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Worried Mom

AndiGirl

Your Story Forum Monitor
Many of you may have already met me through the general forum, as I have CD. I have been keeping in this in for a while because I am afraid and do not want it to be true.

My husband and were married for years before having children. I had difficulties carrying babies to term and had suffered two second trimester losses. I literally felt like I wasn't ever going to be happy again after the second loss. To make a long story short, I was able to pick myself up, deal with the grief and the following flare-ups, and move on. I was actually okay with being childless in the early part of 2008. I had made peace with my situation. Low and behold, a cousin from my mother's side of the family was trying to contact Scott and I, because he and his wife wanted us to adopt their baby. They had too many children and were not able to care for another. We were honored and overjoyed. We brought our sweet little boy home when he was two days old.

Scott and I thought we were doing everything right. We bottle fed him formula until he was a year old. He had no problems weaning from the bottle. We started him on the recommended foods at the recommended times. He was a happy, healthy little guy. My mother-in-law spent time with us for a while when Alex was between 13 and 15 months. She was constantly giving Alex milk, fiberous foods, veggies, and fruits; healthy foods. My MIL loves to comment on my poor diet: limited veggies, limited fruits, white bread, very little milk. She seems to think that my CD would improve if I indulged in the foods that she was feeding my son. I quit trying to explain the disease and how I have thickened areas of my bowel that will revolt if I eat those things in the portions that are recommend. I noticed that a couple of weeks before my MIL left, Alex started getting horrible, urgent, and explosive diarrhea. It literally became a living nightmare during the summer of 2010.

Scott and I were blessed with a baby girl in March of 2010. I found out that I was expecting her when Alex was six months old. That summer was horrible because Alex's digestive troubles were at their peak. This diarrhea was very explosive, watery, and frequent. There were days when I wanted to curl up and cry because it seemed as though I was changing diapers all day long, between the two babies. Alex would have bouts about 10 times a day. It really affected our family and my general mood. The diapers, no matter what brand or size we tried never seemed to contain the mess. I was constantly washing sheets, clothes, the floor, his high chair, you name it. Some of my family members didn't want to hold him because of his many accidents that would get all over. I felt like I couldn't go anywhere because I was house bound waiting for another accident and huge mess to clean up. Feeding him was also a nightmare, as he seemed to have a messy bowel movement while still in his high chair. His accidents have caused many members of my family to lose their appetites. My mother came up with the idea of putting him in a garbage sack from his waist down while eating. I know that sounds very tacky, but it helped out with the mess.

We brought Alex to the doctor several times. They did numerous tests on him: checking for parasites, Celiac's Disease, food allergies, etc. Everything came back negative. I mentioned to the doctor that I have Crohn's Disease, but that Alex was adopted. He is from my mother's side of the family, and there is some speculation that there may have been CD on her side. We know without a doubt that it is on my father's side, but Alex is from my mother's side. The doctors were even more baffled because Alex was still growing and gaining weight in spite of all the diarrhea. Neither of his biological parents are big; however, after starting out small Alex grew like a weed. He is big for his age; 95-99% for his height and weight. His head is off the charts. Alex went through a phase of having terrible excema. I can relate, as I have it too. Allergies and asthma are the only known problems from his biological parents.

They couldn't find anything wrong with him, so we continued to do our routine of cleaning up bodily fluids. My brother although well meaning with a dry sense of humor, started calling our house, "The bodily functions house." I helped to care for my brothers kids off and on in the summer when school was out. My brother was a gem when he would offer to change Alex, giving me a much needed break. We both started noticing something even weirder. Alex's poop started smelling like vinegar or wine. My brother almost made me gag when he said, "His poop smells like bad salad dressing." It was true. I presented that fact to his pediatrician, she was still confounded. There was a big difference in the way Alex's poop smelled versus Beth's poops. Her's smelled like regular poop and his had a weird vinegar stench. That smell made it even more disgusting. In spite of being clean and washing everything down, our house seemed to smell like the vinegar poop all the time. I'm ashamed to say that Scott and I quit putting pants on Alex. What good would it do? They would only get soiled again, and it would be harder to notice another explosion. Alex was running around in a shirt and diaper.

