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07-03-2013, 06:26 PM   #1
Farmwife
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My Farm Boy

We'll I had HOPED and PRAYED that I would never type a thread just for my son.

My hubby doesn't want my son's named used. (Oops I forgot to tell him I already have in the past.)

Here's an over view of my Farm Boy's health.

He has had chronic sinus problem and had his tonsils removed because of repeated infection since 2 months old. History of canker sores.
Growth slowed down to an inch last year.

Other than that he has been in great health.

The last 3 months
Once in awhile he would say his throat hurts.
slight belly pains
Lose 10 lbs in 3 weeks. Dropped down to 38 lbs and he's almost 4 ft tall. He's a string bean anyways.

The last two weeks
Increasing belly pain after meals BUT nothing that stays long and has always gone away with in an hour.
Lose of ALL appetite.
Today his mouth is filled with canker sores. Can't and wont eat.

His Allergist and even his new GI feels that it's EoE.
However I know that it might be IBD. I hope not. I hope it's not both.

Has any of your kids have it hit this fast???
I mean my boy was great, no problems what so ever a few months ago and today he drops in the video store and says his stomach hurt and I even had to give him his first suppository because his not poo'ing.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
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EN/EEN- since (1/12/13)
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07-03-2013, 06:39 PM   #2
CarolinAlaska
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FW - That is terrible. He's in my prayers. I sure hope it is an easy answer and an quick solution...
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J's story: http://apathnotchosen.blogspot.com
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Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
07-03-2013, 06:44 PM   #3
my little penguin
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But I thought he was on swallowed steriods ?
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07-03-2013, 06:59 PM   #4
DanceMom
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Actually, your son sounds quite a bit like my 6 y.o. She's had her tonsils/adenoids out at 21 mo and then her adenoids out again this past April (yes, the stupid things grew back!). She has Obstructive Sleep Apnea and is scheduled for sinus surgery next week. She only weighs 35 lbs but that isn't surprising because she barely eats. She complains of stomach aches and sometimes vomits mucus (crazy bad post nasal drip!). She doesn't have any allergies, just small airways and crappy sinuses.

We have high hopes that this sinus surgery will be the answer to her problems and once she heals she will eat, sleep, and grow as she should. I hope your son's problems are a relatively simple fix as well. I know we are quick to be alarmed, but so many illnesses present with similar symptoms.
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07-03-2013, 07:47 PM   #5
Farmwife
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But I thought he was on swallowed steriods ?
The Allergist put him on it.
It worked (kind of) for two weeks but then wore off.
His new GP said to take him off until he's scoped.

However at the appointment with the Allergist yesterday he said IF the scopes are far way that he doesn't want my son to go too long without it.

So right now no swallowed steroids.
07-03-2013, 07:52 PM   #6
my little penguin
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Is he seeing the same Gi as your dd?
07-03-2013, 08:04 PM   #7
Farmwife
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Don't know yet. I'll find out by Friday which hospital can get us in first.

Mary do you know a Dr. Dematos at Mott's? That's who we'll see if we go with Mott's.
07-03-2013, 08:23 PM   #8
crohnsinct
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Remember O had no symptoms except slow growth and not gaining weight and then one day BAM! The big D for two weeks and she was admitted into i.c.u., on fluids, ptn, iv steroids, oxygen and receiving blood transfusions. So yes it can hit hard and fast.

10 pounds in 3 weeks should be sounding all kinds of alarms. What does your GP say? Our Ped would be sending us all over the place testing for every disease known to man with a child that young losing weight that quickly.

Good luck!
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Daughter T dx 1/2/15 at age 11
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07-03-2013, 08:25 PM   #9
crohnsinct
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O.K. responded before all the steroid talk..I understand the rock and hard place but keep in mind if you can get him in for a scope and it is relatively soon going back on steroids may mask what is going on.
07-03-2013, 09:54 PM   #10
my little penguin
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Swallowed steriods is a treatment for EoE period.
But without knowing he has EoE ( only a biopsy can dx )
You could be wrongly treating another disease .

