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H's Brother

He's had weird issues pop up, but lately over the summer and getting much worse over the past several weeks is abdominal pain.
He was prescribed Zantac for possible GERD which just doesn't make a dent in the pain.
We're getting a referral to GI, labs (not fcal unfortunately ),and an abdominal ultrasound. He is also going to try a PPI for the possible GERD.
Anyone have experience with GERD? Did the meds help? Did it end up being Crohn's?
We're having a hard time over here.
I think I jinxed it by trying to start an exercise class, lol. Now I have some kid home from school every day.
 

my little penguin

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Staff member
Meds really help
Oldest has Gerd but not ibd
Diet is also key
You often need a combo of both
Not laying down after eating
No spicy foods
Soda pop or carbonated drinks are a big no
No tomatoes/sauce etc...,

A lot of trial and error
 

Maya142

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Staff member
My kiddo needed a PPI for GERD - Zantac didn't work well enough. Like MLP said, diet changes also really help.

How old is he? The other thing that bothers my daughter is caffeine - in coffee or tea. He may not be old enough for that but wanted to mention it. Also chocolate! And tomatoes.
 
He's 9. He doesn't have coffee or tea, or soda. Tomatoes and sauce really bother him. Good mention on the chocolate right before Halloween. I will pull it from his bag. We saw a dietitian and she said garlic could be a problem too. We cut out orange juice.
 

Maya142

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Staff member
Yes, garlic is definitely a trigger for my daughter. No side effects from a PPI for us. My daughter has been on one for years. There are risks with being on them - they prefer using Zantac or Pepcid now, but we tried those and they didn't work for M.

She is also on an NSAID, so it's very important for us to protect her stomach.

Gastritis can also cause stomach pain and can be caused by reflux. For that, we use Carafate. M takes Carafate regularly to prevent gastritis, but it is often given for a short period of time if gastritis is suspected or found on a scope.

Have you tried something like Maalox or Tums for the pain? If it's acid, that should help. We find Maalox works better, so M takes that when she has really bad reflux. It works pretty quickly.
 
Hi. From birth my son was always a weird throw up kid, usually on airplanes or school plays or malls. Every time he got sick it included a stomach issue. He would get nauseous at times. We just thought he was different! He was - he had Crohn’s! Tums never did much.

He started a PPI when first hospitalized as an off label treatment for inflammation he had in duodenum, along with steroids and EEN. He stayed on the PPI when he moved to some food. Still on it years later. No side effects.
 
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my little penguin

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Our GI will NOT use ppi in kids anymore
They know ppi lower magnesium and cause polyps to grow
The GI will use carafate / zantac etc...
 
No magnesium or polyps here. In fact, the one time I convinced - well I won’t say name bc it might show up in a search 😘 - a GI IBD specialist at Boston to switch to carafate, which he said would not work, horrible reflux returned but worse...the next biopsy showed trace inflammation in duo. Coincidence? Maybe. But after returning to PPI, next one was clear. So PPI it will be!
 

Maya142

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We haven't had issues with PPIs either. Our GI still uses them when necessary - at one of the big children's hospitals, which has one of the biggest pediatric IBD centers in the US.

I do worry about them long-term but I also worry about inflammation in her stomach long-term.

M also has moderate/severe Gastroparesis and severe reflux is very common with that. It actually has taken a double dose of a PPI (we had to really fight insurance to get them to pay for a double dose), daily Carafate, Pepcid and Maalox as needed to control it.

It is a LOT of medication, but like Optimistic's son, if we step back even a little bit, her scopes show inflammation in her stomach.

Long-term PPIs do put you at risk for low bone density, and while M has that, it has actually improved in the last year as she has gained weight and has become a healthy weight. They also put you at risk for CDiff. which she has had twice.

Both times she had CDiff it was after antibiotics, so not sure if it was related to PPIs at all, just wanted to mention it.

I don't see us stopping her PPI any time soon.
 

my little penguin

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Go to:
Abstract
Fundic gland polyps are now commonly recognized during endoscopy. These polyps are benign, often multiple and usually detected in the gastric body and fundus. In the past, these polyps were sometimes associated with familial adenomatous polyposis. In recent years, it has become evident that increasing numbers of these polyps are being detected during endoscopic studies, particularly in patients treated with proton pump inhibitors for prolonged periods. In some, dysplastic changes in these polyps have also been reported. Recent studies have suggested that there may be no increase in risk of colon cancer with long-term proton pump inhibitor therapy. While temporarily reassuring, ongoing vigilance, particularly in those genetically predisposed to colon cancer, is still warranted.

