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04-16-2014, 10:59 AM   #1
suspecttoddler
 
Join Date: Oct 2013
Location: Florida
Do I belong here?

I'm not sure I belong here, but I'd like to share with you everything in my journey thus far- which has quite frankly gotten me no where.

My son is 2 1/2 years old (30 months). Since he was younger, I noticed his stools would never solidify. He breastfed exclusively until about 6 months, where he skipped baby food and went straight to easy table foods (not for lack of trying on our part). He wasn't able to tolerate milk at 1 year (around his anus would bleed), and his stools remained similar to those of a newborn starting on solid foods. I was told to try milk again at 15 months, then again at 18 months. When the 18 month mark hit, and still no improvement with dairy, they told us to try lactaid. Lactaid didn't help, so I tried almond milk and finally found a substitute for how often he was breastfeeding. I was also pregnant, and did not want to tandem feed with how rough and tumble I knew my son was during nursing times (completely different than my oldest daughter was). He stopped growing when I weaned him (starting at 15m, completely at 20 months old), both height and weight. I think he's gained an inch and maybe 2lbs (dropping him under the 3% for height and under 25% for weight when he was in the high 75+ range). He simply plateaued.

He has bowel movements up to 10 times a day, and they are typically right after he eats. Almost every stool has undigested food particles from the previous meal and/or snack. They are always green/yellow in color- never a normal looking stool. I've explained it as yogurt, chunky mashed potatoes, peanut butter. We've never had issues with reflux, constipation or blood (save for diaper rashes, but nothing internal). They've told me that there is no issue with him, that he would outgrow this "diarrhea" phase. I kept insisting his stools had never been normal, save for maybe 10, and all at random times. We went through elimination diets at home, save for gluten, and nothing seemed to help. He was suffering from diaper rashes, yeast infections, and eventually diaper burns. He was stooling so frequently, that the medicine wasn't able to even help him before the next stool would come. Thankfully I found a product called Calmoseptine helped his skin to heal and keep him with a sufficient barrier.

Finally, I became fed up with my pediatrician (well, specifically, a different doctor at our practice) and sent in for an allergist appointment. We had a scratch test done, which I was told it wasn't a food allergy but a gastro issue. I called the local children's hospital network and scheduled an appointment. Some time after the appointment was set, I received a nasty phone call telling me my son was normal, and she had "3 kids of her own and could vouch that nothing was wrong with my son" and shame on me for not following proper referral procedures.

Here is everything we've been through, test wise:

9/26/13
Stool samples (salmonella/shigella, campylobacter, yersinia, e coli shiga, giardia, cryptosporidium) - Normal
CMP - Normal
ESR - 26 (flagged high)
CBC - Abs Neut: 9392 (flagged high), Abs Mono: 1042 (flagged high)
CRP - 1.08 (flagged high)
Celiac Panel - Normal

10/09/13
ESR - 17 (flagged)
CRP - Normal
Thyroid Stimulating Hormone, Free T4 Assay, Stool Reducing Substances, Calprotectin - Normal

10/28/13
Scopes appeared normal
Biopsies: Duodenum, Stomach, Esophagus Distal, Esophagus Proximal, Terminal Ileum show no diagnostic abnormality
Colon, Random Biopsies: Colonic type mucosa showing patchy mild eosinophilia with reactive changes, nonspecific.

3/17/14
ER visit for breathing issues, diagnosed as acute asthma attack and prescribed prednisolone, albuterol in both inhaler/nebulizer forms. A few days into the treatment with prednisolone (we already have had to use albuterol with him), his stools went completely normal. He was going once a day, and they looked like normal stool and not soft serve with food chunks. This lasted approx 4 days after prednisolone stopped.

4/14/14
CBC - Abs Lymph: 3844 (flagged low), Abs Mono: 1277 (flagged high), Abs Eos: 818 (flagged high)
Urinalysis, Phosphorus Assay - Normal
There are 4 stool samples pending, as well as a few blood tests by GI and Endo

We are currently starting a milk/egg free elimination diet by the children's hospital allergist. Although the first allergist said he was not reactive to any of the scratch test, the children's doctor decided that even the smallest reaction was cause to eliminate from his diet completely, but said he did not think his issues were food allergy related, but gastro in nature.

