• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

3 years looking for answers

Location
Ireland
Hello everyone, i'm new to this forum, crohns & UC. Thanks so much for allowing me to join. I'm a mother to twins boys 4.5 years old. One of them more so than the other has had problems from about 14mths old with weight loss and what i was told was repeated viral infections with high temps.At 2.5 years he was diagnosed with GERD as a result of an ENT scope and prescribed omperazole. Its worked for about 6 months. He gained weight and was happier in himself. Within an hour of the first dose his pot belly disappeared and his reluctance to eat disappeared. To make a long story short about a year ago I noticed he was passing sediment in his urine Up to a quarter of the urine sample would be sediment. The urine went to the lab many times but always clear. He regularly had scrotal and or abdo pain. He was admitted to hospital for tests - initally a barium swallow. No reflux detected. Since just before his 2nd birthday he was drooling profusely. I mean profusely. A speech and language therapist examined him to check his swallow. She found it to be A1 but noted that after eating his behaviour was suggestive of pain so an ODG was ordered - nothing was found. After the ODG I spoke to the Gastro. I gave him every obscure symptom my child had and he suggested a calprotectin test. The results came back 'slightly above normal' I was told that that could indicate infalmmation anywhere in the body. It was not pursued. That was Oct 2015. By Dec 2015 both boys were passing large amounts of sediment in their urine. In Dec 2015 both were diagnosed with Hypercalciuria(passing large amounts of calcium in the urine). I was told that was it; that there was nothing more wrong and more or less told to put up and shut up. My family doctor started sending their urine to the lab everytime I brought either of the boys to him. Abdo pain was the predominant reason for those visits. As a result of those visits we now have several urinalysis with microalbuminuria. We also have a record of weight loss in both boys. I recently read an article where it described a link between IBD and hypercalciuria, so a calprotectin test was ordered for the boy who didnt have it done before. The result was 196. Its just in recent days that I made the link between microalbuminuria and crohns - I believe the albumin appears in the urine during a flare up? has anyone come across this? My boys also crave salt. I had assumed this was a kidney issue but I have also read recently its a crohns issue too? The stool sample is now at the lab for the boy who had the slight positive test last year. I read that crohns can in rare cases cause the drool i see in both my boys - one way worse than the other as the disease can affect anywhere from mouth to rectum - can anyone confirm? I was reading an article before I wrote this and saw mention of ketones. They have been seen occassionally in their urine along with bilirubin, but have been ignored. My boys have no energy and I have regularly noticed increased respiratory rate in one of them especially after eating. One of the boys recently had blood tests for suspected purpura (red bruising) which I have read links to crohns Sorry to be so long winded but it’s a story that has taken 3 years to get to here and here is still nowhere unless their paed accepts everything so can anyone help me piece together IBD, hypercalciuria, microalbuminuria, ketonuria, bilirubinuria and increased respiratory rate sometimes with low blood oxygen and finally, purpura. Thank you in advance.
 

my little penguin

Moderator
Staff member
Welcome
We have a parents group here where you will get more responses from moms who have btdt many times over
http://www.crohnsforum.com/forumdisplay.php?f=49

Have either of them had a colonoscopy ?
Mre ?

Going to tag
Farmwife
Pilgrim
Crohnsinct
Maya142
Clash
Jmrogers
Tesscorm
Mehita

Crohns is extremely difficult to dx
And very rare in kids under 10
Extremely rare in kids under 5
Review very early onset crohns
Most kids under 5 have immunodeficiency

Also tagging Dancemom since her kiddo has different issues than crohns

Have you tried nutritional supplements to see if your kiddos can gain weight?
Tracked calories in a food diary for a week of two and give that to the Ped
Some kids don't tolerate whole proteins and need a broken down formula
Semi elemental or elemental formula

Good luck and lots of hugs
 

Maya142

Moderator
Staff member
Hi and welcome!

Have both your boys been diagnosed with some sort of IBD? I'm a bit confused. Have they had scopes or MRE's?

I also recommend a nutritional supplement if they are still losing weight. Pediasure and Kids Boost are options and are the ones that taste the best. Pediasure Peptide or Peptamen Jr are more broken down formulas (semi-elemental). If your kiddos need elemental formulas (even easier to digest), then Neocate and Elecare are options. Those do not taste good, but little kids sometimes get used to the taste and are able to drink them.

Check out the Parents' forum - you might find more info there.
 
Location
Ireland
Thank you everyone for replying. I will reply here and post on the parents and kids site also. No is the quick answer to almost everything. No colonoscopy. No MRE. No dietary advise. One of them has weight fluctuations more than the other. No supplemental nutrition has been given because nobody seems to accept there is a problem with his weight. For example on 6 July of last year on admission to hospital for tests he weight 13.6kg. on 1st sept 2015 he weighted 13.3kg on admission to the same hospital for OGD and on 8 Oct 2015 in the same hospital he weighted 13kg. That was the day he got the slight positive for calprotectin. I have records of his weight at different doctors offices and his weight has been as low as the 6th centile and as high as the 32nd centile. Taking into account variations in scales there is still a problem. The confirmed diagnosis of hypercalciuria has strict dietary recommendations reduce salt, sugar and purines. I found that out thru google. I received no dietary advise I was just told get them to drink minimum 1.5litres per day. They were prescribed potassium citrate but I was told to stop it because of the abdo pain. I pointed out that the abdo pain predated the potassium citrate but that was ignored. Both had an abdo U/S to check kidneys and baldder and that that was the only investigation in that area. The calprotectin test was ordered by the family doctor. We are due to see the paed at the hospital next month.
 
Last edited:
Magnesium and vitamin K and D help the body use calcium. I find that L-Glutmine has Avery pronounced healing effect on the intestines. Maybe something to look into.

Most everyone is deficient in magnesium nowadays because of soul exhaustion.

Dan
 

my little penguin

Moderator
Staff member
Magnesium can cause diarrhea especially in little kids so please speak to. Doctor before giving any supplements since kiddie doses tend to be much diffferent than adult doses .
 
Location
Ireland
Magnesium and vitamin K and D help the body use calcium. I find that L-Glutmine has Avery pronounced healing effect on the intestines. Maybe something to look into.

Most everyone is deficient in magnesium nowadays because of soul exhaustion.

Dan[/QUOTE

Thank you - neither has been checked :ysmile:
 
Top