Keywords: Gastric polyps, Fundic gland polyposis, Gastric dysplasia, Gastric cancer, Colon polyps, Familial polyposis coli, Adenomatous polyposis coli gene mutation



Published online 2008 Mar 7. doi: 10.3748/wjg.14.1318
PMCID: PMC2693675
Proton pump inhibitors and an emerging epidemic of gastric fundic gland polyposis
Hugh James Freeman



From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2693675/
 

my little penguin

Moderator
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5214735/

Stomach polyps form in response to damage to your stomach lining. The most common causes of stomach polyps are:

Chronic stomach inflammation. Also known as gastritis, this condition can cause the formation of hyperplastic polyps and adenomas. Hyperplastic polyps are unlikely to become cancerous, although those larger than about 2/5 inch (1 centimeter) carry a greater risk. Adenomas are the least common type of stomach polyp but the type most likely to become cancerous. For that reason, they are generally removed.
Familial adenomatous polyposis. This rare, inherited syndrome causes certain cells on the stomach's inner lining to a specific type of polyps called fundic gland polyps. When associated with this syndrome, fundic gland polyps are removed because they can become cancerous. Familial adenomatous polyposis can also cause adenomas.
Regular use of certain stomach medications. Fundic gland polyps are common among people who regularly take proton pump inhibitors to reduce stomach acid. These polyps are generally small and aren't a cause for concern. Fundic gland polyps with a diameter larger than about 2/5 inch (1 centimeter) carry a small risk of cancer, so your doctor might recommend discontinuing proton pump inhibitors or removing the polyp or both.
From

https://www.mayoclinic.org/diseases-conditions/stomach-polyps/basics/causes/con-20025488
 

my little penguin

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No clear mechanism has been found to explain the possible pathogenesis of FGPs due to PPI use. Hypergastrinemia due to PPI use was thought to be a probable cause of gastric mucosal hypertrophy and polyp formation. However, a study by Fossmark and colleagues found no relationship between FGP formation and serum gastrin levels due to PPI use.16 Our patient had serum gastrin levels within normal limits.

There is no evidence that any PPI increases the incidence of FGPs. In most studies, the most common PPI was omeprazole, which could be because it was one of the earliest PPIs to be marketed and it is commonly prescribed.

However, the use of PPIs for more than 2 years may increase the risk of FGP formation.11,12 Ally and colleagues demonstrated that PPI use of less than 1 year did not increase the development of gastric polyps, while PPI therapy for more than 2 years was an independent risk factor.17 No dose-dependent association has been described in the literature. Our patient reported the use of PPIs for approximately 12 years.

No surveillance is required for FGPs because they are not premalignant lesions.18 Genta and colleagues found no increase in gastric neoplasia in patients with FGPs.19 There was an inverse correlation between the FGPs and gastric neoplasia.19 In our patient, we repeated the endoscopy within 6 months because of worsening GERD symptoms.

In conclusion, this case demonstrates a possible association between long-term PPI use and large FGPs. Because many patients take PPIs for GERD and other conditions, doctors should be aware of this potential adverse effect. The use of PPIs should be limited to patients who need them, and the duration of treatment should be monitored.
A 42-year-old white man was referred to our center by his primary care physician for symptoms of chronic diarrhea associated with cramping, abdominal pain, and flatulence. The patient had chronic gastroesophageal reflux disease (GERD) and had been taking omeprazole 20 mg twice daily for the past 12 years.

A colonoscopy and esophagogastroduodenoscopy (EGD) were performed for symptom workup. The colonoscopy revealed no significant findings. The EGD showed approximately 30 large pedunculated polyps in the gastric body and fundus (Figure 1). The size of the largest polyp was approximately 2 cm. Biopsies of the polyps were obtained with cold forceps. Histologic examination of the specimens showed multiple fragments of fundic gland mucosa with occasional dilated glands. Based on the EGD and histology, the patient was diagnosed with fundic gland polyps (FGPs). The most likely etiology was thought to be the prolonged use of proton pump inhibitor (PPI) therapy. Therefore, omeprazole was discontinued, and ranitidine 150 mg bid was started. A repeat EGD performed 5 months later showed a significant decrease in the size of the polyps and no polyps were pedunculated (Figure 2). Pathology of the biopsy sample confirmed the presence of FGPs with no evidence of malignancy.

