Waiting for GI appointment

[Misty1982]

Our 5 year old has been suffering with GI symotoms for a long time - but it has been persistent and progressive since April. In April he got really sick with what was diagnosed as gastroenteritis and infectious colitis. He was extremely sick for 2 weeks and have to have fluids twice during that time. He had a fever up to 105° for several days, vomiting, diarrhea and severe stomach pain. Since then he has fluctuated between constipation and diarrhea, almost always has bright red blood and mucus in his stool, has an urgency to go to the bathroom, and has frequent tummy pain.

We can't get into the pediatric gi until August 30th. Our family doctor ordered a CT. These were the findings:

"
IMPRESSION:

1. Somewhat featureless loop of sigmoid colon with suggestion of colonic hyperemia and mild rectal wall thickening, probably due to provided history of underlying colitis. Please correlate for possible inflammatory bowel disease versus infectious etiology.

2. Focal dilatation of the distal left ureter with mild ureteral endothelial enhancement. Findings could reflect sequela of vesicoureteral reflux and reactive change, ascending infection, or distal UVJ stricture. No hyperdense stone is appreciated.

3. Short segment small bowel to small bowel intussusception within the left hemiabdomen. Given the lack of surrounding inflammatory change or upstream bowel dilatation, this is favored to be transient in nature. However, given provided history of blood in stool, recommend close continued clinical follow-up with repeat imaging if indicated.

4. Appendix measures at the upper limits of normal with mild mucosal hyperemia. There is no significant periappendiceal inflammatory change. Correlate clinically."

Any advice or suggestions based on that? I hate the waiting game but know I just need to be patient.

 

[momtoone]

Hi I have been lurking here as my daughter is undiagnosed but has so many symptoms of the kids on here. I had to wait a month to see our GI and now waiting a month for her scope. My little girl is 10, and the waiting is KILLING ME! So I have no advice, but know you are not alone...I have not been so scared in my lifetime.

 

[my little penguin]

Can your pcp call the GI office based on the ct results to see if they can squeeze you in sooner as a professional courtesy ?

Doc to doc chatting can improve your timeline
Much more tha “the mom called” again

Also ask to be placed on a waiting list
And call every other day
Squeaky wheel and all

Has he had a fecal caloprotectin done ??
Other inflammatory blood work such as
ESR
cRP
Alt
AST -liver studies
Ferritin
CBC
cmp ?

Again those results might love him ahead

The only way to know would be an upper and lower scope
Was the ct done woth entography (have to drink barium and use gallulidium)?

Most GI don’t use CT with entography on kiddos anymore unless it’s a rush/emergency
Due to radiation
They tend to use mri with entography (MRE )


On top of a scope they can do a capsule endoscopy

Basically place the pillcam during the upper endoscopy to get a full view of the small intestine

Good luck

Ds was dx at age 7 and now is almost 15
So you can get to normal
Meds help
And it will be ok
Eventually just not right away

 

[pdx]

Misty1982 and Momtoone: I'm so sorry that both of your kids are having to wait so long to see a GI and get scopes, especially when they are sick and in pain. I'll repeat the advice that I often give in this situation, which is to keep taking your kids in to their pediatrician, or to urgent care, or even the emergency department, if you feel like their condition is getting worse. The doctors there may not be able to diagnose your child, but they will know if your child needs to be in the hospital, and that may hasten the process.

That was the path we ended up needing to take with my daughter. While we were waiting 6 weeks for a pediatric GI appointment, my daughter's condition worsened. We took her into urgent care and the doctor there admitted her to the hospital. She saw a GI that day and was scheduled for scopes a few days later.

Hang in there. The waiting is so stressful!

 

[crohnsinct]

Misty: I second MLP's advice. I would call the pediatrician and ask them to order a fecal calprotectin test. The GI will want to get one and having the results when you go in will move things along quickly. FCP results take about a week to come back and it would stink to wait only to be told that you have to run these preliminary tests first. The fecal calprotectin is one of the go to tests that a GI will order to determine if the issue is leaning toward organic (infection, IBD etc) vs functional (IBS etc). Also if he results are very high along with troubling blood labs then the GI may place you higher on the priority list.

Hang in there. The road to dx with gastro issues could be long but you are on your way. If it does look like it might be IBD we are all here and available but try not to get ahead of yourself. It could be a number of things.

Good Luck and keep us posted.

 

[Misty1982]

Has he had a fecal caloprotectin done ??
Other inflammatory blood work such as
ESR
cRP
Alt
AST -liver studies
Ferritin
CBC
cmp ?

Again those results might move him ahead

The only way to know would be an upper and lower scope
Was the ct done woth entography (have to drink barium and use gallulidium)?

