My 2 y/o story

[sparky6]

Hello All,

I am a mother of a 2 1/2 y/o little girl. Our story begins last summer, when Payten began having diarrhea. After several weeks of this, she developed a UTI. We took her to the DR and it was treated. The DR said she should start getting better. In November the diarrhea continued, so back to the DR again. Over the next 2 months, we had multiple test. All that showed was a low TSH level and a high T4 level. All her stool samples we neg. for infection. We were then sent to a endrocrinologist in Dallas, where they told us her Thyroid was fine, but she needed to see a gastroenterologist. After seeing him in Dallas, he wanted to test her for Ceilic Disease. Payten had a EGD with biopsy last week. I just got the results Wednesday and they were all fine. He know has her on a strict diet, to eliminate allergy. However, we have cut out dairy, soy, and sugars. She still has the diarrhea. She has not had a formed stool since last summer. Now she will go from constipated for several days to a week, then here comes the diarrhea. She is only well for a couple weeks at a time, then the diarrhea, fatigue, stomach cramps, and sometimes multiple resp. infections. The DR said if she is not better by the 21st of April this Month, he is going to do a colonoscpoy. I love our DR, and he is great. He said that the chances if it being Crohn's is small, because it is rare in children at this age. I am LOST.. What if everything keeps coming back normal.. I know that something is wrong. I am a nurse, and I know that her symptoms are not normal. Her bowel movements along with her gas, smells like skunks... It is awful. She will be 3 in August, and we can not even get her potty trained due to the bowel problems. Alot of the time she is a normal, load, and energetic 2 y/o, but then periods of sickness, each lasting around 2 weeks at a time. Again, she is always sick part of the month, then great the other. We have changed diets, and went through rounds of ABX treatments, and nothing has helped. She also has perodic pasty stools with pus. Also, she has been given medication twice for Herpes Simplex A (Ulcers in the mouth).. Payten went from 32 in November, to 26 lbs in December, then now is staying around 29 lbs. She looks real healthy, but sick all the time.... It's just never normal. Need help, support, and adivce.. Thanks a bunch, Stormy

 

[mommytocrohn'steen]

I am so sorry for your pain. As a nurse, you know the C DIFF smell, this isn't it?!! I went thru the same thing with my son before his diagnosis. I would know the SECOND I opened my front door that he was sick. I hope she gets the proper tests, so you can ease her suffering. There is nothing worse than not knowing. I am very new to this, but there is tons of help here!!

 

[sparky6]

Yeah, that C-Diff is awful.. No, all the stool test came back Negative, along with the EGD and biopsy. She is currently on ABX treatment and has a follow up in 2 weeks. If the ABX does not help, then they are doing the colonoscopy. This is her 3rd round of ABX, and nothing has helped. We also took away the things that cause irratation (dairy,soy,juice,sugars), and none have made a defference. Unsure where to go next, if all come back normal. This has been going on almost a year. No form stools since last summer. thank you for you response. I am at a loss...

 

[mommytocrohn'steen]

We were lucky, colonoscopy, endoscopy day after gi appt, upper gi 2 days later, with a confirmed diagnosis. I feel so bad when I hear of so much back & forth. I hope your scope is defined!!!!

 

[sparky6]

Thank you.. The EGD (upper) was fine and biopsy was good. Its just the not knowinjg...

 

[Dexky]

Welcome Stormy!! It may be rare for chrons to show up so young but it isn't unheard of. If she does have to have the c-scope, I hope you get the answers you need to help her. Those mouth ulcers are an all too common theme with chrons it seems!!

 

[AZMOM]

Well Stormy, we're glad you're here. Everyone who knows me has heard me say, "I can handle it if I can just get a diagnosis and a plan....." That back and forth is brutal! We'll be thinking of you and all hoping for the best.

Keep us posted!!

Hugs,

 

[troydanielbecker]

Yes, rare, but it happens. Payten and Isaac are 3 months apart. You can read all the details you want on our blog. In Isaac's case he never had formed stool until after his diarrhea got bloody and mucousy and we changed up the diet to the elimination diet.

Did you also try eliminating gluten even though the celiac results were fine? Also all animal proteins?

About help and support, I think you can find what you need here, but I also like to recommend starting a blog about your experience, or otherwise journaling. Networking with people who share your experience is invaluable.

