggest I'd be protecting him! He's small, but good.) We are both in the adult class, so I see it all.

He wants his normal life back, but he was so exhausted he was on the verge of crying.

Agh! Scream! Yell!


If there was an oscar for worst mother, then I think I'd be nominated.

Just a down day.

Kimberly
02-22-2013, 04:04 PM   #17
Johnnysmom
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It is hard to know when to push and when not to.

My son was in basketball last year and had to take the majority of the season off because he had just been diagnosed and it took months for him to heal and feel well. We gave it a good ole try for a while but it became clear he couldn't continue.

The hardest part was that we thought at the time if we let him quit that meant we were conceding that maybe he would never be able to play competitively again at all. It was just too painful for any of us to accept. Our GI told us that being involved in sports would not in any way make his disease worse. And as long as he felt up to it, it was in fact good for him.

Now he is feeling great and this year made the select team and has played in every game. It just took his body time to heal last year and he needed the rest. We pushed him until he decided he needed the break. It might help your son if he knows that this too shall pass and it's okay to take a break, it doesn't mean he can't start again and be able to compete just as well as the others.

Read about Matt Light. He is an NFL player who played his entire career with crohn's disease and just announced at his retirement that he had the disease. He is one of only 6 players in history to start in 5 super bowls.

You are a great mom, you just have a lousy situation to deal with and are making the best you can of it at the moment. (((((hugs)))))
02-22-2013, 05:47 PM   #18
my little penguin
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^^^ yeah that!!
We were told the same exercise is good and let them do as much as they want.
Granted my son was only 7-8 at the time of dx so he wasn't really pushing himself.
The Gi suggested we let him go / push him to go to keep normalcy since he will have it fir life and will unfortunately have to go to work or other event when he is not 100%.
But DS swims competitvely . It was hard to watch. He would only get in the pool once and swim maybe one lap and then leave.
After a year of healing he can now swim 45 minutes straight without resting multiple times a week.
So if you stick with it and provided he is on the right med to let him heal . I think sports are a good thing.
DS did not truly start to heal until he was put on remicade in the end of August.

Good luck
02-22-2013, 05:57 PM   #19
Kimberly27
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Thanks to both of you. Hugs.

I think my base fear what stated: That he would never be able to perform at the level he had been at, and that it really, finally meant that he was sick and that all of this was truly real.

This is all so new to me. He's always been so tough (not macho, just resilient), that I kind of thought, "He can push through this too." There is a lot of surrendering one has to do with this disease. Surrendering plans, hopes, goals...

(Big long breath...)

Okay. Round two.

Kimberly
02-22-2013, 06:05 PM   #20
my little penguin
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With the right meds and time he can get back to the same level but there needs to be time.
Our Gi tracks my son's meet times . We have ones from three years ago to today .
It paints a good picture of disease and how and when the meds helped.
He is not up to pre dx yet but I can say his competition times are really getting there.

It will be ok
Honest give yourself time to grieve the loss of the past life
And embrace the new normal .
02-23-2013, 04:17 PM   #21
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It's really hard to know what to do in these situations. I guess you can only let him guide himself exercise wise and to know when to stop or not. My son's surgeon kind of freaked me out a bit last week. He said while Andrew is feeling good to "live life to the full" and do whatever he wants, whether it be swimming or trampolining (I worry it will irritate his fistula) because this disease is so unpredictable you never know when he might not be able to do it
Sad thinking he has to take advantage of being well in case it all goes wrong and he has to stop.
03-20-2013, 12:18 AM   #22
Kimberly27
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Well I guess I'm officially a basket case (I write while crying- again!).

Update:

A month ago, Reed was taking 19 pills a day and was feeling very ill. Yeah, surprise, right? UCSF took his meds down to 2000 mg of Pentasa (from 4000), took him off his VSL#3 probiotics, and most importantly took him off of the Xifaxin antibiotic (which made him very ill). The Xifaxin pushed his SED rate back up to 30. There was quite a bit of pain.

1 1/2 weeks ago Reed had his first "pain free" days (4 days) since September. Then...he had mid term tests- stress- and down the path of pain we went again. He was grumpy, wouldn't eat, would snap at me, etc. I couldn't believe how happy I was when he was pain free, and then my hopes were crushed when I saw the same old @#$# happen again!

Now he's better and today he officially got the go-ahead from his doctor to go on the school trip to Costa Rica. He doesn't have GI symptoms, so I think he'll be okay. I should be happy, right? Yes, there is no logic in this story.

