My daughters story

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Sending more hugs and more hugs! We are all here thinking and praying for both you and Lucy. Just take it day by day right now. It is hard when so much comes at you at once but at least you have answers to start to look for solutions. Keeping you in my thoughts and prayers!
 
Adding my ((Hugs)). It is a lot to take in but taking it day by day or even hour by hour if need be, come on here and visit for a laugh, a cry, a vent, whatever you need we'll be here virtually holding your hand. Take care
 
Mylittlesunshine said:
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 ��
Click to expand...

I was just reading an article yesteday that was about how people can get cardiomyopathy caused by stress. I thought of you. I hope you can find a therapy that helps you deal with the stress so you can be healthy to help your daughter and so you can get better. I know how it is when you are in the thick of it - it plays a big toll on us all!
 
Thanks everyone for your lovely thoughts
And wishes.
I'm hoping to come home at end of this 4 th
Week.
I'm so scared and worried that it will happen
Again. Been feeling really low and can't stop
Crying .
Sorry
 
Mylittlesunshine said:
Thanks everyone for your lovely thoughts
And wishes.
I'm hoping to come home at end of this 4 th
Week.
I'm so scared and worried that it will happen
Again. Been feeling really low and can't stop
Crying .
Sorry
Click to expand...

Sweetheart, are you taking anything for anxiety and depression? You may consider asking your doctor about it if you can't come to a place of peace in your heart while you are under all this stress. :heart::heart::heart: <<<HUG>>>
 
I've been told its normal to be upset and scared ect
And they won't give me anything
As all the long list of medication
That I'm on is not good with depression tablets
Also my blood pressure is far to high
198/145 average .
The thing that scares me is not knowing
If I will collapse again and if the kids are
Left alone with me if it happens.
I guess it's going to take sometime to get
Use to it
 
Since you can't take anxiety or depression medications, what about non-medication options like mediation or hypnosis CD's, counseling, or massage? Is there a support group at the hospital for people with similar conditions? Perhaps there is one on-line?

How's Lucy?

Hugs.

Kimberly
 
Seriously, they are going to send you home with a diastolic BP of 145? Have they checked you for pheochromocytoma?
 
Hi carolin yes I asked about that and
Was told that the two 24 he urine
Collection test where to test for that
But take few weeks to come back
As it is a speaicalise test.
Thanks for mentioning it x
 
Hi everyone
I just want to say a huge thank you
To all my dear friends for there support
And we'll wishes, if I didn't have you guys
I don't think I would of made it though
This last month.
Anyway I finally got home and have to
Take a long list of meds and have regular
Check up with gp and hospitals
Heart failure clinic .
Not all my test have come back but I
Do know for sure I have dilated cardiomyopathy
Which made me collapse that day ad my heart
Skipped beats.
Will keep u all updated x x.
 
I hope you are feeling a little better and will continue to improve. Some causes of dilated cardiomyopathy are reversible. Hoping that's the case for you.
 
I am glad you are home. I hope it is a good thing and you have lots of support around you and your family, and I hope you are completely healthy soon!
 
Glad you made it home. Hope the meds keep it under control. Just wondering - when my mom was being released from hospital quite ill, they recommended her getting a medic alarm button installed. Basically you have an emergency buzzer that you can wear round your neck and one for the house which you can press if you collapse and a trained first aider will be there asap and they can get in touch with an ambulance if needed. Don't know if you have that where you live, but might be worth looking into. Then both you and the kids have something to press if needed.
 
Sascot thanks for that information
Where would I find details of that?
Is there any certain company's that
Do it? Any idea of the price?
Any info would be great
 
Not really sure as I think it varies between areas. Our emergency response is called MECS. My mom was quoted £3 a week, but she is a pensioner, so it would probably be more than that. Maybe if you asked your local hospital and/or local council? At the hospital I think it was the occupational therapist who arranged for it.
 
Hi everyone
Thought I'd update you all on Lucy
Her EN is going ok she hasn't lost
Any weight but hasn't gained either.
She has appointment next week
For bloods and talk about meds I think
He wants to start her on pred?
Any experience and advise would be great.
If I decide not to go ahead with pred
What other maintenance meds are usually
Used?
 
Ok my update
This hasn't been a good two weeks ended up
Back hospital twice.
Last weekend was the worst I collapsed
Again with my heart very fast beating
Pain in chest was rushed to hospital resus
It's really scary wish everything will
Go back to normal x x
 
Most of the maintenance meds take some time before they are effective, that is why EN or Pred is used to induce remission, the maintenance meds are started while still on EN or tapering pred so when you end EN or taper off the pred the maintenance med has had time to reach full efficacy.

So sorry to hear you are still having trouble. I hope they are able to get things under control for you and your daughter quickly!! HUGS!!
 
Sorry to hear you aren't feeling well still. Not sure about maintenance meds, seems to vary. Our GI starts with Aza, then 6mp, then Methotrexate, depending how the kids respond. Hope they manage to get you onto a med that makes you feel better!
 
