Negative association / over reaction?

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I was just curious about other parents kids and how they react to negative situations and if it affects them when similar situations come up, I don't know if this is necassarily an aspie thing or if all kids react like this sometimes because I don't have anyone I can ask.

Anyway my 6yr old daughter is currently undergoing investigation into her re-occuring UTI's, first stop was an ultrasound scan to have a look at her kidneys, she loved that, the waiting room was great because it had lots of toys, the scan tickled and she was fascinated with the whole thing...so positive experience.

Next was an appointment with a paediatric urologist, even better waiting room with hundreds of toys, games consoles, it was more or less a play centre with some doctors rooms attached. She didn't mind having her blood pressure / temperature taken and she quite liked the doctor / nurses and again positive experience.

Then she was sent for a DMSA scan(they inject a radioactive substance into you that then shows up later on under a special camera). We were given numbing cream to put onto her hands and inner elbows and some clear plasters to put over the area to keep the cream in place...so far so good. We get to the hospital the nuclear science dept. waiting room is a bit boring compared to the rest but she amused herself with some books and the few toys there. We had pre-warned her that she'd be having a needle, I explained fully to her everything that was happening and why and she seemed okay about it. We were called in and she laughed and joked with the nurse and then the nurse started pulling the plaster off her hand....she doesn't like having plasters(band-aids) taken off, she says it hurts so I had forseen her getting upset over that and I told the nurse who then agreed that my daughter could take them off herself at her own pace(my suggestion). 5 minutes of slowly peeling and the nurse became inpatient and just yanked them off...and then the crying / screaming started. By the time the nurse was ready to insert the needle my daughter was so hysterical and tensing her arm and pulling etc etc that a second nurse had to be brought in to pin her arm down to keep it still. My daugter was in full on screeching crying mode, telling them to get away from her, trying to lash out, pull away etc. They jabbed the needle in assuring her that it wouldn't hurt because of the cream but she screamed even louder shouting at them that it hurt.

Then the nurse injected some salt water and was happy the needles was in right, in the few second between swapping from salt water to the radioactive stuff my daughter had managed to squirm enough (even though a rather large nurse had her arm pinned down) so that the needle slipped slightly. The radioactive stuff went into her tissue creating a big lump and alot of pain, to make matters worse my husband at that point fainted so they wheeled him away on a bed. The nurse began rubbing the lump on my daughter's hand trying to get the stuff to move into her vein(so more pain for her). An hour later and my husband and daughter were sitting side by side both on the verge of fainting any second, my daughter sobbing and rocking back and forth saying she wanted to go home. We'd promised a trip to build a bear but she didn't want to do that or get any toy she just wanted to go home and kept reapeating over and over "I want to go home, I want to go home, I want to leave, I want to go home". She was put under the camera half an hour later to see how much of the stuff was in her hand, too much had gone into the tissue and not the vein so they had to re-schedule it, so all in all a very negative experience.

After back and forth with the hospital trying to get her some kind of sedation for the next one they agreed to a cannula(so the tissue thing didn't happen again) fitted by the paediatric nurses, the numbing cream and as much entonox as she needed to get through having the cannula fitted. Again she seemed okay with it, a little nervous but overall fine and quite excited about having the 'laughing gas'.

So we go back and a "play specialist"(her actual job title) went through everything they'd be doing with her, showed her how they'd fit a cannula using a teddy as a patient, let her try the gas before everything and she picked out a dvd to watch whilst it all happened too..again she seemed okay. We had the same problem with the plasters again, she wanted to remove them herself, the nurses were great and let her peel one off herself, then after 15 minutes of coaxing she agreed to let them look at her hand to see if it was suitable, but she was already becoming upset so she had the gas and zoned out to harry potter whislt they fitted the cannula. She didn't even know they'd done it until they were half way through bandaging her hand up, afterwards she was lauging and joking with the play specialist and was completely fine about everything.

Then we got to the nuclear dept and were greeted by the same nurse as 2 weeks prior, my daughter's face went from this to this in a milisecond, she grabbed hold of her dad's hand and hid behind him. We went into a side room and the screaming / crying began about 2 seconds before the nurse even touched the bandage. She refused to let that nurse remove the bandage luckily the play sepcialist had come with us and she took it off. Anyway it was more or less a repeat of what hapened the last time, she was hysterical and cried all the way back to the kids ward.

Then it got worse, they needed to remove the cannula, it should have taken 5 minutes it took over an hour because she was so scared and crying so much she couldn't breathe the gas in properly. So another negative experience and the head of the kids ward said in her 15 years working there that it was the worst reaction to a cannula being fitted/removed that she'd ever seen and that our daughter needed help. So we went to the doctors telling her everything and i'm still waiting to hear back from the children's mental health team.

So we thought she was over it, but if you mention anything to do with hospitals, needles any kind of medical procedure she covers her ears and gets upset telling you to stop. So eays solution don't talk about that stuff, then we had today's incident....

My mother in law was taken in today to have surgery on her hip, we went to visit and my daughter was a bit off but chatty and showing her granny her calligraphy work (think it may be a new obsession). Then a nurse came in to check MIL's blood pressure / temp, daughter freaked out covered her ears and hid near the door and after that she kept saying she wanted to go home, she wouldn't speak to her granny she just sat and stared into space or talked to her teddies...unless we asked her about her calligraphy or her new monster high backpack(her big obsession is monster high). Then after 20 minutes a doctor came in to check something about medication, daughter hid behind my husband and became really moody /shut off again. Then another nurse came in 5 minutes later for the temp again (MIL had only been out of surgery for just over an hour) and my daughter did the same thing hid in the corner covering her ears and pressing her face up against the wall. As soon as the nurse left she ran over to me and pulled my arm and said she wanted to leave(but we couldnt' we hadn't been there very long so I said we would in a little bit). She became more and more irritated and kept saying she wanted to go and then she just stood near the door cuddling her teddy. Then a woman serving tea/coffee came around and daughter was fascinated with the machine because it said kenco on the side and she kept saying over and over that it said kenco and that they only serve kenco nothing else and she thought that was hilarious. Another nurse came in to check the fluid bag and that was it, last straw for daughter and she started crying and saying she wanted to leave and again covered her ears, so we left.