Along with this, we are waiting for the growth hormone tests to come back, as GI also said my son's height issues (32.5" at 30months) was an endocrine issue, not GI. Endo says its not endocrine, but GI. I have all doctors pointing me towards GI, and GI sending me on wild goose chases with other specialists, to essentially weigh them out (and costing us a butt load of money, might I add!)

Do I belong here? No one can tell me anything. I'm running in circles, trying to help my son. I don't know what else to do, where else to go. I just know that for over half of my son's life, I've gotten excuse after excuse for his stool. I want answers, and help. If I don't belong here, where else can a mom go?
04-16-2014, 11:29 AM   #2
Clash
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You absolutely belong here and welcome! I'm so sorry to hear of all you and your son have been through. My son was much older when his trouble started but there are a number of parents with younger kids. I'm going to tag Farmwife as her daughter started with bowel issues at a young age. Also there are a few more, Queen Gothel, and Polly13. Hopefully some of them will be by shortly.

I do hope you are able to find answers for your son quickly.
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04-16-2014, 12:32 PM   #3
polly13
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Hi and welcome, my little girl Lucy was diagnosed with crohns at 21/2 and had symptoms from nine months. Sometimes the journey to diagnosis is long and protracted. Lucy's symptoms were different but she too always had a sore bum that looked like diaper rash. For me I knew there was something wrong and I kept going until she got a diagnosis. Start writing down all symptoms, photographs the poo and show to GI. It is a really difficult time not having a specific diagnosis. There are others who could give you a view on the blood work. Hope you get some answers soon
04-16-2014, 01:30 PM   #4
Farmwife
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10/28/13
Scopes appeared normal
Biopsies: Duodenum, Stomach, Esophagus Distal, Esophagus Proximal, Terminal Ileum show no diagnostic abnormality
Colon, Random Biopsies: Colonic type mucosa showing patchy mild eosinophilia with reactive changes, nonspecific.




Hi I'm Farmwife. My girl is now 5 but has suffered since three months old after having the flu.
I highlighted the part of the biopsee report that struck me. DO you have a number of Eos in the report? It's very important to know.

I think your right to push for answers. My girl also suffered and the doctors told me she would out grow it and I'm making to much of it.

The thing to remember is there's more than IBD in the way of Bowel Diseases. I think your on the right track and please feel free to ask as many questions as you like.

We also have a Young Ones Support Group on the forum. Please stop by anytime. Press Here for the Support Group.
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I'm mom to............... Little Farm Girl 8 yr old
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Bladder and Bowel Dysfunction
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04-16-2014, 02:11 PM   #5
DanceMom
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Your son's story reminds me of my youngest daughter (almost 7). She has asthma and chronic sinusitis. Interestingly, the sinusitis is not always evident in the obvious ways. For her, we notice that she starts complaining of a tummy ache, vomits mucus, and has mucusy diarrhea. It was explained to me that she swallows the mucus, the stomach cannot digest it, and it causes GI issues like diarrhea and vomiting. She also had a dairy allergy (mild reaction on scratch test) which she has now outgrown after a year of strict avoidance. She is also on the small side - 7 next month, 39 lbs, and around 44 inches. If you don't get anywhere with GI you may want to try an ENT or Pulmonologist to see if your son's issues could be sinus or respiratory related.
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04-16-2014, 04:27 PM   #6
suspecttoddler
 
Join Date: Oct 2013
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I had them mail me the pathology reports and there were no numbers to speak of. I've gotten so tired of doing circles, I've started copying the blood work scripts (last one we did was 11 pages long from 2 different doctors and the results are spelt coming in now).

I've lurked through this board for some time now, and didn't really see anyone else's story that reminded me of my son's. He's still so small he can't tell me if he's in pain, and I don't deal with mucus, blood, etc. He deals with seasonal eczema, outdoor allergies and now asthma like symptoms. All of which I had severely as a child, but never anything gut related.

The doctors treat me as if I want the headaches to stop. I mean, yes it would be great to not spend 50$+ a month in rash ointments and remedies, and more on pull ups, but I'd rather fix the source, not the end casualties.

What questions helped you get closer to an answer? When these test results come back and (hopefully) eliminate the endocrinologist and food allergies, where should I press to go from there? And in the reverse, if it is a growth hormone related height problem, or a dietary allergy, aside from the obvious food avoidances/hgh injections, how do I get myself closer and more informed about what is going on with him. I feel like they (being gi... endo and allergy have been amazing and informative) just don't care in explaining anything.
04-16-2014, 04:30 PM   #7
suspecttoddler
 
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This is a photo of my son (2.5), nephew (almost 4), and daughter (5).


