My 9 year old Undiagnosed

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Joined
Aug 9, 2011
Messages
51
Location
Lake Jackson, TX
my 9 year old Undiagnosed

Hi everyone, wanted to thank everyone for sharing all your experiences. I must admit some of them scare the hell out of me, I really hope the Endoscopic and Colonoscopy finds nothing well, something because my sweet girl has been sick for awhile now. I want to know what so we can help her be normal as possible.
Her name is Savannah snd she feels bad everyday. Savannah has battled constipation since she was 6 and we just figured until December 2010 that it was caused by her poor apetite and what little she did eat. So, her pedi has had her on Myralax as needed for 3 years. This past December she got were she couldn't move her bowels even with the Myralax daily X2. When she was successful it was just little thin pieces that she would pass some days spending hours in the bathroom. By the end of December she was not eating hardly anything, she wanted to and tried but she would take a bite and it would make her sick. So this brought us to our local ER, they took xrays said she was pretty full but no obstruction. They gave her a suppository and it did nothing but add to her discomfort and make her feel like she needs to move her bowels but still couldn't. By this time anyways she always had the pressure of needing to go. Well, nothing happened so he wrote another script for Myralax and a suppostitory and told me to give it to her daily for 3 days. We did nothing happended. So, two weeks later we are still in the same boat, my child is sick waking up in the middle of the night in pain, missing school, not eating, and her bottom hurts. So, we take her to Texas Children's in Houston. We get there she has a fever of 101. They try an enima it also does nothing but make her uncomfortable. They end up admitting her and giving her Golytely thru a NG tube, after a couple of hours she starts moving stuff! YAY!!!! I am thinking we are about past this we can all get back to our normal lives. It took her till mid Februaury to start eating again but for the most part all is good.....Until the end of May, and her symptoms start returnig slowly. Now her pedi says I think she has Crohn's but don't worry my daughter has it and she is 50. Like that he trys to comfort me imediately.
Now we have a Pedi GI at Texas Children's. We went for Savannah's first appointment 2 weeks ago. The doctor stayed with us for an hour asking questions and going over medical history and of course examing Savannah. He orders a Sitzmarks test and a series of 4 xrays to check motility and stool samples. I have to admit I am a little disappointed by this because I want a colonoscopy!!!!! He said well, we aren't there yet, and there are risk involved, with the procedure and sedation. Savannah is severly malnourised and at this time its just not worth the risk. We need to work on her weight and get her healtier first. Ok.... I don't want to put my daughter at risk we will wait.
We do the series of xrays and the stool samples.. the Dr calls us back this past Friday and the motility test come back ok but the stool samples have microscopic blood, looks like we need to get her in here and get a endoscopic (upper gi tract, I believe is what he called it) and a colonoscopy. Her blood work was normal but he said some people with Crohns don't show up in blood. That flip from its not safe to we need to scares me plus he said Crohn's also.
Back in January the first really bad episode her blood work was normal except for a high absolute lymphocyte count.
Besides the symptoms mentioned above her typical body temperature is 96 before all this started she was 98.6, she stays cold her hands and feet are freezing.
Weakness
slime on her poo
mouth ulcers
leg and hip pain (always thought this was growing pains)
the stomach pain is most often just below her navel
low grade fevers
her weight has been between 50-55lbs for the last year
night sweats

Savannah knows there is something not right with her, she will ask me why I can't be normal or why can't I be like you? (not sick) why am I always so tired?
We have a pool and she loves to swim but doesn't even ask anymore cuz she feels so bad all the time.
When we go growing shopping I always take her so she can pick out her own foods hoping she will find something she can eat. With constipation being an issue most of the time she looks for fiber rich foods... cereal, granola bars

I just am hoping time will start moving again and we can get to the 25th the day endo and colonoscopy. How do you past the time between tests and results?
Ps. I hope this posts its the second one a wrote but the first time my computer or internet glitched and I lost it...
Best wishes to all
 
HI there and welcome! we do have a undiagnosis club here at the forum you can join. In the mean while i have had crohn's for 21 years now and i started out the same sorry to say. until i really took sick with diarrhea and passing blood. i don't won't to scare you in anyway. but, the best way to help you daughter is get her checked out as soon as possible to see really what is going on there. maybe there's nothing and just constipation problems or gastro problems. Hopefully there nothing wrong at all. and Just a one time thing. but if constipation problem eat lots of fibre. you can get benefibre in little sackets. you can put it her drink or just water it just dissolves to clear anyway. and there is no taste to at all. no after taste yea. best wishes

scott
 
Colonoscopy is fairly safe for a girl her age and I'd keep pushing for it if I were you. If you're not happy with the doctor's' approach and attitude, consider changing to a new one for your daughter's sake. It's common to do this and even recommended if you're not receiving satisfactory treatment. You have to be your child's biggest advocate because unfortunately there are some cavalier and egotistical or just plain lazy docs out there.

Since you're in Houston look for Dr Chiou who just moved out there from Boston Children's. He is EXCELLENT and I highly recommend him.
 
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Welcome Savannah's mom.

I am so sorry to read about all of the trouble your daughter has experienced. That is really a lot of suffering for anyone to go through at any age :(.