He was positive for lactoferrin
ALT - 15
AST - 23
CRP - <1

I'm sure we have results for the others - I just can't find them. There is no evidence of bacteria or parasites in his stool samples.

Most of his labs have been in a normal range. One thing that did catch my eye was his WBC - it was 8.8 on 4/9 and 4.9 on 6/16. I think of those are in a normal range - it was just something that stood out to me as I looked.

The ct was done with entography.

I requested calprotectin yesterday but the doctor said he wants to let the gi take the lead. Maybe I'll call the gi and explain that the problem is active now if they'd like to order any labs.

Our doctor's office made the appointment with the GI. We are on the cancellation list in case someone cancels so we can get in sooner. They will receive the ct results today so hopefully they'll try to move him up once they have a bit more info.

I hate waiting but I know that is part of the course so I'm working hard to be patient.

 

[Misty1982]

Since he's had the ct with entography is there any need to do the mre?

I'm not sure why our doctor ordered the cte vs mre - maybe because we could do it locally (we live in rural Indiana so medical things generally mean traveling) and it is a faster test (Kaleb has ADHD-combined so being still for long stretches of time is difficult so he'd need to be sedated)

Thank you all for sharing wisdom and encouragement.

 

[Misty1982]

Misty1982 and Momtoone: I'm so sorry that both of your kids are having to wait so long to see a GI and get scopes, especially when they are sick and in pain. I'll repeat the advice that I often give in this situation, which is to keep taking your kids in to their pediatrician, or to urgent care, or even the emergency department, if you feel like their condition is getting worse. The doctors there may not be able to diagnose your child, but they will know if your child needs to be in the hospital, and that may hasten the process.

That was the path we ended up needing to take with my daughter. While we were waiting 6 weeks for a pediatric GI appointment, my daughter's condition worsened. We took her into urgent care and the doctor there admitted her to the hospital. She saw a GI that day and was scheduled for scopes a few days later.

Hang in there. The waiting is so stressful!

Just curious what symptoms caused you to go to urgent care if you don't mind sharing.

 

[Misty1982]

Hi I have been lurking here as my daughter is undiagnosed but has so many symptoms of the kids on here. I had to wait a month to see our GI and now waiting a month for her scope. My little girl is 10, and the waiting is KILLING ME! So I have no advice, but know you are not alone...I have not been so scared in my lifetime.

I prayed just now for peace for your family, comfort and healing for your daughter, and wisdom for her doctors.

The waiting is so hard. If we knew what it was we could have a plan of action but when we know nothing we have no choice but to wait it out and let the problem persist.

We did eliminate gluten for our guy but his labs indicated a mild gluten allergy and we are upping his iron at our doctors request to compensate for the blood loss.

 

[my little penguin]

CTE is the same as a MRE in terms of info
Wbc would drop after an infection while the body builds up reserves
4.9 is very normal still

Most big kiddo hospitals have lower doses of radiation for cte than adult places
And for MRE they have movie googles so kiddos don’t need sedation
They need you to breathe in and out /follow instructions for MRE

Plan on traveling to the big kiddo hospital that deals with ibd
If he is dx woth crohns

Typically GI visits are every 3-4 months and big testing 1-2. Per year
Bloodwork every 3-4 months

Buzzy bee
https://buzzyhelps.com


Works well as distraction for blood draws and iv
Shot blocker can also help woth shots

https://www.bionix.com/healthathome/product/shotblocker/

Your GI hospital should have child life on staff they can help with tests /procedures

They will also have beads of courage program
Very helpful as well

http://www.beadsofcourage.org

http://www.crohnscolitisfoundation.org/assets/pdfs/pete-learns-all-about-crohns.pdf

http://www.crohnscolitisfoundation.org/assets/pdfs/ibd-me-ac.pdf
https://www.goodreads.com/book/show/809126.Toilet_Paper_Flowers

Books if he gets dx

 

[pdx]

Just curious what symptoms caused you to go to urgent care if you don't mind sharing.

It's been a few years, so my memories are a little fuzzy, but I know that my daughter had been missing a lot of school over several weeks due to pain and overwhelming fatigue. She was having a lot of diarrhea, some bloody, and had started to lose weight. My husband was the one who took her into urgent care, and he says that she was really dizzy at the appointment, and that her blood pressure was low, probably due to dehydration. The doctor asked her to stand for a blood pressure reading, and she almost passed out after just a few seconds of standing.

I have to say that when your child has been sick for a long time, it's really hard to know when to take your child back in to the doctor. A lot of my daughter's symptoms were gradually getting worse over months, and so you can lose track of what's normal.

