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My daughters story

Mylittlesunshine

Mylittlesunshine

Hi Suzysu lol too early I called them at 8.30am
This morning still no response
I'm so sick of this wAiting game.
I'm seriously thinking of trying to find
Out how you go about getting second opinion
At another hospital. Feel like they ain't bothered.
 
Niks

Niks

I seriously understand your frustration!! Calling and waiting..

Has she been tested for coeliacs and had her B12 levels tested?? My daughter has had pins and needles and also more the constipation side rather than D.

After lots of harassing her IBD nurse we got her B12 levels checked and they were really low! This can cause pins and needles.

Good luck! really hope you hear back soon

:hug: :goodluck:
 
Farmwife

Farmwife

OK I'm off to Grace's appointment. When I get back I hope to see the update.
Don't GI's know that your forum friends need answers????
 
Suzysu

Suzysu

Phone up your patient liason person (you should be able to find the number on your hospital website under 'complaints proceedures') Tell them your story and say that you are seriously thinking of making an official complaint about your daughters treatment - that might just get you a phone call - if it doesn't them make an official complaint - good luck xxxx
 
Mylittlesunshine

Mylittlesunshine

Ok today has been a real downer
No call again from this idiot GI.
Lucy has been complaining a lot
With her hands and feet have pins
And needles and her feet and hands are
Stone cold, then this afternoon she sat poking
At her left cheek I asked her what was wrong
She reply its asleep I think she ment
She had pins and needle feeling in her cheek
Too. Just wondering what this could be .
Plus side she has managed to tolerate 2 feeds
Spaced out in smaller volume of 50 ml
Over for feeds .
 
Niks

Niks

My daughter has been exactly the same!! Has she had her B12 levels tested?

J sometimes has a numb tongue too and can bearly talk, but started in her hands and feet. Then arms and legs, even up her back. Often her face too!

We only found out about this because someone on here suggested it may be b1e and I wouldn't shut up until they checked her levels!!

Poor little thing :(. Hope she feels better soon x
 
CarolinAlaska

CarolinAlaska

Holding It Together
Mylittlesunshine said:
Ok today has been a real downer
No call again from this idiot GI.
Lucy has been complaining a lot
With her hands and feet have pins
And needles and her feet and hands are
Stone cold, then this afternoon she sat poking
At her left cheek I asked her what was wrong
She reply its asleep I think she ment
She had pins and needle feeling in her cheek
Too. Just wondering what this could be .
Plus side she has managed to tolerate 2 feeds
Spaced out in smaller volume of 50 ml
Over for feeds .
Click to expand...
So, how long have you been waiting now?? How many phone calls? Can your pediatrician try to get some answers? Sometimes they'll come out of a room to talk to a doc. Your ped can order the tests for B12, etc... May be time to give your ped a visit and let him/her know what is going on, all your daughter's new sxs and try to get some answers for you...
 
Patricia56

Patricia56

Location
Northern California, USA
It is time for action in person.

Pack up your dear child and all the things needed for her care for the day.

Take yourself down to the GI's office and sit in the waiting room until they see you.

Do not take no for an answer.

Do not leave when they tell you to go.

You sit there and clearly inform them that you have a sick child, you have been waiting X days for the results of blood tests that should have taken no more than 2 days to get and your child is getting sicker.

You are not moving until you see the doctor.

And then you settle in for the day.

I have personally never had to do this but I know two different mothers who did.

They were seen before the end of the day - actually much, much sooner in the case of the woman who's child who had regular diarrhea in his diapers and was occassionaly barfing at the same time.

If she's young enough to wear diapers/nappies, you should be prepared to find a way to change them right there in the waiting room while still being modest. If possible.

If they say your doctor isn't there today then you say that's fine you are perfectly willing to see whoever is available.

The alternative to this is to go to the office of the chief medical officer or who ever is in charge and sit in that person's office all day. That might be your best bet - I don't know enough about how the system there works to say for sure.

All the best.
 
