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Mehita

Mehita

Joined
Nov 12, 2011
Messages
2,402
You have one child with IBD. What would cause you to consider taking in a sibling for IBD testing?

DS2 has been complaining of a lot of stomach aches and mushy poop the last several weeks. I don't think it's serious, but I also don't want to make the same mistake twice.

That horrible stomach bug is in our schools big time and I kind of think he has a touch of it, but his happy bugs (probiotics) have been putting up a good fight and keeping it at bay. Am I grasping at straws, or might that be possible?

We do test DS2 every two to three years for Celiac since DS1 has it, but I've kind of ruled that out because our dinners are always gluten free and he still gets stomach aches.

Generally the stomach aches are when he wakes up (hungry??) and around dinner time. Pooping usually helps and he goes at least once a day, normal looking. He barely eats anything at any meal. Fills up fast. Maybe he's just looking for attention?? His asthma and eczema have increased the last several weeks as well.

All that being said, knowing what you know re: your IBDer, when do you become concerned?
 
Don't ask me. This is the big question around our house.

If prior to dx anyone said to me "one of your kids will have IBD which do you think it is?" I would have picked my youngest in a heartbeat. Chronic stomach aches, migraines, miscellaneous vomiting, constipation. Never enough (except the vomiting because of the school rule) to keep her home. Not enough to peak ped's interest and luckily we all have ped GI's that we see pretty frequently so you can just drop it into conversation at the next appointment. Even with everything that my youngest has still not enough to peak the GI's interest. He says they have a 30% increased risk of getting IBD but that translates to an overall 5% risk of getting it. So I sit and watch and wait. Waiting for things to pick up, be more constant etc.

I had a great ped who told me anytime I wanted she would run a fecal calprotectin test on her. Non invasive and simple. She stopped practicing. We joined a new group but waiting a bit before I show them my full on crazy.

Can you ask your ped for a FC test?
 
We had our other child tested .
Basically called our Gi for the initial appt. to review what may be causing the issues.
Given the family history and the actual symtpoms the Gi thought blood work and a scope were needed.
No Ibd found just reflux issues
But now at least my other kiddo is being watched by the gi as a precaution.
 
Recurring stomach pain and diarrhea in younger one, tested after a couple months because of family issue, no crohns just lactose intolerant, cut out diary and all fine
 
We just went through this with my youngest (she's 6). She was having daily diarrhea and stomach aches and she's never had a great appetite. I didn't want to think that anything serious could be wrong with her and I basically dismissed all of her concerns. One day she finally admitted to me that she was jealous of all the attention that A gets for being sick and she wants to be just like her. I was both crushed and relieved. Once we had a real heart to heart conversation and started scheduling special Mommy & M time the diarrhea and stomach aches stopped and her appetite has even picked up. I think sometimes the siblings are understandably needy and seeking our attention and other times they are hyperfocused on their bowel habits.

That being said, I'm watching M like a hawk for any signs of vasculitis or immune deficiencies. She does have asthma and chronic sinusitis and if it continues I'll probably ask the Pedi to run some immune labs at some point in the future. I think starting with basic testing (labs, stool tests, x-rays, etc.) to look for major problems is a good starting point and then work from there.
 
Matt was diagnosed 4.5 years after Sarah and during those years I wondered countless times about Matt. Not because he was symptomatic but simply because he was Sarah’s brother. The only other relative that I am aware of that has Crohn’s in the family is my husband’s first cousin and she has two brothers, neither of which has IBD. As time marched on after Sarah’s diagnosis I had done a pretty good job of convincing myself that Sarah was going to be the only one in our family too.

Matt had never had any gut issues his entire life and the amount of times he had vomited throughout his childhood I could count on one hand. He was diagnosed on the 1st of December 2010, he turned 17 in the July of that year, and this is the timeline:

January 2010 - He had gone down to Sydney with Sarah and was staying with my parents. Whilst there my Mum mentioned that one night he was poorly, he had been up for most of the night vomiting but it had passed pretty quickly and he was fine by the morning. I did think at the time how unusual it was because I simply could not remember the last he had vomited. It literally would have been years.

May/Jume 2010 - He complained to me that he kept getting mouth ulcers. Not huge amounts, one or two at a time but it was a consistent pattern, they were always present. I did some research and commenced him on B Complex. The ulcers resolved and never came back. I didn’t think anything of it at the time as it is not uncommon for some people to be plagued my mouth ulcers and so I thought Matt was one of those people.

