It’s been a while since I wrote about S. health so it’s time for an update.
Just a week before her birthday we went for bladder and kidneys ultrasound (like we do every year) and the DMSA test. I wrote about it while back. It’s actually funny – I couldn’t remember what exactly that test is about so I looked it up on my blog to remind myself 🙂
(DMSA renal scan : a dimercaptosuccinic acid (DMSA) scan – where a child is injected with a slightly radioactive substance called DMSA that shows up on a special device called a gamma camera. This takes pictures of the child’s kidneys; after the scan, the DMSA will pass harmlessly out of the child’s body, in their urine.)
On the last ultrasound in June 2019 I noticed that S. kidneys didn’t grow at all compared to the previous year. I always ask what’s the size of them each time and compare them on the next scan. I know it might be a little bit over the average mums duty but can’t help it, it’s just the way I am – I like to know exactly what is happening. Maybe because it gives me the illusion of having some sort of any control? Not sure – anyway. I brought that fact to the attention of S’s urologist in February this year and he agreed to check this just to be safe. I asked for DMSA as it’s the best way to check what is happening with the kidneys. Last time S. had it done when she was only a tiny baby, she was 1 year old. We planned it for March but then the whole country went into lockdown and no tests were done. Now it’s a slightly better situation so we were able to do it.
The necessity of it is one thing – to get S. to do it it’s a completely different story.
As I wrote here over the years S. spent loads of time in hospital. From day 1 there were loads of check up appointments and even more visits in the A & E ( accidents and emergency) department. And unfortunately some were traumatic and they left S. with bad memories. The last blood test was just… I can’t even find words, its enough to say it was a day after her last birthday and 3 nurses had to hold her down to take bloods, no numbing cream, but trauma for ever…needle phobia joined the long list of S’s of unfair challenges that she needs to put up with.
So when I told S. she needed a scan she was already nervous, even though she knows it’s “just the jelly on the belly” but then a few days later when I mentioned she will need another test that includes Freddie ( IV line) she freaked out.
Why don’t you prepare your child for it ? I heard from someone…
Oh I did! I sure did.
Not only did we made a plan for the day, more like an A4 poster with colorful graphics, each time we achieved a part of the plan, we crossed it off.
Here is our plan (won’t post a picture as its crossed off now)
- TRAVEL TO HOSPITAL
- MAGIC CREAM ON ( it’s a numbing cream that is applied on the skin and half an hour later IV line can be put in without pain and tears)
- CHAT TO NURSE
- FREDDIE IN -> MEDICINE ( IV line is called in local children hospital “Freddie” so line in and contrast injected)
- FREDDIE OUT
- GOING OUT FOR A SNACK
- BACK IN HOSPITAL FOR A SCAN
- GOING BACK HOME
Having a plan like this is very important to S. and we learned in the past that if she knows some time before the event, what will happen, it helps her to prepare. She is still worried and nervous but she said to us she still likes to know in advance what is going to happen. Regardless if it’s just a check up visit or scan or something bigger – like DMSA or anything that include inserting IV line.
*Once, last year, I forgot to tell S. what the plan was, and just assumed she knew it was a check up, just a chat with a urologist / nephrologist / whoever we went to see, and only on the way I noticed she was very nervous. She was very sad and hanging on to my arm… until I asked why and explained what would happen. That day I apologized to S. and ever since, I made sure she knows whats the plan of the day.
So we had a ready plan, and night before the test (and most importantly / most scary –night before IV) S. had a chat with her play therapist. She was worried but knew it needed to be done.
A few days earlier we had a chat and she told me she really really really doesn’t want to do it but she knows it’s important. How mature is she?! (More than most kids this age I know). After every hospital appointment we go for ice cream, and after “bigger” appointments like scan S.get a toy she asks for or a surprise toy (something small just to reward her for being brave). This time S. asked for the Disney movie “Zombies”, I ordered straight away 😉
We even booked a trip to ZOO. I literally would do anything she could ask for – I truly would – because I knew it would be very very hard and stressful for S.