Patricia56

Patricia56

Location
Northern California, USA
If you have any acquaintances or friends or friends of friends who are lawyers I would think about taking one of them with me too. They don't have to stay the day, they can just inform the staff that they are your attorney and it would be very unfortunate if legal action had to be taken to resolve the situation.
 
Lewiss mum

Lewiss mum

i would agree if you go to ur gp or ead they can ring and find some answers for u . do u get any letters that gets sent to your gp . we were lucky enouvh to be under a ped consultant s well as our gp she was the most fantastic docter i have ever come across. she works at our local a n e department at he weekends and we have seen her whn lew has been very poorly . u just need to find the right doc to back u .i hope u find one its hard enough looking aftr a child with crohns let alone messing about with an incompetant doc .xxx
 
Lewiss mum

Lewiss mum

do they not have ibd nurses there if i ws u i would go to a n e and say ur concerned about her sleepng etc . u havnt recieved any info and worried her symptons are getting worse when i ever ring and say this to my gastro secrectary or the nurses they the doc rings i think its sothat other docters dont think hes incompetant my hubby rsng the complaints department and kicked of a week later we got a colonosopy. tell the secretary u want refering to another doc .ur well wih in ur rights to ask for a second opinion at any time hn . hate i when u have to kicknof so much to get answers ive shouted and cried at the docters when i thought they wernt doing enough for lewis they must think im a neaurotic over protective mum lol and theyd be dead right lol i am hes my son and have crohns forever. hope u get some anwers today hun. i.ll keep a look out today for any news.xx
 
polly13

polly13

Location
Tipperary, Ireland
Mls am only catching up on Lucy's story today - I am lost for words that your GI hasn't called you back - can you go to another hospital. My Lucy's presentation was very different to your Lucy's so I don't have any advice for you there. I'm sure you have moved on from the bum blisters at this stage but if not my local chemist does a fantastic cream which I use on Lucy all the time ( poor little thing has had a sore bum since she was born) - she also has had a couple of episodes like you describe and in conjunction with the steroid a d antibiotic I found it great. MYbe there is a chemist near you thT does something similar. Please push for scope results, when I was having issues with Lucy's referral to GI I rang on the hour every hour and then started popping in- they got so sick of me the did it while I waited.
I understand how you feel as I hAve been through the diagnostic process and eventhough it is 18 months since Lucy was diagnosed I still cry when I talk about the months leading up to it. These are the hardest weeks when you don't know what is wrong with your baby - I am thinking of you and pray you will get some answers soon. I really wish I could do something to help. Hugs to you and Lucy
 
Jmrogers4

Jmrogers4

Just checking in like everyone else and hope the only reason you haven't posted is because you are in that doctors office getting answers.
Thinking about you and Lucy.
 
Mylittlesunshine

Mylittlesunshine

Sorry everyone I've not posted
Since last night I've been suffering
From very high blood pressure
Due to stress, and have had to rest.
Lucy's pead secertry called today
Out of blue, so I explained everything
And she says she will try and get me
Some answers ASAP. This secertry is so
Nice, anyway u guessed never got call from
GI. Fingers crossed pead secertry keeps her word.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Aw, I'm so sorry this is affecting you so much. I can totally relate and I don't have nearly the stress you do! I hope you can find a place of peace in this storm. I'm praying for you and your little one both! I'm not sleeping well, and I've noticed my hair is falling out when I comb or wash it! Stress!
 
Mylittlesunshine

Mylittlesunshine

UPDATE
Got a call back from pead secetry last night
She said that GI is off till Monday
But has booked Lucy in fora MR something
Scan on Tuesday then clinic in afternoon.
I'm just wondering what this scan is ?
She will call back later with more information .
 
Farmwife

Farmwife

Was it an MRI or an MRE?

Did she give any clues to what he's looking for?

Have you thought about a second opinion yet?

How are you both doing?

Is this enough questions yet?
 