OK just kidding. It's not letting me from my phone.
04-16-2014, 07:39 PM   #8
Mehita
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I didn't see a fecal calprotectin listed in your labs. It's a stool sample in a cup that you drop off at the lab. Sound familiar at all? It can detect inflammation in the small intestine where scopes can't see... just a thought.
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04-16-2014, 08:30 PM   #9
suspecttoddler
 
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They did one on 10/09, which came back normal: 69.7 mcg/g
04-16-2014, 10:02 PM   #10
AZMOM
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Of course you belong here. You know your child better than anyone else. With us the signs were loud like a billboard - bleeding, pain, mouth sours, sky high labs, etc. I'm sure it is so hard when things aren't clear. Don't be afraid to keep asking questions and insisting.

The eosinophil count in his esophagus would be one of my questions if he had both upper and lower scopes. While my "healthy" kid's fecal calprotectin and colonoscopy were fine. He had tons of Eos in his esophagus and was eventually dx with eosiniphilic esophagitis (EoE) . He was never a good eater after about age two, very thin, frequent complaints of lower GI cramps and diarrhea. It all came to a head as a teenager. If your son was negative on all the scratch tests AND has esophageal inflammation, it's worth finding an allergist that can do the patch test for food. It's tiny disks that they tape in place for 3 days to give the skin longer exposure to the food. It's considered more accurate (per my GI anyway) when searching for a food "allergy". Our culprit was milk.... since eliminating it, not only is he eating eating eating (apparently it was difficult to swallow with the esophageal inflammation) but the diarrhea and abdominal pain is gone. Both return pretty quickly when he "cheats". He's figured it out though and avoids it like the plague. During the period of time he was so thin, he started wheezing with running and they stated he had asthma. He hasn't wheezed a single time since we resolved the EoE too.

Not to muddy the water but I just wanted to throw something else out there to think about. He could still have a food allergy causing the problem.

There are some good folks on here that will undoubtedly give you some things to think about.

J.
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Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
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Neurontin 100mg twice daily
Folic Acid
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-18-2014, 02:47 AM   #11
DustyKat
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Hi suspecttoddler and

I am so very sorry to hear about little fella, bless him.

My two were also much older when diagnosed so I am not much help there.

Just a few things though that you might considerÖ

- Document everything that is happening with your boy. My daughter went undiagnosed for 18 months and I found that as time went on the lines between what is normal and what became normal blurred, often they are the small things. Also it is easy to forget the details when seeing so many doctors or presenting to emergency but if you have a diary at the front door ready to grab, it can be a godsend. It also allows you track.

- Does your boy have any other problems, no matter how small or infrequent, that donít involve his gut? Things like rashes, sore eyes, joint pains, headaches, mouth ulcers.
The EIMís (Extra Intestinal Manifestations) of IBD can be present for months or even years before the evidence shows up in the gut and therefore in a scope.

- I know there has been colonic abnormality in the past and the fact that he responded so well to steroids, albeit as a secondary effect, is evidence that there was an inflammatory response taking place in his bowel. Also keep in mind that in young children the large bowel is the most common place for Crohnís to present itself so donít allow them to let it fall off the radar too soon. Until they can prove to you that it isnít IBD keep it in the mix.

- Is there any history of other auto immune diseases in your immediate or extended family?

- Are there any other bowel diseases in the family?

- This is the link to the diary inclusions in the wikiÖ http://www.crohnsforum.com/wiki/Diary-Inclusions

- When it comes to assessing pain use a non verbal chart like this even if you canít pinpoint its locationÖ



Good luck mum and welcome aboard.

Dusty. xxx
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04-18-2014, 11:14 AM   #12
suspecttoddler
 
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When I told both GI doctors about keeping a poo journal, both liked at me as if I had gone insane. Now that you mention it again, I think I'm going to start doing that. Aside from what he eats and when he goes, what else should I include?