Our pediatrician came up with a diagnoses that seemed to make sense. She thought that he had, "Toddler Tummy." She knew that we were feeding him some very healthy things in hopes that his stomach would settle down. She told us something that even she would normally have problems with. She told us to increase the fat content in his diet. We were to try adding bacon, and other foods with a higher fat content. We of course would continue to feed him healthy things, but needed to add some more fat to his diet. We also learned that he probably wasn't tolerating milk, so we switched him to rice milk and almond milk. We noticed a change for the better. The poop wasn't as explosive or frequently.

This is what I'm worried about: his stool is never really formed (it's always on the loose side), it still smells weird, he is not overweight, but his belly often looks distended. Other than that, he seems okay, and he is continuing to grow and gain weight. I wasn't diagnosed with CD until I was an adult. I know very little in the way of how CD affects children. Most of the books that I have read were geared towards the adult sufferer. Scott knows that I worry a lot. He also knows that I am a member of this wonderful forum. He is worried that I may be trying to put Alex in the CD category. That is very untrue. I am just worried. He's only two years old, so he has a whole life ahead of him. His digestion and elimination do not seem normal to me. I want to find out what is really wrong with him. I seem to be getting, "He's fine, don't worry. We can't find anything." I really appreciate advice and input from the parents of children who suffer from CD. If Alex doesn't have CD I would be overjoyed, but I still want to find out what is wrong. Thank you for listening.
 
Your Alex sounds very like my brother as a baby. Apparantly as well as the poops, he would often vomit (not just spit up). On doctor's advice, my mum did a food diary and exclusion diet. Turns out he could not tolerate cow' milk. Have you tried doing this for Alex?
 
aw i am so sorry to hear what you & your son are going through - it must have been a horrible few years for you all :( i remember when my daughter was a baby she suddenly developed explosive diarrhea that went on for months, and a very sore bottom too.. we kept changing all the formulas but nothing seemed to help - i was a my wit's end, so i can sympathise completely.

i would support the idea of taking him off dairy completely - there are so many alternatives now, it's pretty easy to keep a dairy-free diet. i'd also take his diet down to basic, easily digestible stuff for a little while, and introduce other foods slowly, one by one, so you can monitor what, if anything, has an adverse effect on him.

it's understandable for you to worry about the Crohn's aspect, but he may simply have a childhood intolerance issue, and he may grow out of it.

if you keep a diary of his foods/drinks and his poop, it will help you to see if there's a pattern there - also make notes of other symptoms like skin rashes etc... and this may also come in handy if you want to take things further with his medical team.

there is a branch of NACC which covers Alaska - their link is here... http://www.ccfa.org/chapters/northwest/ you may find it helpful to contact them for support & advice.

good luck - i really hope he settles down and you can get back to enjoying your kids without the worry!!
 

AZMOM

Moderator
Oh Andi - it breaks my heart that you have been worrying for so long!!!

First, you aren't crazy. Claire has always eaten like a horse and been in the 95th percentile for height & weight since she was a baby. So don't (and I KNOW you won't) stop trying to figure it out just because he is growing.

Second, you know all the questions to ask but just thinking aloud.......has the pediatrician done the "basic" labwork on Alex? Just CBC, etc? No elevated ESR or CRP? If all those are normal, I think going at elimination diet like Rebecca recommended wouldn't be a bad idea.

Actually, I'm adopted too and only know about the mother side of things. I find myself looking sideways at my two and wondering if they got their Dad's "good genes" or my mixed bag of tricks. It is hard to watch and wait when you know something's not right, isn't it?

Please let us know how he is doing. My heart just breaks for you.
 

