Because I want those lumps to go away.
Last week on Thursday, I put Ivy on flucloxicillin for the abscess-lumpy things in her chest.
I put her on it because the immunologist told the paed who told me I had to
and because I want those lumps to go away.
Flucloxicillin is an antibiotic that makes Ivy vomit
and so the paed prescribed Ondansetron to help with the nausea.
Another medication to counteract the side effects of the first.
It seems to be what we do.
The paed said we had to try this before we moved onto the next plan
and so we did.
I doubled her prednisone in anticipation.
Thursday night was not fun.
Not only did the girl vomit but the anti nausea medication caused her heart rate to drop.
It was the same on Friday, although the vomiting was less
and as soon as her body was rid of the sickly sweet syrup she could eat and take her other medications.
Our one saving grace.
On Saturday, I tried – at the insistence of the paed and the pharmacist, to coerce Ivy into taking a capsule of the same medication,
and when that failed, I tried to give her the powder from the capsule mixed in with jam.
The girl held it in her mouth for a few seconds and then gagged.
She said it made her mouth feel tingly.
After several failed attempts
I put her back on the syrup and the ondansetron and dealt with the vomit
and with the low heart rate and the dizziness.
I was scared by the reaction that night.
On Sunday I called it and put her back onto her old antibiotic regime of Bactrim and Keflex.
On Monday I talked to the paed
who asked me to pay an insane amount of money for dicloxicillin capsules to be compounded into a syrup
and I agreed to that too.
He asked me to half dose Ivy on the Ondansetron and then go see him.
We saw the paed today, ‘the not sick enough for hospital but too sick for school’ girl and I.
He missed her impressive dizzy, bradycardic spell by about an hour but I recorded it on my trusty ithing.
So he watched her drop her bundle anyway, just remotely instead of in person.
I like evidence.
When you have evidence nobody can say you made it up.
He agreed we were not getting anywhere fast but he still wanted us to try the compounded diclox, with 1/4 of the ondansetron tablet for the next 48 hours
and still I agreed.
I don’t know why I can’t express the way I feel about putting Ivy through another course of oral antibiotics to the doctors.
For the last six months we have dealt with weight loss, gut issues (and by gut issues I mean diarrhoea), extreme tiredness and vomit
Out of the six weeks of term Ivy has perhaps made it to three, give or take a few days.
Her quality of life is not wonderful
but it’s not awful (and by awful, I mean emergent hospital admission worthy).
It’s just been a slow, exhasuting, all consuming slide into the darkness of ill health.
I feel sad for Ivy that she has a mother who forces medication after medication into her little body and then counteracts that imbalance with another medication.
I feel sad that she feels sick and ordinary all the time.
It can’t be right to feel that way when you’re six.
I cried all the way home from the paed’s rooms, while the compounded dicloxicillin glared at me from its brown paper bag
and Ivy slept.
Another thing that isn’t right – a six year old shouldn’t need to sleep all the time.
If they had been out running or swimming all day, then sure but not like this -
not in a way where she is up for a couple of hours before she is too worn out to function.
I want this to be over.
I want to move forward instead of retracing our steps over and over again.
I want (and Dave wants too) to move onto the next stage,
which would mean IV antibiotics
and a PICC line
and having to deal with the infectious diseases doctor again
but it would also mean that Ivy would get a break from all of the side effects.
Well, not all
but most.
There is risk, yes but perhaps the focus shouldn’t be on the risks any more
but rather the overall benefits for the girl -
like being able to go to school
and feeling at least a little better
instead of nauseated all the time.
Is it so wrong to wish that?
What is quantity of life outside of the hospital without quality anyway?
Im feeling all your mixed emotions and yes at the end of the day, whatever it takes, we have chosen to give keira-lee as much quality of life, social intereaction, opportunity to progress! this has meant 3 new drugs on top of the 5 already, the strict weighing, counting and making of her special diet, the constant daily monitoring n recording…. but has been worth it, seeing her walk for 5 weeks straight, 1st time in 3 yrs, to see her speak, smile, play n learn…..