Large Fundic Gland Polyps in the Stomach

Download PDF
Gastroenterology & Hepatology
March 2016, Volume 12, Issue 3

Sonia Varghese, MD,1 Vu Le, MD,2 Tauseef Ali, MD2

1Department of Hematology and Oncology, Stephenson Cancer Center, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma; 2Department of Gastroenterology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma


From

http://www.gastroenterologyandhepatology.net/archives/march-2016/large-fundic-gland-polyps-in-the-stomach/
 
Yes, garlic is definitely a trigger for my daughter. No side effects from a PPI for us. My daughter has been on one for years. There are risks with being on them - they prefer using Zantac or Pepcid now, but we tried those and they didn't work for M.

She is also on an NSAID, so it's very important for us to protect her stomach.

Gastritis can also cause stomach pain and can be caused by reflux. For that, we use Carafate. M takes Carafate regularly to prevent gastritis, but it is often given for a short period of time if gastritis is suspected or found on a scope.

Have you tried something like Maalox or Tums for the pain? If it's acid, that should help. We find Maalox works better, so M takes that when she has really bad reflux. It works pretty quickly.
Thank you! We purchased Maalox tonight and he said it helped more than the tums. Said his pain went to a 4-5 from a 6.
 
Both kids have been on PPI's, tums and such.
Along with myself. Green tea..... ya, sounds weird. But it works for us. I have to drink it for a week to work but it's worth it for us.

Grace is no longer on any tummy meds.:dusty:
But was on it for YEARS!


And my forum friend
You give me yet another reason not to exercise.:ack:
I lift my cherry fritter doughnut in appreciation to you! Your :welcome:
 
my little penguin, thanks for the information about polyps. Like Optimistic’s son I was first prescribed PPIs for crohn’s in the duodenum. They worked very well and at that time I didn’t need a stronger medication. I now take dexilant twice a day as well as Entocort since the inflammation popped up in my jejunum and ileum. I will definitely speak with my GI about polyps and PPIs at my next appointment. At one point I had Barrett’s esophagus; the twice a day dexilant healed that so I do need to be careful. I may have to switch to Humira since Entocort varies in its effectiveness and I can’t take 6MP or azathioprine because they give me pancreatitis.
 
Caitlyn has low bone density from being on PPI’s for way to long. She is now on Zantac and carafate. Her last few scopes her esophagus has looked really good.
 
My son has 2 weeks to wait for an ultrasound. I am going to try the Omeprazole for 3-4 days just to see if he gets any relief. Gave up on Tums and the Gaviscon (Maalox) as well as the Zantac. Nothing is working. They told me to stop the med if it isn't helping.
 
Grace's Omeprazole took weeks to work.
I think he'll need more if this episode doesn't pass.

Ironically my son is going thru another bout of abdominal cramps.
He was given a med for anti cramping.
 

Maya142

Moderator
Staff member
Yes, I'd check with your GI on how long it takes to work. I can't remember now, but I do think it was longer than a few days...
 
Can you give him the omeprazole twice a day? I took nexium twice a day for years. You might need the two doses to make a difference.
 
The dose says 1 per day early morning. He weighs about 75lbs. Don't know if that makes a difference.
I had read on the internet that we should notice some improvement within 3-4 days, but it sounds like I should keep researching. It's just that I was told to stop if no improvement- unfortunately no time frame given.
 

Maya142

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When we have tried PPIs, we've always tried them for at least a week or two (usually two), not just a couple of days.

Is there any way H's GI can weigh in? When does he see the GI? Has that been scheduled yet or am I getting confused with H's appt.?

I'm just thinking that the dose may not be right - our pediatrician put M on a PPI but once we finally got in to see M's GI, she doubled the dose immediately. M was on Prevacid, not Prilosec, but took it twice a day.

GIs tend to be more aggressive with these meds. M was immediately put on Prevacid twice a day plus Zantac once a day, so that she'd have something before each meal to prevent reflux.

It worked well for her, though it did take a while to work.
 
I was able to get him in to GI on the same day as H but that will be about 3 weeks.
I don't mind limping along with this until the GI weighs in. We do get imaging in about a week or so.
 

