The anti.
The girl was so upset on the day of infusion
a few weeks back
that I crumbled and sent an email to the paediatrician
asking for him to consider anti anxiety medication for Ivy.
I really wanted to ask him if he would consider it for the both of us
but I didn’t.
I need to find myself a doctor just quietly, I think.
He’d suggested it before and I had shut him down fairly quickly
because I wanted for Ivy to be able to learn coping strategies
and utilise her body’s natural defence mechanisms to her advantage.
Endorphins versus adrenaline and all that.
We tried, oh how we tried – visualisation, breathing, relaxation - everything
and I didn’t want to medicate my child in such a way that it might dampen her emotions
but on this day,
as she clung to my arm,
eyes large with fear
I thought;
who am I to keep that option from her,
she’s just a little girl dealing with way more than anyone can imagine.
When I talked to her about it
she said;
“I always try to be brave but the ‘scared’ just takes over me”
and I understood that
so I asked.
I said,
no rush -
it could wait until our next appointment
and thought that we had dealt with this for so long already
that a few more weeks would be doable
but
those few weeks have been tense
and sad
and fairly miserable for the both of us
and I have found myself bargaining with a tiny seven year old
who is skilled in the art of negotiation -
“Please, Mum, please. Not today. Today I want to just swim or sit in the sun or play with the sisters and feel happy”.
“Okay Ivy, we can skip infusion today, so long as you agree to having it first thing tomorrow”
and she would nod,
her eyes wide with innocence and a knowing that I was just as non committal.
What is tomorrow in the eyes of a child -
the perpetual promise of a new day
where today becomes yesterday’s tomorrow
and then the next day
and the next
until we are suddenly at the tail end of the week
and I still have 2400 grams of blood product to infuse into a girl who can only tolerate 800 grams at a time.
It gets done, of course
but it’s awful.
I sent him the email
and then Ivy landed in the hospital a few days later
and when I saw him he said he would think it through
and have a plan for our visit
which is now just over a week away.
I have thought about it often -
the coming appointment
where I will feel as though I am conceding defeat somehow,
failing her in some way
but in the same breath feel astonishing relief that I can actually do something to help the girl get through this part of her life
where every needle seems to her as though it has death dripping from its core
and every procedure is figuratively (and on some nights literally) a kick in the face
(mine, not hers).
What can I say?
When a little body is frightened they can be incredibly strong
and some nights I have gone away with a black eye
or a bleeding lip
feeling for all the world as though those were my just desserts
and a small price to pay -
all things considered
and I never hold it against her.
It seems wrong that I am looking forward to it almost -
that I am hoping for a concoction to chemically alter how my daughter reacts to her environment
but I am
and that is the horrible truth.
I want to change her
partially to make this easier for her
but also to make it easier for me.
I hope he has something ready for her – a plan,
a pill,
something,
anything
else I may not be able to entirely hold it together
anymore
and my resolve to continue with all of these needles
dissolves altogether.
Yes, Tiff, get yourself to your own doctor. Look after yourself as much as the kids!
Oh Tiff, I so feel for you. I hope the Dr can give Ivy something… and yes I would definitely see someone for yourself… I’ve just started taking an anti anxiety medication, I realised I needed something else. Always look after yourself.
The other thing we’ve recently invested in is called the Stress eraser. http://www.stresseraser.com.au
I have it for my 14 year old. Have a look at the website (I wont even begin to describe it, Im not so good with words), it might be great for Ivy. The cost was just over $200.
xxx
Tiff, I think that what you have decided is a viable option. You speak of the medication changing Ivy – well the fact is that the fear Ivy feels changes her from a sweet 7 year old to a terrified little person. The medication will make it so much easier for both of you and you both deserve some relief.
Yes, find a doctor for yourself as well but do this thing for both of you.