Mylittlesunshine said:
Hi everyone
Thought I'd update you all on Lucy
Her EN is going ok she hasn't lost
Any weight but hasn't gained either.
She has appointment next week
For bloods and talk about meds I think
He wants to start her on pred?
Any experience and advise would be great.
If I decide not to go ahead with pred
What other maintenance meds are usually
Used?
Click to expand...

How much does Lucy weigh and how much EN do they give her every day? Is the able to eat with it? Is she still having symptoms other than not gaining weight?

Like Lucy, I think Jae may end up on pred next week since she is still having some belly aches and hasn't achieved remission by now (week 5). I think we'll be discussing starting 6MP as well for remission.
 
Mylittlesunshine said:
Ok my update
This hasn't been a good two weeks ended up
Back hospital twice.
Last weekend was the worst I collapsed
Again with my heart very fast beating
Pain in chest was rushed to hospital resus
It's really scary wish everything will
Go back to normal x x
Click to expand...

I'm sorry to hear that you are still suffering with your own health. Are you back home now? I will pray that they can find a way to stabilize you better.
 
Hi everyone
just a bit of news i wanted to share with you all
Lucy went for poop on potty for the first time:dance::dance::dance:
i was so proud of her, as you all know she is still in nappies,
hope it carrys on :):)
 
I'll say a prayer right now that it will go well and provide a good solution to your cardiac needs and bring you peace and health.
 
Thanks carolin it's been really hard to
Get used to and not being able to
Do things you are used to doing .
The worst is being tired all the time and
Out of breath.
It made me cry today when the kids gave
Me Mother's Day card found it really emotional.
All prayers welcome Hun thank you
 
Hi everyone
I went the heart failure clinc
Things didn't go as well.
I've had to have heart monitor fitted for
24 he then got to take that back to have
A blood pressure monitor fitted for 24hr
The heart failure nurse fiited me in for emergency
Appointment to see heart doctor Friday
As she thinks I might have anarythmia which
Is making my heart beat fast, I'm still shocked
As this is with the cardiomyopathy aswell.
Sorry for not updating earlier x
 
Sascot thanks for the information on
The alarm I found a local company
Who don't charge for the alarm all
You pay is £2.99 per week for the service.
I'm hoping to have the alarm fitted next
Monday .
 
Glad you managed to find an alarm company. Helps with a bit of peace of mind. Sorry your appointment didn't go well. Hopefully the heart specialist will be able to come up with a good treatment plan!
 
Glad you found that alarm company! Hopefully they figure out things fast and get you onto a good treatment plan. I am sending prayers your way!
 
Thanks everyone don't know what I
Would if done without you guys x
Lucy goes to see the GI on Thursday
To discuss treatment plans and meds and
Results x
 
A quick question Lucy went poop today
And in the poop was yellow/orange/ pinky red
Mucous. Has anyone else's kid had this?
Is this normal. She's had mucous before but not
This colour. Any ideas or advice greatful x
 
Mucus can mean inflammation in the track. Grace has it also. Call the GI. Now you know what she has they will be able to answer right away. Let us know how it goes.
 
If you think of it, take a pic.

You should ask if they want samples if things like that happen out of the ordinary or would a picture do?
 
Hi everyone
Sorry for not updating sooner
Ok will start with Lucy.
Went to GI appointment on Thursday
Showed him pic of mucus and he said
It's most likely inflammation so he took
Bloods. He want to keep her on EN
And start he on pred which I'm a bit
Concerned about and the dose seems abit high
For a 3 year old or maybe just me.
He also mentioned instead of using NG
Tube she would be better with a mickey
Button, has anyone else's kid got a peg? Or
Mickey button? Would like to know more
Info snd experiences.
So all in all things are happening.
 
Ok my update
After having 24hr heart monitor on
I went to heart clinic today
And it showed my heart going fast even when
Sleeping, so he sent me for a ECG of heart
Which showed my heart racing at 130
and LVH abnormality and tachycardia
. So the have started me on more new meds
And in 2to 3 weeks time I've got to have
A heart monitor implant put into my chest
Which I'm really scared about as I will be
Awake 😱x so the story continues
Wish I could fast forward 2013x
 
I believe vtfamily has a peg, there is someone else but darned if I can remember. If I do I'll come back and page them.
 
EthanClark and Farmwife (me)

Both kids might have mickey buttons in the future. Grace is because of her Eos Disease.
EthanClark is because their hoping to keeping him on supplemental EEN to keep him in remission.
 
Well at least they are trying to get Lucy sorted! No experience with Pred, so no advice there, sorry. Andrew only had to deal with the NG tube, so that's the only thing I can help with.
Sorry to hear you are going to have to have the heart surgery awake although they can do amazing things these days while people are awake and it's much safer than having to go under a general anaesthetic. I hope the new meds start working soon for you!
 
Farmwife they want to do Lucy's mickey button in next
Within next 4 weeks .
They started Lucy on 30mg of pred a day
And will get telephone appointment for
Next Thursday see how she gets on will
Start first dose tomorrow x
Fingers crossed x
 
Grace is on 20. So 30 is high BUT she is also very ill.
I was thinking of a support group for g-tubes.
What do you think?
 