Lady Organic

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I have been prescribed PPI from an ENT for possible GERD and issues in my throat, but I decided not to take it considering the associated risks on stomach mucosa, which have been identified with endoscopy research (polyps, cubblestone mucosa, etc). As a CD patient I believe our mucosa is maybe even more vulnerable to possible side effects of PPI. I chose to adapt and change my lifestyle to minimize possible GERD eventhought that full change is not yet achieved :shifty:
 
I understand that, Lady Organic! It's even tougher maybe to make medication decisions for another person, and more so a young child.
For H's brother we have also: put the head of his bed up on blocks, limited food before bed, cut tomatoes, garlic, and citrus fruits, and totally eliminated dairy. He eats a plant based diet. We tried 3 less potent medications that didn't help.
If the omeprazole doesn't help after a few weeks then I will wonder if acid is the problem. Yesterday was day one and he still had an unreasonable amount of pain.
He can't live like that. He's missing some school, turning down some invites, and then sometimes he's ok.
 

Maya142

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I think he probably needs to be scoped. Poor little guy.

We also worry about the side effects and long term effects of PPIs but the long term effects of GERD and inflammation in the stomach from reflux aren't good either. And like you, we have tried changing diet and all that without much success.

A PPI has made all the difference for my daughter - before she was on one, she had constant stomach pain, would not eat, lost 15 lbs (and she didn't have any extra weight to start with) and was just miserable. When we started Prevacid and got her on the right dose, it really improved her quality of life.
 
Same here!
I'm glad wet did because after scoping we say damage that could have been so much worse if not for ppi's.
Now with that said, mine is controlled with out meds.
I prefer natural but will use meds when needed.
 
Ugh! I'm gonna say it. Could be IBS also. IBS can cause a great deal of pain and until you identify the culprit and get on the right meds it could be miserable. I hate the IBS dx because they know so little about it. Plus plant based diet could still aggravate it. Many plants are culprits for people. Just stinks! I vote fecal cal. ThAt will at least let you know which tree to bark up. Normal then functional (IBS gastroparesis, allergy etc) or High organic. (IBD).

I hope he can last the three weeks.
 
sorry for the double post but might not hurt to try some simple IBS stuff. Our GI had my daughter start on probiotics. Culturelle was the beans he recommended. Double dose for two weeks then down to regular dose. Takes up to a month to be effective but I don't think probiotics will hurt so worth a try.
 

Maya142

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My kiddo has an IBS dx in addition to IBD - in her case, it flares up when she is stressed out. We added probiotics - we also use Culturelle and worked on controlling stress. That really helped her. Her symptoms were diarrhea and abdominal pain and cramping.

Levsin also helped a lot with the cramping.
 
I think he probably needs to be scoped. Poor little guy.

We also worry about the side effects and long term effects of PPIs but the long term effects of GERD and inflammation in the stomach from reflux aren't good either. And like you, we have tried changing diet and all that without much success.

A PPI has made all the difference for my daughter - before she was on one, she had constant stomach pain, would not eat, lost 15 lbs (and she didn't have any extra weight to start with) and was just miserable. When we started Prevacid and got her on the right dose, it really improved her quality of life.
I'm pretty sure the GI will offer a scope. If not, I am prepared to ask. He is also avoiding food. Smoothie for breakfast but then he suffers for awhile. He had a couple crackers at lunch. His lunch box is coming home fill when he goes to school.
He only grew 2.5cm over the past year and half a lb. So, I personally think something has been brewing for awhile.
 
sorry for the double post but might not hurt to try some simple IBS stuff. Our GI had my daughter start on probiotics. Culturelle was the beans he recommended. Double dose for two weeks then down to regular dose. Takes up to a month to be effective but I don't think probiotics will hurt so worth a try.
I don't see the harm in trying a probiotic. Good idea. As for the fcal, I have already asked. We are limited to two a year and only for diagnosed IBD patients as per GI. I am not allowed to pay for one myself, which I would very gladly do. But the U.S. border is only 2.5 hours south and I am thinking about it!
 
Same here!
I'm glad wet did because after scoping we say damage that could have been so much worse if not for ppi's.
Now with that said, mine is controlled with out meds.
I prefer natural but will use meds when needed.
What natural remedies help you? I could try along with meds maybe....
 

Maya142

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With IBS, I think you would usually have diarrhea or constipation.

What are his symptoms? I know he has stomach pain, but anything else? Is the stomach pain after meals or before food or at any specific time? Where is it located?
 
With IBS, I think you would usually have diarrhea or constipation.