Astra

Moderator
Hi Andi

Oh poor you, what a traumatic time you've had, great that you've shared with us, now hopefully we can help!

The first thing that came to mind was a yeast overgrowth. Cutting out all sugars will help, sugar feeds yeast. The vinegar smell is a symptom of by products of yeast.
Probiotics would help with this.
Another thing, the smell might be coming from his urine not the poo. This might indicate a urinary tract infection or kidney troubles.
Then, there's teething, I remember when my kids were teething, bloody nightmare! I was in and out of the clinic like a fiddler's elbow!
Their poo and wee stunk like a pole cat!
Then of course they just 'grew out of it'
If in doubt, seek it out! Give the GP a visit to be on the safe side.
good luck Andi
xxx
 

AndiGirl

Your Story Forum Monitor
Thank you for all the kind words and great advice. We took Alex off of milk products. He seems to handle rice milk and almond milk just fine. We had a terrible weekend. Our baby girl, Beth, turned one on Sunday. We had her birthday party on Saturday. The family and friends all had a good time. Alex doesn't eat a lot of sweets as we have had to watch and prevent explosions. My mother, God bless her heart, had two special cakes made for Beth. One was a frilly, girly white cake with frosting roses, and the other one was an ice cream cake. I was so busy tending to the details, playing the hostess, etc., that I didn't notice that my mother had given Alex pieces of both cakes.

Around 9:30 p.m. I was getting ready to turn in myself when I heard Alex screaming out in pain. I ran into the room, and he was sleeping with Beth. They are both in cribs, but he can climb out of his, and I frequently find them together. I saw what I thought to be diarrhea in the corner of the crib. I got Alex out and ran a warm bath for him. He seemed fine except he was belching a little. When I got Beth's crib cleaned up, along with Alex, I put them to sleep again. About 40 minutes later, I heard the same terrible screaming. Alex was in Beth's crib again, but I noticed two big spots of diarrhea on his mattress. I noticed something nasty around his mouth. When I changed his diaper, I noticed that it was clean. I think I was mistaking the vomit for diarrhea. I woke Scott up and he helped me to once again clean both babies and both beds. Alex started throwing up clear looking liquid.

Scott ended up staying home to help with the sick Alex. Neither of us got much sleep. The poor baby was so miserable. It was his first time vomiting so he acted pretty traumatized. When a wave of nausea would hit, he would start to cry and pace back and forth, trying to avoid either daddy or I and the puke bowl. I felt so bad. I told my mother about the incidence and she felt very bad. I think that the lactose intolerance played a part, but now I'm beginning to think that a stomach bug hit our house. Beth threw up two days before her party. Our sitter called in sick on Friday, she had the stomach sickness. Scott and I have felt pretty bad for the past day and half now.

We are keeping Alex off of diary and using other substitutes. In one blood test, he had an elevated SED rate and that caused some worry in his pediatrician. We had to go in for another round of blood tests. Those came back normal. His diarrhea has calmed down some, but his poop has never been really normal. His skin issues worry me because I have them with my CD. Like I said, if we had adopted him from my father's side of the family, I would immediately suspect Crohns or Inflammatory Bowel Disease. I am related to Alex's biological father. His biological mother is probably 100% Alaska Native, and her people are usually very healthy. Longevity is often found among Alaskan Natives. They also have very low rates of heart disease and autoimmune diseases in general. I do know that there is asthma and allergies on his biological father's side. I myself have asthma, and found several interesting articles online about some cases of asthma and IBD being related or found in the same patient.

I don't know whether I should request a more specific blood panel, or if I should just continue as I'm doing. He seems to be an otherwise very healthy and happy little boy. I don't want him to develop problems down the line either. Please help.
 
my advice would be to get him referred to a GI, if you haven't already done so.

regular gps & paediatricians can only do (& know) so much - i would be wanting my kid if he were going through these symptoms to be under the care of a gastro specialist.

it does sound like Alex may well have come down with a bug, given the sudden onset of vomiting and the fact that this isn't one of his usual issues.. but he still has unexplained problems, and i do think he needs some proper investigations, not just blood tests.

you may have read on here that many of us have had misleadingly good blood test results, yet we have diagnosed IBD - bloods don't always show exactly what's going on.
 