 

[KaLa]

Has she had antibiotics for ear infections or anything else? It may be helpful to check with your doctor and see if there are any probiotics that are safe for children. It may make a difference for her.

 

[sparky6]

Troy (I read your blog) and your son is so adorable. I am so sorry for all that y'all have been through, as well as everyone else on this site. I hope and wish the best for your all!!!! What upsets me the most, is that I question my own instincts and I allow people to make me feel like I am over reacting. I am a nurse and all the time tell people if you know something is not right, then you are to fight until you get answers. However, I can't seem to apply that to myself. I know something is wrong, but each test we do, it comes back okay. I have even starting logging all food, taking pictures of each and every bowel movement, and now my husbands thinks I may be going overboard.. (LOL).. Anyway, I appreciate all your advice and comments.. As for other things we have tried, we have tried removing gluten, dairy, soy, sugars, even some proteins (d/t stool ph levels being to low), however nothing seems to make a difference. The pediatrician has given her 1 ABX for ear infections as well as for UTI, d/t the diarrhea. We are unable to potty train, because she has been cath several times, because Urinary problems, so she wont even try to potty train, which causes her to keep getting UTI's. She also has been treated for Herpes Simplex A, but they don't think it was related to the GI problems, but I'm second guessing that now. After all the diet changes the only thing it changed was know she may have a pasty thick stool, followed by constipation, then the diarrhea hits again. The DR wanted her to start NeoCate formula with probiotics, however this is formula. I spent 40.00 for a can of it, and my 2 y/o threw it at me LOL.. She has not drank formula since she was 1. So that was not going to happen.. Anyway, thanks again for the advice and the stories are so inspiring and heartfelt on here. This is a wonderful site... Thanks again... Stormy

 

[DustyKat]

Hi Stormy and :welcome:

I'm so sorry to hear about your little girl.......

You are certainly on the right track with logging things, we have a diary in the wiki that has possible inclusions that you might like to also include in your log......

http://www.crohnsforum.com/wiki/Diary-Inclusions

I understand about normal tests as my daughter, although much older than yours at the time, always had normal test results when she was in a very active undiagnosed flare.

You may find these extracts interesting, they are taken from the IBD unit page of Sydney Children's Hospital. {http://www.sch.edu.au/departments/crohns_colitis/}

As well as becoming more frequent, IBD is now occurring more commonly in younger children.
The most common ages for IBD to begin are in the second and third decades. In children, adolescence is the most common time when the symptoms of IBD can begin. However, IBD can begin at any age.

None of these tests will be altered in all people with IBD. Commonly in children with Crohn's, there may be a low blood count, low iron, low albumin, high platelet count, high ESR and high CRP. Other people can have just one or two changes present. However, for some children all these tests will be normal even when their IBD is active.

I know it's hard at times to practice what you preach when you feel you don't have the hard evidence to back you up but your gut feeling as a Mum beats hard evidence any day! I'm a nurse too and I know you can easily start second guessing yourself......am I reading too much into this, am I over thinking things, am I seeing things that aren't there and on it goes. YIKES!!!

I hope you get some firm answers soon for little one stormy, she's a real cutie! Good luck, keep us posted and welcome aboard hun.

All the best, :hug:
Dusty. xxx

 

[troydanielbecker]

Stormy, we found some (cheaper) probiotics in capsule form where you can empty the contents of the capsule into drinks for tots. Also you might find powder form made specifically for that. I mean, it's still not cheap, but the $20 or $40 gets stretched out over weeks or months instead of all at once...

But without seeing any changes.... I mean, sometimes I guess it would take time to see differences, but I can understand your urgency about getting some good diagnoses and getting on a good course of action to make a positive difference.... God speed with that!

About potty training, again, as soon as Payten experiences some reliable regularity and comfortable bowel moving, she'll probably get right in the groove. That's how it was with Isaac. Maybe i/o scheduling and/or cloth diapers and all the other advice you've probably already received can help on that front.... but maybe it's just going to wait until we can get her bowels on the road to optimum health!

