Today my heart breaks.

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NMMom

NMMom

Joined
Aug 1, 2012
Messages
102
Hi everyone. Today is the first time I've posted. Over the past few weeks google searches have led me here and I've been comforted my knowing my family isn't alone.

I have a five year old daughter and a three year old son. Just about a year ago my daughter started waking up in the middle of the night about once a week and throwing up bile. She'd go back to sleep and be fine the next day. This went one until October. Doctors couldn't find anything wrong other than slightly elevated ALT levels so it was written off as a virus. They did, however, also do an ultrasound and noticed some inflammation in her intestines but not enough to look into it any further. Plus, at this time she was having normal stools.

Fast forward to the end of January and Ellie, my daughter, is treated for strep. About a week after finishing the antibiotics she started having really bad tummy aches and very loose/watery stools with blood. After several weeks and multiple tests she was DXed with C. Diff. and is very anemic. She was treated with Flagyl and Vanc. and had multiple (I think 5 or 6) relapses. She also started, and continued, to take iron and probiotics.

As a mother, though, I've just known something isn't right. Last week during an especially bad bout of bloody stools and tummy aches the Ped. GI ordered a Fecal Calprotectin test. Her numbers came back at 944. The interpretive information says under 50 is normal, 51-120 is borderline and anything over 121 is abnormal and suggestive of IBD. I put a call in to her doctor to let him know the results and am now sitting here waiting, and hoping, to hear back from him today.

My heart hurts, I want to cry my eyes out. Like all of you my children are my world. I am questioning everything I've done as a mother. Did I do something wrong? Should I have BF longer? Did I let her be treated too often with antibiotics when she was younger. What will her life be like? She is due to start kindergarten in 21 days. Will she be able to go?

Thank you all for reading. Honestly, I don't want to be a part of this group but because these are the cards we have been dealt I feel so grateful and blessed for this forum.

Deanna
 
Deanna, I am so sorry you find yourself here but you will not find a place with more wonderful, supportive people. My son is much older but his symptoms began after being treated for acne issues with doxycycline and I wonder if it may have been the trigger for his flare. We all carry the guilt, questions and what ifs with us but to be sure it is unwarranted, just what mothers do. Now back to the wonderful, supportive group...let's see farmwife has a young daughter(in a similar situation) as well as izzi's mom(daughter diagnosed), they may be able to give you some insight. There are more with children around your daughter's age and I'm sure they will be by shortly! I hope you don't have to officially join "our club" but if you do you will find great support here.
 
:panda-wave-t: Welcome.
Sorry you need to visit.
There are a lot of mom with LO on here.
Hopefully they will do a colonscopy soon and be able to help you sort it all out.
gray area is never good.

Also repeat after me- nothing you did caused this. even the "smart" scientists
haven't figured it out yet.
:wink:
 
Hi and welcome. Sorry you are here ... we've all felt like you did. The high FC tests could be caused by infection too, not just IBD. I would think a colonoscopy is in order now. Has you daughter has any Crohn's related blood work done? (ESR, CRP, Prometheus or other antibody testing - ASCA, ANCA) Good luck. Please keep us posted.
 
Thank you all for your responses! I hate that so many of you have had to travel this long, scary road to a diagnosis. I just talked to the nurse and they have scheduled an endoscopy and colonoscopy for August 14. They are scheduling for October but I guess the doctor feels that Ellie and a few other children he's seen recently can't, or shouldn't, wait so long. As a side note, it totally freaks me out that in our entire state (New Mexico) we have a grand total of 3 ped GI's and only the one we are seeing treats patients. Of the other two docs one is an administrator and the other just deals with liver disease.

I also just picked up Ellie's blood lab results from yesterday. I don't understand most of this and would really appreciate any info.