So the day came and S. was very nervous. We got to hospital and S. got the cream on her arms, didn’t like that and from that moment she was way worse nervous, but the worst came when we entered the room. Week earlier I rang the hospital and that S. has a needles phobia and it’s very hard for her, so they assured me that the IV specialist nurse will come to insert the IV line. And she did. The best one this hospital has ( you are a star Fran!). But it made no difference… when S. saw the needles she went… its not the best word but… crazy? If someone told me what happened I would never believe. It was so surreal… It’s like one minute you have in your arms this scared but sweet girl and in the next second you are trying to hold this obsessed demon or some wild animal… I can’t find words to describe this horror. It was heartbreaking and devastating seeing my child going like this. Fighting for life. If I didn’t know how important this test is I swear I would just tell everyone to back off and walk away, just to protect her, to make her stop kicking and screaming so hard she nearly lost voice and her throat was sore for 2 days after. I wish no child had to go through this. But instead I just tried to hold her legs and arms with my body and hands, holding her tight enough for a second so the nurse could place IV line. Once the needle was in, S. calmed down and stopped kicking… but my God… Even now while I’m writing all this (a few weeks later) I have tears in my eyes. Why am I telling you about it with all these brutal details? To tell you that NEEDLES PHOBIA is a REAL THING. And it’s not just a fear. It’s scary! A small degree of dislike of needles is perfectly normal – most people would avoid them if they possibly could. But this fear is heightened in people with needle phobia, to the point where they cannot bear the thought of injections.
After we left the hospital (had to go away for 2 hours so the contrast will travel to the kidneys) S. was shaking for at least half an hour. And there were no words I could say to make it better. I keep telling her the worst is over. But it makes no difference to someone who is so scared of it. We went to the park and playground, had snacks and S. got some gifts, we relaxed a bit and came back for a scan. That was the easy part. Believe me when I tell you, two of us were emotionally and physically drained for the next two days.
After the scan we went for lunch and while we had burgers I said to S.: ”I’m so happy it’s over, WE got through this”.
She replied (slightly annoyed): ”WE DID?! I DID”.
I cried inside. I’m still feeling emotional when thinking about this. SHE DID THIS. It was extremely hard for her and she wasn’t given choice, she was forced to do it and she did it. I might be wrong but If you are reading it, you are a parent, I think you will understand why I said that. At that moment I honestly felt WE DID IT, because It cost me a lot too. Obviously on a different level – but it was a hard day for me too. To support my child, to be calm for her, to make it happen without just shouting at everyone who is pushing my child to do it, to stick to the plan instead run away so no one hurts her… but at the end of the day, it was her mountain to climb and SHE DID IT! She went through this. She did it. She is only 8 and she is my hero.
I realize this post is a bit different than most in the past. The description of what happened might be too graphic but there is no other way to tell you what phobia means without making you feel uncomfortable. I usually try to keep the posts with positive message but that’s our life.
It’s not easy but me and my little fighter, we will deal with whatever comes next. As always -TOGETHER.
P.S. I don’t use hashtags on this blog but today I strongly feel like using a few…
bel·o·ne·pho·bia | \ ˌbe-lə-
variants: or less commonly belonophobia
Definition of belonephobia
abnormal fear of sharp or pointed objects (such as hypodermic needles or scissors) : AICHMOPHOBIA Do you break out in a cold sweat when it’s time for a vaccine? … If so, you might have belonephobia, the fear of needles
Fear of needles, known in medical literature as needle phobia, is the extreme fear of medical procedures involving injection
It is occasionally referred to as aichmophobia, although this term may also refer to a more general fear of sharply pointed objects
A small degree of dislike of needles is perfectly normal – most people would avoid them if they possibly could. But this fear is heightened in people with needle phobia, to the point where they cannot bear the thought of injections.
Needle phobia is common in the general population – some studies suggest the rate of occurrence is as high as 10%. When you consider that only 7% of the population have diabetes, it is evident that there are many people with diabetes out there having to contend with both!.
SYMPTOMS OF NEEDLE PHOBIA
The symptoms of needle phobia can vary greatly from one individual to another. The main feature is anxiety at the thought of injections, leading to avoidance of injections.
This may be associated with:
- feeling dizzy and light-headed
- a dry mouth
- feeling sick
- even fainting
WHY DOES IT OCCUR?
Although it can be difficult to be entirely sure what causes a phobia, the most common causes are thought to be:
- An upsetting experience of needles when young, for example, a painful procedure at the hospital or at the dentist
- A fear that has been ‘modelled’ by an adult close to the child, either through actual observation of their fear, or being told a story that implied injections and needles were very painful.
- There is also evolutionary value to a fear of needles. In the past, an individual with a fear of being stuck with a thorn or a knife was less likely to die in accidents or in encounters with hostile animals or other humans.
- Prior to the 20th century, even an otherwise non-fatal puncture wound had a reasonable chance of causing a fatal infection.
- So a trait that had positive survival value prior to the 20th century now has the opposite effect as it means people struggle to engage in valuable healthcare regimes.