Sending kind thoughts xxxx
oh Tiff….hun……….there is stuff I want to say but don’t know how to say it so that it sounds right………….I support the decision of what you are seeking to do, I just fear that what I want to say will come out wrong…………..but hun you have to do what is best for that perfect little princess of yours & in turn yourself……big hugs hun {{hugs}}
Fear is a terrible thing and once it takes hold can manifest itself physically. It’s horrible and is very hard to get rid of. I won’t bore you with the details but I know. If you can spare her from it then do. xx
Tiff, I agree with the three above me. Research has learned a lot about stress relief, especially short-term, and that’s what I hear you asking for for both you and Ivy. Only thing i add is: it may help if you document for several days or a week+ until Ivy’s appointment and for certain for your appointment when you ask for chemical help: emotional reactions, coping abilities or not, sustained crying and sadness that’s not normal… . Using a regular paper and pencil/pen demonstrates the variations in your handwriting in response to what is happening internally as well as in the external pressures of being in hosp or home, it means you took time regularly to sit down and really think about your anxiety, pain and depression. Doctors love documentation to show why they have prescribed or done what they did. I’ve been in pain since high school pool accident and have found writing it down to be very helpful to my case many times over the last four decades. I hope I am making sense and not coming thru as didactic.
I have been in need of short term SSRI help at different periods during my life: son went to Gulf War 1 and I literally fell apart into sobbing lump for days on end until I got some medicine that helped a lot. Better rest at night can be attained too when our brain chemicals are brought into regular balance and better sleep equals so many good things in our family life.
I hope you get the help you need in a timely fashion. I send the Universal Healing Power to you and Ivy and wish for a good outcome and a sustained remission. Hugs, Little Brown Mouse.
oh Tiff, I never comment on your blog….never, but today I will. I recently made this decision for my Miss M. It was gut wrenching and traumatic making the decision, but it was the best thing I had ever done accepting the medication for anti anxiety. We tried it all as well, we practiced the situations (ours were different triggers and M has autism and different issues), we went to psychologists, tried different therapies, and in the end gave in and accepted the meds. We saw results for her on the first day. She went from having daily panic attacks (at 8 years old) to being able to cope with things, breath through them, and generally move on in life without screaming. I’m still not an advocate for medicating our kids yet, but I have to say it has helped Miss M get to a point where she can use all the things she has learned in the past 6 months and put them into place when she starts to feel anxious…. I feel your pain, and as an adult I’m the first one to advocate the use of anti anxieties to help get those chemicals in your brain in order, but when its your own child its much much different.
Well done mate xoxoxoox
btw… I’m on them too…. dealing with a child with a chronic illness and with other disabilities has changed my ability to cope…. so I stepped up and started them myself. I’m getting through the days much better now… the weeks and the hospital stays….
You sound like you really need something for you right now, I hope you are ok, and yes, go see someone just for you. I hope the Doc comes through for Ivy, I don’t feel like you should think you are doing the wrong thing. My son has Aspergers and takes meds to get him focused and get him through his school day. I struggled against it for a long time, we worked on his diet, seeing different therapists, diffferent programs, they all worked to an extent but as he got older and could explain how he felt…it ended up being the right thing to do. He knows he can focus and work to the best of his ability when he’s had his pill. He doesn’t take it all the time, maybe that’ll end up being the case for you, Ivy may be able to cope better as she gets older.
Hope this helps, wishing you some happy
Leanne H
PS Plasma donation worked after 6 mths, platelets next week
Is it weird that I get excited about that?