GGT 18 normal is 2-17

Hepatic panel:
Total protein is 7.3 normal range is 5.4-8.3
Albumin is 4.0 normal 3.4-4.7
bilirubin total .2 normal .3 -1.2
bilirubin direct <.1 normal .1-.4
Bilirubin, indirect - unable to calculate
Alk Phos 250 normal 74 - 359
AST 36 normal 6-38
ALT 34 normal 12-61 *** first time this was normal, they were close to 500 earlier this year
CRP <.3



HGB was slightly elevated over normal
MCV was very slightly elevated over normal
MCHC was very slightly elevated over normal
HCT was borderline elevated

WBC, RBC, HCT, RDW and Platelets were all normal

Celiac Panel -- very negative

Thanks again for the support!
Deanna
 
It would be suggestive of IBD **** if **** she had not had a c. diff infection.

The test result may instead indicate that the c. diff is far from gone or that the infection is gone but the inflammation it caused has not yet passed.

I don't mean to say that she may not yet be diagnosed with IBD. Just that one test result does not = diagnosis. Unfortunately the c. diff makes it hard to determine if her labs are off since the infection will have sent her ESR through the roof along with her WBC.

The ped GI may want to scope her to clarify the situation.

If an infectious disease (ID) doctor/team has not been brought in to consult on your daughter's case I strongly suggest that you insist that be done immediately. Like tomorrow. If an ID doc is consulting, they seem to be doing a lousy job and I would be seeking a second opinion. I am not a doctor but have extensive experience with c. diff infections. With very few exceptions there is no reason she should have had 5 or 6 c. diff recurrences in a matter of 5 months. I doubt that she has been treated and monitored appropriately if that is in fact the case.

Either that or she is getting re-infected by something. Probably no one told you that c. diff can linger for months on hard surfaces in your home or at school if she's in preschool. Proper disinfection of everything in your home, your cars, anywhere she visited before she was diagnosed or in the first couple days afterwards (this applies to every recurrence too) needs to be carefully and thoroughly disinfected.

Here's a link to the Mayo Clinic information on prevention of c. diff. It includes information on cleaning in the home. Note that c. diff is not killed by antibacterial soaps and alcohol preparations. You must use plain soap and water and thoroughly clean your hands to get rid of the spores.

http://www.mayoclinic.com/health/c-difficile/ds00736/dsection=prevention

You said she is taking iron. This can contribute to GI inflammation and is often poorly absorbed, depending on the formula you are using. Her numbers look OK so you should be sure to ask the GI if it's OK to stop. He may want to check her Ferritin and/or run an iron transport study first IDK.

It's hard not to jump to certain conclusions when the information on the internet or in pamphlets seems to fit a child's symptoms. But, in my opinion, it is way too early for you to come to the conclusion that she has IBD. And don't kick yourself about the antibiotics. An untreated strep infection can lead to heart or kidney damage.

Hugs and remember to take deep breaths. It will be OK. It's just going to take a while.
 
Last edited:
Hi Deanna,
I am glad the liver results seem more normal. Do you know if the GGT had been higher previously? (It can be related to bile disorders) My son also has slightly low bilirubin and I have been told that it is nothing to worry about. I am glad they scheduled the scopes.
 
Hi Deanna
Welcome! Sorry you had to find us but glad you did. I want to comment that you wrote her hgb, mcv,mchc, and hct were all slightly elevated. I would speak with her doctor to see if you should stop her iron supplement as those labs are all increased by iron supplementation. You don't want to give to much iron it can be just as dangerous as to little. I hope the endoscopy and colonoscopy give you guys some more answers. The waiting and not knowing are rough. Keeping our fingers crossed for good findings!
 
Hi and welcome,
Yes this is the group NOBODY wants to be part of. However we are all thankful to have this group.
Ok as Clash said I have a beautiful spirited handful of a farm girl named Grace. She and her brother and my hubby are the center of my world. I love it that way and am NOT ashamed that I'm a full time mom and farm wife. Our stories sound about the same even down to the c. diff. My girl is still undiagnosed and has been suffering with issues since 6 mo. old. Your girl seems to be more ill right off the bat. Where as my girl builds ( gets worse) up than goes into remission and I question if I'm making to much of this and then she flares up again.
For years I sat by and believed the Docs and waited it out. Now that I think about it, NO other babies were like mine. Grace couldn't sleep the first 2 1/2 years of her life because on pain. I did nothing but believe what I was told. Talk about feeling guilty. Their is still a chance she might not have crohn's or UC but I'm not waiting on docs who know nothing, any more. I'm going to try to find my first post I did. That will give you a good back ground of Grace's history.
Hang in there!!! Your not a lone. You and your girl will make it though this learning curve and whatever life throws your way.