The only different things I've noticed with him was a reaction to a vaccine which caused his leg to have a lump for about a month, when he was around 6 months old. He also has eczema, which presented early. My thoughts were because of the weather. My eczema spikes in winter months, and he was born going into the coolest part of the year (for Florida anyway). He'll break out on his legs usually, again thinking of how my eczema flared as a kid with playing in the grass outdoors. It's not severe by any means (I had quite a life treating my eczema as a kid, so I know his is minimal in comparison to how bad I personally know it can get). Anytime he gets a URI, I'm finding myself pulling out his nebulizer. This started the same time his eczema did, approx 3 months of age. The nebulizer had only been used 4 different times.

Aside from physical, he was delayed with speech to the point where I thought we were going to need to start therapy (want even saying 10 words at 15 months), but at 18 months, bam, he knew all his abcs, numbers, shapes and colors.

He stooled far less and far less destructively (diaper rash wise) when he breastfed. When I stopped, everything went chaotic. I've often considered investing in a pump and giving him my milk (currently nursing his 4 month old sister) to see if it helps him any. I had no dietary restrictions.

He has a healthy appetite. Almost too healthy. He can eat more than I can. A box of pasta between my two oldest and myself (my husband travels), for example, can be finished off with how much he eats. With how much he eats, I'm shocked he isn't fat, but I know it flies right through him.

There are no auto immune diseases that I know of, talking to family. And the only digestive diagnosis was recently by my husband's grandmother of esophageal spasms when she was under stress (she thought she was having a heart attack).
04-18-2014, 02:35 PM   #13
Jmrogers4
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My son is much older and was not diagnosed until 10. But he had eczema as a baby/small child, it went away and did not return until the crohn's diagnosis. It is now one of our major signs of Crohn's not being under control as when it appears shortly thereafter so do other symptoms.
I agree that you need to keep a journal. They may initially roll their eyes at you but when you can definitively show patterns and abnormalities, it oftens make them start digging to find out why.
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04-18-2014, 02:49 PM   #14
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If his weight and growth have plateaued you may want to see an endocrinologist. My son started losing weight and slipping on the growth curve. The Pediatrician started by ordering a sweat test for cystic fibrosis (can have GI symptoms). Once that came back normal we were sent to the Endocrinologist, it was his job to figure out why growth had slowed down and weight gain had stopped. He was very quickly able to identify the problem.

I hope you get some answers soon! ((((hugs)))))
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04-18-2014, 03:30 PM   #15
suspecttoddler
 
Join Date: Oct 2013
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The endocrinologist we saw a month ago referred is back to GI. All of the standard Labs he ordered have come back normal, save for a slightly low vitamin d level. His growth hormone tests, thyroid and phosphorus tests have come back normal. I'm waiting to see what the doctor concludes with the Labs, but his first reaction was malabsorption was the cause, rather than what GI claimed
04-18-2014, 05:01 PM   #16
Johnnysmom
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Sorry I must have missed that at the end of your first thread.

Our Endo found malabsorption (protein losing enteropathy) by checking his stool for protein.
04-18-2014, 10:16 PM   #17
suspecttoddler
 
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That's OK! I just received the results last night and today. There are still Labs and stool samples (4 kits, 8 total vials which I believe are retesting for bacteria/parasites again) pending.

Our pcp called me today with not so optimistic words. Basically, she thinks I'm getting the run around because they don't think he has any issues.

It's frustrating and I just want to cry. There's no reason for my son to be using the bathroom at times once a hour. I just want to throw my hands up and say you win, but I can't. I won't give up on my son.
04-19-2014, 07:15 AM   #18
DustyKat
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When I told both GI doctors about keeping a poo journal, both liked at me as if I had gone insane. Now that you mention it again, I think I'm going to start doing that. Aside from what he eats and when he goes, what else should I include?
I am not sure if you used the wiki link I gave suspecttoddler so I will list suggestions here:

Creating a diary can help you in a variety of ways. The following are some of the variables you may want to keep track of and share with your doctor.

PAIN
Where is it located.
What is it like - stabbing, ache, constant, intermittent, etc.
Rate your pain on a scale of 1-10, with 10 being the worst pain imaginable.*(see comment).
Was there anything you did that relieved the pain - medication, hot packs etc.
Was there anything you tried that didn't work.
Is there anything that the pain stops you from doing - standing up, walking, sitting, etc.

OTHER INTESTINAL SYMPTOMS
Is your stomach noisier than usual.
Are you producing gas.
Is the gas offensive.