A synopsis of my crummy day:

So...I totally freak out today! My husband took Reed to the doctor (long drive) because I'm out of sick days. I forgot to take my antidepressant this morning because I was worked up over the appointment. (Did you catch the part about forgetting the antidepressants- that's foreshadowing.) The nurse had emailed suggesting Remicade, and I was in a state over it. I was afraid to use the "big gun" medication so soon. I guess I was expecting our lives to radically change today and I was trying to amp myself up for it. After the apt. my husband emailed that they weren't planning on changing anything yet, and instead of being happy- I totally started freaking out and crying. (Thank god my students were at lunch!) My poor co-worker! I blubbered and carried on. I took the antidepressant at lunch, but I've still been weepy all evening.

I hate being out of control. I hate that I feel like we are always walking on a tight rope. I hate that my son feels bad. I hate that he's so skinny. I hate that this has changed me. I hate that, even when I'm off meds for just one day, I lose it again.

I wonder? What am I really like off this medication? I'm I so unstable I can't make it through one day? Wow!

Family:
Oh yeah, a wealthy realative called and told me I was suppressing my son's ambitions by suggesting we might need to pick a cheaper college because of medical expenses. Bad mommy.

And yet another family member: Blah, blah, blah, blah, blah. End of story message: bad mommy. WTF!

I don't understand how people keep questioning the diagnosis. We are getting the vibe from many family members that we haven't researched this enough because they don't think he has IBD. Oh, yeah, and while we're screwing around not following though on leads, we are basically being irresponsible and bad parents. Yes, I want to believe it's something else and we can get off this roller coaster, but it's not.

...And I thought I was doing so well.

Thanks for letting me vent.

Kimberly

Last edited by Kimberly27; 03-20-2013 at 02:32 PM.
03-20-2013, 01:29 AM   #23
CarolinAlaska
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Kimberly, here's a big <<<HUG>>>. Your reaction today was not necessarily what you'd be like if you ever weaned off your medication, it is what you are like if you forget it and stop it cold turkey. There is a difference. You are okay. Your reaction to all those stressors has to more with the fact that your neurotransmitters went on a tilt-a-whirl than anything being wrong with you. Forget the family members. Give yourself a few days to readjust. It is going to be okay.
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03-20-2013, 03:41 AM   #24
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Sorry to hear you're having a tough time! I can totally understand the rollercoaster you are on. I wouldn't worry too much about freaking out when you didn't take your meds - a day when you were worried about Remicade and not being able to be there, and then being told they aren't changing things yet, would be alot to take in whether you had your anti-depressant or not.
I am a worrier too and when my son isn't doing well I spend alot of nights lying thinking too hard with tears streaming down my face.
I also understand that extreme of feeling so relieved when they are feeling good and then the knot in your stomach comes back when they feel bad again.
I am sure the doctors will get your son on a regime that will get him feeling better again, sometimes it just takes longer than we want.
You are not a basket case - life is stressful enough to cope with without dealing with Crohn's.
03-20-2013, 04:47 AM   #25
upsetmom
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.. Kimberly vent as much as you need.
03-20-2013, 10:17 AM   #26
Kimberly27
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Thanks everyone. I really felt better after writing to all of you. This is a great place.

I'm also nervous about the travel to Central America. I keep reminding myself that this is a good thing. He leaves in one week for 10 days.

Thanks for the info about the meds and the cold turkey effect. I think I might have forgotten my Monday medication too. Hmm... I took it today!

Leftovers from yesterday: puffy eyes and exhaustion. Deep breath.

Kimberly
03-20-2013, 12:45 PM   #27
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Medication or not we all have those days that everything seems to come at us at once or we just are as able to cope for whatever reason on that particular day.

I lost it a few weeks back, in the counselors office at school of all places. Couldn't stop crying all day.

I'm sure he will have a fabulous time in Costa Rica and will be a treasured memory for him.

Deep Breaths and hope you are doing better today.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-20-2013, 12:56 PM   #28
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Kimberly, absolutely vent away!! If you can't vent here where can you?

Big (((HUGS))), hang in there hun xx

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03-20-2013, 01:02 PM   #29
positivemum
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You are doing great and are just being a normal parent of a child with Crohns. It is a terrible disease and our kids don't deserve it. I look at my son and think if you can cope then so can I. But we care and worry as parents and it is TOUGH. You can only do your best and tears help
04-02-2013, 01:44 AM   #30
Kimberly27
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Okay, so we don't always get to post good news...so here goes.

Reed feeling well and having a fabulous time in Costa Rica! He is horseback riding, kayaking, hiking, etc. He even messaged me on facebook to tell me he is remembering to take his medication and to wear sunscreen.

Yeah for Reed!

Take each good day when you can!


FYI- In his backpack:

A double-sided, English/Spanish laminated copy of his medical conditions, medications, medical contacts, and emergency phone numbers.

A laminated page of Spanish phrases for ordering gluten and dairy free.

One extra day's worth of medication.

Hand sanitizer.

Kimberly
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