Welcome to the group you will find info, advice, help, hope and even a laugh (when your ready).

Farmwife
 
I just joined the forum today and should have joined months ago. My 7 year old daughter (now 8) was diagnosed with crohn's christmas. I too made the connection to the antibiotic used to treat her strep throat with a rash. Her symptoms started slowly and the main thing was weight loss. It was nearly 7 months before we had a diagnosis of crohn's disease. She was diagnosed with Pin worms and immediately after that medication she stopped eating and started having fevers and went downhill fast.

The good news is there are treatments available for our children. I am particularly interested in LDN as I have to make a decision about moving to remicade by Friday. Thank you kimmidwife for your post, I found it very informative.

NMMOM - all the best to you and Ellie as these are very difficult times
 
Hi Deanna,

First off what an adorable name, Ellie, I love that name! I am sorry Ellie is suffering and very sorry that you do not have definitive answers. We have no experience with C. Diff but plenty with the guilt. My daughter's disease seemed to come on fast and hard and landed her in the hospital for 6 days at which point the ped GI told me he was very worried about her and that I should call our pastor and my husband a.s.a.p.. When I said I didn't understand how it got so bad so fast he said he figures she had it for 2 years and that her lack of growth, puberty, and weight gain were all pointing towards IBD. Then there was the severe dehydration and the fact that she was yellow! How could I have missed all that? I started crying and this rough tough doc was so kind. He told me that these kids often slip by even the best docs and that each little thing in and of itself would not make any one think IBD. He said that it is the norm to be undiagnosed for almost two years and that there is no way a parent should feel guilty especially when the kids are under the care of a pediatrician. I also thought if I fed her better or didn't live in an old house with lead etc etc she wouldn't have this disease bu he assured me that nothing we do as parents gives them the disease...if they are going to get it they do and worse case scenario hen they are in a flare perhaps we feed them something that bothres them but e certainly did not cause the falre. Ugh I am babbling.

Seems like you have some encouraging news here on the forum. I will say a prayer for Ellie that the scopes turn up nothing and that all her issues are from c. diff and that you can leave on your happy way. Either way you will have answers soon and be able to take necessary action.
 
ItTakesGuts-
Hi and welcome. Sorry to hear about your girl. Lots of info on here to look through. Please ask any question or give support anytime. I and WE sure need it around here.
Welcome aboard.

Farmwife
 
NMMom and ItTakesGuts,

I just wanted to welcome you to the forum as well. It is heartbreaking to deal with all these issues when they affect our children! :( and I am sorry that you both have had to find this forum but I hope you are able to find some support and encouragement here.

You've already met some of the wonderful parents here - you'll find tons of help, advice and support (and friendship and laughs too). I think we've all blamed ourselves and wondered 'what if' but try to believe it truly wasn't anything any of us did or didn't do. :ghug:

Feel free to ask lots of questions or just for some help in getting through the rough patches! :)
 
Deanna -

About the lab results. For most things, being just outside the normal range is not going to be considered significant for a couple reasons.

1. It could be within the margin of error for that test meaning that it might really be in the normal range.

2. Hopefully the doc is treating the child based on something more than her labs. How she looks, what he finds on exam, is she growing - all those are at least as important as slightly abnormal lab results.

As a long time reviewer of my son's labs, I can tell you that they do indeed look pretty good and do not suggest CD at this point. Remember, my son has normal labs up until he is very sick so I am not discounting that. But. Some of the key markers that the doc is looking at are the albumin, WBC w/diff - especially the lymphocytes, platelets, CrP, H&H (hematocrit and hemaglobin). In all those areas her numbers are good. This is reassuring - you know her body is not in danger of collapse right?
 