So long winded I know but is this a typical reaction or do you think she's having more of a reaction because because she might be on the spectrum?. She also kept saying she felt dizzy, that's her new way of describing things that are overwhelming her. She's not diagnosed because my husband is against it at the moment, he thinks she hasn't got Asperger's (but is in complete agreement about my own self-diagnosis) so doesn't want her tested (at least not until I have a diagnosis). Now with this extreme reaction to medical situations and her referral to the children's mental health team should I mention that I suspect asperger's or should I see what they say?

I have a meeting with her teacher on Tuesday as well and wasn't sure whether to mention it to her because my daughter is having increasing problems in school. She comes home and says she can't concentrate because of the noise or she feels "dizzy because of it". Today she was told off because she'd written her own penguin story instead of copying the one from the book, she had misunderstood what the teacher had said, but in her words "I didn't know we were supposed to do that, I was having one of my dizzy times because of all the noise so I didn't hear". She also gets into trouble sometimes because one of her friends is very touchy feely and often tries to hug her, my daughter hates hugs and avoids them as much as possible so when he friend tries to hug her she will run away or push her away and then they argue, then they both get into trouble.

I don't want to jump to conclusions and just go in and say to the teacher or mental health team that I think she has Asperger's but she has so many traits and I think really she's getting to a point where she needs diagnosing to get help.

I'm not a parent, but this reminds me of a story from another parent (http://blog.pigtailpals.com/page/4/) who's daughter had a bad experience with medical staff at the age of five. As far as I know this little girl is NT.

Her mother is an advocate for many things and had a list for other parents at the end of her post about her children's visit to the doctor.

I think that your daughter was hurt by the nurse that took her plaster off too quickly and had her pinned down. Your little girl seems to now think all doctors may be like the nurse that hurt her.

I think you should have stopped things when your daughter got upset with the nurse before the needle and make it clear that the doctors do not have more authority over your child's body then she does. The nurse was not respectful of your daughter's needs and should have let her take the plaster off herself like the play specialist did later.

If you know any one in the medical field that your daughter likes maybe they can talk to her about what doctors do and why as well as perhaps let her visit them at work and see that doctors can be nice. A vet would also work. If you don't know anyone like that talking about what happened if she will and making sure it wont happen again can help. Let her know that Mom and Dad will protect and stand up for her in these kinds of situations and then do it. I may be biased since I did kick a nurse once (pre-diagnosis) over getting a shot in the leg when I was a preteen due to the vanes in my arms being too small to use. I have never forgotten how horrible that was for me and how betrayed I felt because my mother just sat by and let the nurses hold me down and stick me when I was crying and yelling. It's been ten plus years since it happened and I was much older than your daughter and didn't blame the medical staff for what happened. Instead I blamed my mother for not stopping them. Of course I'm the sort that remembers bad experiences more the good ones and dwelling on them for whatever reason always brings my mood down.

The mom your story reminded me of posted this list to advise parents on how to help their kids with doctor visits(The list is also at the end of the blog post I linked).

There is nothing abnormal in your daughter's reaction to the hospital visit. That one nurse hurt her, and then called others to help pin her down to do more painful things to her. Her acting up is perfectly natural for any child in this situation. In future, you need to keep her from being manhandled like that, and put a hold on procedures if things are getting out of hand. I also don't recommend taking her to visit friends or relatives in the hospital until she is older, and has had time to get over this bad experience, and to get to understand the benefits of medical care. She needs to put a little time distance behind her before she is ready for visiting relatives there again. Unfortunately, she may need medical visits of her own in the mean time.

As for your daughter's sensitivity to loud noise, feeling overwhelmed, and strong dislike to being touched, this does sound like she is on the spectrum--probably at the Asperger's end of the scale. She sounds too high functioning to be classic Autistic.

I would agree with questor to definitely not take her to visit anyone else in the hospital, she doesn't need to be there. Either you or your husband could stay outside with her while the other one visits. Thanksfully we have not had to have any such procedures with my DS. I felt so bad about getting him the flu shot a couple years ago that I haven't gotten those again. Wait as long as you can before she has to see another doc and then see if you can make an appt for just a well check with a doc she knows where the appt won't require anything more than the doc just looking her over. She may be able to learn that not all medical experiences are as scary as the ones she has experienced but it will probably take some time. I am so sorry that you guys had to go through all that. Sometimes I wonder how these medical so-called "professionals" can forget their own very first rule - do no harm.

Your daughter was treated terribly by that nurse. I hope when the Head of Dept told you about his concerns about your daughter's behavior that you also informed him about your concerns about the nurse's behavior.

I don't know how NT children would handle this, but I can say my HFA son would have been the same way.

Our first pediatrician had major concerns about his behavior at check ups (vaccines in particular.) They were not tolerant or understanding of him even as an infant. I thought it was totally logical for him to be upset at vaccines because he was a baby, didn't understand they were necessary and they hurt. If someone hurt me and I did not understand why, I would be upset, too. I had different concerns that they poo-poo'd, so in the end they minimized my concerns while I thought they were over-reacting to what was inconvenient for them. Not good.

What I would say, in hindsight, is that if a medical professional thinks your child is an "outlier," that you have a reason to be concerned because anything that deviates substantially from the norm could have causes that you need to know about. That said, it has to be looked at in context with everything else. Having an over (or under, or mixed) sensitivity/reaction to pain with a corresponding behavioral response is certainly a component of ASD. It is one component and the rest of your concerns should be added in when you make your decision about seeking a diagnosis.

I do want to reiterate that that one nurse was atrocious and they should never had your daughter interact with her again. I agree with the other folks that you should keep her away from medical facilities unless she needs to go to one for her care. I also think that in future you should tell the provider that she has fears relating to procedures she had done and that she will need TLC. Then make sure she gets it, even if you have to ruffle feathers.

