New. My little girl needs help.

[Farmwife]

Hello. I can't tell you how happy I am to find this site. In order to tell every one about my wonderful 3 yr. old girl named Grace. I have to start the looonnnnggg story at the beginning. So please bare with me and my bad spelling. Between 6-12mo. old Grace was still spitting up huge an amount. She started having gas or abdomin. pains and stomach pains. Still to this day when the pains hit, she balls up and cries. This happened mostly at night but sometimes during the day.They last anywhere from min. to an hour. I have to give her meds. Her pains can be together or one at a time. The Doctor said try taking her off milk. We did. Still not better. Then at 1 1/2yr. old her knee and pee pee pain started. We took her off of corn, choc., wheat, refined sugar. Every thing worth living.lol For two years (honestly) we did not sleep solid through the night. 9 mo. ago I told the doctor I want to know what's going on with her. It's been to long!!! He took urine and blood. Blood work came back "off" and urine came back with trace amounts of blood in it. To the ultra-sound we went. Ultra-sound came back normal. My Doc sends up to a new spec. Doc.. He takes more blood and urine and all came back normal. The spec. doc. say no more he can do. However. He put her on stomach meds. Bummer! Still no answers. The stomach pains stop but the abdmon., knee and pee pee pains get worse. Now she stops eating. Just queit. Sleeps a lot. I go back and say still not right. He say GET HER OFF THE STOMACH MEDS NOW. She needs the acid in her stomach to help break down her food.
He took a stool sample. To his SHOCK she has c. diff. The doctor was hoping this was the causing of her pain. 2 rounds of Flagly and the c. diff is gone. As you might have guessed the pains has been having for two plus years isn't. She is still in pain. I will say she doesn't seem to be as "bad" as some of the others. She still has more good days then bad days.
OK info on her meds. We started out with baby gas drops but they stopped working. Then on to child. gas-x, then to adult gas-x, then to super strength gas-x and now kids ibuprofen. This has all been done to help stop her pains.
One thing I will add. Her pooping has never been to much of an issue. We will be going to see a G I Spec. in June or July we hope. I'll find out soon. I'm not sure if it's Crohn's but I would like to know what any one of you think about this. Sorry if I left out any info you need. To much to write.
Thank you, Farmwife and Grace's Mom

 

[DustyKat]

Hi Farmwife and :welcome:

I am so sorry to hear about your little girl...:hug:

It is so difficult and heartbreaking when our babies are undiagnosed and suffering. Just be aware that with someone already suffering with GI problems that Ibuprofen can cause additional issues.

With the bloods do you know if they have done inflammatory markers (CRP/ESR)?

Have they done a stool sample done that is called faecal calprotectin (measures inflammation in the bowel)?

What is Grace's weight, is she losing?

Even without a diagnosis perhaps you could discuss Enternal Nutrition with the docs. It will at least provide adequate nutrition and rest the bowel, if it does alleviate some of her symptoms it may help point the fact that her GI Tract is compromised in some way.

Do you track her symptoms? If not please have a look at the diary suggestions we have here. It is so easy to forget the little things when you are living this day in and day out plus it gives you more evidence to present to doctors.

Pooping and obvious bleeding aren't issues for everyone with Crohn's and I personally think that the higher up you go the less likely these things are to happen.

I hope you can get a GI appointment sooner rather than later, you need answers hun and no doubt you are at the end of your tether by now!

Good luck hun and welcome aboard!

Dusty. xxx

PS. Moved you to your own thread.

 

[happy]

Farmwife,
Good advice from DustyKat--Enteral Nutrition is discussed in the Treatment section of the forum. The link should highlight now so you can just click on it.
Good luck! :goodluck:

 

[Lilmamma]

:welcome:

 

[Sascot]

Hi, welcome to the site. Such a shame your little one has been suffering for so long! I hope the GI appointment gets you some answers and treatment. Definately worth asking about the EN so that her bowel, etc can have a rest and maybe start healing.

 

[Farmwife]

Thank you to every one!
It's nice to know your not alone or crazy. Let me start by anserwing DustyKat's questions. She is OFF ibuprofen. My doctor's nurse gave me a natural remedy. Honey and vinigar. I almost didn't make it thinking this was a joke. It worked. YA Even on me.
I have to give her way more then the nurse said but it's natural.
As for the blood work I don't know. Sad to say but I never thought we would be here. Tomorrow she will be having blood taken. I don't know about stool. I would think so. I will from now on be asking for the reports.
Grace 2 mo. ago went though a bad streach. She weighed 36 1/2 and within two weeks was down to 30lbs. I know that does not seem to be much but for a 3 yr. old it is. She is back up to 35lbs and staying around there.
Now some more questions for you all.
Grace is ONLY 3. Do others have kids with crohn's that young?
What is their outlook health wise? Will it be worse for them since they got it so young?
I'm still puzzled as is our doctor on why she gets knee pains? They come out of no where. She can't even walk. By the way, she can point to her left knee and show me where it is . Any thoughts form anyone?
Has anyone else dealt with c. diff and crohn's?
Sorry for all the Q's. I'm just the kind that hopes for the best but prepare for the worst! It's better then being surprised.
Thanks again, Farmwife

 

[AZMOM]

Hi - I'm going to try to give you a couple of short answers.

Yes, kids as young as three are diagnosed.

It's not necessarily "worse" since they are young but it is critical to get the disease under control so that it has minimal impact on growth and development.