 

[crohnsinct]

I was rereading your original post and wanted to share some thoughts....

a gastro infection or illness can cause raised lactoferrin or calprotectin. So I would definitely want a repeat test and would opt for a cal pro over lactoferrin as that is more reliable and offers a value rather than just positive and negative.

After such a bout of acute illness the gut microbiota could be very off. This could sometimes lead to SIBO (Small Intestine Bacterial Overgrowth). The symptoms of SIBO are very similar to Crohn's and similar to what your son is experiencing. The mucus, pain, alternating between diarrhea and constipation and nausea are pretty hallmark. But just for fun they are also pretty hallmark of IBS as well.

The blood is not hallmark of either of those but as you come to find out around here, blood doesn't always mean IBD either. It could be fissures or internal hemmies etc.

My daughter was prescribed probiotics to treat SIBO and IBS. You may want to try adding those for a bit and see if it has any effect on any symptoms. Our doctor has us using Florastor but many will say you need a much stronger probiotic such as VSL and even then some say VSL prescription strength. But I think it might be worth it to try to rebalance his gut flora for now and it couldn't hurt.

 

[my little penguin]

Be careful of probiotics if he isn’t tolerating milk
Most otc probiotics have lactose or milk as a base
This can cause issues if he isnt tolerating dairy

Post infectious gastroenteritis symptoms can linger for months
My non ibd kiddo had gastroenteritis and it took almost 6 months to go to normal


At this point I would NOT change diet or add things or substract anything
Because that may make symptoms better
As in if he drank nothing but pediasure
It may fix his gut
But what you fixed wouldn’t be known and when you went back to real food it could come back

The GI needs to be driving the ship (not us )
And the GI can order the right tests to help figure out the issue

When you add or subtract things
The water gets muddy and very hard for the GI to figure out what is what

We are the ones crohnsinct is referring to
Our GI will only prescribe prescription strength vsl #3
It’s expensive but for my kiddos Crohns rectal issues it works
He was having diarrhea multiple days a weeks
And once restarted on vsl#3 prescription strength
Solid stool

Granted he does still have to take strong meds as well
Vsl is proven to work in UC which involves the rectum
Hence why our GI chose that one

Your kiddo could have Crohns
Or something different

Before Ds was dx many of his docs thought
EoE or EC
Or something else
But none thought Crohns
Even after his scope
Until
The biopsies were back

My pint you may go in thinking one thing but get a different dx
Hence
WAIT for your GI appt before doing anything

 

[Pangolin]

CRP below 1 would be unusual in active Crohn's.

 

[my little penguin]

But not unheard of
Unfortunately CRP abd ESr
Can be “normal” In up to 40% of patients when flaring
Ds is one of those whose bloodwork is “perfect”
But biopsy tells a different tale

 

[my little penguin]

CRP can be falsely low despite active mucosal inflammation and is more reliable in cases of transmural inflammation. Fecal calprotectin (FC) is more specific than CRP for intestinal inflammation, except in isolated ileal disease. FC better correlates with endoscopic findings than CRP and is useful in monitoring Crohn’s patients for postoperative recurrence. Optimal FC cutoffs are still being determined.

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616202/

 

[crohnsinct]

Yeah sorry I have a daughters with normal blood labs but fcp in the thousands and one with a colon that looked like chop meat and the other with TI inflammation.

 

[pdx]

Yep, my daughter also has low CRP and sed rate while flaring. Fecal calprotectin is a good indicator for her, though.

 

[Misty1982]

At this point I would NOT change diet or add things or substract anything
Because that may make symptoms better

WAIT for your GI appt before doing anything

We eliminated gluten a month ago when his labs showed a mild gluten allergy. He has been taking probiotics since April. None of that has made any difference in his gut health. Would you continue to eliminate gluten and give the probiotic or step back from those things so the GI can get the full picture?

We just added an iron supplement because he is passing quite a bit of blood. Would you take a break from the iron supplement?

 

[Misty1982]

Thank you everybody. I really appreciate your reassurance, advice, and support. This is a scary world we've walked into and I'm so unfamiliar with it.

 

[my little penguin]

Gluten allergy ??
Did bloodwork show celiac ?
Or was it IgE positive for true food allergies like wheat ?
Was it done by an allergist ?
The only true gold standard for celiac is biopsy from a scope but you have to be eating gluten for at least a month .
Did the GI office tell you to stop gluten ??

 

[Misty1982]

Gluten allergy ??
Did bloodwork show celiac ?
Or was it IgE positive for true food allergies like wheat ?
Was it done by an allergist ?
The only true gold standard for celiac is biopsy from a scope but you have to be eating gluten for at least a month .
Did the GI office tell you to stop gluten ??

