Help Needed

[KerrieB]

Hi I am new here so please be gentle.

My daughter was suddenly taken ill in September with chronic abdominal pain on the right side and persistent vomiting.

To cut a long story short 6 months on, she is still in pain, has lost 20kg and cannot keep food and drink down (a little must be getting through as she is toileting every 3-4 days). She is 15 and has had CT scans, endoscopy, ultrasound scans, blood tests, and all results come back normal. She is currently awaiting the results for an MRE scan but the consultant thinks that will be fine, he is implying that it is her brain making her do this yet even though she is on ondansetron, domperidone and omeprazole it has reduced her symptoms but she is still losing weight and cannot keep a meal or drink down. The vomiting is effortless almost like a tap being switched on with no gag reflex being used.

This all came on very suddenly after bouncing on a trampoline and having an asthma attack but the consultant is now running out of ideas and keeps suggesting that this is all her brain controlling her body.....

Obviously this is having a huge impact on her and she now is not at school as was constantly running to the toilet to be sick, I know crohn's normally has bowel issues but she does have a lot of the symptoms but not all.

I just wonder where to go if the MRE comes back normal so you help is appreciated.

From a worried mum x

 

[ronroush7]

Welcome to the group. Has she had a fecsl calprotectin? It is a stool test which measures inflammation.

 

[KerrieB]

Hi ronroush7 when she was last admitted (been in hospital 5 times over the last 6 Months) they said they were doing a stool test, all they have said to me is that all results are normal, yet I have a daughter who will throw up mid meal, conversation and at the drop of a hat who cant bend down because of this constant pain yet they keep telling me everything is normal, she got that upset last time she said to the doc do you think I am making this up, why would I want to be sick like this and have all my clothes falling off me, even the nurses say there is no way she can be controlling the vomiting as they have witnessed how quickly it happens. So sorry she has had that many things I cant remember the name other than she had to do a sample

 

[ronroush7]

I am so sorry. Can she get a second opinion?

 

[KerrieB]

Well initially she was under a normal consultant, then she got passed to the clinical director of pediatricians and he is discussing her case and treatment with the nearest children's specialist hospital as there are 3 in the UK, just really worried about getting a CAMS team involved unnecessarily especially for a young girl as it seems that if they cannot find anything obvious say its the brain as its easy to pass off to another department, my problem is what happens 6 months from now and that hasnt worked where do we go from here .

 

[ronroush7]

Can I ask what is a CAMS tesm?

 

[KerrieB]

Can I ask what is a CAMS tesm?

certainly, is child and adolescent mental health

 

[Clash]

Welcome to the forum. When you say endoscopy I assume she has had both an upper endoscopy and colonoscopy with biopsies?

Has cyclical vomiting syndrome been mentioned? Have they discussed gastroparesis or run any tests concerning this?

Have they tested her for vitamin deficiencies? I would push for that since she is vomiting quite frequently so may need vitamin replacement therapy for some vitamins

Is she having other issues such as joint pain, eyes issues, skin rashes?

Are you in the US? If so, you may look at getting her to one of the top pediatric GI clinics like CHOP, Boston's or CCHMC in Cincinnati.

Hope you find some answers soon.

 

[Clash]

So sorry must have posted same time as you I see you are in the UK. I guess the top GI centers in US are irrelevant.

 

[KerrieB]

Welcome to the forum. When you say endoscopy I assume she has had both an upper endoscopy and colonoscopy with biopsies?

Has cyclical vomiting syndrome been mentioned? Have they discussed gastroparesis or run any tests concerning this?

Have they tested her for vitamin deficiencies? I would push for that since she is vomiting quite frequently so may need vitamin replacement therapy for some vitamins

Is she having other issues such as joint pain, eyes issues, skin rashes?

Are you in the US? If so, you may look at getting her to one of the top pediatric GI clinics like CHOP, Boston's or CCHMC in Cincinnati.

Hope you find some answers soon.

Hi no we are in the UK. The consultant has touched on the subject but said it will sort its self out in time, they say they have done all the blood tests they can do but will ask about the Vitamin deficiencies when we go back in March. She has been getting headaches and did get a rash that looked like vein blow outs on her cheek the DR said that was from being sick and burstin blood vessels. Never heard of gastroparesis and they have never mentioned it either

 

[KerrieB]

 

[ronroush7]

Support and prayers. Keep us updated.

 

[Eridon2002]

I would get copies of all the results and tests they have done. They might have done a stool test but it could have been for parasites, C-Diff or something other than fecal calprotectin. Best to be well informed of everything performed

 

[Salad_Shooter]

I HATE when they pass things off as all in our mind. All of my lab work comes back normal, but I have severe fistulizing Crohn's. On paper, I look like the picture of health, but inside, I am a total mess.

I'm not familiar with how the UK treats second opinions, but from what I've read of what you've been through, this poor girl needs a GI specialist....and preferably one who specializes in Inflammatory Bowel Diseases.

I hate that they're treating her like she's nuts. It doesn't help.

 

[ronroush7]

I agree.