What are his symptoms? I know he ha8s stomach pain, but anything else? Is the stomach pain after meals or before food or at any specific time? Where is it located?
He usually wakes up with pain (probably mingled with hunger) and immediately after he eats it gets worse up to a 6 on the pain scale. Sometimes he feels like crying. After 30-60minutes sometimes with a heat pack it starts to become more mild pain. Then when he gets hungry again the cycle repeats.
At first some weeks back he would indicate the pain was right under his rib cage. Lately he indicates it is right around the navel from left to right.
When we saw our GP last week,it was obviously tender on palpitation.
No bowel changes. So, a proper #4 Bristol once a day without much variation.
He said he sometimes had indigestion backing up, but not lately. Although his dental check this morning was terrible, so I wonder about acid by his teeth.
That's about it.
 
Interesting.
I always thought GERD for Grace because she said tummy but when the doc asked where, it was below the belly button.
Of course her main area was the TI section that showed problems.

I use green tea for relief on my acid reflux. Peach flavor is my favorite. It works for me. It takes about a week to work.
However, this didn't work on Grace. Lol, now we know why.
 

Maya142

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Staff member
What about nausea? Any nausea? Does he get full quickly when eating?

If it's pain after eating, I wonder if it's a motility issue.
 
Acid can damage teeth terribly. Poor guy, he is really suffering. Since Gaviscon didn’t help him I’m questioning GERD. Although if I weren’t taking my PPI I don’t know how much it would help me, either. I’m also wondering about nutritional deficiencies weakening his tooth enamel. He really does need to be scoped, doesn’t he. Has he had any blood work to test his vitamin/mineral levels? Any chance he could have celiac disease? When I was diagnosed with it my one symptom was severe pain; I never had diarrhea. With H’s headaches and her brother’s pain you’ve got your hands full. I really hope the omeprazole works.
 

my little penguin

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Is he still on dairy/cows milk ?
Does he do better with a low fat low fiber low cal meal (snack )?
Ds has gastroparesis which we thought was ibs at the time since his stomach hurt /nausea etc
Wouldn't eat much

Non ibd kiddo we were worried about ibd
Scopes looked clean but had severe lactose intolerance which no one even considered since the kid was drinking large amounts of milk a day
We tried gerd meds for him prior to scope
And no luck

Ds takes vsl#3 double strength prescription probiotics to help with his GI /rectal symptoms
They do help him

Hard to know what is going on
 
My Little Penguin he has been completely dairy free since July. He had been having eczema and also stool accidents last year for months. Taking out dairy has solved those issues.
Our meals are typically low fat and high fiber. He will sometimes eat a snack but it depends on pain.
Jabee I think it does need a scope. Celiac is always possible, I know they will check.
He will get full nutritional labs at the GI. His basic labs - hemoglobin and such were fine.
 

Maya142

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High fiber could be worsening the pain pain, if it is Gastroparesis. The symptoms are usually pain after eating, nausea, early satiety (feeling full after a few bites for example) and for some kids, vomiting.

Some kids lose weight, others do not. The symptoms can REALLY vary. You would need a gastric emptying scan to rule it out - scopes won't really tell you anything if it's Gastroparesis (though I do think he needs them, since there is Crohn's in the family).

Worth asking your GI about.

Sending hugs - hope the GI has some ideas for you.
 
Who knows Pilgrim. The Rome criteria says recurrent abdominal pain or discomfort at least 3 days/month in the last 3 months associated with two or more of the following: Improvement with defecation. Onset associated with a change in frequency of stool. Onset associated with a change in form (appearance) of stool.

O never had pain which was the primary diagnosing factor. So really, who knows. I guess if you can have IBD without change in bowel habits then it is possible to have IBS without a change also.

It could be so many things. IBS is a dx of exclusion so I think you are smart to investigate other causes. Celiac, allergy and IBD would be top suspects. I just don't get them not covering a fecal cal test. It could save them from costly scopes and save him from having to go through them. Payors can be so short sighted sometimes.

If the GI wants a scope no matter what then there is really no need for the fecal cal as the scopes will really tell the story.

Was he getting some imaging? When does that happen? I guess there is a chance this could be constipation???? I have heard of kids being pretty miserable with some impaction and still having what appeared to be normal bowel habits. I am going to cross my fingers for this one.

Going to check on your girl now.
 
Crohnsinct,
If there's any word that seems more the devil, it's "constipation".
Ultrasound in a week.
It's good to see you back! Don't forget to update somewhere about your girls, plus new GI and all!
ETA - found the update
 

Catherine

Moderator
Do you have any previous blood test results for hemoglobin? If so has been any drop hemoglobin over time?
 