Mylittlesunshine

Mylittlesunshine

I think she said MRE will double check later.
She told me biopsys are back
But GI is the one who will be able to
Give results.
What is a MRE?
What do the use this for usually?
Now I'm wondering what came back on biopsys.
 
Mylittlesunshine

Mylittlesunshine

Took Lucy to gp this morning as she still
Complaining of pins and needles and her hands
And feet are still stone cold.
Gp doing blood test to check her vit levels
And a bunch of other things x
 
Farmwife

Farmwife

MRE is a MRI with contrast. It can check the small bowel for abnormalities like scarring and such. I want Grace to have an MRE but her GI is saying not yet.
The blood test is a good idea. Do you know what her sed rate has been in the past?
 
polly13

polly13

Location
Tipperary, Ireland
It's probably an MRI or mre - Lucy has had an mre GI felt he would get better imaging from that. They put Lucy out for hers and we had to spend a couple of hours in recovery afterwards but it was no big deal for her at all, her daddy went in with her to be with her during the anaesthetic, the sent us for coffee and she was back right As rain in about an hour. Thinking about you- mind yourself I know how stressfull it is - I used to find ( and still do) a good cry helped ease the tension a bit.
 
Catherine

Catherine

Moderator
Sarah MRI with contrast was done as an adult patient, so i think her experience would be totally different to your little one.
 
Niks

Niks

Finally you have something!!! We are waiting too today to hear if they have agreed and MRE for my daughter. Fingers crossed it will be next week too.

Hope you get some answers with her bloods too.

:ghug:
 
Niks

Niks

She's not even keeping plain rice down!!! So trying Ensure. Went to GP this morning and picking it up this afternoon.

IBD nurse calling this afternoon about their decision about next test (hopefully MRE) this afternoon. Apparently they have a panel meeting this morning! Fingers crossed!!
 
CarolinAlaska

CarolinAlaska

Holding It Together
J had an MRE in December. She had to take a laxative prior then go NPO (nothing by mouth that day). Once there she had to drink 2 containers of contrast, but she could only do one. When they took her back they put an IV in her, which was the most traumatic part of the day. I can't remember how long the test took, maybe an hour at most. It seemed like forever. This was what happened for a 13 year old. I assume they would put the contrast in a little one by NG tube? Sedation for the study? The MRE was J's first test with the upper and lower endoscopies happening the next day. Our GI ordered them together since we came to Anchorage for 3 days to have it all happen at once. On Monday we saw the GI, Tuesday the MRE and later prep, Wednesday the scopes and home again. The following Friday she had the video endoscopy... Oops, sorry TMI...
 
izzi'smom

izzi'smom

Izz was 4 for her MRE. She was NPO the morning of...we planning on putting the contrast through her indwelling ng tube, but it came out while they were advancing it, and she promised to drink the contrast. 2 cups (maybe 16 oz each (?)), which made her rush to the bathroom. They put an IV in, injected glucagon (to slow peristalsis) scanned her, injected her with contrast, and rescanned her.

The MRI machine is loud and this scan requires long breath holds; I would suggest practicing (I went in with her and was able to hold my breath if I timed it right.)
It is also not a huge opening...Izz was on her belly with her head facing out of the machine...some little ones may have a hard time.
How old is she? I was told generally speaking kids dd's age "need" sedation; I was fairly confident she could handle it and there was minimal motion on her exam considering the long duration of the breath holds (there would have been breathing motion even with sedation), so I declined sedation.
An MRE examines the small bowel in detail without the radiation exposure from CT/radiographic barium studies. The small bowel isn't visualized completely during scopes; it can only be visualized during capsule endoscopies, CT, MRI/E or small bowel x ray.
Best of luck XX
 
Mylittlesunshine

Mylittlesunshine

Update everything for Lucy's scan will have
To be cancelled
As I'm in hospital my husband came home
Friday to find me collapsed in the kitchen
My blood pressure is very high and
My heart isn't beating properly(fast )
I'm awaiting heart scan .
Thank you so much for being such lovely friends
 
CarolinAlaska

CarolinAlaska

Holding It Together
That is terrible. I hope you get the care you need. It just goes to show us parents that we have to take care of us, so we can take care of our dear children.
 
kimmidwife

kimmidwife

Sending you healing thoughts! I know it is hard but you need to take care of yourself! I am sure your husband will do fine. They are always surprising us with how much they really know and can do without our help!
 