 

[KerrieB]

I would get copies of all the results and tests they have done. They might have done a stool test but it could have been for parasites, C-Diff or something other than fecal calprotectin. Best to be well informed of everything performed

Thank you, I am busy now doing a list ready for our next appointment

 

[KerrieB]

I HATE when they pass things off as all in our mind. All of my lab work comes back normal, but I have severe fistulizing Crohn's. On paper, I look like the picture of health, but inside, I am a total mess.

I'm not familiar with how the UK treats second opinions, but from what I've read of what you've been through, this poor girl needs a GI specialist....and preferably one who specializes in Inflammatory Bowel Diseases.

I hate that they're treating her like she's nuts. It doesn't help.

I agree, well to be honest his response is I am the clinical director you dont get higher than me in this hospital - he is talking to the childrens hospital as I asked for her care to be transferred, again the response was I will do it if I deem it necessary.

The UK is way behind when it comes to things like this and we are seriously considering looking for a private specialist outside of this area as we know our consultants here also do private care so we could end up seeing the same person.

What makes it worse is he said in front of my daughter this is how eating disorders start and I was like you are creating this by not fixing her, she now is so paranoid that they wont find anything and will think she is making it all up.

 

[susser2000]

It sounds like she has a bowel obstruction, but I doubt they wouldn't have found that. I am very surprised they released her from the hospital when she is not keeping food or drink down. I'm sorry to hear this and hope you get a resolution soon.

 

[Salad_Shooter]

I agree with Susser. It does sound like an obstruction, but it could also be a kinked bowel. My kink didn't show on CT scans, and wasn't discovered until they went in to revise my stoma.

I don't know. Saying things in front of her is monumentally disgusting. It would have taken everything I have to not smack the hell out of him. If you don't want to do it....I will.:voodoo:

 

[sarahfh]

Sorry to hear your daughter is so poorly, I really hope you're able to get some answers for her soon.

There is a rare condition called SMA Syndrome which may also be worth having a quick look into to see if it could fit. Like I said, it is very rare, so it's unlikely and also it means most doctors aren't aware of it so it might be difficult to get diagnosis/treatment if it is that.

Like others mentioned gastroparesis may also be worth the doctor looking into more, the way to diagnose it ideally is with a gastric emptying study and there are drugs which can improve gastric motility as well as options such as an NJ tube to bypass the stomach entirely and give nutrition that way in bad cases. Although it can resolve itself it can also cause severe malnutrition and dehydration so if it is gastroparesis it's worth searching for a doctor who specialises or has more sympathy.

Of course it could be IBD in the stomach/duodenum or as mentioned something like a twist or kink in the bowel too. Despite being in the UK I have no idea how to get a second opinion I'm afraid, but there are many doctors who work both privately and for the NHS so they can refer you back to themselves on the NHS after a private appointment.

 

[my little penguin]

Paging Maya142

Ds has Gastroparesis ( GP ) and crohns
At one point prior to crohns they thought cyclic vomitng syndrome
Abdominal migraines can also cause it .

GP is very hard to treat and doesn't go away
Make sure she is off domperidone since it will give invalid results on gastric emptying tests


Good luck
Has she had a colonscopy
You seem to mention an upper endoscopy but not lower

 

[ronroush7]

I HATE when they pass things off as all in our mind. All of my lab work comes back normal, but I have severe fistulizing Crohn's. On paper, I look like the picture of health, but inside, I am a total mess.

I'm not familiar with how the UK treats second opinions, but from what I've read of what you've been through, this poor girl needs a GI specialist....and preferably one who specializes in Inflammatory Bowel Diseases.

I hate that they're treating her like she's nuts. It doesn't help.

I had pain and diarrhea lsst year. They did an enterography and said I was in remission. I kept up and they did another enterography. It turned out I had active inflammation after all.

 

[Maya142]

Hi and welcome.

I agree, they should investigate for Gastroparesis. Gastroparesis is delayed gastric emptying - essentially food does not empty out of the stomach properly and just sits in there for a long time. That can cause nausea and vomiting. It can also cause fullness and so kids barely eat and lose a lot of weight.

My daughter has Gastroparesis. She lost 23 lbs and was very nauseous. She got full after taking a few bites. She had stomach pain and severe nausea after meals and occasionally vomited.

She became so underweight that she eventually had to get a NJ tube - which bypasses the stomach and goes into the jejunum (small bowel). With it she started to gain weight and eventually she had GJ tube placed surgically. She hated the NJ tube because she didn't like walking around with a tube taped to her face, but it really helped her. She was hospitalized three or four times for weight loss.

She has now gained the weight back and is still getting overnights feeds through her feeding tube. She is doing a lot better now that she is a normal weight and is getting calories. She is also able to eat more.

Domperidone is used to improved gastric motility. Other meds used include Relgan and Erythromycin. My daughter is currently on Domperidone and is doing well. She also used Ondansetron for nausea. We found the kind that dissolves, vs. the regular pills, helped most.

A gastric emptying scan is not difficult. Your child will eat eggs or something similar with a small amount of radioactive material in them. They will then lie still as a scanner takes pictures of them. The scans are long - 4 hours usually. They let my daughter to take Ondansetron before the test so she didn't throw up the meal. She got very nauseous but managed to keep it down.

Good luck - it's so hard watching your child suffer. I hope they are able to help her soon.