We had H's brother's visit to GI. Scope in the next 3 months (backlog). He is taking Miralax just in case it provides relief from the pain. So far, not.
They ran several blood tests and a stool test. They only can run fcal on confirmed IBD, so we won't be getting that test.
He mentioned h pylori and celiac as possibilities as well as Crohn's. The scope should get us the answers.
If anything interesting comes from test results, I will update.
 

my little penguin

Moderator
Staff member
Hugs on having to wait
Btdt for scope on kiddo two and it's so hard
Even without a wait (they got him in Igor the scope in less than a week )
Never do back to back scopes
 

Maya142

Moderator
Staff member
Wow!! That is quite a wait!! Your poor little guy. Is there any chance there's a cancellation list to get him in sooner?
 
We're used to waiting, lol! Expectations are low. When H had her diagnosing scopes, we had to wait 12 weeks on pathology to get results. But, I digress...
I think they'll bump him up if he starts bleeding. Also maybe something will turn up in the labs?
But poor kid, only made it through half a day of school today (he's missed about 8 days so far), and I am thinking of home schooling until we get through this. So much stress every morning to get him going due to pain.
 
I never wanted to homeschool. But now I love it.
Of course, she was taught up thru 2nd grade.
So the foundation was laid. It makes it a lot easier for me.
It does ease my mind to know that I can work with Grace's health issues and tailor her classes to her.
Plus, on a side note, not that out should matter.......
I don't have to worry about future blizzard. Lol
 
We love homeschool it has been a blessing especially for kids with health issues. Hugs in having to wait. I know it is not easy. Hoping they get some cancellations and can get him in sooner.
 
Gosh 12 weeks is a long time to wait. What grade is he in? There are a lot of people who homeschool their children; I think it depends on both the child and the age. I’m assuming his school knows about his medical issues? Could his teachers be helpful about sending work home and modifying his assignments? So sorry he’s no better.
 
Gosh 12 weeks is a long time to wait. What grade is he in? There are a lot of people who homeschool their children; I think it depends on both the child and the age. I’m assuming his school knows about his medical issues? Could his teachers be helpful about sending work home and modifying his assignments? So sorry he’s no better.
We don't have a diagnosis for him so there's nothing I can tell them but his teacher is aware there's an issue. Luckily he's a good student and hasn't fallen behind.
He's 9 years old.
 
So in case there is a constipation issue my son was put on one cap of Miralax per day. First few days were normal 4 Bristol, and now liquid or very soft and he's had two accidents related to urgency. One of the accidents after I dropped it down to a half cap.
I guess I will call GI and see if we can drop it. This would be a nightmare for him at school. Pain levels are the same so I think it doesn't help anyway.
 

my little penguin

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Staff member
Just remember any change to miralax is actually whatever dose it was three days before
It takes three days to start working
So if he was only had one day of 1/2 cap
Then that was actually the dose from two days before

That said maybe GI will let you stop and then start at 1/4 cap
You can use a kitchen gram scale
Put the cap on
Hit Tare so it reads zero
Then slowly start at 3-4 grams etc
Or what the GI recommends
 
Second what mlp said about the 3 day rule on miralax.
Grace was up to 3 adult doses a day.
Ya, that was fun trying to get a young Grace to drink. Lol
Also push water big time. Since miralax pulls water from the body it can actually cause constipation and dehydration.
 
Our GI does not order Miralax unless an x-ray shows constipation (or it is obvious). Just be cautious if you're not sure that constipation is the issue. I used to think common medications like Miralax and Ibuprofen were relatively harmless. Then I watched A have a scary reaction to a very common antibiotic and my opinion changed. Hope your boy gets some relief.
 
We are still waiting on scope date. All of his Labs, 11 vials worth, came back normal. His pain is steady on every day. What is this?
Could it even be Crohn's with all normal labs?
This is turning our lives upside down. He is not coping well.
I am calling GI tomorrow to beg for as quicker scope.
 
Please forgive me for not remembering. Has he been tested for celiac disease? Has he been evaluated for abdominal migraines? In addition to the 50,000 other things you are doing, it might be worth checking that out.

https://americanmigrainefoundation.org/understanding-migraine/abdominal-migraine/

https://www.ncbi.nlm.nih.gov/pubmed/11817981

https://www.ncbi.nlm.nih.gov/pubmed/9890466

It must seem like I am foisting migraines upon you! I don’t mean to! It’s just one of the things that pops into my mind when thinking about children and abdominal pain. I grew up with headaches, my sister with stomach aches; there is a strong family history of migraines on my Mother’s side.

This must be so difficult for you; sorry I can’t be of more help.
 