Mylittlesunshine

Mylittlesunshine

I don't know how long in going to be in
I have to go for a heart scan tomorrow
And I'm still on a heart monitor to keep
Close monitor on my heart rhythm
My blood pressure still high.
Hope will know more tomorrow.
 
Mylittlesunshine

Mylittlesunshine

Thanks everyone
I had my heart scan results back
I have a heart condition called
Cardiomyopathy which is my
Heart is enlarged and isn't working properly.
I've got wait to see heart speaicalist they
Referred me as urgent.
Thanks everyone for asking we are still
In shock x
 
CarolinAlaska

CarolinAlaska

Holding It Together
Thanks for the update, MLS. I'm sorry that it seems to be something serious, but glad that they caught it now before something worse happened. I am praying that you find the right fix for you so you can get back to your family soon!
 
kimmidwife

kimmidwife

Mls,
I am glad you have an answer as carolin said I am sorry it seems something serious but hopefully now they can treat it and you will improve. I will be thinking of you and keeping you in my prayers.
 
Sascot

Sascot

Sorry to hear about that. Hopefully they will see you soon and work out some treatment to get you feeling better.
 
Suzysu

Suzysu

OMG - Ive been away for a few days so only just checking in now - sending you get well soon wishes - as if you haven't enough to be worried about - I hope they get you sorted and home asap xxxx
 
Lewiss mum

Lewiss mum

aw hunny u really have been through the mill havnt u . take time for u and make sure u rest . i was poorly last year nothibg like what ur going throuh i dislocated my knee and had my appendix out my hubby had to take over lewis care he did a fantastic job amd he said he actually felt like he was helping more as i tended to do everythibg cause thats what us mums do lol. ur hubby wil cope he.ll probably realy suprise u steven even has tips for me he.ll say go amd get me 8ml of paracetamol and a buscopan emma we.ll try that first . try not to worry about your daughter everything will work out fine . sending big hugs to u .xxx
 
Mylittlesunshine

Mylittlesunshine

Thanks everyone
I've been moved to a heart ward now
Still having test done to see what
Type of cardiomyopathy I have
Which will tell them what caused it.
Lucy is doing ok still waiting on biopsys
And she is missing me badly.
I'm do depressed at the moment and
Feeling really low and scared that it
Could happen again.
I'm just so glad my husband had took
Lucy out with him when I collapsed
Because I was out for about an hour.
 
CarolinAlaska

CarolinAlaska

Holding It Together
I'm glad they found the problem quickly and also glad that you didn't die when you collapsed... How scary for your dear husband. I'm glad you are in good hands. Get the rest you need and try to find 10 good things to be thankful for each morning when you wake up to help ward off that sneaky depression that is trying to take root... :hug: :kiss:
 
Mylittlesunshine

Mylittlesunshine

Hi everyone
Just another update
10 days today and still on the
Heart ward,
Now I'm having test for checking
My kidneys as the heart condition
That have my have been caused
By a kidney condition.
I'm getting very fed up now
My blood pressure is still very high
And feel I'm not much further
Than I came in 10 days ago.
Sorry for the moan x
How are you all x
 
Suzysu

Suzysu

I hope they get you on some meds and out of there asap - I really feel for you and am keeping my fingers crossed that you will be on the road to recovery soon xxxx
 
Mylittlesunshine

Mylittlesunshine

Hi everyone
Thank you so much for the lovely messages
I'm still in hospital after two long weeks.
One of the symptoms I had was a enlarged
Right eye and after some tests I've lost
A quarter of my vision in it.
There not sure if its tempory or not.
 