DustyKat

Super Moderator
Hey Andi,

Oh my, I am so sorry to hear about all you have going through. I don't have anything to the great advice you've already been given so I will just give my own opinion as to what I would do, don't know if that is any help to you! :eek:

If it were me I would pursue further testing via a paediatric GI as ding as suggested. If you find the answers you seek, and I certainly hope you do, then that will be fab but if the answers still evade you at least know you have tried everything. As a parent I think one of the worst things is in hindsight wondering if you could have done more.

Thinking of you, :hug:
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm with Ding and Dusty on this one. I think Alex should be seen by a ped GI. Is there one reasonably near you?
 

AZMOM

Moderator
I'm on the bandwagon. I think a pilgrimage to a pediatric GI is in order. How far would you have to go, Andi?

I do agree wtih you that it was likely a virus since everyone was ill. Nothing like everyone being sick........geez.

Please keep us posted. You are shouldering a lot!!!
 
Andi, I'm so sorry to hear about poor baby Alex

I am no baby expert but would it be possible, thinking right outside the box, that poor Alex's problems could be related to a development issue in his lower intestine/Bowel or rectum? I have heard of babies that have suffered once born due to some small thing/valve/flap that has not fully formed during pregnancy or not seated correctly. Possibly even like the 'flap' in the heart that results in some having a PFO

Just a thought and, while it is fully understandable to relate his problems to CD etc it might help to look elsewhere, reassure yourselves on all possibilities

All the best and I hope the poor mite can be helped soon :hug:
 

AndiGirl

Your Story Forum Monitor
Thank you all again. Alex appears to be feeling well. I wish Scott and I were. My brother-in-law, Scott's older brother, lives downstairs (he rents a room from us). He started vomiting and getting body aches. Nothing like sharing! Alex is finally starting to eat again and his color is back. The stomach virus started the diarrhea again, so it's back to cleaning big messes again.

After discussing this issue with Scott and sharing the wonderful, very supportive posts, this is our game plan: schedule an appointment with the Pediatric gastroenterologist, schedule an appointment with the allergist, and take it from there. We are both afraid that it may be a long drawn out process, but we really need to know what is wrong with our baby.
 

AZMOM

Moderator
Andi - I think that is an excellent plan! You're right.......it might take awhile but you'll be able to confirm or rule out (insert crossed fingers here) some diagnoses, one at a time. Please let us know how y'all are doing.

As for the virus......blech.....love your heart. I bet you're ready to bleach the whole house from top to bottom. :hang:

Hugs,
 

Crohn's 35

Inactive Account
Hey Andi, so sorry you are dealing with all this. I dont know how you manage and support everyone here! I always say, Angels walk among us ;). I am so glad you are getting your son a specialist, always best to find out what is wrong. Fingers crossed that is isnt IBD but sure sounds like it. YOu say it smells like like a vinegar smell, I find that it is like a sour smell, but even our bm's are different lol. Good luck and keep us posted ok! ((hugs))
 
Hello Andi,
Unfortunately I cannot give any really good advice on this matter, but am really sorry you are suffering with such dilemmas and hope the best will come out of it. They say good always comes after bad, so I hope it will for you and very swiftly. Otherwise, great plans, hopefully they will pull through. Much love and support to you. If there is anything I can do to help, please let me know, I would love to help end your troubles. :hang:


kisses, Aya
 

AndiGirl

Your Story Forum Monitor
Thank you again for the comfort and support. Daddy and mommy are back to cleaning up explosions. He does react the same way that I do after I get a stomach bug; my digestive tract is stays out of whack for a while. I'm grateful that Scott cleaned up the huge mess this morning. The vinegar smelling poop is really confounding everyone. It does have a sour smell to it. Most people dislike the smell of poop. I am finding the vinegar poop odor to be even more offensive. It's very hard not to associate it with food. The nasty poop smell is what we typically think of when we think of waste and elimination. When I'm cleaning a diarrhea mess, I do not want to be thinking of food. I'm probably not making sense. LOL!