Maya142

Moderator
Staff member
Normal labs here - scopes showed ulcers in the colon and very red and friable TI. The only thing her labs showed was anemia.

M's only symptoms at the time were abdominal pain and constipation. I was SURE it was IBS and we were ruling out IBD.

I really hope they can get him in for scopes faster. Can they admit him through the ER for pain? Once you're inpatient, scopes can be done the next day (at least in the US, no idea about Canada).
 
Unfortunately the people who do pediatrics are 4 hours away. I don't know if I would trust anyone here to do it. I think ER trip might get him a CT scan in our location. Would that help? Or just a bunch of radiation exposure for nada?
H was anemic with elevated esr and low albumin when she was initially scoped but things had been terrible for a long time by that point.
Farmwife and My Little Penguin, did your kids have pain then?
 
Jabee we haven't looked at abdominal migraines - I will read about that. They ran the celiac panel on him though. It was negative.
 

Maya142

Moderator
Staff member
A CT scan could show inflammation, if that is the issue.

Would you be able to drive to a pediatric hospital? I know it's far, but would it be more likely that they'd do testing or admit him there? I'm just thinking that an adult hospital will not really know what to do with an 9 year old in pain. A pediatric hospital is more likely to admit to find out the cause - at least, that's the case here.

In the juvenile arthritis world, since there are so few pediatric rheumatologists in the US, driving 4+ hours one way is common. It's tough, but that's the way it is. We were lucky that our pediatric rheumatologist was only 2 hours away.
 

Maya142

Moderator
Staff member
A CT scan could show inflammation, if that is the issue.

Would you be able to drive to a pediatric hospital? I know it's far, but would it be more likely that they'd do testing or admit him there? I'm just thinking that an adult hospital will not really know what to do with an 9 year old in pain. A pediatric hospital is more likely to admit to find out the cause - at least, that's the case here.

In the juvenile arthritis world, since there are so few pediatric rheumatologists in the US, driving 4+ hours one way is common. It's tough, but that's the way it is. We were lucky that our pediatric rheumatologist was only 2 hours away.
 

my little penguin

Moderator
Staff member
It would need to be a ct entography not a regular ct
And adult hospital have much higher radiation settings on their machines than pediatric hospital
Pediatric hospitals go with the lowest possible “dose”


As far as my kiddo prior to dx
Abdominal pain
Rectal prolapse
And no weight gain
Which turned into slow weight loss
And 8 months later rectal bleeding so he was scoped

If the pediatrician is 4 hours away how do they handle kid stuff

I know a parent here drove to sick children’s ER
Then was admitted tested /scoped quickly
 
I am just going to call GI and honestly ask if we could do that - drive to ER and get a scope. Maybe he'd even tell me when he is on duty.
 
Have a there is no "symptom relief between episodes" which I think would rule out abdominal migraines. There aren't even episodes. It's been pretty much relentless abdominal pain. Usually in the moderate pain category. Every few weeks he might have a couple of mild pain days but those are coming less and less.
 
Could it even be Crohn's with all normal labs?
This is turning our lives upside down. He is not coping well.
I am calling GI tomorrow to beg for as quicker scope.
O.K. I know you know the answer to that question and you are just tired and desperate to get help for your son and maybe a little desperate for it not to be IBD. Not that I am saying it is that. BTDT. But in the interest of a complete response.....

T had normal labs and normal growth and everything. Her only symptom was abdo pain. FCP was the kicker for us. Is there any way you could push the GI to get that test done right away. I get having to wait for scopes, room scheduling, staff, time etc. But an FCP is no skin off anyone's nose.

Celiac testing can also come up negative but Celiac could be found on endoscopy. It just happened to be girlfriend's daughter. But don't pull gluten until after an endoscopy because then results won't be accurate.

I hate to even suggest this because you know how I feel about it but it could also be IBS (I think I just threw up a little in my mouth). Have you looked at and tried the FODMAP diet? It doesn't treat IBD whatsoever so you could try it and still not screw up scopes, FCP etc. It is a hail Mary pass at this point but I remember being in your position and desperate to try anything.
 

my little penguin

Moderator
Staff member
I wouldn’t change diet fodmaps or others wise
Since you may be fixing something other than ibd
My oldest was scoped horrid belly pain

Scope found severe lactose intolerance even though kiddo drank milk by the gallon

Hope the GI helps
But wouldn’t expect them to say go to ER to be scoped

They probably wouldn’t be allowed to say that
Unless they felt he actually needed the ER that minute
Vs you as a parent who is concerned for your child taking them to the ER ;)
 
Jabee we haven't looked at abdominal migraines - I will read about that. They ran the celiac panel on him though. It was negative.
I am on a Celiac forum also, it is very common to have negative panels and still have Celiac or gluten intolerance.
 