I do think her reactions to sounds are spectrum-like. I am curious (because I know this stuff can be touchy) as to why your husband wants to hold off on her diagnosis until yours is finalized. It is much easier to diagnose a child and she may need supports at school, that she may not get without a diagnosis.

This is basically my thinking about the whole thing......though I have to add sometimes hospitals can still be disturbing places for kids regardless of any toys, movies or colorful wall-paper and undergoing a bunch of medical procedures would be exausting to any kid especially one with autism. I remember when I was a kid I had a bunch of blood tests and crap done and usually I did fine but I had one incident where I freaked out about the needle.....I think I was just burnt out on having it done so many times.

But yeah the nurses where pretty gentle about it, they ended up having to use some force but not roughly they didn't rip band-aids off without giving me any time to recover then have two nurses roughly grab me and hold me down on a table while they jammed a needle in. So I don't think there is anything very abnormal about how the kid reacted.

Ive actually been on both sides of this. I had a lot of medical procedures and urinary tract issues, including kidney reflux, I just posted about this on another thread. I had the same procedure done as has a couple of my kids, its a genetic thing with a valve in the ureathra. I was also a nurse (an MA and a Phlebotomist). I agree that the nurse should have let your daughter peal off the tape at her own rate and it was wrong of her to rip it off but I can also tell you that sometimes nurses get really nervous having to stick kids so it will only make things worse to berate the nurse or maybe a phlebotomist who is trying to get your kids blood while they are squirming all over and the parent is telling you that you dont know what you are doing. Getting a little vein in a chubby little arm is like shooting in the dark and having someone verbally attacking you at the same time is not helpful. This is also not your fault as you were not prepared or expecting any of this. Dont play the blame game just find a plan of action for the next time because you never know!

From now on tell the nurses that your daughter is allergic to tape and if they need to use any form of tape to please put something over the needle or whatever and then use cloth tape or if they have to use the sticky tape to make sure as little of it as possible to touch her skin. Paper/cloth tape does not stick as much and it does not hurt or irritate your skin, even better ask for co band, it is a piece of cloth looking stuff that sticks to itself and not you but it will hold things in place, it also comes in pretty colors....I also have this problem with tape, you can stick me all over with needles but not the tape! HATE IT! They did NOT need to put tape over the lidocaine cream, it would have worked just as well if they laid a wash cloth over it or nothing at all for that matter. Also if they didnt want the IV to hurt they should have gave her a few pokes with the tiny needle with novocaine to numb under her skin as well.....then they could have readjusted the needle without pain. Some people with autism have issues with numbing medication, it doesnt work at times. My dentist has to put so much novocaine in my mouth that it is hanging open in the end because I can still feel the pain. They should have given her an oral sedating medication that would knock her out for a few minutes and then numbed her arm with novocaine and put the IV in when she wakes up (sometimes they flail around when they wake up so its better to wait plus this gives the novocaine more time to work) she should not feel the needle at all, and you could tell them to go ahead and overdo the novocaine because she has a tolerance to it, it wont hurt her to give her more, better safe than sorry. I recently had novocaine put in before an IV, they told me they started doing it for everyone having surgery.....it was crazy, I didnt feel a thing and IV's can hurt especially if they have to be readjusted or if the medicine infiltrates (go into) the skin like what happened to your daughter, that is very painful and I dont know why the nurse was trying to move it around, that was fruitless.

She obviously now has post traumatic stress from this situation. If she is going to have a procedure again she needs a small dose of valium or ativan (make sure everyone who touches her or gives her anything knows how much valium or ativan you gave her) before even leaving the house, she may be limp and tired so make sure if you cant someone who can carry her will come or get a wheel chair and some nurses, then do the things I mentioned above. DO NOT let anyone bully you, including doctors and nurses. Like telling you that this only hurts for a second or she will be fine, bla bla bla. Tell them this is your child and she does not need anymore trauma and stand by your plan. You may want to use a MP3 player and earphones when possible if music calms her....prepare her as best as you can but not too early as she may fixate on it. Tell her the medicine is going to make her feel good and they are going to put better medicine in her arm when she is asleep so she wont feel anything. Also tell her not to look...some kids, if they have been traumatized, even looking will be enough to upset them regardless of if they feel it or not.

Also your daughter sounds as if she has ASD and I would have her assessed. Im sorry this happened to you....as a person who worked in the medical field I feel especially bad. I always took my time with kids who were scared it can mean good experiences the rest of your childhood or even your life to trauma and fear. My 21 year old is still afraid of needles because she had her blood drawn, they had to readjust the needle and poke her twice and on the second poke they got her vein and she was happy until they realized there was a hole in the butterfly tube so they had to take it out and stick her AGAIN....that was enough to scare her to this day. I was not angry but I was scared because they thought she had leukemia, thankfully she did not. My daughter asks for novocaine injections as they are not as painful as a readjustment with an IV needle without it being numb inside and out and she does the valium before leaving the house....she had a lot of stomach and intestinal issues. Lots of procedures around the age of 17 and 19.

I was the opposite, I ended up working in hospitals and loving it.....hated offices though, I could not handle office politics and seeing the same people every day, most of whom I did not like .
I hope your daughter overcomes her fear, with me a good patient nurse helped me, and I hope you have no issues with having her assessed.

Also, as I side thought, I disagree with not taking her to see relatives in the hospital. If she is close to her grandmother and she may not be coming home this could be difficult and she may feel badly or angry that she did not go to see her. You just need to make a social story about how we are going to the hospital to visit with Grandma not to have anything done to her. Put in pictures of doctors and nurses and keep the story geared toward, no one is going to do anything to her, she is going to visit and if a doctor or nurse comes in its for Granny and not for her. Also next time you daughter has a procedure, leave your husband out of the room !

Is your child diagnosed as being on the spectrum?