Pills all round luv
in my experience if a persons mental health is negatively effecting their quality of life it is extremely hard sometimes for the mind to let the body benefit from relaxation techniques even though it makes so much sense and you can’t figure out why it doesn’t work for you when it does for others…. The chemical imbalance of anxiety and depression needs a little help sometimes with a pill. I liken it to a really hot day when everything pisses you off and people just dont understand and your skin is crawling coz you’re so uncomfortable in the blistering heat … So you find refuge in the air con and you feel it all calm again so you are comfortable and recharge a little so you can deal with the heat again. Then with the right meds you can better adapt using the skills you learn. Highly recommend cognitive behavioral therapy (cbt). My go to thing when the anxiety starts to creep up on me. Really is no judgement or stigma these days. Zoloft and cbt worked for me at my worst. Off it ages ago but wouldn’t hesitate to go again if life was super sucky and still needed to get on with it. I would do it for my kiddo if need be too. Anxiety takes sooo much time and energy out of you…. Neither of which we have in spades nip that bastard in the butt and it will become just comfortable enough to keep going xo
Tiff, would you deny yourself or Dave or any of the kids a crutch, if they had a broken leg? Anti-depressant/Anti-anxiety tablets are like having a crutch while your leg is broken, so you have more good solid support which helps while you heal and more importantly deal with a broken limb. There is no shame in not having something, which when managed well helps you to cope with something that is a nightmare. I’ve been on a low dose for years and it has helped me to cope and manage and adjust with everything that PID throws at me. I can’t in fact recommend them highly enough because it will help you to live your life better and it will help Ivy to live with PID better. Looking forward to hearing how the tablets help both of you
As someone who has used anti-anxiety meds from time to time, here’s my take…
What happens when you’re in abject panic is that your brain’s chemistry overrides your ability to calm down, regardless of how well you have learned/attempted calming exercises.
Think of it this way — there is a reason for the “flight” response — if you’re an animal and being hunted (or a “caveman” and a tiger has come into the camp…) you WANT all that adrenaline, and you don’t want to be able to override it — you want to be able to use it to GET AWAY.
Because this is a different situation, and you need her to tolerate an infusion, the anti-anxiety meds calm the chemicals in the brain down enough to LET HER use her coping techniques. Right now she’s so panicked, that even if she wanted to comply she simply can’t.
{{{HUGS}}} and do talk to the doctor about it. She needs the infusions for her health. A single dose of a short-acting anti-anxiety med for the time it takes you to infuse her is different than “drugging her up.” It’s a focused, specific, goal-directed use of a medication that is designed for just those uses.
Michelle
Leanne H,
Am very happy to hear that your plasma donation was successful! You are truly amazing. Thank you for being a donor xx
Tiff i think it (to put it bluntly.. you know me) takes balls to admit that ok maybe im not doing so okay and need to seek some help…. good for you, been there myself over the years.. you do what you need to do to make it work!
Starting new medications is always a worry as its another drug into a little body.. but yes if she is indicating that she would like something to make it not so scary, i feel its time to research and explore the best option for her…as yes you have tried and ticked every other option.. and they can still be used too.
It doesnt have to be a permanet choice, its a trial… i hope you all find the right choice and it gives you all some peace on those horrible days x
What has to be done has to be done, but i dont think you should all keep struggling and suffering on those 3 needle days
I will always remember all the pain my heart that was out of rhythm due to congenital heart defect was going through. My body hurting my soul weary necause of the pain and the adrenalin. And than the immens relief brought by betablockers. I will rwmber the relief taht I had after two weeks without sleep at night dragging myself around wishing desperatly to somehow calm down and being able to sleep again. I took a sleeping mediacation.
Sometime we need this “drugs” to let our body relax and recover. I am so glad this prescriptipn drugs exist and I am able to live on without being in so much discomfort.
I hope Ivy will getnthe same relief.
Julia
Definitely explore the option of anti anxiety medication for Ivy, you’ve done everything you can to help her but she needs some extra help to cope. You are a wonderful mum and we know not taking this decision lightly. As for yourself been in a similar situation last year, which was a very difficult year for me. Struggled on, finally worked up the courage to speak to the doctor, I was so embarassed but she was so understanding. Referred to a psychologist, it did help but after a few months finally went on anti depressants. I felt so ashamed but I realise now how much it is has helped, the effects are very different to what I imagined. You still feel the same just a bit more level and balanced and you dont go down so low. I was worried it would turn you into a zombie – they dont. Good luck Tiff we are all thinking of you and supporting you.
Hi Tiff, I speak as someone in chronic pain (and other major illnesses), for 37 years. I have taken anti depressants for much of that time. When you panic because of the pain that just makes the whole thing worse, harder… From another angle, in addition to above comments you shouldn’t be physically hurt repeatedly for something that the little one needs so desperately. Also, Ivy lives with the fact that she injures the person who is always with her, her greatest advocate. Not a good place for either one of you. In no WAY are you failing your precious daughter. Asking for help, even if only for a temporary period, is NOT failing her. If anything it will show her the lesson that sometimes one need to ask for help.