Arthritis is typical with Crohn's. Do you have a Pediatric Rheumatologist available where you are seeing the GI? If so, I'd recommend a consult. There is Crohn's related arthritis and other types as well. Just like you want to protect the GI tract, the same goes for the joints.

And yes, I have dealt with C Diff and Crohn's. C Diff can be cured with antibiotics but you have to be patient. For us, it was 30 days on Flagyl and we used a probiotic called Florastor along with it. This happened just before she was diagnosed.

Thinking of you all.....read read read and ask lots of questions. You ARE your child's best advocate.

Hugs,

J.

 

[Farmwife]

Thank you J. My husband and I are very thankful for the advise. Tomorrow we meeting with the infectious disease specialist for the c. diff. Her 2nd rounds of Flagly worked but our doctor still wants us to go. Just in case it comes back we will have a spec. on the case.

Farmwife

 

[DustyKat]

J is right hun...

There are children diagnosed at that age and younger. It is difficult to say if their journey will be more difficult but a question that I think we all ask ourselves. Heck, I was asking that and my daughter was diagnosed at 14! It would be very much dependent on response to treatment I think.

Joint pain and/or arthritis are an Extra Intestinal Manifestation (EIM) of IBD. In the case of my daughter it was knee pain alone and it paralleled the disease, so once in remission it resolved.

No experience with C.Diff and Crohn's here.

Keep asking away!

Dusty. xxx

 

[tots]

Farmwife-
I can remember being about that age and my parents taking me to the Dr. or the emergency in the middle of the night. We now know it was Crohns. I was diagnosed at 28- I am now 48. I had two kids before I was diagnosed and one after. I did well, with just minor symptoms during that time. Crohns disease can cause joint pain.

Good luck and remember she has a bright future ahead of her! And you will help her get there!

Lauren
:ghug:

 

[AZMOM]

Hey just one more thing, I know you said she's off ibuprofen. Definitely do not give her ANY ibuprofen, alleve (aka naproxen) or any other NSAID (non steroidal anti inflammatory) until you sort all this out. NSAIDs are a direct irritant of the GI tract and a big no no for anyone with GI issues.

Thinking of you all.

J.

 

[Farmwife]

Well Grace had her visit today. He said the c. diff doesn't seem to be at a level of concern for NOW. YAAA! He however, doesn't think this is the cause of her problems. My husband asked about crohn's but he said she didn't have what you would look for in her blood work. I'm soooo confused. I'm so down. He ( doctor) did think it was a good, good, good idea that she gets to a ped. GI soon. Ofcorse, he never said why! Plus, to top the day off Grace woke up late. She is a farm girl through and through. She wakes so early in the morning she tells the sun to get up. lol I've notice when she is that tired we're in for a ruff day or weeks.
A big thank you to DustyKat, my husband as we speak is getting me a journal to keep track of her symptoms.

 

[izzi'smom]

You have gotten some wonderful advice; just wanted to say hello and I am sorry for your troubles!
It may be that your ped is unsure what is wrong with her...which is why he is referring you.
My daughter was symptomatic at three but diagnosed at four.
Hoping you get the answers that you need soon!

 

[polly13]

Hi and welcome and I hope you figure out what is going on soon with Grace. My daughter lucy started displaying symptoms (very non specific) at 9 months and was diagnosed at 2 - she is now 3. The blood work is not always specific as in lucy's case did not indicate chrons, however once we saw the paed GI he diagnosed her straight away an confirmed with colonscopy and biopsy. I imagine from what you are saying that your doc doesnt really know whats going on and hence the referral. Once they figure out whats going on and if she does have chrons they will start treatment imeadiately. Other than her chrons lucy is actually quite healthy so I think once the disease is under control the kids can just go on as normal.

Good luck and come back and let us know how you are doing.,
Polly

 

[QueenGothel]

Hi Farmwife, welcome to the forum. It is a great place, I have been on here since day one of my DDs (Rowan) diagnosis and have made some great friends from NY to Aulstralia. Crazy cool people. They have laughed and cried with me while at the hospital, on my way to the hospital, and after the dust settled. (my dust has been settled for a week) My DD was diagnosed at 3 years old with UC. My example is extreme I think (IzzisMom too) my DD was never controlled with any medication. With my DD it was always expect the unexpected. NSAIDs are bad as stated above. Crazy just before Rowan was diagnosed I just started giving her children's Advil... It was new on the market and had a buy 2 for 1 deal. Guess I didn't get the deal I was searching for. She got horrible fevers, joint pain and a rash. I thought it was 5ths disease, boy was I wrong. Her ped had me giving her round the clock doses. Next thing I knew she was bleeding from the bottom. I would make that appointment ASAP it is hard to get into a pediatric GI where I am from. I had to take my DD into ER, and be admitted to get my appointment in a timely manner, otherwise it was a 2 month waiting list. Unfortunately she had to be bleeding majorly from her rectum to get admitted. My point, make that appointment and get put on the cancelations list ASAP.

I hope Gace is feeling better soon.

Never to early to start practicing with pills. Use m&ms. (I did it, i wrote a thread on it) Some treatments are only available in pill form bc they don't breakdown until they get in the intestines. It might give you more medication options. I hope she doesn't have IBD and it is something that can be fixed/remedied with a medication or procedure/operation. My best to you and your little girl.

PS. Tylenol works great