I'm not sure if you are asking how to help a kid on the spectrum or asking if anything in this situation is symptomatic of autism. For the former, I would say this: kids on the spectrum have notoriously picture-perfect clear and long memories, especially for bad experiences.

For the latter, hospital stays are generally memorably negative experiences for anyone, and everyone reacts differently to stress. I wouldn't look to a child's reaction to an unusual situation as a rubric for their development or state of mind.

Thank you all for your responses.

EB - My daughter is not afraid of doctors or assume the worst about them, when we took her to our local doctors to see about getting a referral to the mental health team she was fine then, joking with the doctor about things and had a smile on her face(until we specifically mentioned the procedure as soon as we stopped her mood picked up again). When she went for the second attempt at the DMSA scan she was fine with all the staff on the kids ward, as I said when she was having the cannula fitted she was scared and crying but she concentrated so much on her breathing and the dvd that she didn't even know they'd put it in. Straight after she was laughing and joking with the play specialist and was perfectly happy. It was only when we got to the nuclear department and she saw it was the same nurse again that she became really upset.

Thinking back maybe I should have asked them to stop but I'm not good at speaking up and it all happened so fast that it was over before my brain could really kick into gear. For the most part I was pinned into a corner (small room) on the verge of a meltdown because of the noise and smell and general chaos of it all and I will admit it took me a few minutes to snap out of it.

The nurse initially let my daughter start taking the plaster off but after about 5 minutes she became impatient and said she'd have to do it and just grabbed it and pulled (she held her skin taught to try to minimize the pain). The reason a second nurse had to pin her arm down (just her arm not her whole body, she was sat on my husband's knee) was safety, because she was squirming so much they had to make sure they got the needle in right first time and same with the radioactive solution, it's not something you can just keep trying to inject until you get it right. So although I don't agree with how they went about it I know why they did it because they had to get the stuff into her as fast as possible.

The play specialist really was an amazing woman she explained everything to my daughter and told her she would not let them do anything she wasn't ready for. That's why it took us so long the second time because the nurses let her do her own plaster, didn't fit the cannula until she was ready(i.e off her face on the gas), they even loosened the plaster using special wipes that dissolve the sticky solution.

I'm really sorry to hear you feel so betrayed by your mom EB, unfortunately parents have to do things they'd rather not, when my daughter had her last shots(2 years ago) she cried and begged us not to but she had to have them, it was a split second of pain and about 30 minutes of crying after but then we took her to get some new toys to hopefully balance out the bad with some good.

All the stuff mentioned in your quote we already do, we explained to her many times what was going to happen, why and that she would have a treat afterwards for being brave with the pain, right up until the point the plaster was pulled off (with the first appointment) she was completely fine, nervous yes but otherwise okay.

Questor - There was no choice about putting a hold on the procedure, she had to have the scan done as she has significant scarring on her kidneys and they needed to find out how bad (she may need an operation, a kidney out or just antibiotics for a while but they need to know what they are dealing with). As I explained above it all happened so fast that there wasn't really a chance for me to say hang on can we slow down or do this or do that(which I'm not good at anyway) and I understood that they had to get it right and the reason the second nurse had her arm pinned down was to try and avoid what happened with the radioactive stuff going into her tissue.

I asked my daughter if she wanted to visit her granny and she said yes so we went again yesterday and it was completely different, when we first went in there was a nurse and my daughter panicked slightly grabbed my arm and said she didn't want to go in. It was the nurse who calmed her down and said it was okay she was just taking her granny's temperature and she even let my daughter do it for her. She was fine after that apart from being a little wary of her gran's cannula (she passed her something but half threw it at her so she didn't have to go too near the cannula).

Bombaloo - She's been back to the docotor already and as I mentioned she was fine apart from when we discussed the reason for the visit. She has another appointment at the hospital with the paediatric urologist which she is actually looking forward to because that's the palce with the best waiting room. She knows that the urologist will only be talking to her / us and that the nurses there will take her blood presure / temp and maybe test a sample but that's it and she is not at all worried about that. She's had many many hospital appointments during her life and all but 1 (prior to these latest ones) have been really positive and she's been completely calm / happy.

ASDmommy - I did tell the nurses in the kids ward whilst they were trying to remove the cannula that she was so upset because it had been the same nurse in the nuclear department and tried my best to explain her thinking. I sort of know how her mind works because mine is similar and as soon as I saw the nurse I thought uh-oh we may have problems but I didn't listen to my instincts because my logical thinking was that it would be fine this second time because the stuff was being injected into the end of the cannula not her hand so the worst was over if you know what I mean.

I had the same problem with her when she was little with vaccines, the nurse insisted it only hurt a little but my daughter screamed the place down at every appointment from when she was a baby right up until her last shot when she was 4. We expalined to her that it would hurt but that she would get a really big treat afterwards so she had to be brave because she needed this shot to stop her getting ill but there's only so much you can do to explain and reassure etc.

I don't think she will need another DMSA but if she does I will be asking if they can make sure it's not the same nurse and I'll explain why we don't want that nurse. I was the one who got her the gas and air and the treatment with the nice paediatric nurses, when they had to re-book the DMSA I knew we'd have problems and that it would just be a repeat of the first one so I phoned up the nuclear department and told them my concerns. The next day they told me they had booked her in to have a cannula fitted to avoid the same situation, I did try expalining that we'd have the same problem getting the cannula in but they didn't want to know. I called our local doctor and asked if they could give us something to sedate her with, they wouldn't because they deemed it unecassary so I called the paediatric ward and spoke to the play specialist. After explaining everything and my concerns about it being the same with the cannula she suggested coming in early, that she would explain everything to our daughter, show her how a cannula is fitted, why etc etc. I then said I really thought sedation would be best so she said she'd have to speak to the manager but she was sure she could have entonox as they have it for rare cases when a child is very scared.