I hope ivy gets a little bit more of life, few more happy n well days coming her way! xx
Thinking of you and feeling very for Ivy – I had no quality of life for 16 yrs before I was diagnosed with PID. I wish it was as simple for Ivy too. Have you asked the Paed about quality of life for Ivy? That said, I guess that you have. It quite simply sucks.
This made me sad to read and I just don’t know what to say.
I hope they can sort miss Ivys medication out and make her feel a bit better she is such a beautiful little girl and such an inspiration to all u both are xoxox
I would be sad too, it is your call and I think your mind is made up – the benefits over the risks – has got to be better for Ivy. Praying for brighter and better days ahead for you all.
I agree with Trish – just sending hugs today and I hope that’s all right. xx
Of course you would do anything to put more smiles on the face of your gorgeous girl. You are so incredibly brave. I hope it makes you feel a tiny bit better to know you have so much love and support from your online family xx
The choice between a rock and a hard place, is hardly a choice.
I understand how bad you must feel – you feel cruel Inflicting all this horrible stuff on Ivy especially when you disagree with it in the first place. I guess all I can do is pray for you, for Ivy, for David, for all the family that someway, somehow a ray of sunshine and glimmer of hope shines on you soon. xxxx
Have you tried something ilke this: http://www.amazon.com/Oralflo-RC-01-Pill-Swallowing-Cup/dp/B000NJJ3C4/ref=pd_bxgy_hg_img_b
Paed clients at a mental health clinic where I used to work found them helpful.
{{{{hugs}}}}
Dear Tiffany,
when I was five years old something went wrong with my blood cells. I had too much of them. I had lungbleedings and nosebleeds leaving me in puddels of blood. My doctor prescribed me Iron in liquid form. It tasted like rusty nails, hurt my tummy and made me womit. I dreaded every morning, when my mum would try to give it to me. In juice ind appele sauce etc…
It stopped when I insisted that my mom had to try take it herself. She could not take it. She stopped giving it to me. Not only made it that I felt sick in addition to loosing blood, it caused my stomach to eat itself from the inside and bleed. Hurt like hell. Turned out that it was the entirely wrong medication. The problme was not my iron defecit it was my wrong blood cells and the imbalance between liquid and not liquid parts of my blood. They had at first to take some of my blood away and give me blood thining fluid before I got better.
I think, Ivy or at least her body knows, that this is wrong. Please listen to your instincts. I know it is bad if your doctor seems to run out of options but I guess I just had not searched hard enough yet.
Sorry if this sounds discouriging but I since I felt really “tortured” by those things as a kid, I am a little strange towards doctors who seem not to think hard enough. I have a great and kind doctor. And even though I am 38 years old I am still at the childrens doctor because no one else seems to know how to handle my congenital heart defect and all the issues that come with it.
Best wishes to Ivy
Julia
Hi Julia,
Wow. Thank you for your comment from your perspective as a child. Hearing it like that puts everything in a new perspective for me too. Ivy is not very verbal about what she thinks of the medicine. She usually takes it because, I think she wants to please me. *Big sigh* She is my girl, after all and I know I’m the same. I always want others to think best of me but reading your comment compounds what I already know in my heart and that is that Ivy is struggling. If anything your comment is the opposite to discouraging. It makes me want to fight harder.
Tiffany after your comment I wanted to put my comment that I did after you talked about the immunologist and how he did not really help Ivy again.:
Julia:
February 24, 2012 at 17:41
Dear Tiffany,
I write to you, because of your post regarding the immunologist. I write my comment here because the comments to this post are closed (and I can understand why you did so).
But I think it is important to tell you (and maybe your husband and the f- ing immunologist that I think you are right. Right in the way you are dealing with Ivys disease and right in your anger and upset towards the doctor.