October 2010 - My husband and I commented on how tired (dark circles under Matt’s eyes) and pale he was looking. No other symptoms. We found our reasons for it…the end of the soccer season, a season that saw him playing on many Saturdays three full games two of which were men’s games. The winding up of the academic year, Matt was in Year 11 but was also in the second year of a part time science degree. So he was juggling high school and university and both had exams fast approaching.

November 2010 - Around the 8th (a Sunday night) he had a night up vomiting, by the morning it had stopped. for the next few days he was off his food and then the following Saturday he had another night of vomiting which was finished by the Sunday morning. No pain, no diarrhoea, no nothing else.
There was a locum GP at our surgery at the time and I happened across at my work on the Monday. I spoke with him about Matt and asked that in view of Sarah’s history could he please run some baseline bloods including inflammatory markers. I said to him at the time that I was probably over reacting and to be honest I wasn’t expecting anything untoward and really only asked for my own peace of mind. I guess something must have been niggling at me, fear no doubt!
As it was his CRP was raised, IIRC it was around the 40/50’s. The GP ordered more bloods for the following week, including CRP again and IgA. At this point his regular GP was back and when he examined him he could palpate a mass in his RLQ. He told me there and then he thought it was Crohn’s. The CRP came back significantly raised on the previous weeks result at 151. IgA was normal. That was when imaging commenced, it confirmed thickening of the terminal ileum, he had scopes a few days later and was diagnosed.

If there is one thing that I can recommend that is simple and easy to do, look at photos. It wasn’t until after both of mine were diagnosed that I was going through school photos one day, I could see the change in the photos, the change I couldn’t see in front of my eyes everyday simply because I was seeing it everyday. This may not be the case for everyone but again, it is a simple thing to do.

Dusty. xxx
 
I am also having this dilemma - my daughter is having some joint pain and heartburn/tummy pains on and off over the last few months. I keep having the thought in my head that this is the age my son started with his tummy issues, a year before diagnosis.
I went to the GP today and asked for a calprotectin. At least it's a painless test and should show any inflammation present.
I find it hard not to panic when she gets what is probably a normal tummy bug and growing pains :yrolleyes:
 
Yes, we're there with my son again.
I'm going to ask for a FC test also.
I don't care if the doc thinks I'm paranoid. I've been there before and I've learned my lesson. I want answers that make sense and explain things.


Hugs
 
Yeah, coincidently I have my two oldest boys getting bloods today. Both are teens and don't share much about 'personal' stuff, so I thought I'd get a baseline. :ghug:
 
It's always in the back of my mind as well. Stephen was the same as dusty's Matt - never sick in his life... A bit of diarrhea in dec 2010, fatigue/paleness in February 2011, stomach flu type incl fever started off and on in March and then continued off and on, thru much testing, frequency of being sick increasing and diagnosed in May. Until then, he was rarely sick.

My daughter, on the other hand, throughout her life has always had 'something' :eek: - sore odd joint pain, sinus issues, colds, tonsils removed at four, maybe sleep apnea, headaches, sporadic looser stools, hives, rashes, itchiness... Over the years, I think we've seen every type of specialist there is but, most of the time, the issue eventually goes away without any treatment. :ybatty: While I was always concerned, since S's dx, I worry a hundred times more - do they all tie together?, am I making excuses like sports injuries?, etc.

It's tough to find a balance btwn paranoia and appropriate concern!
 
I worry all the time about this! We are a stomach achey family. Someone is always having a stomach issue. Anyway one of the pediatricians in our practice was willing to do a fecal calproteectin on two of my kids for me. They both came back negative. My youngest however continues to have unexplained blood in her stools on and off. It is always a very small amount and bright red. It occurs whether it is soft or hard. The doctor at this point wants to monitor although she was willing to scope if we wanted her to. I said no not at this time. She has been better lately have only seen blood on a rare occasion and she always checks. she is funny she is only five but she knows to check her poo. If she sees anything suspicious she tells me to bring the flashlight. I really pray everyday that no one else gets this. I don't think I can handle anymore right now!
 
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My brother and I were doomed to have this awful disease since the start. It runs on both sides of our biological families.
We both had "Crohn's scares". Him first, then I did. Our parents believed him, not me. I have it, he doesn't. (although, it was confirmed that he does have it recently, it just hasn't showed its face yet)
Point is, don't compare your kids symptoms. we all know Crohn's presents itself differently in everyone. Don't doubt one or think they just want attention. I suffered for over a year because I"just wanted attention".
 