MLs,
I just wanted to send you both a hug! 30 mg of prednisone does seem a little high but are they weaning her down or keeping on her on that dose? Maybe they want to give her a big initial dose to calm things down.
 
Kim from what he said they will keep her at 30mg
For two weeks depending how she copes
Then he said he will make decision to weN or not.
How does pred usually work with dosage and
Length of time being on it.
How long after starting pred do they start to wean?
 
Grace is two weeks but her dose wasn't high enough so the GI upped her 20mg for another two weeks. Her tapper is 5mg less every week.
So two weeks seem to be normal.
 
About the G-Tube
Thanks, now we just need to find someone that knows what in the :ybatty:sam hill it's all about.:lol2:
 
When I was at GI on Wednesday, our doc showed us a Mickey button. It is very small and has an inflatable part that holds it in the stomach. I'm starting to think it is a great idea. I think if it was me, I'd rather have a Mickey button than having a tube in my nose all the time. Google Mickey button, I bet you'll find pics. A g-tube comes from the top and goes through the inside to the outside. I think the Mickey goes from the outside in, but requires two small holes for the cameras to see what is happening from the inside. Yikes!
 
MLP thank you got the link
Will go have a look at it.
Me and hubby think its the best
Option at least when she starts school
In September no one will know its there
Instead of worrying about NG coming out x
 
MLS,
What FW said about dosing and weaning is pretty much what our doctor does, though some docs will do a steroid burst meaning a higher dose for several days then a slightly lower dose for two week and then start the wean. I have to agree with the others that a Mickey button sounds a lot easier then the NG tube.
 
link requires a registered membership- free but still a membership.
the link is to parents of kids with food allergies
www.kidswithfoodallergies.org

lots of little kids cant have food on there due to
food allergies
GI issues (motility, EGIDS )
so
lots of tubey info
including permanent tubes
.
 
Urghh Lucy woke up again this morning
Screaming, when she was changed
Yet again her whole bum was burnt
And about 8 blisters😞
I've called gp waiting for him to call
Back, I'm sure she's going to need
A stronger cream.
 
Yeah the gp did call back
We took her to see him this morning
He's given her a steroid cream
And some antibiotic as it looks like
It's starting to get infected.
My poor sweet heart won't sit down
And when she goes for number 1 or 2
She screams. It took ages last time
To clear just hope it clears quick this time x
 
Your poor baby... My heart bleeds for her.

Did he give her some pain medication?

I remember using a blister powder when mountain climbing once. It dried out the blister quickly. However, I think it was mostly advertised for friction relief. Is that an option?

Kimberly
 
I know it sounds terrible, but going potty into a warm bath or even a warm sitz bath might help it not hurt so much... ?
 
Morning everyone
Been up all night her bottom has got
Worse more blisters, bleeding, and puss
She also got high temp 39 plus x
Taking her back to gp this afternoon x
 
Poor little thing! :cry:

Hope she gets something to help this afternoon. Good luck xx

:ghug:
 
Ok went to gp, he thinks she's
Going to need Iv antibiotics to clear it
Quick, he wanted to do snobs but
With Lucy screaming and punching
And kicking to take the nappy off
He decided against it.
He called the GI office and left message
If not called back by tomorrow morning
He advised us to go A&E x
 
So sorry to hear all this.
Have you tried the warm water idea. Let her do 1 and 2 in that?
I never thought of that for Grace. If she has problems again I might do that.
 
So sorry to hear she is suffering so much. Have to say sometimes it takes a trip to A&E to get things sorted. I remember when Andrew was having issues and his bottom was soo red/sore, the GI nurse prescribed a special barrier cream. I will try to see if I can find out what it was.
 
Lucy was seen recently by a wound specialist for the sores on her bum her advice was to use orabase it's an OTC cream and provides a good barrier - it seems to be working ok. Any chance your Lucy could be seen by a wound specialist they may just have a slightly different perspective to the GI- in our case the GI had said to bathe the area in the bath but the wound specialist advice was to avoid the bath and to keep the area as dry as possible. Poor Lucy hope she is doing better today
 
Hi everyone
Been up all night with Lucy
With a fever of 39.5 plus
And she was seeing creepy crawlys
On herself due to such high fever.
Given GI till lunch time if not
Heading to A&E.
Polly your right my friend who is a nurse
Said don't bath it as you need too keep
It dry to let it dry out.i loose count of how
Many clears and pastes we have tried,
But this is the worst it been x
 
Hope the GI has called or you are at A&E getting things taken care of. Poor Lucy! Update when you can. Thinking of you both.
 
Just a quick update
We went to a&e and there keeping Lucy
In, they have put her on IV antibiotic
Pain relief though IV and fluids
They did bloods and it she was starting
To get dehydrated and she had infection
The number they mentioned was 67 for the
Blood test that showed infection, can't remember
Name. Anyway I've come home for a few things
And then staying the night at hospital with Lucy,
Not sure if I'm going to cope but have to be there.
Will try to keep you guys updated.
Thanks everyone
 
Take a deep breath and they will take good care of her and get the infection under control. Will be praying for you.
 
Hopefully she will start to feel better very soon now she is getting the treatment she needs.. Big (((HUGS))) to you both xx

:ghug:
 

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