Had a very strange day today!

[Nic m]

Hi all,

I think i am looking for some advice or some insight into todays events. It has been very stressful and i don't know if i handled it well.

I was sick yesterday and this seemed to throw my daughter, she was very nice and played with her arts stuff in the living room and did not complain when i could not play.

Today i got up feeling better but not quite ready for a full on day and said to my dd we just need to do food shopping and i will tidy up so you can watch tv this morning and we can get your homework finished this afternoon (homework always an issue).So far so good.

I do the dishes and iron the clothes while tv is on and more art work being done.

I let dd know after this programme you have to put things away and get dressed so that we can go shopping.She ask where are we going i say just food shopping, she says you have to tell me where or i will not put this stuff away!

Anyway long story short, major tantrum would not get dressed, shouting swearing the works!when no reaction it escalates.

I still stay calm, saying im just going out to clean the rabbits to give you some time to get ready, when i come back in she is lying on her bed saying it is all my fault for not doing any housework that is why she is not dressed! again i stay calm and say well it will be school dinners then because i am not going shopping now so there is nothing in for packed lunch! This is 90minutes in so we are full on by this time with screaming and shouting but i stay calm and clean the bathroom!

Try to change tack 20 mins later and say now lets try and get homework done, she starts on about teacher not being nice to her giving her tally marks for it not being finished.I say well you have to try and finish it then, you dont want any more (all the while cursing the teacher under my breath because she is really trying with her homework).

I dont help her fast enough, and dont give her the answers (previous night she asked me what verbs and adjectives are and i gave her the answer)

Today she has forgotten and i say lets look it up on the internet, no way you know the answer she says!

So round 2 begins with me not giving in.

Eventually it ends with dd going through the cutlery drawer saying she is going to get a knife, this was emotional blackmail i feel.(this has happened before)

So now i am sitting pretty wiped out but one other strange thing happened today, her knee locked while she was doing the toilet it happened in the morning and she was in pain for about 20mins and then it happened before going to bed for a lot longer 40mins so i gave her some painkillers and contacted nhs24 as she would not get up from the toilet pan until i had done this and i could not bear the noise coming from her any longer.

I sound very cruel at this point but i dont know how genuine the pain was this evening, as she now does not want to go to school tomorrow due to school dinners and the after effects of today.

Sorry for the long post but it was a very confusing day.

Does anyone have any ideas on the knee pain, she cant recall hitting it or falling.

I do think today was about not wanting to do anything except what she wanted as this is typically when this behaviour starts in this way, and i think it was strange for her to see me unwell, but it was a very strange day.

Again, any help would be great, thanks.

Nicola

[Mumble]

<'> <'> <'>

 

Hmm, not sure much help I can be - there's a lot there - but I will try with some parts.

 

Firstly the knee pain I don't know anything about. However, I often 'feel' things as pain that others wouldn't and when I'm particularly stressed/anxious/etc. this is much worse - for instance I ended up going to bed early last night and I'm having a quiet day working from home today because I had back pain, jaw ache, and headache which I know were all related to the very busy week I've had. I can't tell from what you've written what was going on - plus it could be a whole combinaton of things - she may have been in pain in the morning and then used the same in the evening but equally she could have been pain both times - maybe she was realising what school dinners would mean today and was anxious about this? I would just keep an eye on it over the next few days as you know what is 'normal' for her and so can best judge what is 'different'.

 

The change in routine probably shook her a bit and made her a bit unsettled about other things - so for instance the needing to know which shop exactly she was going to.

 

I'm impressed by your staying calm and getting the housework done!!! I don't know about your daughter but I know when I'm completely stressed out/in meltdown I just need to be left alone to let it run it's course (though I may need help to reintegrate afterwards - which is of course difficult to judge) - someone coming back to me repeatedly makes things worse (I'm not sure I can explain why - it's like I'm always feeling I'm doing wrong/not good enough).