Farmwife

Farmwife

Thanks for the update.
Did you ever find out the biopsy result for your kid?
I hope they were clear. You have enough to deal with.
Keep us posted.
 
Mylittlesunshine

Mylittlesunshine

Update on Lucy
Lucy is doing well she is having
Approx 4 feeds a day at the moment
It's enough.
I've got a telephone appointment booked
For Monday morning to discuss bioposys results.
So will let you all know.
 
Kimberly27

Kimberly27

Location
Mendocino County, Northern California
Dear Mylittlesunshine,

I know you have longer relationships with the people who have been posting on your thread, but I'm sure I speak for a lot of us (newbies and others) who have been following your story as well as your daughter's. We are all routing for both of you- good thoughts, prayers, positive energy, etc. I just wanted to point out that you are in many people's thoughts and prayers, including mine. I lit two candle: one for you, and one for your "sunshine".

Hugs.

Kimberly
 
X

xmdmom

I've been following your story and am sending healing thoughts to you and your daughter.

MylittleSunshine, do they doctors understand what caused your cardiomyopathy? (If not, did they rule out hyperthyroidism? It can cause cardiomyopathy, elevated bp, fast heart rate and eye or eyes that appear enlarged, and sometimes vision loss.)
 
CarolinAlaska

CarolinAlaska

Holding It Together
MLS, I am sorry you are still in hospital. The eye thing sounds terrible and scary. You're in my thoughts and prayers.
 
Mylittlesunshine

Mylittlesunshine

Another update
I've seen the eye speaicalist yesterday
And have been told ive lost a quarter
Of my vision in the right .
I'm waiting for him to let me know
What the outcome will be .
I've had today a MRI brain scan which
I needed sedation for depending if
This shows anthing will depend if I
Get to go home by weekend.
It's been along 3weeks .
 
Mylittlesunshine

Mylittlesunshine

Hi everyone
Yes biopsy results are here finally
Diagnoised as crohns officially
Was told she had inflammation
In theTI, rectum, colon and stomach
Also she has lymphnode hyperplasia
At the moment GI is happy to
Leave her with EN treatment until
I'm out of hospital, I still have many
Questions and and want more details
As the conversation was short.
Will try and start a new thread soon for
Lucy.
At the moment she is doing ok the EN
Seems to be controlling symptoms
But she still hasn't put weight I think.
I'm still trying to take this all in feels
Abit much to handle at the moment
And I'm scared for what the future holds
For her x
 
Sascot

Sascot

Sorry to hear about the Crohn's diagnosis, but at least they now know what is happening and can start giving the right treatment. My son did very well on only EN for a while, so at least you can think through all your questions before deciding on a maintenance med. I hope you will be able to leave the hospital soon - how are you feeling?
 
Mylittlesunshine

Mylittlesunshine

Sascot I'm not feeling to bad some days
Are better than others I just take each day
As it comes , I'm just finding it hard to
Sink in that I've got a serious heart condition
That is going to affect the rest of my life.
 
CarolinAlaska

CarolinAlaska

Holding It Together
MLS, sorry for so much bad news at once. If you are anything like me, though, at least some diagnosis is better than the worries about what it could be. Now you can face it for what it is. I pray you both find healing.
 
Mylittlesunshine

Mylittlesunshine

Today I saw the eye speaicalist
And have been diagnoised with
Keracotonus disease of the right
Eye, this can not be cured the
Only is they can prolong it from progressing
It's where the cornier goes goes a cone she
And thiner as it progresses which scares me
As I could loose my sight in that eye or
Have to have a cornier transplant .
It feels like I'm a walking time bomb
Ready to go off, I can't help wondering
What other illness my body has been hiding
Because in 3 weeks a I found I have 2
Diseases which has majour effects.
Everything feels like its breaking apart
And I just feel like crying 😭
 
Clash

Clash

MLS, I'm so sorry that you are having to deal with so much right now. I want to send my support and hugs as well as prayers your way. We are all here for you whenever you need support. If you feel like crying then I say let it out. And we are always here.
 
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