Why do I think I am entiteld to do so? Well I am not a mother myself, but I am a long time surviver of a congenital heart disease. I am 38 this year and at the time I was born no one really new about my heart defect and they (doctors/cardiologists) only gave me a chance to survive for my first two years and in addition told my parents that I would always remain little and with very little cognitive abilitys.
My parents acted like you. They searched for a way to help me. They could not stand to se me suffering and wrestling with every breath I had to take and getting infections and having lung- and nosebleeds. I live in Germany and not only did my parents do everything to keep my as healthy as possible. They researched and researched (remember this was the time before internet) the went into librarys and wrote to clinics in the whole world.
I underwent open heart surgery in the Mayo Clinic in Rochester Minnesota. Since than I had three more open heart surgerys. I have a lot of difficulties and have to take 17 pills daily. I had my tonsils removed, my gall bladder too, I still sometimes have lung bleedings, had nose surgery, had Stents put into my heart and coils in my bleeding lungs.
But I too have finished highschool and studied. I have a drivers licence. I am working five hours a day and earn my own money. I live in my own flat.
First my parents had to fight to get me the right treatment. Lately I had to fight for my health by myself. The first time own of my artificial arteries closed nobody believed me. I hurt for more then 3/4 of a year before they did stent it.
Nobody thought about me keeping water in my system and I gained a lot of weight in a short time and nobody new how to help me. Until I treated myself with more of my waterpills.
Today I have a very well trained doctor who listens to me, believes me and tries to help me. When I call my cardiology clinic they always new, that the situation is urgent. I am always right if I feel that something is wrong in my body. And now I will always get immediate help and everyone believes me.
I feel safe now and can lead a relative relaxed and painless life in between my ill times.
It was a long and hurtfull journey to achive this.
But one day it worked out. (Now the only thing that has still to be cared for is my hurt soul – therefore I am in therapy).
I encourage you to go on fighting for Ivy! Please show this comment to your husband and the doctor.
Doctors are not always right. I am the living proof.
Best wishes for Ivy
Julia
Hugs again for Ivy
Have you tried seeing a homeopath? I strongly suggest you to see a good homepath. I know it may seem too simple of solution for such a complex case such as Ivy’s, but it could work like magic at times.
Sorry, I’m not trying to tell you what to do, but it something I have had great results with and it is sometimes underestimated.
Maryam
It is so hard to fight to be heard some times. <3 sending you so much love <3
The sad thing is that both Ivy & you have had to suffer so long with all the experimentation with continued & different medications & surgery, only to come full circle again.
But you are right again, of course, and Ivy’s quality of life has to have equal consideration. xoxo
So sorry Ivy is going through another bout of illness. I know what its like to have to take a medicine to counteract the effects of another med.
Its not fun, even for a (so called) adult. But don’t feel that you are forcing meds on her that make her sick. Try not to personalize it. You have told anyone who will listen how you feel about the whole situation. It is what it is. You are trying to get her better, and fighting for her every step of the way. NO ONE could do more. Just get her through it as best you can. Any more word about when she can start the growth hormones? Poor little love needs to gain weight not lose it. Love to all, especially you and Ivy.
Oh Tiff, I wish I had a fix-it wand. Also, ARGH.
Love to you.
Hi Tiff, it’s been a while since I’ve been over to visit your blog. But I just wanted to say my thoughts and prayers are with little Ivy. x
Tiff,
The mouth tingling with the medication kind of scares me. That could very well be signaling that Ivy is allergic to this med, and the doctors need to be listening to that…..if this med is causing stomach reactions, and mouth tingling…..I would think that is an allergic reaction. To keep forcing it on her (and I know thats the dr, not you) is kind of asking for some emergent allergic event to happen, like anaphylaxis. Mouth tingling is frequently the first sign that the body is allergic – I know that if I touch latex with my mouth, or any fruits related to it (like kiwi, etc) that is exactly what happens.
I wish a magically perfect medication would appear, with no side effects, that did the job that needs doing. You are doiing a good job. You are a good mom.