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Just gave dd her first dose of Growth Hormone and she howled...

(19 Posts)
largeginandbloodymary Thu 09-Oct-08 14:03:27

Then she kicked and screamed and howled some more.

She has been looking forward to the nurse coming and getting all the things out ready. When it came to it we had to pin her down.

It was hellish, i am drained. Please tell me it wont always be like this?

She is 8 btw and has Turners Syndrome.

largeginandbloodymary Thu 09-Oct-08 15:46:21

Shameless bump grin

Although the howling has stopped and she has gone to drama club then on to Brownies. She will be telling all her friends how terrible it was and how cruel i am

<< dramatic >>

Blu Thu 09-Oct-08 16:02:55

Huge sympathies, LG&T.I know that drained feeling. It's unbearable watching your child go through something hard.

I have no experience of Turner's syndrome, nor administration of the Grwth Hormone, but i do have a 7 yo currently going through a long procedure which involves lots of painful processes (bone-lengthening - gory details on my blog).

We have found that it really does help to be very mater of fact and upfront about procedures and not try to play them down. DS seems to accept that something will hurt f a short time if he knows it is gouing to stop - and what the mechanism for making it stop is - e.g "the oainkillers will tak efect in about 20 mins" or "physio will be painfu to begin with but each time you do it it will be a little better" "I have 3 more oin sites to clean". His very experienced specialist nurse has a very serious discussion with hi everytime she does something like strut changes and says "how many 'ow's do you think this will take?" and he then yells if it hurts) that many times. i.e she gives hi permission to yell - but also a control mechanism.

Does your DD have any contact with other children undergoing unpleasant procedures? I is of immense help that DS regularly sees other children in clinic having the same procedure, and they chat to each other - quite gruesomely some times, swapping horror stories, but also being very matter of fact 'oh, had that done, it was OK' etc. DS had to have an extra operation and was very very down about it - until he met a slightly older child in clinic wh talked about how many folow-up ops she had - and he then accepted it as normal and not frightening. CAF - Contact A Family can be very helpful puting you in touch with famlies in the same position locally.

We also had a jar, and when we were doing the actual lengthening, we put a £1 coin in each time we turned the bolts - it was good for DS to see that he had a tangible, growing reward.

Also - anticipate your own distress. It is OK to go into the toilet and cry in private - and make sure you have a friend to talk to afterwards. Brownies etc is also very good - immediate distraction and recovery will hopefully increase her confidence with it.

You have every ounce of my sympathy.....and I send a big huge hug.

AreYouCallingMeDarling Thu 09-Oct-08 16:26:22

Sympathy from me too.

Been through quite a few ops with one of my DC, and it really has ended up with a slight needle phobia. He got very distressed when he woke up with a canula in sad

LaDiDaDi Thu 09-Oct-08 16:27:51

I have experience of lots of children who have GH treatment and it does get better. I know of one little lad who was just as bad as you describe your dd being but now does it himself.

I think that the great thing with your dd's age is that she will understand the benefits when she goes back to clinic.

largeginandbloodymary Thu 09-Oct-08 16:39:32

Thank you all. It is like a form of torture really, you spend your whole life trying to protect them from pain an suddenly i am the one hurting her, on a daily basis!

It is awful enough taking your tiny baby for those first jabs but at least it is a nurse doing it. I feel so cruel.

She will cope well i think, even walking to school she started to chat a bit and say "well it did sting but not hurt too much". I so hope we don't have the same upset every day sad

Gah!

Areyoucalling what on earth are you doing heping me, you should be shouting at your fuckwit of a husband wink You are a very brave and very strong lady, i am in awe of how you are dealing with it all.

Blu your poor ds, it sounds horrific. I bet it doesn't get any easier whatching go through it sad Thank you for the hugs.

AreYouCallingMeDarling Thu 09-Oct-08 16:45:33

I can't spend all day thinking about that.

On a more positive note - I have a friend who was very very phobic of needles. He then developed diabeties, and came to terms with the needles very quickly. Familiarity and all that. smile

largeginandbloodymary Thu 09-Oct-08 17:02:35

No you cant quite right. Thank you for thinking of me smile

She is terribly needle\blood phobic and chose a device that involves pushing the drug under her skin with immense pressure, the 'Cool Click' pen device. There is no way if it was a needle i would have got near her.

Blu Thu 09-Oct-08 17:09:28

It's good that she had some choice and say in the method of getting it in. If she was able to tell you that 'it did sting a bit but not hurt too much' I strongly suspect that she will soon take it pretty much in her stride. Fear is often far more powerful than any amount of pain - DS yells his head off during physio, but the physio pointed out to me that he doesn't actually have tears running down his cheeks - it is as much fear, and trying to scare off his 'attackers' as actual pain.

But if she can have someone to swap stories with, I think it will help.

largeginandbloodymary Thu 09-Oct-08 17:21:03

I think you are right, there is a little girl moved in near us just recently, She has lots of learning difficulties and struggles at school like dd.