IgE response to wheat - a food allergy. I haven't personally talked to anybody at the GI office yet. Our doctor's office scheduled for us. Our family doctor ordered a slew of labs to try to narrow down what was going on. The results indicated a mild wheat food allergy. Though he didn't seem to have any reaction to wheat that I'm aware of our family doctor suggested eliminating wheat to see if that helped with some of his gi distress. It hasn't helped at all - he is 3 weeks gluten free.

 

[Maya142]

If it is NOT an allergy, then I would not eliminate gluten. You need to be eating gluten for a certain amount of time before the scope to confirm celiac disease. I believe it is 2 months.

Is it an IgE allergy or IgG? Because we did IgG tests and later learned they aren't reliable at all.

Are you seeing a board certified pediatric allergist for the gluten allergy? I would want a referral to one vs. having a family doctor order the tests because they can cause a lot of false positives. As an example, I had some skin testing done last year to determine if I had seasonal allergies, some food allergies and/or cat/dog dander allergies. We did the milk allergy test because I had noticed symptoms after drinking milk, but the skin test was negative. So I'm likely just lactose intolerant and started drinking lactaid milk and using lactaid pills and that has worked well for me,

But the allergist also did an egg allergy test that was positive. I don't know why she did it because it was not discussed with me prior to the test, but I eat eggs daily without any symptoms at all. So after discussing it, she said it was a false positive.

The only positive allergy test I had was ragweed - so I have seasonal allergies and a nasal spray has really helped.

I would hold off on the iron supplement just because that can cause MORE belly symptoms like nausea and abdominal pain. What was his hemoglobin when tested last?

And the probiotic - my daughter has been able to tolerate Culturelle but she does NOT tolerate VSL#3 well - the OTC version or the prescribed version. It causes cramping and bloating. We do use it after she has CDiff (which she has had twice) but otherwise we just use culturelle and it works well for her.

I'd actually just wait for the appt. before changing anything. I know it is hard to wait and watch your child get worse, but you will get the most accurate results if you do not change anything. There will be fewer variables to figure out which is always good.

I do agree about FCP test - I would push to get that done because if there is inflammation, the FCP will likely show it and that will speed things up.

Two other things - 1) since the kiddo has to drink contrast (barium) for an MRE, he/she cannot be sedated. So that may be why your family doctor ordered a CT enterography, Or it could simply be that he did not know that MREs are now used for kids MUCH more often than CTs because of the radiation risk.

2) When is your GI appt.? You may have said it somewhere in this thread but I seem to have missed it.

 

[Misty1982]

It was an IgE. I've attached the Wheat IgE and hemoglobin, which was 14.

 

[Misty1982]

We can't get into the gi until August 30th. That seems sk far away right now.

 

[Misty1982]

My older son is allergic to basically everything that creates pollin, mold, dust, and corn (food). We've been doing immunotherapy with him for a year and a half.

Because of Kaleb's ADHD and the fact that all of the IgE's that weren't in the normal range were very mild we chose not to go to an allergist just yet. We thought maybe removing gluten would help his symptoms if he had a true allergy but his symptoms have gotten much worse in the past month instead of better.

 

[my little penguin]

True allergy doesn’t work that way
0.35 is barely positive
Trye IgE allergy means you can not safely consume a full serving without an allergic reaction
Most kids with pollen allergies can have elevated IgE numbers since the protein structures are so similar

That said 50% of IgE blood/skin tests are false positives
Ds tests positive by IgE to
Corn /wheat/oats/barley/rice/soy/sesame/peanuts and tree nuts

He is only truly allerguc to Tree nuts and fish
The gold standard for diagnosing a food allergy is to see a board certified allergist
Determine in the right clinical history and test results if you have a IgE food allergies

If you do you react and need an epi pen with strict avoidance

Because it can kill in a matter of minutes

Gluten intolerance is NOT an allergy it just makes the kid feel sick
Celiac is not an allergy but can do damage to the intestine
So it’s very important to know why your avoiding
And how it affects your body

As teens and young adults they will cheat on diets and meds
Obviously if it’s just gluten intolerance kiddo feels sick but no biggie
If it’s ige wheat allergy the kiddo reacts and could die
(Most fatal food allergic reactions don’t happen to toddlers once the allergy is known but to teenagers due to risk taking )

So you need to know
The positive predictive value for wheat is very high number

Definitely seek an allergist advice
Since avoiding a true food allergy is not enough
You would need an emergency action plan
An epi pen
And avoid cross contamination in foods

Odds are not the case for your kiddo

But definitely seek a allergy docs opinion
Prior to pulling or reintroducing food