What you can share with the doctors if not immediately successful is that they may need to adjust the amount of time that medicine is given before the time of needles for best affect. Is it possible for some medicine only administered on injection days, or does it need to be given regularly til she is able to calm herself?
You are being your usual wise self. You have a big heart. These injections are necessary for the immediate future.
Although an adult, I have mastered infusing myself at home, inserting catheters, monitoring infections, and knowing when to seek medical help for UTI’s when bacteria is always present. Its just what is necessary, and reduces time in hospital.
Take a deep breath, eat chocolate as necessary, and continue caring for all 9 of you. XXOO Barbara
Hi Tiff, I speak as someone in chronic pain (and other major illnesses), for 37 years. I have taken anti depressants for much of that time. When you panic because of the pain that just makes the whole thing worse, harder… From another angle, in addition to above comments you shouldn’t be physically hurt repeatedly for something that the little one needs so desperately. Also, Ivy lives with the fact that she injures the person who is always with her, her greatest advocate. Not a good place for either one of you. In no WAY are you failing your precious daughter. Asking for help, even if only for a temporary period, is NOT failing her. If anything it will show her the lesson that sometimes one needs to ask for help, or relief.
What you can share with the doctors ( if not immediately successful) is that they may need to adjust the amount of time that medicine is given before the time of needles for best affect. Is it possible for some medicine only administered on injection days, or does it need to be given regularly til she is able to calm herself?
You are being your usual wise self. You have a big heart. These injections are necessary for the immediate future.
Although an adult, I have mastered infusing myself at home, inserting catheters, monitoring infections, and knowing when to seek medical help for UTI’s where bacteria is always present. Its just what is necessary, and reduces time in hospital.
Take a deep breath, eat chocolate as necessary, and continue caring for all 9 of you. XXOO Barbara
It would not have come to this consideration without a need for a resolution. Having tried all other options without success, the time is now to seek some other help for both you and Ivy. Your coping mechanisms are obviously being worn down too, shown by your compliance to delay the necessary infusions required for Ivy’s well being. Even your recent thoughts for trialling off is another indication that you’re failing to cope with the stress involved in maintaining the required routine of medications.
This is in NO way an indication of failure on your part, but rather a sensible cry for help. Your body and Ivy’s is saying that this constant anxiety is enough already and you both need something to see you through. If it’s anti-anxiety medication that’s required to restore coping mechanisms for you both, then so be it, whenever or for however long it takes.
I am so pleased to read that you are FINALLY considering finding your own doctor and not before time, either.
A very wise decision! Whatever future decisions you make with regard to these issues, I say again, I know they will be the right ones if you follow those gut feelings and listen to your brave heart. xoxo
Hugs. One foot in front of the other Tiff. xx
You are all in my prayers. Others are right…you do need to take care of YOU. You are an important person, just as important as Ivy. And u have a great deal on your shoulders…more than any parent should have to bear. If u have made a well considered decision for ivy then trust yourself. Intrinsically u know what’s best for her and for yourself. Follow your instincts. Much love…
Hang in there. I really hope that meds can help Ivy. xxx
It takes a strong person to admit they need help.
I hope you find the help you need for Ivy and yourself.