I think my husband didn't (I think he's slowly changing his mind) want her to be diagnosed because of fear. I think he's worried about her being judged and treated differently, plus he has alot of his own problems with the mental health teams in this area, he's been treated badly by them (he's diagnosed with bi-polar) and so doesn't want her to be treated badly too. I also think he was worried about putting her through the diagnosis if she dind't need to go through it. Initially when I started saying I think she has AS too he kept saying 'no she hasn't your thinking too much about it' but the more I tell him about AS and the more he understands about my behaviour being typical of AS I think he's starting to see it in her too, espacially now that it's affecting her school life and she's coming home saying she was told off for misunderstanding something. I've told him if she was diagnosed then they would be able to make allowances for it, examle just little things like double checking she understands what the work she's supposed to be doing is, she's gotten into trouble many times because she's either misinterpreted what's been said or she's been so "dizzy" because of the noise and lights that she hasn't heard everything that was said. Or when the headteacher is phoning us up because she' s hysterical rather then them just thinking she's being naughty then maybe they will understand that she's having a meltdown because of an incident earlier on at lunch involving the texture of beef and then pulling up old memories to re-inforce a negative outcome. I think he's slowly realising that she needs help particularly at school. He doesn't like thinking there is something wrong with her, he wouldn't listen to me at first when I said she needed investigating further for her UTI's only that I repeatedly told him she could end up with kidney scarring/damage did he agree we should push the doctor for a referral...I was right she has kidney scarring. He's like that because he's had so much treatment himself both mentally and physically, he lost his dad when he was little and alot of other relatives have died from illness so he likes to think all is fine as a way of coping.

Sweetleaf - It's not specifically the first incident that I'm asking about, I completly understand her being upset it was the second appointment in which she was fine until we got to the nuclear department and all hell broke loose, then we had the worst of it when they were trying to remove the cannula. That's the part I can't quite understand if it were me I'd want the cannula out as soon as posible but she was too far into her hysterical mood that she couldn't be reasoned with or calmed down, they had to giver her a large amount of entonox to calm her down.

liloleme - That's what they are looking into at the moment whether she has kidney reflux, or something else causing the infections, her right kidney is quite badly scarred from what the urologist could see on her ultrasound images, he has her on a low dose of antibiotics...we had a screaming hysterical battle to get her to take that too. It took me 2 hours to get her to take it, I tried everything but she was just crying and screaming she was scared because she didn't like the taste of it(it was aniseed flavour..that's what it smelt like anyway). We now have a flavourless one that she still hates taking but we have a system now; spoonful of medicine, candy spray 2 times, cup full of water, candy spary another 2 times and then teeth brushing all to take away the taste.

I don't blame myself or the nuclear nurse, I don't agree with how she did it but I completely understand that it had to be done and she thought that was the best way and your right I wasn't prepared or expecting it at all, particularly because my daughter was completely happy up until the point the plaster was taken off and then everything happened so fast I didn't have a chance to say stop. Even now I don't know if I should have or not, had I known it would go in the tissue sure I would have said wait but I'm sure the nurse was probably thinking the same thing as me get it over with as fast as possible because she's not going to calm down so better to upset her and get it done in a few minutes then drag it out for hours doing it bit by bit, particularly when they are pushed for time.

I'm going to take each appointment as it comes, her next one is just to discuss the DMSA results, if she has to have any kind of surgery etc then we'll cross that bridge when we come to it and I can tell them how she reacts to plasters,numbing cream, needles etc etc. I didn't know that about people with autism having issues with numbing medication...would certianly explain a few things, I've had problems at the dentist, he would jab me a number of times and I could still feel it, my epidural didn't work properly and I could still feel alot (so had to have a spinal block after for the stitches) the gas didn't do anything for me I just felt a little woozy. If my daughter is anything like me then she has a high tolerance to that kind of thing too, probably why she had about 20 puffs on the entonox before she felt it working.

The reason they went with the entonox and not any other sedation is because it's out of your system as fast as it's in and they didn't wnat to have to keep her longer then necassary. Really it should have taken 10 minutes to get the cannula in, 5 minutes to inject the radioactive stuff and another 10 minutes to get the cannula out but we started at 10 and didn't leave until 1.40. that's why they opted for the gas because it would have been a simple breathing in of the gas, cannula in 5 minutes later she's no longer sedated but with other sedation she would have been sleepy etc for a number of hours and then there is the risk of a reaction etc which with entonox again it's in and out so any reaction would be over fast and it's out of your system.

My husband's fainting was due to his own possible PTSD, he broke his collar bone 2 years ago and the consultant mis-diagnosed it as a grade 1(not needing treatment just rest) he was left in absolute agony for 3 months before finally getting to see a surgeon who within 2 minutes said he needed an operation asap and that it was a grade 4 injury. He's also very ill himself at the moment and undergoing several tests to figure out what(they are looking at neurological problems now) and on that day he was feeling a little off, coupled with his possible PTSD and the fact that when he was little and had an operation on his eye they screwed up his cannula and injected a large amount of saline into his hand making it swell I think it brought all those memories flashing back and he passed out. He was okay the second time but I had jokingly said I'd hold her this time so he could lay down straightaway (they had to pull our daughter off his knee before he slumped in the chair).

I think taking her to the hospital again yesterday has actually helped beause she could see that just like on Friday none of the nurses or doctors were doing anything to her, it was all for her granny. So hopefully the more we go in the less traumatic she'll find hospitals and she may settle down more around the cannula.

momsparky - She's not diagnosed yet no, I've only just been referred to an autism diagnostic centre myself and as explained above my husabnd wanted to wait until I had my diagnosis first. Although our daughter is being referred to the children's mental health team so she may end up being diagnosed before me.

I was asking if other people with kids on the spectrum could relate, whether her reaction was worsened because she may be on the spectrum. Obviously most kids would get upset but her reaction particularly to having the cannula removed was very bad (plus the trip to visit her gran) and I just wanted other people's views on whether pulling up bad memories and making yourself hysterical over them was NT or more geared towards people on the spectrum.