One important thing to note
If you test positive to a good that means the body is sensitized to the food protein
Sometimes when you pull the sensitized food for a longer period of time
The body can become allergic and react when re introduced

Happens more so woth those who have had allergic reactions in the past

Ds was allergic to tree nuts
A few years ago he passed in the office allergy food challenges (gold standard) for all tree nuts
About 6 months later his Crohns was flaring so GI put him in een (formula only ) fir 8 weeks then an elimination diet afterwards for another month or two
When we reintroduced tree nuts again
He had an allergic reaction
He also developed a fish allergy at the same time
More than likely due to not consuming the food

So please see an allergist

 

[Misty1982]

Just an update - I called the gi today to ask if there had been any cancellations or if there was any way to get the process started before my son's 1st appointment in 7 weeks. They said no but if our primary doctor called them they could tell him what to order.

I emailed our primary doctor. He responded that he understood and agreed with my concern and would call the gi. If the gi was unwilling to work with him he wanted us to pack a few days of clothes and supplies and drive our son to the hospital the gi office is in (2 hours from home) and take our son into the ER eith all of our lab and test results, reports from er and doctors visits, etc. Our doctor said our son was sick enough that given his history, current symptoms, and everything we know from labs and tests the hospital would have no choice but to admit him which would get the ball rolling.

A few minutes after receiving that email the gi's office called. They are able to work him in Monday at 8 am.

I hated to be "that mom" but I couldn't just let my child suffer for 2 more months.

Thank you all for your helpful thoughts and encouragement. I know we still have a long road ahead of us but I'm thankful to be out of the holding pattern and making progress.

 

[pdx]

So glad to hear this. Hope you get answers soon.

 

[my little penguin]

So glad you got an appt
Nothing moves fast in GI land
But having an appt is a good start

 

[Maya142]

Sometimes you HAVE to be that mom to get things moving. Glad you got the appt. moved up. Good luck!

 

[Misty1982]

Post appointment update:

We had a great first appointment. Kaleb is being seen at Peyton Manning Children's hospital. The doctor is very kind and thorough. The appointment lasted nearly two hours. She took time to make sure she understood our concerns and to make sure we understood her suggestions.

She requested that Kaleb go back on an unrestricted diet - no surprise thanks to the advice we got here. I have attached a summary of what we discussed. His colonoscopy and endoscopy are scheduled for August 7th.

Kaleb had a horrible day yesterday but the best day he's had in weeks today. Yesterday he slept 19 hours and had intense pain that caused him to sweat all day. Today he was tired but didn't nap, only had pain when he needed to go to the bathroom, and I didn't notice any blood in his stool. It was so strange, almost like a switch was flipped, but I'm thankful for today.

 

[Misty1982]

Here is the rest of the appointment summary.

 

[my little penguin]

Yep that sounds about right
For celiac screening to be accurate for the colonoscopy /endoscopy
He would need to be eating bread for at least a month
Which given the scope date ....
Is less than a month

Prep is standard
Get a good diaper cream or calmoseptine (that is found as otc behind the counter of the pharmacy)
You need a good barrier cream to keep his bottom from being sore

Gatorade organic is all clear so there are 4 flavors to choose from
Start clean out early
When it’s like “peeing Mountain Dew “ coming out
Then your good
If you start later you will be up all night

Bring extra clothes for you and him
Empty tummies tend to puke on the ride in

Bring an overnight bag for you and him leave it in the car
In case they admit after the scope if they don’t like what they see

Ask ahead if you can have zofran on hand to take during prep or on the drive in
This can help with vomiting

Prep is hardest on the kiddo
Scope time is hardest on the parent
But you will get through it

Good luck

 

[pdx]

Glad that testing is moving forward, and I hope that your son continues to have some days like today in the meantime.

 

[Maya142]

Yup, all that (I know it looks like a LOT) is standard. The prep is the worst part - my daughter always chooses a couple of movies or a tv show she can watch in the bathroom during prep.

Once he starts drinking the Miralax + Gatorade, he shouldn't be too hungry. It's a lot of liquid, so he may get nauseous. Zofran really does help - we always have it on hand for scopes/MREs.

And I definitely agree that you should take an extra change of clothes in the car, and some plastic bags/buckets in case he vomits.

Calmoseptine is our favorite barrier cream since he will be going to the bathroom so much. We get it on Amazon. Desitin works too, but my daughter like Calmoseptine better.

They will usually tell you what color of Gatorade not to get - they don't like you using red since it could be mistaken for blood. Some GIs say no to blue and purple too. You also have to avoid jello and popsicles that are those colors.

Good luck!!!