May have her over for tea. I can't really face asking the consultant for the numbers of other children with TS (we have a couple in our area) as i know dd is mildly affected and the others are more severe. I don't want to make any parents feel bad or scare dd or myself iykwim

Will think on it though, especially if she continues to be so upset with it.

Blu Fri 10-Oct-08 13:35:00

How often does she have to have the hormone. LG&T?

used2bthin Fri 10-Oct-08 14:08:07

Sorry probably not got much advice but just wanted to say how helpful this has been for me too, reading through all your messages. My DD is only just turned two and has just had an op which some of you may know about. Her condition has meant that she has had painful procedures done since being young though and blood tests which are horrible as her veins are so used that it takes several attempts. The op was obviously horrible and she has got more to come so just hearing how others, particularly Blu have found ways to help the child feel more in control is really encouraging. DD is dependant on meds and always has been always will be, she had them intravenously in hospital which is often the case when she is ill but this time she has started refusing meds for the first time ever. Obviously she has to take them, she wouldn't last long if she didn't so I've been forcing her when coaxing fails but the nnurse said it is her way of controlling things because she has had a lot happen against her will, being held down etc. Any advice for helping a child as young as her with feeling more in control or understanding it a bit more? She will see psychologists as she gets older but has had no help so far.

Sorry for the hijack and hope your DD feels better about it soon largeginandbloodymary, I have to do blood spots with my DD anbd hold her down for blood tests so I know exactly what you mean about wanting to protect but having to hurt her. We do it because we have to though and it is part of our protecting them because its something they need. I don't know about Turners syndrome but my DD's condition is with her endocrine system, I have found that CLIMB was a good group to join, well I joined a sub group but they were very helpful too. Not sure how relevant that is to Turners syndrome but thought I'd mention it in case.

Sidge Fri 10-Oct-08 14:11:35

Hello LG&T/BM smile

My DD2 has GH every night and has done since she was 14 months, so for her it has become part of her nighttime routine, and she now helps me do her injection. As your DD is so much older it might take a little longer but I bet she gets used to it fairly quickly.

Fancy a cuppa soon? Off to email you now.

SparklyGothKat Fri 10-Oct-08 14:20:50

aww bless, I hope it gets easier for you LG&T. I bet it was harder for you than for her.

Blu Fri 10-Oct-08 14:31:20

Sympathies to you, too, U2BT. I remember you posting about your decision-making process about your D's op.

I agree about the ways of giving over some control. Can't think what might work with a little one - but one thing i do when cleaning DS's pin sites - which can be painful if one is sore and inflamed, is ask him what order to do them in. Or do them in random order (there are 18) and ask him to remmeber which nes I have done an tell me which ones are still waiting (I remember too - but let him think i don't).

If it's OK for her to take pain killers, LG&T, I would give her a dose of paracetamol 30 mins before she has her GH. It does take the edge off real pain - and is a good panacae, too.

I took a lot of courage from wathing the physios work. Physio is the single worst thing about the recovery fom DS's operations - getting a child t walk within 24 hours, or less of bone surgery! DS has screamed the ward down. The physios just get on with it calmly...and interestingly, DS says he likes them, chats to them when he sees them again etc. he doesn't hold it against them. I think a parent saying 'I'm doing this because I know it needs to be done, so we'll just get on with it' is a much more re-assuring context for a child than thinking that Mummy doesn't like it either.

But it cuts you up inside, and i'm not sure there is a way round that, tbh.

Blu Fri 10-Oct-08 14:32:11

I menat placebo, not panacae!

used2bthin Fri 10-Oct-08 14:41:41

Blu you are so helpful I remember you giving me advice about the decision making process over DD's op too,monday night I was just devastated at how in pain and ill she was all because I had chosen for this to happen now but the fast recovery she has made makes me feel it was best getting it over with young. She is not talking yet, understands lots though I will try asking her which med first and anything else where there is a choice involved. You are right though about the just having to do it thing, for instance with cleaning her wound it hurts but needs to be done so I just tell her. And the thing about physios is interesting, DD just takes to certain doctors and not others. I made them stop trying to get a canula in on sun night as it was a case of holding her down I could see she'd had enough and was scared etc. The doctor was a bit pushy and wanted to keep going but I refused so they woke us at 5am to try again, it should have been a nightmare but DD just took to the doctor and smiled at him, he had a lovely calm manner and said I know this may not be very nice I'll be quick as I can and will only try three times. So I was more relaxed too which in turn would have helped her. In the end he failed too due to her extremely over used veins but it was a completely different experience to the night before despite the early hour.

used2bthin Fri 10-Oct-08 14:42:55

Actually I quite fancied that doctor, shame I was in a trquoise towelling dressing gown wink grin

largeginandbloodymary Sun 12-Oct-08 13:39:24

Aw thank you everyone! She has it everynight now for a good few years sad

She has been fabulous since then! Not a squeak out of her! I am stunned tbh. I think it must have been fear of the unknown.

She is such a star about it all i am so proud of her smile

Sidge will check email! Deffo for a cuppa soon.

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