Her general coldness makes sense from her lack of eating. When your body does not get enough calories it will cool itself down so it does not need as much food to stay warm. Some of her symptoms are fairly common for IBD (the ulcers and pain for example) so hopefully the colonoscopy will give a clearer picture.

It can be really tough waiting for a procedure and then waiting for results. All I can say is try to really take things day by day. Take comfort in the fact that better answers will likely come from this procedure and remember that worrying and stressing before hand will not help your daughter at all.

Please keep us posted.
 
I want to thank everyone that responded, nice to know I am really not alone.

Mike, the coldness makes since, I wonder why the doctors didn't say anything or its a symptom they just aren't concerned with... Who know's?!

Scott, you can't scare me anymore than I am already. I have read a few cases llike Savannah's were people started off with constipation.

Muppet, I have only met with this Gi once he spent an hour with us he did a complete history started with my pregnancy and ended with the day we were there. I think he did a good job I left that day unsure of what i thought of him, but when he called with the results he knew he needed to do more investigating and scheduled the endo and colon. The waiting game has begun!!
I will keep your doctor in mine, so thank you for his name. As large as this area is it is still difficult to find a good Pedi GI doc. It took us 4 months to find the one we are seeing now.
 
Hi Savannah's mom and :welcome:

I'm so sorry to hear about your daughter, what an awful time for her and you too Mum. :(

We have an Undiagnosed Kids thread here, please have a browse through. My children never had diarrhoea associated with their CD and Sarah tended to constipation as well. Her blood and test results were also normal in the lead up to her diagnosis.

In regard to her feeling cold, has she had bloods drawn for B12, Folate and Iron stores? If not it may be worth asking for them to be done. If they are low it may explain the weakness and feeling cold and also point to an absorption problem in her ileum.

Many of the symptoms you list could also point to CD, actually all of them so keep doing what you are doing Mum...pushing for answers!

There is also a Parents forum here, so pop by and look around and any questions you may have please don't hesitate to ask.

Good luck hun and welcome aboard!
Dusty. xxxxxxxx
 
Hi, I know it's been awhile but since you all so all were so kind to respond I thought I would give you an update. I want to apologize because I haven't actually got my hands on any reports so I do not have any of the actual things found. Like, she has protien and inflamation markers in her stools but I can't tell you what kind.

August 25th she went in for her endoscopy and colonoscopy. The endoscopy went fine but they had problems with the colonoscopy and were not able to finish because of spasms and the doc was afraid he might have raptured or tore her colon so he withdrew before reaching the ascending colon. The results were back a week later. INflammatin was found in all of her biopsies from her asphagues(spelling is bad sorry), stomach, deudonuem, and all the parts of the colon that they made it to. So, the doc order a Upper GI with small bowel follow through, she had to drink the barium. That was Sept. 6th. The radiologist that perfromed the xrays asked me "did the doc order this because he is looking for Crohn's?" why yes he is, I said...Why, he said " well her bowels aren't moving the way we would like them to they seem a little hard" hmmmm, also I can not get Contrast thru her cecum or iluem.... OK
So the doc calls me back this past Thursday and tells me her xrays are normal. Which is great!!! He says I am going to treat her for colitis. He tells I know this is fraustrating it is for us doctors to when we simply don't have any answers. I can't tell you why she has blood, protiens, and inflammation markers in her stool. I can tell you that her inflamation is mild and we can treaat that and if the Pentasa doesn't work we will try something else... So, Savannah is now taking Pentasa 250mg times 2....3 times a day. As soon as I told her they were to help with her tummy she was like, give them to me..lol She swallowed them like a champ.

SO, I still really don't know anything or if this will progress into Crohn's or Ulceritive Colitis, but we have Savannah in the door now aand she is getting help. So, hopefully she will be able to start eating and gaining some weight.
 
Colitis only occurs in the colon (large intestine) so I think Crohn's is more likely. I'm no Dr though but seems obvious to me.

So glad she is getting treatment and hoping it starts working well soon!
 
Yeah, Colitis doesn't cover the inflammation in her upper gi tract. I am really hoping the Pentasa helps with the inflammation enough for my daughter to start eating again.
I am far from happy with the docs so called diagnoses and have every intention on getting all her records and having her pedi look at them. I know he is not a gi doctor but I am sure he is quite educated on Crohn's since his daughter has it.
I was almost certain that the radiologist did everything he could to tell me he thought she had Crohn's without actually coming out and saying it. He also made the commit that he thought we were looking at a really early stage of it.
I forogt to mention earlier that her stool samples also had some kind of damage markers in it...
 
Thanks for the update Mum.

I agree with obtaining a copy of all her test results and taking them elsewhere, your paed sounds like a good alternative especially when he has a child with CD.

Perhaps one of the stool tests your daughter had was for Calprotectin. It can be indicative of IBD because it will show an increase in the type of protein that is present when inflammation is active in the bowel.

I hope Savannah responds well to the meds hun and you have some solid answers soon.

Good luck!

Dusty. xxx
 
HI Mum, Like dusty said all markers point to CD. I hope the medications will work soon and so can get back on her feet again and begin to eat normally again. But watch her diet sometimes there are foods out there that can sabotage her system.Just get a diary and mark down what foods agree with her and what foods that don't and stick with the foods that don't cause any grief. Best wishes.
 


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