My daughter has a very good memory for everything, every last little detail. Example a few days ago we bought a new magazine about the human body, it was only cheap and each issue you get mroe and more bits to create an entire skeleton with organs etc. We bought it and put it on her bed, when she got home from school my husband said there was a little something on her bed, she ran in all excited and then there was silence. So we went in to see what the problem was she was on all fours on her bed with her face in the pillow and her hands by her sides(she used to sleep that way a baby/toddler). After asking repeatedly what was wrong and getting no response she finally started to cry but again wouldn't speak. After about 30 minutes she calmed down enough to speak and explain what had happened. she had re-called from her memory my husband saying that the next time we bought something it would be the monster high doll 'operetta' that she desperately wanted(we planned to get that for after the next hospital visit). So she had run in expecting the monster high doll (her major obsession) because my husband had said that would be the next thing we bought (that conversation was 2 weeks ago) so when it was the magazine she had felt a huge crushing disappointment and in her own words "I had to slow down" or to translate...she needed time to process what had happened, why it was a magazine and not a doll but she couldn't because he had promised a doll (we had lots of why did you lie to me daddy!) and so became upset. Once she moved past it we sat and read the magazine put the skull together with all the teeth(minus the milk one she has missing), she loved the magazine and wants to subscribe to it. So yes her memory is shockingly accurate and detailed and she can recall conversations from years ago, toys or books etc that she has gotten rid of.

Just want to say I can guarantee this is just how my son would have reacted. He is ASD, and I think most of the reasons he would have reacted that way come from his traits, but that is not to say an NT kid shouldn't have reacted the same way. It was obviously a terrible experience, and I'm sorry you both had to go through that.
I don't think I would be as worried about my daughter in that situation, though she may have fussed some, I think it would have been easier to calm her. Also, she would not have reacted sensitively when visiting someone else in the hospital as your daughter did.
When you were describing visiting your mother-in-law and your daughter hiding and covering her ears when Dr/nurse came in, I though, oh my goodness, that would absolutely be my son! But sometimes I wonder the same thing . . . how much is personality, how much is spectrum/Aspie . . . ?
I think it's a good thing she is getting referred for an evaluation. I've had two responses from people who know my son was evaluated or has some 'special' needs--I've had the "Oh, all kids are that way! He's fine." And I've had the "I'm relieved you are doing that. I thought something was up with him." So, moving forward and figuring her out a little more is always a good thing.

Thanks for your reply angelgarden.

That's the thing I'm trying to figure out would a NT child have been calmer?, more easily reasoned with?, once she gets that way about something you cannot calm her down you just have to ride it out and eventually she may do it. We tried everything to get her to agree to having the cannula out. We said we'd count to 3 and take off the plaster/ pull the cannula out(I say 'we' it was a nurse doing it) after she was calm enough on the gas. She had around 20 puffs on the gas and then we went 1....2.....and then she would scream no or stop or wait and that she was scared and then slowly work herself back up into a hysterical frenzy, suck in the gas calm down but as soon as the nurse moved towards her she'd scream and clutch her hand to her chest and tell the nurse to leave. It took about 30 minutes of coaxing to get her to simply put her hand on her dad's so that when ready the nurse could actually get to the cannula. The nurse and play specialist explained to her the reason why she couldn't keep it in, told her that she'd have to stay on the ward and said she didn't want that did she, she wanted to go home and not have to come back didn't she etc etc...at one point she was so hysterical and against having it out that she was willing to stay on the ward indefinately without us, anything so that she didn't have to have it out. We had the build a bear treat waiting for her after but she didn't care, I told her she could get 2 bears, 2 outfits a monster high doll and go to macdonalds if she'd let them do it after the count of 3...nothing worked. I think the only reason they managed it was because she was so exhausted and she was completely off her face again on the gas, as the nurse just said to let her keep going, whatever it took to get the cannula out. Of course the second she actually removed the cannula my daughter screamed so loud and for so long a couple of other nurses came running in to the side room to see what was wrong.

She did amazingly well at the hospital yesterday considering all the stuff that happened, her friend from her martial arts class let her borrow a nintendo ds game so she was on that from the second she got home from class all the way to the hospital and she was completely calm about going in to see her granny. When we arrived some of mother in law's friends were there already as well as a nurse who was talking to mother in law about having a transfusion as soon as I heard that my thought was "oh crap she is going to freak out"(my daughter not mother in law). My daughter was too busy chatting to MIL's friends to notice the nurse, she was telling them all about the game, what it did, games you could play how kind it was of her friend to let her keep it until next weekend etc etc(this was unusual for her as normally she'd be reserved and wouldn't really speak to people she doesn't know but this game has really caught her interest). It was a smurf game and part of it has a story that is read out, well my daughter stood up and started reading it out, despite the rest of us trying to talk / ask MIL how she was, she just kept going talking over us, ocassionally shouting out "look granny, look at this isn't it cool"....she was completely oblivious to the rest of us. I tried telling her to read it in her head that granny was trying to talk to her friends and rest but it went in one ear out the other, she nodded, kept quiet for second and then as soon as everyone piped down for a brief pause she stood up and started again.

Anyway the nurse came back with all the things ready to hook the blood up, daughter saw all the bits and as expected ran to the door saying she felt sick and was rocking side to side on her feet saying she wanted to go. We'd only been there about 15 minutes and wanted to stay longer so I got her a chair and we stayed outside the room whilst they hooked the blood up, I got her to calm down and just focus on her game, by the time the nurses left the room she was fine. She walked back in and held up the game and was shouting all the things she'd done in it, then she looked up at the bag of blood and even though she knew what it was she said "what's that?". My husband trying to joke with her said it was tomato ketchup for granny's dinner...well that set her off "no it's not daddy, why would you say that, why would you say granny is going to eat that, now I feel sick" she threw herself on a chair and gave him one of her death glares, I distracted her with the game again and she calmed down. A further 10 minutes passed and she was back on form asking granny what colour cake she'd like in the game, what candles etc etc and then she made granny blow them out. MIL's friends left and we were chatting, daughter was totally engrossed in the game and only now and again would respond to questions from her granny.