A was sick since birth - FTT, bloody stools and diarrhea, erythema nodosum...lots of symptoms. Labs were always mostly normal which delayed a diagnosis. If something was off, even way off, they'd consider it a fluke. Sure enough, tested again a few months later and it'd be normal again. Very frustrating! I think that some kids are very sensitive to what's going on in their bodies and they detect a problem before science can. Just seems to be that way in our experience. If the scope doesn't give you answers (and it only sorta did for us) wait a short time then continue your search for answers. Unfortunately your search could last years. We finally settled on a generic diagnosis.
 

Catherine

Moderator
Do you access to the blood results? Do have any previous lab results?

If so compare the results and post any results where there has been a change. Look at hemoglobin levels, ferritin, and any other iron numbers you can find. Just compare the results.

You are looking for a trend either way.
 
Do you access to the blood results? Do have any previous lab results?

If so compare the results and post any results where there has been a change. Look at hemoglobin levels, ferritin, and any other iron numbers you can find. Just compare the results.

You are looking for a trend either way.
These would be his first full panel. Plus I don't have access.
 
O.K. I know you know the answer to that question
To be honest, I didn't know the answer. I do know that now, down the road of meds, my H can have fine labs and be riddled with disease. But I was not sure that any of our kids had good labs at diagnosis. It's surely been said but we have years of stories, worries, cups and saucers, bottles of wine and bars of chocolate on this forum. So thank you all for saying it in black and white on this thread so now I can accept it as a real possibility. It will give me fuel as I argue the necessity for quicker care.
 
He has scopes after Christmas! I am bringing chocolate for his secretary who was a great help. He has to start prep Christmas day but I don't care!
 
Yes, a big box of chocolate is in order.

Now remember that Grace's first scoped looked clear visually but the biopsies showed a different world.
 

my little penguin

Moderator
Staff member
Great news
Same here
Ds looked great visually
GI even commented about things to do for ibs etcin the consult room after that first scope

GI of course changed his tune after the biopsy came back
After that any scope done GI says let’s wait for biopsy first;)
 
Good for you! O.K. now we don't have to force the FCP issue, although it would be nice for a baseline but I will stop being greedy.
 

CarolinAlaska

Holding It Together
My daughter had normal labs for years, literally. They finally took her serious when she was 12 without a bit of puberty, severely underweight and in constant pain. Before that it was IBS, IBS, IBS. The only lab that ever confirmed any abnormality was her fecal calprotectin. Other labs would be off a little here and there, but not conclusive. Even original scopes and biopsies were inconclusive. Pill cam was diagnostic originally. I hope they can find answers for your son. I'm sorry he's suffering.
 
Great news about getting a date for scopes!
My older daughter is also one of those with normal Labs all the time. Fecal calprotectin is the only test that works for her.
 
Scopes done. He has small ulcers in his colon, not too many, and some changes in the TI.
Biopsies will be at least a few weeks for results.
Dr. Is planning to schedule an MRE for him.
He said if it's Crohn's, then we caught it early.
I asked him if what he saw would cause pain for months and he reminded me that you can get pain with ibs too and nothing on scopes. Really no correlation.
His stomach looked fine. So at least we know there was no gastritis, etc...
Anyone get a mild Crohn's at diagnosis? What happens with meds? H was more severe.
 

my little penguin

Moderator
Staff member
Ds had a visually normal looking scope
Biopsy results showed acute and chronic inflammatory changes plus granulomas so Crohns dx
GI tried pentasa at first since he wasn’t convinced completely of Crohns
MRE showed thickening in the TI
Second opinion said yep Crohns
So Ds was switched to een /6-mp
Which he took for 8 months
Added steroids twice
Second scope showed inflammation
So switched to mtx and steriods
Too many extra intestinal manifestation when steriods were lowered.
So switched to remicade 1 year after dx


Kids even mild kids tend to need an immunosuppressants minimum
They now started with mtx

Your Dd was only 3 so even severe Crohns at three starts woth immunosupressabts typically
Then moves up to biologics

Since your in Canada who knows how they will start

Did GI try to explain away the ulcers as ibs ???
That’s concerning

Especially since he had belly pain and they found evidence of ulcers
Wow 😮

Big hugs to you
 
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