Please could anyone help?

[Summer78]

Hi I have a 7 year old son who is not diagnosed yet but for the past 8 wks has had the following symptoms.

Vomiting
Diahrea
Occasionally bloody stools
Fever / sweating
Feeling dizzy
Constant pain in whole abdomen
More intense pain 10 min after eating anything around belly button
Pain in his lower right hand side
Pain under his rib cage
Has acid vomit in his mouth
Burps
Paracetamol and ibuprofen do not help the pain neither does tummy rubs and hot water bottles

He has had full blood tests which showed no inflammatory markers
His fecal calprotectin test also showed no inflammatory markers
His urine test also showed nothing

I have been to A&E once with him and was sent home with ranatidine which we have been taking for 10 days so far no improvement. We have been to our GP 6 times. We have a consultant appointment in four weeks time.

However he is writhing around the room in pain constantly not any break through out the day. I can't leave him like this for another month. The A&E refused to scan him as told me to wait for consultants appointment.

I just don't know what to do? Does this sound like IBD? But why would the fecal and blood test show no signs?

Any advice really appreciated thank you

 

[CarolinAlaska]

Have they checked him for infectious causes such as c.difficile, giardia and the like? C.diff infections can act like IBD. Has he had a CT scan or MRI to rule out fistulas or blockages?

 

[Summer78]

Have they checked him for infectious causes such as c.difficile, giardia and the like? C.diff infections can act like IBD. Has he had a CT scan or MRI to rule out fistulas or blockages?

No ct scan or mri given and other than blood test that say no inflammatory markers and the fecal calprotectin no other tests done. Is this something I should be demanding? I'm at a loss of how to help him and worried about leaving this another month

 

[Womble]

There’s a few people who may be able to help, I don’t know how to tag people or move your post.
There’s an undiagnosed kids forum
Mlp or maya may have advice
Did they check for celiacs

 

[Maya142]

I'm so sorry to hear your kiddo is suffering so much. Can the GP prescribe an anti-spasmodic to see if it might help with the pain while you are waiting to the see the consultant? My daughter takes Levsin (Hyoscyamine). It doesn't eliminate the pain, but it does help a lot with cramp-y pain. There is also Bentyl (Dicyclomine). I think I have seen UK members mention Buscopan - I believe that is an anti-spasmodic too.

It sounds like your son need scopes to figure out what is going on. Is it possible to get the doctors in the A&E to admit him for testing? If you say he is writhing in pain at home?

It could be IBD but it could also be something else. It is hard to tell without tests. There are some kids who do have negative blood work and negative fecal calprotectin.

I'm going to tag some more parents to see if they have more ideas:
crohnsinct
my little penguin
pdx
Jmrogers4

 

[Summer78]

Thank you so much I'm going out of my mind worrying about what to do. Buscopan is a great idea thank you. 3 gps and one emergency A&E dr all looked at me blankly when I said please can he have something for the pain and they just said calpol(children's liquid paracetamol) but it doesn't help at all. I agree I need something to stop the cramps.

I have tried asking the drs in A&E to give him scans as I agree that that is what he needs but they said no. I was thinking about waiting for the next bad flare up and going back to A&E and hope we get a better dr this time. He has missed 4 wks of School through this he makes it until around 10am and then gets sent home early because of the pain. We are gluten and dairy free too.

Thanks for all of your help

 

[Maya142]

Honestly, some parents have had to do that - gone to emergency when their child is at their worst and asked (begged!) for help.

There is nothing worse than watching your child in pain. Hang in there and good luck :ghug:.

 

[pdx]

I'm so sorry that your son in so much pain. When my daughter was first showing severe symptoms, we had a similar situation, where we were given a GI consult appt that was 6 weeks away (despite the fact that my daughter did have a very high calprotectin). We ended up taking her to urgent care, and when the pediatrician there saw how sick she was, he admitted her to the hospital. We were able to see a GI there, and she scheduled my daughter for emergency scopes and MRE later that week.

So you may need to keep taking him in to either your GP or to emergency if you feel he can't make it the 4 weeks to the consult.

Good luck. I know how insanely frustrating it is when your child is sick and in pain and you are supposed to just wait weeks to see a doctor.