His kidney were checked, and he doesn't have a UTI. Yay!
 
Good news on the Kidneys :thumleft:

I recognise a different poop smell now but I can't explain it, just know it when I smell it. I think it's sort of 'chemical' but not the ammonia type of chemical. See, I'm useless at describing it :eek:

Are there any good probiotic yoghurts good for babies/toddlers ? Children usually love yoghurts

I hope they can find something to help him soon :hug:
 

AZMOM

Moderator
Definite good news on the kidneys!

The only time Claire's stools smelled bizarre were when she had c diff & then during her hospitalization when there were large amounts of blood (This forum isn't for the faint of heart, is it? :))

More random thoughts.....have they already done all the stool cultures for Alex?

Hugs Andi,
 

AndiGirl

Your Story Forum Monitor
I like your humor, Julie. Crohn's Disease is definitely not for the faint of heart or stomach. Let's see: poop, pee, diarrhea, puke, blood, guts, abscesses. It's also not for the modest. Well you can't be when they run tests on you.

We did one round of stool tests and we have another set to down. Just picked the packet up. I'll see if Scott wouldn't mind collecting it. I know, I'm not being nice. Thank you again and hugs in return.
 
Everyone already gave you the best advice. I especially pushing some probiotics. There is some tasteless dissolvable acidophilus et al that you can put in a drink. The best for our son was a big old capsule of sacchromyces boulardii, and unless you're really brave with gently shoving pills down a tot's throat, you might look for another way to get that yeast strain to him. Maybe by cutting up lychees. There are some b complex capsules and l-glutamine powders which can also help with intestinal healing....

My personal take, especially after our experience, is that when we have weird smelling poop, weird explosive diarrhea, and digestion that doesn't seem normal, we are not "just fine" even if the doctors find nothing wrong. And in that case, we do what we can to learn what we can learn about possible causes, treatment, and health. We're not doctors, but we can do our best to try and do what we can within our abilities.

Another main point to emphasize: of course you and Scott have done and are doing the right things in doing the best you can in love for your little ones. Keep up the good work!
 

AZMOM

Moderator
Andi - Not sure if you read my other post. I was the poop scooper today. Prior to Crohn's, I only scooped poop for the dog. Now I do it for everyone! You are SO right, not for the faint of heart..........

Let us know when you get the results!!!!

Hugs,
 

AndiGirl

Your Story Forum Monitor
Your post made me smile. I will definitely let the you know when we get the results. For now, my house is, "The Bodily Functions House." I hope everything is good with your little one.
 

AZMOM

Moderator
Andi - Me too. When I smeared the stuff with a popsicle stick on the hemoccult card, I didn't like the color (red). I hope it is cupcake icing from school or something! (Yes, I know that's completely unrealistic but I know you can relate!)

When I think of me in there with the sticks and containers, I crack myself up. Ha ha. Glad it made you smile too.

I'll be waiting to hear!!!

J.
 

AndiGirl

Your Story Forum Monitor
Hi Julie! We are still waiting because it takes a while to get into see the pediatric gastroenterologist. So far, all his tests are normal, but many of us CD sufferers have heard that before. I am worried about Alex's belly. He is a normal sized child. He's actually big for his age, tall. His pediatrician even said that he isn't overweight. His belly sticks out. It looks bloated most of the time. When they tested him for Celiac's Disease he tested negative. The bloated stomach and diarrhea are really throwing me for a loop. Thank you for checking up on us. He's a happy otherwise healthy little boy.
 
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