STOOLS
How often do you go.
How much are you producing each time.
What does it look like.
What consistency is it.
Is it offensive smelling.
Is there any blood or mucous.
What colour is it.

DIET
Are you following a diet or have you eliminated any foods from your intake.
Are there any foods that make your symptoms worse.
What is your appetite like.
Does your appetite fluctuate.

WEIGHT
Are you losing, maintaining or gaining weight.

OTHER SYMPTOMS
Do you have other symptoms that accompany painful episodes or do you suffer with other symptoms generally, such as:
headaches
eye problems
joint aches
vomiting
fever
sweats
rashes
mouth ulcers

MEDICATIONS
What time did you take your prescription medications
Did you take any over the counter medicines, even for something unrelated to your IBD
Have you been taking any supplements
What is your impression of the effectiveness of the medications you take. Are they making a difference.

This may seem like a daunting list, but by updating the diary regularly it will only take a few moments each time. You will also find ways of abbreviating things to speed up the process, for example writing BM instead of bowel movement. There are also smartphone apps which can help to speed up the process, for example CDDiary available on iPhone/iPad.

Take the diary with you when you visit any health professional, not just your Gastroenterologist.
I would include anything out of the ordinary from the list above.

Dusty. xxx
04-19-2014, 07:37 AM   #19
AZMOM
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If it all comes back normal (the testing), I'd keep a journal like Dusty recommends. And Id consider doing an elimination diet to see if you can find an offending food.

If it's not IBD (and I hope it isn't!!), you have to find the diarrhea trigger.

J
04-19-2014, 08:24 AM   #20
DanceMom
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When you do a symptom journal I recommend making it more like a checklist/spreadsheet. That makes a great visual so the doctor can see exactly how much your son's quality of life is affected. In the past I've done anecdotal records but that isn't as easy to glance at and see patterns or trends. Elimination diets are relatively easy to do (we've done them more than once). I hope you are able to get answers quickly, but if not please know that you are not alone!
05-13-2014, 01:07 PM   #21
suspecttoddler
 
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Hello again.

We've been egg and dairy free (100%) for nearly a month. Sadly, right before our rechallenge, my son had an asthma-like attack, bronchospasms I'd what they're calling it. "Asthma but not asthma" and he's back on the prednisolone, which clears his stools and makes them normal. Which means that even though we've had no success at all during this month, we have to continue the diet through until the end of the month for egg and another month until dairy. Even though we had just seen the allergist who said because there has been no improvement he was ruling out food allergies and sending us back to GI.

I went this time armed with food journal and photos. Thank you dancemom with the spreadsheet idea. u Found that worked much easier for me.

But now allergy refuses to see him unless we are referred by the pediatrician because the asthma attack ordeal had nothing to do with the allergy we're currently seeing him for. They won't even diagnose him with asthma at this point, they're saying. The pediatrician wants to put him on flovent as a precaution. I had bad asthma as a child, so I was familiar with the medicating, but asked what it was exactly. She said it was also an oral anti inflammatory medicine but wasn't sure if it would react in his body in the same was the prednisolone does.

As much as I want him to not have another attack and wind me in the er with him (happy mothers day to me, sigh), I don't want to give him a med that fixes him without knowing why. I feel like I'm in a rock and a hard place waiting for the specialists to get back to me and see where the heck we're supposed to go now, if flovent waits until the rechallenge diets are through, or if I am stuck being in elimination diets for what seems like forever.

I am so sorry to those of you with diagnosed food allergies. This last month has been tough. I've got until June 27th (the day before my birthday) to deal with diet regulations for food allergies he's proved aren't the cause, but we have to do it "by the books" to avoid doing it again.
05-13-2014, 01:14 PM   #22
DanceMom
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Elimination diets suck. They really do. We've done them more than once and unfortunately her symptoms never cleared so we never got any answers.

Flovent is a maintenance med for asthma. It was the first one my daughter tried but just wasn't strong enough for her. From our experience, most docs won't diagnose asthma until a child is old enough to do pulmonary function tests (usually around age 5-6).
05-13-2014, 04:43 PM   #23
my little penguin
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DS was dx with asthma at age 2. He started Flovent then.
Flovent is an inhaled corticosteroid . It does not affect the whole system only the lungs.
It won't fix the gut or inflammation anywhere else but the lungs .
DS 's allergist treats his asthma .
But if the kiddo does not have asthma then a pulmo generally handles asthma not the ped .
I would try to get into a pulmo since under treated asthma can be dangerous .