 

[Pilgrim]

This sounds very similar to my 9 year old son. Bloodwork fine, ultrasound fine, tried him on Ranitidine, and PPI, pain every day. Pain was worse after eating and worse with a bm but always present. We didn't have calpro.
We were able to get him scoped and he has Crohn's disease.
He had no diarrhoea or blood, just that pain.
Keep pushing for answers.

 

[crohnsinct]

It is hard to say with abdo pain. It is the number one reason kids or even adults go to the doctor and there are many causes. True some kids do still have IBD even with normal blood and fecal markers but they are more rare. Every item you listed could be a symptom of IBD.

It could be a motility disorder, infection, IBS, Small Intestinal Bacteria Overgrowth ( SIBO), Celiac etc.

The thing that jumped out at me on the list is the blood. You do not bleed with all the things I mentioned. That is usually just with IBD. How much blood are we talking? Is it through the stool or does it just come at the end or is it just on the toilet paper? Is it darker red or bright red? The GI will want to know these things because it will help determine if maybe the bleeding is coming from a fissure or a hemorrhoid and not really indicative of IBD.

How is his weight and growth?

Shame on the doctors for not getting a suffering child in sooner. Poor kid. I hope you can get in soon or that your general doctor can help you in the meanwhile.

 

[Summer78]

Than you all for the advice. I have taken him back to the gp today and demanded a scan and some anti spasmodic drugs and have been given Buscopan three tablets a day. He had his first dose before bed this evening (uk time) so I hope it helps. He was still in pain this evening do you think it's might take a while to start to work? He also is continuing with ranatidine.

His blood test was negative for celiac disease and he has lost 7lbs in the last two weeks. His height is good though for his age.

The blood was not much and was in the stool, red coloured. I think that means bleeding lower down?

The gp suggested it this new drug doesn't help the pain go back to A&E in the hope the consultant appt gets moved along.

Do you think there is anything else I could be doing or checking here?

Thanks again for everything I'm very grateful

 

[my little penguin]

The anti spasmodic either works or it doesn’t
It’s not a build up drug
Some work better than others
For ds bentyl works better than levsin
But that said for others on here levsin worked better

Can you track calories on my fitness pal app ?
This way you can show despite eating enough calories he is still losing weight
Hate that he has to wait
It took us 8 months to get a scope and a month later scans

Hugs
Celiac blood panel isn’t definitive
Scopes are the gold standard

 

[Maya142]

7 lbs is a lot to lose for a kid .

Generally, anti-spasmodics work immediately. I would try it once or twice more. My daughter finds Levsin works best from cramping type pain. If it's a dull ache, it doesn't do anything for her.

She tried both Levsin and Bentyl and found that Levsin worked well for her. I don't think Buscopan is used in the US much (if at all), so can't comment on that.

I would agree with MLP - track calories to see if he is eating enough.

If pain is severe, take him to emergency, like your GP said.

I wish we could be of more help.

 

[Carolina*]

Thank you so much I'm going out of my mind worrying about what to do. Buscopan is a great idea thank you. 3 gps and one emergency A&E dr all looked at me blankly when I said please can he have something for the pain and they just said calpol(children's liquid paracetamol) but it doesn't help at all. I agree I need something to stop the cramps.

I have tried asking the drs in A&E to give him scans as I agree that that is what he needs but they said no. I was thinking about waiting for the next bad flare up and going back to A&E and hope we get a better dr this time. He has missed 4 wks of School through this he makes it until around 10am and then gets sent home early because of the pain. We are gluten and dairy free too.

Thanks for all of your help

Was he gluten-free before the Celiac testing? He must be eating gluten for a period of time for that to be accurate. Also, there are many people that are very much affected by Gluten regardless of the blood test results. They always say the scope is the "gold standard" for diagnosis but now many admit this isn't even great. Many Doctors do not take enough biopsies and the villi damage can be easily missed if not enough are taken. In my daughter's case hers looked "unremarkable" in the Doctor's words but then diffuse damage was found in the biopsies. There are lots of people disgruntled with Celiac diagnosis limitations, it can be very tricky.