Hi just wanted to say welcome. Sorry to hear about your daughter, it is heartbreaking to see them in pain. We would all trade places with our kids in a heartbeat. Sometimes I think it would be great to know what started it all but maybe it's nice not being able to blame one particular thing and wish that it had never happened! I hope the endoscopy/colonoscopy goes well and you get a diagnosis so she can be treated and get better!
 
Patricia56, thanks for all the info. I really appreciate it. Her biggest symptom is stomach pain and bloody stools. It is actually 4:00am here and I'm awake because she woke up with stomach pains but so far hasn't had to poop. I can hear a lot of gastric noises, though. Do you, or can you, give your child pain meds?
 
Tylenol in the correct dose for her WEIGHT is OK. Narcotic pain killers are NOT ok. They slow or stop the gut and you don't want that.

Practical measures like the heatpack Catherine suggested are good. With a child that young I would probably use a rice pack rather than a heating pad. She can go to sleep with a rice pack on her tummy but not a heating pad.

A warm bath might help.

Biggest thing that will help is getting her well. :(

I also suggest that you start keeping good records (if you're not already doing so) of when she goes, when she wakes in the night to go or has pain, when she has bloody stools, etc., when she has pain and how bad it is on the usual 1-10 scale.

For a child friendly pain scale you can print at home go here:

http://0.tqn.com/d/pain/1/0/N/-/-/-/wong_baker_faces.gif

When recording bloody stools, I suggest you get a toilet insert that you can use to catch the stool. You probably have used this already to get stool samples. Get a clean one if you can and catch her stools so you can more accurately assess the amount of blood and quality of the stool.

In my experience doctors tend to discount reports of blood in the stool because a little blood looks like a lot once it's in the toilet water. So it is helpful to be able to report that you caught the stool and this is what it looked like before it went into the toilet.

Also doctors react differently to someone who walks in the door with detailed records. They are much more likely to take you and your concerns seriously since you have the records to back you up. It is also helpful to them in figuring out the puzzle.
 
Welcome deanna.....
Please know you're in good hands here with lots of helpful people going through the same things and having the same feelings....I know a few "moms" mentioned the helpful moms here but I want to add there's a "dad" or two as well!
Anyways....it feels like just yesterday that I wrote my introductory message and I too expressed the feeling of sadness and not wanting to be apart of this. I tear up now thinking about how hard that initial message was to write but now know how helpful it turned out to be. Never allow yourself to think you had Any blame in any of this......no one quite knows yet how this happens or what we can do to control or prevent it....if they did it would take but a series of google searches to solve all our problems. You did everything you could to care for your child......hopefully with some time you will have your answers and know exactly what you're dealing with and then you will Be on your way to fixing your daughters issues. It is frustrating for sure but it gets better. Hang in there. At this point I still suffer in small doses.....I worry constantly about my matthew who is ill and about my others who could becomeillbecause that's what we do right?) but since diagnosis I have met many others, some children...some adults......some have no colons and despite this being a huge fear of mine they tell me life adjusts and they live completely fine without a colon.....I only mention this as an example.....what seems unbearable to me has become a normal part of life for them.....and they adjust.
So hang in there....keep advocating for your daughter.......love her as you normally would and roll with the punches! Control what you can control...find a way to accept what you can't. And NEVER second guess yourself when it comes to decisions you made in the best interest of your child.....
Best of luck to you and Ellie ...
Don
 
Hi Deanna,

I am so sorry to hear that your daughter has been ill. It is heartbreaking for us parents when our children are sick and there is no quick solution. I am a little late in getting to your post so I hope that your daughter is feeling better now. Just wanted to say that my son has had a lot of abdominal pain and I know how devastating it is to watch them in pain. We have found that when his pain is bad distraction works best. We have rigged up a way for him to watch TV in bed if need be. By getting his mind to focus on something else the pain seems a little bit lessened. I will even let him watch TV in the middle of the night during bad bouts of pain and it helps a little.