 

[robertsmorcom]

Hey, I have a 2 1/2 year old son who has exact symptoms only difference his have been since day he was born! he has had colonoscopy & endoscopy both came back normal that was 2 months ago and he has been admitted to hospital on two occassions since, we are now awaiting cystic fibrosis test, putting him on wheat free diet and having more intensive test for meckels diverticulum on his stools....god I know how you feel about it being a long road and seeing them in pain
sorry I cant give you any answers or advice apart from I feel for you all

 

[mommytocrohn'steen]

Now that I am reading further stories of little ones with issues, I am wondering if my sons history has anything to do with his crohns. When he was newborn he had gooey mucous diapers alternating with bloody stools. He had a colonoscopy, it revealed allergy to milk, soy, and protein hydrosolates. He was put on amino acid formula, and was fine FOR 11 YEARS.........

 

[troydanielbecker]

kathy, was your son on the amino acid formula just for the usual time for feeding formula? and then everything was normal until he was 12?

There is a link between allergies and IBD, as both have to do with our immune response. But to what extent, and in which cases, it is still not known. I am reading more these days about Th2 cytokines and probably we should start a new thread about it sometime soon.

 

[FLMom]

An allergy and IBD thread would be great...my kids are walking allergies. I know there's some connection, but I'd be curious to see how many members have severe food allergies.
Carol

 

[mommytocrohn'steen]

Troy,
He was on NEOCATE. it was not available in ourvarea, and the first can was put on a helicopter from children s hospital of Philadelphia, until the Pharmacy could get it in. After that it came ups by the case. 2 yrs later my daughter was on the same, but without the testing, symptoms were enough.

 

[Crohn's Mom]

Now that I am reading further stories of little ones with issues, I am wondering if my sons history has anything to do with his crohns. When he was newborn he had gooey mucous diapers alternating with bloody stools. He had a colonoscopy, it revealed allergy to milk, soy, and protein hydrosolates. He was put on amino acid formula, and was fine FOR 11 YEARS.........

My middle son (now 16) had this problem as well! He had to go on Alimentum formula (sp?) until he was a little over a year old. That stuff has the worst smell! And of course..he projectile vomited so extra fun! HA! He had 2 colonoscopies by 4 months old and was on prednisone for around 6-8 months of his first year and half of life. His diagnosis was allergic colitis. Even though he seems perfectly healthy to me, he's just under 6ft tall, rather skinny, but very athletic and eats like a horse....I don't think I'll ever stop watching him like a hawk (just in case)!
I definitely believe there is a link between food allergies and IBD. Gab was allergy tested years a go and had a large reaction to corn; and a small reaction to several other foods. She thinks she has "outgrown" the corn allergy....Mom/Me...not so much! I think the affects of the corn products are just no longer visible on the skin....but I truly believe it largely contributed to her disease process and the damage.

 

[sparky6]

UPDATE!! We went back to the pediatric Specialist in dallas today (DR. Argao, who is the best DR I have ever seen), and he said that Payten has alot of mucus in her stool and is now going to do the colonoscopy. We are scheduled for next Thursday.. I donot want anything to be wrong, but I sure hope they find out what is wrong with her, so we can stop wondering (it's been a year of tests, meds, and food elliminations).. I will keep y'all informed and thanks for all the thoughts and prayers. It gives me joy to read all the post as well.

 

[Dexky]

Thanks for the update Stormy! Hoping and praying for the best for her next Thursday!! Like you say, you've got to have answers! Good luck!!

 

[DustyKat]

Oh boy sparky, we know about the wanting to know but not wanting to all at the same time! :eek2:

Good luck with the test and I hope it gives you the answers you need so Payten can start on the road to recovery! Fingers and everything else crossed!

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxx

 

[Saphira]

Goodluck on Thursday. I hope you get answers. Brandon's problems started at birth too. I was breast feeding and tried to cut everything out of my diet. Then we tried soy. At 2 years old he vomited every day this lasted about 12 months, They told me it was behavioral. We finally had a Ph probe and confirmed reflux and then food allergy testing. Large reaction to eggs, and small reaction to corn. they said he would grow out of it. Diagnosed with Crohns by one Doc in 2007. The undiagnosed by new Doc in 2010, who said yes to IBD but couldn't confirm crohns. It's been going on for 9 years now and we still don't have a proper diagnosis.

Trina
Mom of Brandon, who enjoys the sleepless nights playing games with her son due to the prednisone.
Wishing he could spend more than 50% of the time in school....