Do you have to have a referral ?
I would try to get in with another doc .
Good luck
Check out aaaai info

http://www.aaaai.org/conditions-and-...ic-Asthma.aspx
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05-13-2014, 05:12 PM   #24
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I'm sorry to hear about the ongoing asthma.
My Grace has"asthma without the asthma". So frustrating to deal with but she is finally on a good combo of singular and Qvar(sp?). She gotten through this spring with little asthma but I know it can flare up at anytime.

Both my kids have food allergies, between them both is no corn, milk, wheat, fish, seafood, eggs, pork, beef, soy and my son has been put on a low acid diet so..........no tomatoes, chocolate and oranges. Oh my son has ANA to tree nuts.
Still it's amazing that theirs food for them to eat.

Push for answers. My Grace has been through way to much because doctors didn't listen. I wish I had pushed harder.

Hugs
05-14-2014, 01:39 PM   #25
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I'm not sure I belong here, but I'd like to share with you everything in my journey thus far- which has quite frankly gotten me no where.

My son is 2 1/2 years old (30 months). Since he was younger, I noticed his stools would never solidify. He breastfed exclusively until about 6 months, where he skipped baby food and went straight to easy table foods (not for lack of trying on our part). He wasn't able to tolerate milk at 1 year (around his anus would bleed), and his stools remained similar to those of a newborn starting on solid foods. I was told to try milk again at 15 months, then again at 18 months. When the 18 month mark hit, and still no improvement with dairy, they told us to try lactaid. Lactaid didn't help, so I tried almond milk and finally found a substitute for how often he was breastfeeding. I was also pregnant, and did not want to tandem feed with how rough and tumble I knew my son was during nursing times (completely different than my oldest daughter was). He stopped growing when I weaned him (starting at 15m, completely at 20 months old), both height and weight. I think he's gained an inch and maybe 2lbs (dropping him under the 3% for height and under 25% for weight when he was in the high 75+ range). He simply plateaued.

He has bowel movements up to 10 times a day, and they are typically right after he eats. Almost every stool has undigested food particles from the previous meal and/or snack. They are always green/yellow in color- never a normal looking stool. I've explained it as yogurt, chunky mashed potatoes, peanut butter. We've never had issues with reflux, constipation or blood (save for diaper rashes, but nothing internal). They've told me that there is no issue with him, that he would outgrow this "diarrhea" phase. I kept insisting his stools had never been normal, save for maybe 10, and all at random times. We went through elimination diets at home, save for gluten, and nothing seemed to help. He was suffering from diaper rashes, yeast infections, and eventually diaper burns. He was stooling so frequently, that the medicine wasn't able to even help him before the next stool would come. Thankfully I found a product called Calmoseptine helped his skin to heal and keep him with a sufficient barrier.

Finally, I became fed up with my pediatrician (well, specifically, a different doctor at our practice) and sent in for an allergist appointment. We had a scratch test done, which I was told it wasn't a food allergy but a gastro issue. I called the local children's hospital network and scheduled an appointment. Some time after the appointment was set, I received a nasty phone call telling me my son was normal, and she had "3 kids of her own and could vouch that nothing was wrong with my son" and shame on me for not following proper referral procedures.

Here is everything we've been through, test wise:

9/26/13
Stool samples (salmonella/shigella, campylobacter, yersinia, e coli shiga, giardia, cryptosporidium) - Normal
CMP - Normal
ESR - 26 (flagged high)
CBC - Abs Neut: 9392 (flagged high), Abs Mono: 1042 (flagged high)
CRP - 1.08 (flagged high)
Celiac Panel - Normal

10/09/13
ESR - 17 (flagged)
CRP - Normal
Thyroid Stimulating Hormone, Free T4 Assay, Stool Reducing Substances, Calprotectin - Normal

10/28/13
Scopes appeared normal
Biopsies: Duodenum, Stomach, Esophagus Distal, Esophagus Proximal, Terminal Ileum show no diagnostic abnormality
Colon, Random Biopsies: Colonic type mucosa showing patchy mild eosinophilia with reactive changes, nonspecific.