Then came the second wave, the nurse came back to check on MIL, daughter was wary but just kept focused on her game, nurse left. then MIL moved herself up in the bed a bit and that's when we saw the blood on the bed sheet, the tube was leaking slightly, daughter stared at the blood stain for about 30 seconds, totally zoned out and then carried on with her game. It was only when the nurse said they'd have to re-attach it and maybe get a fresh cannula that my daughter really lost it and the game distraction just didn't work anymore. She started to get upset by the idea of the cannula being replaced and then she started complaining about the blood on the sheet despite a few minutes having elapsed betwen her staring at it and actually mentioning it. At that point we knew she was going to get really upset so we left, she was fine as soon as she knew we were leaving, she wouldn't go near her granny though, just waved at her from the door and was tugging on my husband's arm trying to get him to leave whilst he was still asking if there was anything MIL needed etc.

She does make me laugh with her ways, the day of MIL's operation when we saw her before it the staff had told us it was a maximum of 2 visitors at a time (father in law was there too so that was 3 adults 1 child). So when we visited that first day I told her to stay behind the reception desk, it was high enough so they couldn't see her and I explained why. Then on Saturday she took it one step further and crouched down and covered her head with her teddy to hide. I told her she didn't need to do that as they obviously didn't mind the 3 of us going in because they'd seen us in the room with granny the day before so if they were going to enforce the rule then they would have reminded us then. Plus I said we were only 2 and a half people and it was just a rule to stop dozens of people all coming in at once and crowding the place up (I explained about germs and noise etc etc). I was sure she understood that she didn't need to hide but yesterday as we walked past the desk she did some kind of stealthy run and hide with the desk and doors (like the police in TV programmes) and when I asked her what she was doing she said she was hiding so they wouldn't stop her seeing granny because there were 4 of us(me, my husband, her and teddy). I explained again about not having to hide but she wasn't interested, I think she found it fun and exciting and to her a rule is a rule. She also commented on MIL's friends being there, at one point she whispered to me "Mummy they have to leave there's too many people now and they'll tell us off, tell them to leave". On the way out we saw father in law just pulling up in his car and again she said "oh good we left in time because there's grandad and that would have been too many people again".

Az29, re: the story about the doll she expected and the magazine is very familiar to me. My son also has an excellent memory and this gets us into trouble very frequently. He remembers so many things and if it looks like we contradicted something we don't even remember saying (or his interpretation of it, which is even more confusing) he will melt down and ask why he got x instead of y; Or why did we forget z. He does not quite understand that forgetting is unintentional and cannot be helped.

Sometimes, though, his good memory leads to fun moments. He will quiz us on either a recent or not so recent brain dump of facts about a special interest. When it is immediately recent, I think it is to make sure we were listening. Otherwise, I think he is trying to figure out just how much information we are able to retain. He gets this quizzical/amused look on his face that seems to indicate this. It makes me laugh to myself, and I just hope he does not think we are too stupid.

Many Autistic people....Both of my little kids even though one has Classic Autism and one has Asperger's are big on rules. We would not have been able to tell our kids that there could only be so many people in the room or they would freak out, especially my Autie. My son (my aspie) would have been like your daughter, trying to hide, ect. . He also probably would have told anyone else coming in that they could not come in until some else left!

My kids come to visit me in the hospital and my Autie thinks anything medical is very interesting. She loves to see my IV and she likes to see them put it in but she doesnt like to see it come out because of the tape, my son would vomit and he cant even look at it, I cover it up when he comes to visit. He once had to have five injections because for some reason he was behind in his immunizations. It was the doctors office's fault but he was missing two. So we went in thinking we would have two shots but they told me they got the flu shot in so I wanted both my little kids to have that and then they noticed the mistake so he ended up with five. He was so good, he cried after each one but he did not get too upset and we went to McDonalds (cure all of everything) afterwards. My daughter screams in pain if you say something the wrong way (she gets upset if you use words she doesnt want you too, she will scream her leg hurts) but she rarely feels physical pain the same way most people do (When she broke her arm she did not cry about it until it started to swell and then it was just fussy crying like she was tired or getting ill) but she is like your daughter and me with tape.....like I said you can poke me with needles (I do hate the dentist only because I have sensory issues with my face and problems with light in my eyes) just about anywhere but I cant stand the tape! My daughter also has issues with them taking her blood out so I turn her head and ask them to be quick....I also have to show them where he vein is because when she was a baby they poked her 9 times trying to get an IV in because she had a MRSA infection. I knew how dangerous MRSA can be so I wanted that IV antibiotic.

I finally got frustrated and looked myself and found a big deep vein in her antecubital space (the bend in your arm). I told the nurse to go for it and go deep she was nervous but I tried to keep her calm, the nurse, not my daughter . Maddy had not really cried that much she was very ill and, as I said, she does not feel pain like most people do. I remember thinking it was funny when she didnt cry when they did her baby shots. Anyway she was getting upset with them messing with her so much so Im glad we got it in. She also had to be hospitalized another time for an abscess that was so deep they had to do surgery and they put an IV in her and I knew they did not have it in the vein as they got no blood back but it was the flight nurses they had do it because the other nurses could not find a vein on her. This became very painful for her and her arm was swelling like a balloon. I kept telling the nurse that it was infiltrated but she ignored me, thinking I was a nervous Mother. I was ready to pull it out myself and had my husband looking for pads for me to hold pressure so it didnt bleed but they came to move us down to a private room as they knew she had MRSA. I showed the nurse her arm and she freaked out and was really mad at the nurse on the other floor.....I had already turned off the flow from the IV and the nurse took the IV out and we let her rest awhile before trying again. We got an awesome nurse to come in and she managed to get a new IV in Maddy's hand and it never gave her any problems. This was why I managed to get her potty trained when she was 3 and still non verbal (she was naturally dry at night and that made it easier).....I was tired of the MRSA. I just took her every hour....she is still not "trained" but we can read her body language and there are times when she takes herself...we have to watch her though because she does not wipe.