Case in point - DS had various symptoms ( which we now know was upper / lower Gi crohn's related).
At the time allergist tested for soy alkergy since it tended to happen around foods with soy.
He tested positive so we took away all soy . Declared him soy allergic etc...
Year later we challenged soy at the hospital no symptoms he passed.
So treating what fit without doing all the tests did not really help my child.
In fact it let him be in pain for a year extra since we thought he somehow had managed to eat something cross contaminated with soy.
07-04-2013, 05:04 AM   #11
Dexky
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My son's serious problems came on that fast FW. What are you calling canker sores? Does he get apthous ulcers on his tongue?

I hope you get good news!
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07-04-2013, 06:39 AM   #12
Farmwife
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Yes Dex he has gotten them on his tongue before. Right now their on his gums and inside his cheeks. My hubby also has a bad history of canker sores.


crohnsinct
Both his GP and Allergist want answers quick. A year ago to get a GI appointment 5 wks away would have been unheard of. I do know the GP wrote on the referral the he wanted Farm Boy scoped.

He was able to put 8lbs back on but I've been supplementing with his calorie smoothies. I figure he needs an extra 600 cals a day to keep him around 45 lbs.

I really hope this is EoE. He is still healthy and energetic. He has no joint pains, no eye problems and no skin problems like Grace.


Here's a question,
Devos said they could get him in at the end of the months, hopefully on the day Grace gets scoped.
BUT they said it would be with a PA.
Would you go with this or say you want to meet with a GI?
If we choose to meet with the GI then that appointment will be at the end of August.
07-04-2013, 08:01 AM   #13
my little penguin
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Only a Gi - for my child is complicated
Pa would be fine for follow up or run of the mill reflux etc....
For initial appt I like to have a full eval .

We wanted in fast for DS for a dermo
So I agreed to see a pa for the first visit.
DS scares most medical professional so it was the same.
We wasted three appt ( final one with the actual dermo- second was with a fellow)
Before we realized they couldn't help DS.
When I switched dermo docs I insisted on seeing the actual doc first .
Things went much better .
07-04-2013, 11:48 AM   #14
Mehita
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Can you take both appts? Maybe see the PA and scare him/her enough to get you an earlier GI appt? But if that doesn't work, have the first GI appt in your back pocket?

Otherwise, I'd go the GI route. My experiences with PA's are always, "I'll have to ask the dr about that" and a complete waste of time.
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07-04-2013, 12:01 PM   #15
DanceMom
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A sees a Dermo PA and she is great. For anything major (like biopsies) she calls the doctor in for approval and the doctor communicates with the GI as well.

I would probably take the PA appointment and at least get the ball rolling that way (if you truly think his issues are GI related). I'm sure the PA can schedule some basic testing and help to determine if you are looking in the right direction.
07-04-2013, 07:58 PM   #16
DustyKat
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Oh man FW...

What is a PA?

Matt has always had sinus/breathing type issues. Came to head when he was 10 and he ended up having a reduction of enlarged turbinates. The surgery plus nasal spray solved that issue and outside of that he had always been well, very well.

I don't know if you have ever read Matt's story but other than my partner and commenting on how tired he looked at one point there was nothing to indicate that Matt had crohn's, and we a million and one legitimate reasons for him to be tired. No EIM's, no nothing. Oh he did go through a phase of mouth ulcers six months prior that responded well to B Complex.

So what it came down to was a couple of random vomits, a few days of reduced appetite and then a night of vomiting. That was it. If Sarah didn't have Crohn's I wouldn't have looked twice at his symptoms. As it was come the Monday I asked the GP to run inflammatory markers and other baseline bloods. I don't know why I asked and fully expected they would return normal. The rest as they say is history. (((sigh)))

So yes, it hit fast and it hit hard.

So hoping that for little guy this is NOT the case. Good luck!

