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No diagnosis still!!! Apologise for how long it is

(12 Posts)
Jessh18 Thu 21-Jul-16 22:13:57

I'm praying somebody can help me here or have some type of idea what could be going on with my daughter! She turned 5 a few days ago, but last October she became Ill.
She ended up in hospital one morning as she was unconscious because her glucose level was 1.0, they got her sugar levels up and a few hours later sent us home. Over the next couple of weeks I noticed she was sweating in bed even more than usual. I checked her temp and she had a reading of 33.3 most nights, I called 111 each time and we were taking into hospital again because of a low glucose reading. Reading between 2.3 & 3.5, one night paramedics came out at 10pm, after she'd gone to sleep at 8pm and had a reading of 2.3, although she'd eaten just before bed, they didn't want to take us straight to hospital to be sent straight home again, and they played with her for 45 minutes whilst waiting for the duty doctor to call, and without eating or drinking anything she went straight back up to a normal reading! The time after they took us in and we spent 3 nights in hospital, and they were supposed to do a nocturnal hypoglecemia test, which never happened! We were sent home once again after 3 days with them telling me there's nothing wrong!
Whilst all of this was happening she was 'full' a lot of the time, although she hadn't eaten much! This 'fullness', very, very bad stomach pains, vomiting black sick is still continuing. In February, this year, she began having blood & mucus in her stools. They sent off a stool sample for bacteria and inflammation, bacteria was normal, but inflammation was extremely worrying! A child's level of inflammation in the bowel should be under 50, and an adults should be under 200. My four year old daughters was 1676!!!! We were referred straight to hospital and got an appt the next day. She was sent for scans, blood tests etc, everything was fine. The consultant then put her on movicol because she believed she was constipated, although somedays she was going about 8 times a day! She was on this medication for a few months, went back to consultant and still nothing had changed. Fullness, sickness etc still continued. She was then referred to have a procedure, which was a camera down her throat into her intestines. They couldn't seem to find anything from the biopsies, but still noticed inflammation. She's now on some new medication which she started last Friday, but she is absolutely agony every single day for atleast 20 minutes with a bad stomach, and feeling very very sick, although these were happening before she started taking her new medication that they became very bad again. Whilst she was having her procedure, and was under anaesthetic they wanted to check her glucose level, and once again she was very low again, and was urgently given foods to up her sugar again, she hadnt had her sugar level tested since November last year when we left hospital, because I was sure I had gone crazy but I had every single doctor I saw telling me there was nothing wrong with her sugar levels. Am I right in thinking there must be something that's making her bowel & intestines inflamed? So why has she been given a medication to bring it back down to normal without actually working out why it's inflamed in the first place? I'm really hoping someone has had some sort of problems like my daughter and has a diagnosis, because I feel absolutely terrible with the pain she is in!! 😔😔

Sellingyesterdaysnews Thu 21-Jul-16 22:19:52

What is the medication?

Did they think the inflammation was inflammatory bowel disease, or a colitis from antibiotics or bowel infection, or did they not say?

Jessh18 Thu 21-Jul-16 22:33:37

They have not said anything! They just said she's very inflamed. She hasn't been, and wasn't on any antibiotics when the reading was high in Feb/March, nor this time when she had her procedure

Le1890 Thu 21-Jul-16 22:43:00

I am sorry to hear what your and your wee one are going through.

Have they suggested having a colonoscopy to look at her bowel? I'm not sure how glucose related but the inflammation level you mention(assuming this was a calprotectin test?), is very high and from my experience of this can indicate possible crohns etc?xx

Sellingyesterdaysnews Thu 21-Jul-16 23:36:00

Has she had endoscopy / colonoscopy or MRI etc? Sounds like IBD Crohns or ulcerative colitis . Do they have any further tests planned?
What is the medication..is it mesalazine?

Jessh18 Fri 22-Jul-16 01:19:38

Thank you for both replying. She's had the throat one done, which goes into her mouth, not sure which is which! They were going to do the other but then later decided not too because of the things she would need to do to do to have them.
And no it's lanzaprozole if I've spelt that correctly!!

Jessh18 Fri 22-Jul-16 01:21:37

And basically no further test planned. We've now got to wait until shes been on this medication a month before we see the consultant. 11th August. I believed perhaps she had chrones, but they seem to think she doesn't after taking biopsies and seeing theyre are ok

NavyandWhite Fri 22-Jul-16 06:33:17

Has she been tested for celiac disease? Poor little thing, hope you get an answer soon.

Jessh18 Fri 22-Jul-16 07:05:03

No she hasn't, how is that tested for? It's just very strange it's her sugars as well as bowel, I don't know whether they are connected or two things just started to happen at once. I don't know whether maybe she's allergic to a type of food, gluten, dairy etc, but she hasn't been tested, although she doesn't have anything out of the ordinary, and some days she can be fine, and has a lot of the same things, cereal with milk, sandwiches, etc. But then all of a sudden she'll have a bad patch with constant belly aches and feeling sick for days at a time!

NavyandWhite Fri 22-Jul-16 09:35:36

Celiac disease is tested by blood tests or a biopsy taken from the small intestine.

I wonder if she's already been tested when she had her previous biopsy? Might be worth checking?

Jessh18 Fri 22-Jul-16 10:03:45

Yeah they took some biopsies and said everything seemed normal other than inflammation! Thank you for your help. I will check. She hasn't seen her consultant since the procedure, not got an appt until 11th August

NavyandWhite Fri 22-Jul-16 10:21:39

Yes check what the biopsies were for. I hope you get to the bottom of this. Poor little thing.

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