I think maybe your daughter is struggling more with sensory issues than pain although sensory registers and aggravates our pain receptors. What I do is I bite my opposite finger to focus on something other than the arm they are pulling the tape off of. With my daughter I get her opposite arm wet and blow on it and she focuses on that and I make silly faces while Im blowing and that distracts her. Also once I blew up a balloon on her opposite arm and that worked really well....and this is just to get a little band aid off. We will also soak her in the tub until it fall off but some of those things are really sticky and even if a tiny piece is on her skin she will scream like you are killing her. Try to find something to distract her on her opposite side and see if that works....you can practice at home if you have to get bandages off. Also the counting thing was always bad for me....it just raised my anxiety level....I liked it better when they just said "Ok, lets take this off" and then I bite my finger. I had a nurse ask me once why the tape hurt me so much and I told her she wouldnt understand . Sorry I tend to talk (type) too much

Oh yes ASDmommy her memory causes alot of problems (and fun times) as well as her misinterpretation one of her commonly used phrases is "but you said/promised...." or "daddy said/promised...." etc.

I've had a little incident these past few days; her granny normally gives her pocket money(allowance) on a Friday evening but because she's in hospital and will be housebound for the next 6 weeks(she lives 45 mins drive away) she may not see her every Friday. So she prepared some envelopes with little gifts in, just little craft bits to add to her craft box(a packet of foam shapes, glitter glue etc) with the instructions that she gets one every friday. MIL gave us the envelopes the Thursday night before she went in for her op on Friday, straightaway my daughter asked if she could have one granny said yes. Then on Friday she asked me if she could have one and I said no she'd already had one "but granny said...." and she went through a big speech about how granny gives her money on a Friday but she has the enevelopes instead. I reminded her that she'd had it a day early because she was impatient and couldn't wait...she responded by telling me again that it was Friday, Friday was pocket money day and we went around in circles for about 10 minutes before I said we'd ask granny at the hospital later that day if it was okay to have another that week. That satisfied her, that was one of the first things she asked her when she saw her "can I have one of my enevelopes because it's Friday's and you said on Friday's instead of pocket money....". Anyway long story short she didn't get an envelope (granny said it was up to us but by the time we got home she was off to he rmartial arts class and then bed after that). Saturday she asked again and told us we'd forgotten to give her one the day before and again went through her speech of every Friday granny gives her money but she has envelopes instead. My initial thought was "OMG she is going to say this several times every day until I give her one" so I tried to think of a good solution but I admit I gave in and let her have one after she asked a further 3 times during the day but told her it was a one off and not again.

Then yesterday she asked how many days it was until Thursday so I told her and she said "oh good I get an envelope then" when I told her she would get one on Friday she said "No I get them on Thursdays and Saturdays". I explained once again why she got them on those days and why she would only be getting them on a Friday from now on but she just didn't get it and somehow thought I was cheating her out of them.

Then there was the game incident last night when she said she really wanted the smurfs game I said I'd look and see how much it was...she interpreted that as me saying I would buy it. She asked me this morning when her smurfs game would arrive and I had to exlain that I hadn't bought it, I just looked to see how much it was and it's too much money, and then she came out with her line "but you said you'd get it for me mummy, why did you lie?". Now I hate being misunderstood and being called a liar so that set me off and I was ranting at her about how I never said that, that I was just looking and we went around in circles again..her thinking I was going to get it because I said I'd look, me saying I never promised to get it, her saying I did and round and round until I just walked away. I'm sure later today she will tell granny that I lied to her and promised her the smurfs game, she'll probably meltdown and cry about it at some point this week too, completely sure that I'd promised it to her. I know why she's thinking that, she loves that game, she's only had it since yesterday lunchtime and she hasn't been off it except to sleep and go to school today so it's a mini obsession...that always makes things worse. So because she wants it so much she will have convinced herself that what I meant by looking to see how much it is actually means i'm going to buy it, she does that sometimes (as did I as a child). If she really likes something she will convince herself that we will get it for her so if we make the mistake of looking for it whilst she's home it only re-inforces that idea, so we try to do any toy shopping when she's not around, sometimes though we forget particularly if it's just to check a price.

A few days ago I was trying to find somewhere that had the operetta doll in stock, she was busy in her bedroom and I was on my tablet, she must have snook in when I was engrossed in searching and she said "what you looking at?"...too late though she'd caught me looking at operetta and then asked me later that day if I'd ordered it and when was it coming.

Arent they fun, our kids? ....sarcasm aside, they can be a lot of fun but they can also make you nuts. However we have to remember that we probably annoyed the heck out of our Mom too. Whenever my kids are making me crazy I should start calling my Mom and having her tell me stories of all the things I did. Like trying to tear my lacy church dress off by rubbing myself on the carpet.....I HATE lace!

Well everything I've read seems pretty normal behavior for an autistic kid when taken to the hospital to undergo a bunch of scary procedures. It reminds me a lot of myself when my mom was taking me in for stuff like that cause they found some weird things about me they where trying to figure out and never ended up figuring out.

If she does have autism she is certainly going to be more prone to getting overwhelmed and having melt-downs(the screaming, freaking out stuff you described). In some situations all you can do is try to make the environment as least stressful as possible so things aren't as overwhelming and wait it out while not putting her under too much pressure to think it through right then.

But I can understand that can be kind of difficult in a hospital setting, I mean there where times when I had to go in for stuff and did great then there were times something would set me off and there could be no calming me down until I actually calmed down and could process my thoughts better and be more rational about it. But if anyone tried to reason with me while I was having the meltdown, that typically just overwhelmed me more. Even to this day I don't really have meltdowns like that anymore but if I am overwhelmed and getting frusterated and people start asking me things and stuff it stresses me out more and I'm 22 so maybe your kid is experiencing that sort of thing.