My youngest is the one with Crohn's, my oldest was tested but not the normal go to the doctor way. Because of seeing her sister as sick as she has been & is, she joined the GEM project http://www.gemproject.ca/ which seeks people that have not been diagnosed, but has a sibling, child or parent with Crohn's. The idea is to understand more about why people get the disease in the same environments. (see the website that can be much more eloquent in description than me.) Her initial tests had to check if she had it. If she didn't do this, I doubt we would have tested her.

Knowing if she had it or not couldn't change anything and would just cause her stress wondering when the disease became more active. Don't know if it is the right attitude, but it works for us.
 
Supportivemom: interesting what you say about the GEM study as my two non IBD kids are in it and we submitted all the samples etc. I made a comment to the research coordinator about being happy that if either of them had inflammation then we would at least get to find out and she said, "no...we don't do any testing on the samples. They are just frozen and preserved and we pull them out if they are ever diagnosed down the line".
 
Before we started in the GEM Project the research coordinator asked us to have her get tested from her blood work. Though it was not a full definitive way of testing ( not a scope or pathology testing) it was enough for us. If the research coordinator didn't ask us to get it done i wouldn't have probably ever done it.
 
My oldest was diagnosed the summer of 2010. After that I talked to my other two children about Crohns and symptoms. I explained to them that if they started having various symptoms to let me know and we would pursue it further. This kept me from asking or worrying and gave them the privacy they need as well as placing the responsibility on them. Two months ago, they came and said they were having some of the symptoms we had talked about . Needless to say, I now have two kids with Crohns and currently waiting for the full results of the third. I could have spent a lot of time worrying but felt like I couldn't prevent the disease from occurring, we could only hopefully catch it before it presented itself as severe as it did with their older sister.
I wish I would have know.about the GEM project.
 
My youngest daughter does not have any GI symptoms but as borderline anemia. Currently having blood tests done every six months. She also has low vitamin D being treated with supplements.

My middle daughter has yearly blood tests for a kidney conditions and at 17 is a blood donor. So any problems with haemoglobin or iron will show up with their testing.
 
ProudMom said:
My oldest was diagnosed the summer of 2010. After that I talked to my other two children about Crohns and symptoms. I explained to them that if they started having various symptoms to let me know and we would pursue it further. This kept me from asking or worrying and gave them the privacy they need as well as placing the responsibility on them. Two months ago, they came and said they were having some of the symptoms we had talked about . Needless to say, I now have two kids with Crohns and currently waiting for the full results of the third. I could have spent a lot of time worrying but felt like I couldn't prevent the disease from occurring, we could only hopefully catch it before it presented itself as severe as it did with their older sister.
I wish I would have know.about the GEM project.
Click to expand...

Hi and welcome proudmom, I'm sorry to hear about your dd. Please feel free to introduce yourself and your dear daughter. We're always her to help
 
At DS's last appt I asked about the little brother and his GI said he'd run whatever tests I'd like, but in his opinion he thinks we should take a wait and see approach. He said to start a log and see if any patterns come up... gluten, food intolerances, etc. because those would be the easy and simple answers, but if things continue into the summer, then he'd like to see him.

I guess that's a plan?
 
It sounds like a plan to me Mehita. :ghug:

I think tracking symptoms will not only perhaps give you clues as to whether there is an issue but also gives the GI something to work off as well.

You have seen the diary inclusions in the wiki?…

Dusty. xxx
 
Yes, thanks, Dusty. I have something very similar printed out and in the calendar that I track things in. DS is blue ink and DS2 is red. Hoping for very little red!
 
Mehita,
He wouldn't be willing to do a fecal calprotectin? If it is normal that at least could put your mind at ease. It is such a simple test to do. I just think that whole wait and see approach if there is an issue they are allowing it time to get worse vs starting treatment if he is positive and getting things under control and as we all know it seems like the sooner inflammation is brought under control the better.
 
He said he would do fecal cal, but it's out if pocket right now and pretty expensive. It might sound irrational, but I'd rather use our out of pocket to pay Remicade, which we know works, than a fecal cal that may or may not be worth it.

Now that we're logging and paying closer attention, we're starting to think the culprit is just gas and indigestion from eating too fast and not eating frequently enough. The boy is go, go, go and forgets to do basic life things like eat and pee.

I'm not sure what's changed lately, but his asthma and eczema have cleared up along with a good chunk of the stomach aches. Maybe he had a touch of a virus or something? No clue.
 

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