:hang:
 
Hi Deanna,

Like you, I am new to this forum and have quickly figured out that there are A LOT of families impacted by Crohn's. I just signed on this evening for the first time.

I read your post and want to share my now 11 year old son's story with you in hopes that it may provide some temporary peace of mind, if anything. Dustin started showing symptoms of Crohn's when he was 5 years old after attending a birthday party at the swimming pool of our local YMCA at the end of July. Up until this event, he was perfectly healthy.

Immediately following the swimming party, the chronic diarreah started. This went on from July until well into April of the following year. During this time I took him to the doctor what seemed like every 2 weeks. I was told that they were seeing this virus, and that virus, and treated him with antibiotics. He would show temporary signs of improvment and go right back to where he was, or a little worse.

By the following January, he had become lethargic, not wanting to play or even watch TV. Little to no appetite. When he did want to eat, he would take 2 bites and be sick to his stomach, and doubled over with stomach cramps, and frequent "urgent" trips to the restroom. This was occuring during the middle of his Kindergarten year.

In March, I went to pick him up from daycare, and he was doubled over, couldn't stand up straight from pain. I took him to the ER, and found out he had a mass wrapped around his appendix the size of the surgeon's fist.

He was transported to our local Children's Hospital for an emergency appendectomy. The surgeon assured me that this was the cause of all of his symptoms and he could go home that afternoon. That was on a Thursday.

On the following Saturday, he would not eat, drink, and spiked a fever of 103.5. As you can imagine, I was going out of my mind trying to figure out what was going on with my little guy.

I rushed him back to the Children's Hospital ER, where we were admitted and remained for 3 weeks. Severe anemia, multiple night sweats, fever spiking multiple times (even with tylenol and ibuprofen). 2 weeks later, he weighed 32 pounds and was extremely ill. He was checked for C-dif, and multiple other things. All negative. The GI doc finally came and visited and suggested Crohn's. When I read the information he provided I was sick to my stomach; he had every single symptom. Canker sores in the mouth, all the way to the skin tag and inflammation on the bottom. He was not well enough to do the colonoscopy until April.

It was confirmed, IBD and Ulcerative Coalitus. We started on Imuran, Asacol, Prednisone, and liquid iron. Within a week he had relief. It took a year and several adjustments to his treatment plan to get him to remission, where he remained until 2 years ago. His treatment has evolved to Remicade infusions in addition to the Asacol. We refer to Remicade as the miracle drug, as he felt great the day after his first infusion and did not experience any side affects until his dosage was increased this past February, and that was minor, relatively speaking.

Unfortunately, yesterday, we just added a new med, methotrexate, to his treatment plan as a result of a new area of imflammation in the large intestine. Although I am anxious about the side effects of long term use of remicade and methotrexate, he already shows signs of improvement. I am considering a second opinion, not because I do not have faith in our GI team, but for peace of mind that we have explored all options and have agreed to the most effect treatment plan, minimizing as much of the long term risks as possible.

I wish I would have known about this forum at that time. There are no words to describe the emotions that my family and I felt during the period of time it took to figure out what was going on. I had a 4 week old baby when Dustin went in for his 3 week stay, and our entire family and extended family was impacted.

My heart goes out to you and your family as you work to get a diagnosis. I can appreciate how you and your family must be feeling right now.

Please keep us posted on how things go and best wishes to your little one, and your family.

Kristi
 
Hello, and welcome.
I just wanted to share that Izzi was treated with 2 rounds of antibiotics...her doc said while she was a c diff carrier she was sick from her ibd, not an active c diff infection. i am sorry it took you so long to get to the scope...hoping for a more definitive answer for you!

welcome to kristi also :)
 
Hi Deanna, ItTakesGuts and Kristi M and :welcome:

I am so very sorry to see that you have all had the need to find your way here :( but I am happy that you have found such a supportive, informative, loving and fun place. :)

I hope Ellie's problems are related to the lingering effects of C Diff and not IBD, bless her...:hug:

Man oh man, the guilt...I have wracked my brain over the years until I was just about bonkers trying to find a reason why my daughter and then my son developed this disease.
I have looked at every similarity and difference between them and everything in-between and nothing makes any sense. I gave up in the end lest I get sectioned! Oh, and I breastfed both of my children for quite some time and neither of them had antibiotics until they were diagnosed with Crohn's, yet here I am.