Hugs
As a mum to a 7 year old who is seeing a Child Psychologist for severe Anxiety issues, I would say do what feels best for you and Ivy. My daughter doesn’t need medication, (at the moment), but we have a session every 2 weeks and we deal with panic and stress and obsessive compulsive traits daily. And this is WITHOUT the added trauma of sickness and pain involved. No child deserves to be in constant stress and panic, especially when in pain and suffering enough as it is. I think you are an amazing mum and do a fantastic job, and I also think that you have done so well so far with all that you have dealt with. If my bub needs medication down the track, I will give her the medication and not worry about what anyone thinks. (And I am in no way saying that you are worried what people may say etc, I am talking about the experiences I have already had telling people I have a child with anxiety issues). As mums we are supposed to do the best we can for our children, and it is very obvious that you are doing just that.
you need to do – & advocate for – whatever you feel is best for ivy. like you said, you have TRIED everything else. this is not your first attempt at easing her anxiety. & you also know that anxiety is perfectly normal. human. that it’s natural, & that ivy’s reaction to her treatment is understandable. & yet some things that are natural & normal & human are not so good for us. sometimes we need outside help, especially when we have exhausted all our internal energies. chat with ivy about it. let her have a say. she is a wise little girl. let her know that there might be some medicine that will make her feel less afraid. & that it is ok if she wants to try it. that she is still the bravest person you know & that trying new things makes her even braver.
from a personal experience, i have frequently been offered anti-anxiety drugs. but for some reason unbeknown to me, i have never taken them. which is not to say they wouldn’t have been of benefit…but i guess, like you, i wanted to develop ways to cope. i wanted to master my own anxiety, rather than depend on medication. the difference here, is that i am old enough to make that choice. i can cognitively grasp the concepts & make the choice for myself. but ivy? she’s so little. & her feelings are so big. sweet girl needs some help….& whose to say medicine might not help her?
as for you, oh i wish i could just come & give you a huge hug, make you some tea, & just TAKE CARE of you. you deserve some TLC. have a look into finding a doctor for yourself. but find one you want to have a continuing relationship with. you don’t want someone who will just write you a script & say come back in three months for review. no no no. that will not do. i’m not sure exactly how one goes about finding such a person, but i think it’s word of mouth. you want someone medical, but holistic. someone who will address the whole of you. no doctor is going to be able to erase the pain & hurt & the struggles in your life, but they can help you to feel connected & supported through it. you deserve that!
sorry for the ramble.
i care about you, & ivy girl, & the rest of your family.
you are always in my prayers.
xx
I was here. Trying everything but.
In the end it was what Boo needed and the change in him is miraculous. Now he is in charge of his meds because he knows they make him feel better and make the ‘tickle feeling in my heart’ go away.
Tiff, I have nothing more to add, just nodding my head manically at all the comments above. We all love you and Ivy, and feel that anything that lightens the all-too-heavy load on yours and that little girl’s shoulders is well worth exploring.
For reasons beyond my comprehension, my Dali-esque dreams last night included you and Ivy. In particular, I was helping Ivy to dress as a fairy, in bumble-bee colours. I was lacquering her up-swept hair that had some form of head-dress on top and the lacquer was a vivid, glossy red. And Ivy looked SPECTACULAR! And you Tiff, you were there, watching the whole thing and smiling.
Bizarre dream, but very nice. Have no idea what my subconscious – or guides – are trying to tell me, but it was a lot of fun! X
Oh, that makes me smile.
Oh Tiff. I don’t know what to say as usual. But want you to know I am here.
xox
I hope the appointment helps you both. I can’t imagine the fear she faces, and I think it is awesome of you trying to solve her fears a natural way first, but we do live in a modern world with access to some awesome medicines and if those can help her then I totally understand why you would get them!! I hope they work in a good balance of keeping her fears at bay but letting her sparkly personality remain
Not so long ago I admitted I needed the help and have my own doctor and prescription. After reading your heartfelt post and all your wonderful replies I’m thinking my 9yo son would benefit from anti-anxiety meds also, although his medical issues are not physical. His doctor has twice bought the subject up, but my partner is unsure, so we have been trying everything else. Now I’m thinking why deny him this type of help and am going to do some more research.
I do hope Ivy’s doctor supports you.
btw how wonderful was Watershedd’s dream?!
I happen to see you posting and it touched me so. We work with a device called Buzzy, it is a personal pain device that eliminates the pain from shots and IVs without drugs. It was developed by Dr. Amy Baxter, a pediatrician, who wanted to help children like yours.
Check it out, it works and it may be a great answer to your problem.
Hope it works for you.
Lori