Dusty. xxx
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07-05-2013, 05:37 AM   #17
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Physician's Asst. or Nurse Practitioner...Actually, it's what you should be
07-05-2013, 05:42 AM   #18
DustyKat
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07-06-2013, 07:42 PM   #19
ChampsMom
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FW - my son's symptoms came on really fast... I just assumed he had the same stomach flu that everyone else in the family (area) was suffering with, but his didn't go away. Even took him to the doctor's twice and they said it looked like the flu - I didn't notice the weight loss initially as he was always in hockey gear, - it was my Mum that noticed it. He has mouth ulcers, diarrhea and then cramping. He didn't lose his appetite that I remember.

I pray you get answers soon!

((((hugs))))
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07-07-2013, 07:52 PM   #20
QueenGothel
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No idk that GI. Saw a lot of them so I am very surprised I don't. Must be newer. By my research it looks like she was at Taubman Center odd as well because her biography reads she did her fellowship before her residency. When will you know where your going? How are you able to go to a Motts now? Did your insurance allow it or CSHC? I really hope this is nothing and that your paranoid. Doubtful though as your usually pretty spot on. Please let it be nothing. Praying for your family my friend. You take care. Do you have a date for the scope???

P.S. if tagging me the name Mary was spoken for, so you can tag me as Queen as well and I will see it. Sorry for the late response.
07-07-2013, 08:22 PM   #21
CrohnsKidMom
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Hi FW, Sorry to hear about your son. My 8 yr old's son's Crohn's came on quick. He seemed to have a flu for a few days, but then it got worse. Fevers and nights sweats, mouth ulcers, belly pain, no appetite and major pain when he did eat. Similar to Champsmom, my mother visited and commented that he looked pale and thinner than the last time she saw him. A trip to the dr and blood work was ordered, he was anaemic. Within a week we had a working dx of Crohn's. Scopes confirmed the dx 2 wks later. No meds were prescribed until they were absolutely sure of the dx. When I look back, there were little hints of Crohn's even back to his toddlerhood (ie. he's always been bothered by constipation). My thoughts and prayers are with you. I hope you get some answers soon!
07-25-2013, 07:52 PM   #22
Farmwife
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Little Farm Boy will get his scopes in 8 wks.
Meant with the GI's PA at Devos (LOVE HER). She was great and very informative.
She agreed, scopes would be the best option.

So I guess I should just start stocking up on the Miralax.
07-26-2013, 04:21 AM   #23
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Sorry to hear about your poor boy! At least having gone through it all with Grace then you know what to do and who to talk to if you need anything. It will be good to get the scopes done - at least that will give you some answers, although 8 weeks is quite a while away. Hope he manages to start eating to keep his strength up.
07-26-2013, 04:26 AM   #24
DustyKat
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Oh my, the poor wee fella...

It is good to hear though that they aren't going to fiddle fart arse around, even if it is 8 weeks away. Good luck!

Dusty. xxx
07-26-2013, 04:46 AM   #25
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Hope your 8 week wait is not too eventful and he feels okay!

Sounds like you're heading in the right direction (((HUGS)))) xxx
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07-26-2013, 06:08 AM   #26
Farmwife
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Thanks everyone.

He has to wait 8 wks because he needs to be on a PPI for that long.
This has more to do with EGID'S and *IF* he has it.

Out of curiosity, if your kids take a PPI, how high is their dose???
Farm Boy is 6 and was prescribe 20mg once a day.
07-26-2013, 07:18 AM   #27
crohnsinct
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At dx O was 68 pounds and was put on Prevacid 30mg once a day.

Last edited by crohnsinct; 07-26-2013 at 12:02 PM. Reason: to add med name
07-26-2013, 08:08 AM   #28
DanceMom
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A is 8 and takes 20 mg of Prilosec and just added Prevacid 15 mg (taken separate).
07-26-2013, 02:21 PM   #29
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When DS was on it, ages 12 and 13, he was on 20mg. He weighed between 70-80 pounds when on it.
07-27-2013, 10:55 PM   #30
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Liam 10 (62 pounds at time) - was on 40mg per day at one point, without a diagnosis.
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