3/17/14
ER visit for breathing issues, diagnosed as acute asthma attack and prescribed prednisolone, albuterol in both inhaler/nebulizer forms. A few days into the treatment with prednisolone (we already have had to use albuterol with him), his stools went completely normal. He was going once a day, and they looked like normal stool and not soft serve with food chunks. This lasted approx 4 days after prednisolone stopped.

4/14/14
CBC - Abs Lymph: 3844 (flagged low), Abs Mono: 1277 (flagged high), Abs Eos: 818 (flagged high)
Urinalysis, Phosphorus Assay - Normal
There are 4 stool samples pending, as well as a few blood tests by GI and Endo

We are currently starting a milk/egg free elimination diet by the children's hospital allergist. Although the first allergist said he was not reactive to any of the scratch test, the children's doctor decided that even the smallest reaction was cause to eliminate from his diet completely, but said he did not think his issues were food allergy related, but gastro in nature.

Along with this, we are waiting for the growth hormone tests to come back, as GI also said my son's height issues (32.5" at 30months) was an endocrine issue, not GI. Endo says its not endocrine, but GI. I have all doctors pointing me towards GI, and GI sending me on wild goose chases with other specialists, to essentially weigh them out (and costing us a butt load of money, might I add!)

Do I belong here? No one can tell me anything. I'm running in circles, trying to help my son. I don't know what else to do, where else to go. I just know that for over half of my son's life, I've gotten excuse after excuse for his stool. I want answers, and help. If I don't belong here, where else can a mom go?
I am so sorry your poor little guy (and you) is having these issues. Your son has many symptoms that mine did. My son was diagnosed with CD at 2 years and 10 months. He too had many skin issues starting as a newborn with eczema. He has never had a not red bottom, if he didn't have a yeast infection he had eczema or a rash on his bottom. I still have to calm myself when he hasn't gone poop that once a day is alright.

You are right in pushing the issues with the doctor because he is your baby and you know your baby more than ANYONE else. My son was extrememly ill and it seemed I couldn't get any doctor to realize the urgency of it. After 3 months we bluntly asked our doctor to PLEASE send us ANYWHERE and "how long can he go on like this before he dies!" (at this point he had lost 10 lbs, wasn't eating, throwing up ect. ect.) That very day they made an appointment with a pediatric specialist of infectious diseases who took one look at our son and admitted him in the hospital.....a few days later we had our dx.

I hope the right doctor comes your way to make the right decisions for your family. I would keep on pushing until you are comfortable with the outcome.
__________________
~Crohn's
~Son Dx March, 2014 @
2 years 10 months old
~currently on Humira, Imuran, Allopurinol, Lansoprazole, Zinc
~previously on Remicade infusions every 8 weeks
05-18-2014, 01:12 PM   #26
Imerald
 
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Join Date: Jan 2014
Location: Sanford, Florida

My Support Groups:
I'm sorry you're having such a rough time! My Ella will be 3 in July and and we're on our third set of doctors since she first started having issues when she was 3 weeks old. It sucks to know something is wrong with your baby and not know how to fix it.

You've received a ton of great advice so far and the only thing I can add is to stick with your gut and seek second, third, and fourth opinions. Finding a doc who is willing to listen to you and understand you is key in managing the illness. I feel so much better with our current doctor. It's such a relief.

My Ella had bloody stools, but also was EBF until she was 25 months, never ate baby food and didn't even really start table food until 15-18 months. She would gag otherwise. She also has a milk and egg allergy (unconfirmed by any testing, but has reactions to both).

Her labs are relatively normal, but is 5% for weight and 25% for height (was 75% in both until almost 4 months then started dropping slowly). Her lower scope showed inflammation and bleeding and but no eosinophils in the biopsies. So that is where her UC diagnosis comes from. She also had eczema and cradle cap up until she started taking her medications for UC in December. We also have tried elimination diets and while her symptoms are less, they never went away completely.

I hope you get some answers soon. Feel free to message me as well. Hugs!!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
05-20-2014, 07:22 AM   #27
Bareket
 
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Join Date: May 2014
Location: Englewood, New Jersey
Hi Suspect- Has your son had the Celiac blood test? I apologize if you listed it and I missed it. I have 3 nieces/nephews with Celiac disease. Many of the symptoms are the same as Crohn's. It is an easy blood test to take and I think is pretty accurate.
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