I did not find this forum until 5 years after my daughter's diagnosis. I think the first couple of years I was in too much shock to do anything and the amount I knew about Crohn's you could fit on the back of a postage stamp and a damned small one at that! After the shock subsided i started reading, reading, reading, questioning, questioning, questioning and just making a nuisance of myself. :lol: So when I did finally find my way here I too thought...why didn't I find you sooner! :ybiggrin:...but then thought oh well, maybe I could be of some help to someone. Then my son was diagnosed, whoa, wasn't that a bolt out of the blue and what a difference a forum makes! The support was invaluable in helping me get through some very dark days indeed. I still have my up and downs and some days the black dog comes a nipping at my heels but most times I can out run him and i can do that because I can come here and vent to people that understand what I am feeling, why I am feeling it and letting me know that I am not alone.

You guys aren't alone either, so all aboard the roller coaster ride! It can get bumpy at times so hang on but rest assured we won't let you fall!...and at the end we all enjoy a calm and leisurely ride on the merry go round!

Oh and does it get better? Do things go back to normal, a new normal but normal nonetheless? Too right they do! The life, light and laughter do and will return and the detour you have had on the way just makes it all the more sweet and special.

Dusty. xxx

Dusty. xxx
 
I would definitely want to see Inf Disease and GI....love your heart! Claire had a C Diff infection about 3 months prior to dx with Crohn's disease. They can be a bear to beat!

Keep us posted on how things are going.....this is a good place to be if you have to be here.

J.
 
Hi Julie,

Thank you so much for your post! It looks like (fingers are crossed extra tight!) the c. diff is gone but the IBD symptoms are in full force. It makes me wonder, and I'm sure there is info out there, but which came first? the chicken or the egg so to speak.

From your name I was wondering if you were in Arizona? Do you have a good pediatric GI doctor where you live? We are in New Mexico and although we really like our GI he is the only one and I worry if we were to need a second opinion or he suddenly left where would we go? You could PM me if you have a second - I so appreciate any info you might have.

Hope Claire is doing good!
 
I just wanted to echo what everyone else has already said...So sorry that you have to be here, but you won't find better support and information. I hope that you get some answers and can get a plan of action going to get her better.

I can't tell you how I have racked my brain wondering what we did/didn't do that caused this IBD. I'd love to change this for my son, but I can't. Now, we can only be active in their care and do our best for them, whether it's fighting for the best treatment or just giving them extra hugs and kisses.

Keep us posted on how things are going. I will certainly be praying for you.
 
Hi Kirsti and deanna , just want you both to know that i too had my little princess amy aged 8 just turned 9 diagnosed in April 2012 she was so so ill and had c-diff as well - I am only a few months on but she is doing so much better every time we have a set back we just keep going we have a great GI Nurse who we can ring and email whenevr we need too and that has really helped but when she was so ill i was mentally in hell so i can appreciate the pain shock hurt and heart ache and sense of loneliness that you both feel - keep strong you can and will manage this ill ness all the support and love that i have got from these fantastic members has really helped. they have so much advice and many times i went on line and cried that somebody knew how i was feeling. The problem with crohns /disganosis is that it takes time, and we want our children to be better now! we also want it to go away and i was so angry that this had happened to Amy and our family i blamed myself and not being more attentive shouldve caught it sooner ( she is the youngest of four the other three all healthy although i watch them closely ) so please know that you will and are managing this i still think of those awful dark nights in april and am amazed at how well Amy and all of us are doing will say special prayers for you all
love to you and your little ones
kathymumxx
 

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