 

It sounds to me like she has some anxiety around school going on which spills over into homework - do you have any home-school contract? Maybe you could draw up some 'rules' about how and when homework is done that are agreed and consistent between home and school - including what will happen if it is not done - so she's not facing double punishment?

[Nic m]

Thanks, Mumble

This is what i was wondering, she has told me before she has used pain as a way of getting out of school and i am such a sap i usually let her stay off.

Last night she blamed me for the outbursts saying its because i am too soft she does it, this i dont believe but do feel it is part of it.

Her routine has changed immensly in the last few months and although a lot of it is positive i know it is still difficult for her.

I have less time to spend with her and that is not so good.

I have made some adjustments this morning in the hope that i get a wee bit more time for her.

I sent a letter to school this morning asking that her efforts are recognised and not punished for not completing homework.

The emotional link to her pain is something that i have wondered about so thank you for sharing your experiences.

She has gone off to school still with a sore leg but much calmer although i think she is just resigned to having to go.

I would not punish her for not doing homework and im not generally good on the whole idea of punishment but i do try and stick to boundaries with her.

School dinners is enough punishment i think! more out of need than being a mean mum though!

Thank -you for taking the time to reply especially when you are not feeling 100% yourself.

Take care

Nicola

[Sallya]

This is not a critisism, just trying to say how your instrustions might have sounded to her....

Too many instructions, too much information all at the same time, but not the information she needs to know..where is she going?

You need to get dressed to go shopping...ok if I don't get dressed, I don't go shopping

It works...she doesn't have to go shopping, but now she's got to have school dinners..

 

She is stressed, cross, and in a full on melt down...but you want her to do her homework! Is this the right time or will it make things worse?

 

Now it's esculated out of every body's control. and she's scared and panicking

it happens so easily, and so quickly, one thing rolls into another....

 

just a few thoughts, but I might be wrong!

[Karen A]

Hi Nic m.I don't have a lot to add to what others have said.However I do know it can be really tough coping with children at home when you are unwell especially when they cannot understand that the routine might need to change.Alas mums cannot just take a day offsick. <'> <'> Karen.

[Nic m]

Thank-you for your replies,

I dont think i did very well the other day and did not help the situation.

Sallya i dont take it as a critisism, i just was unsure on how much this was her not coping with change and how much she just didnt want to go shopping!

School dinners was mentioned three hours in, after she had been playing with toys, and i understand it was still difficult for her to hear but if told later it would start a new temper tantrum (which i think this started as)

Karen, i had a rest at work yesterday and i am much better.

Quick update, she is off school this morning i have organised an appointment for 10:30 today as her knee locked again last night and again this morning.

She also has mentioned how cold her feet are, and i think this has to do with her joint mobility.

When she was younger her pain threshhold seemed to be very high, now it seems she feels pain a great deal.

Thank-you all again for listening

Nicola x

[Karen A]

I hope the appointment is helpful today.I am glad you feel better.Karen.

[Guest Lya of the Nox]

it was probably too confusing for her

she coped initially and then it went pear shaped what happens here

then as sally said too many bits of info

i get told all the time i am too soft by dd so we all in good company

and i also dont get told bout injuries then get but i cant do that cos XYZ hurts?

hope it went ok at docs

x

[Nic m]

Doctor was very nice but, his explanation frightened my dd a wee bit, but, the good thing was he saw that and explained it so that she understands.

The knee is locking and this has to do with the structure of the leg (tendons and ligaments) so it has to be looked at by orthapaedic dept.

It may or may not be helped/hindered by her loose joints.

End result is that we are now awaiting an appointment at Hospital.

Thank you all for your concern

Nicola

[mum23]

Doctor was very nice but, his explanation frightened my dd a wee bit, but, the good thing was he saw that and explained it so that she understands.

The knee is locking and this has to do with the structure of the leg (tendons and ligaments) so it has to be looked at by orthapaedic dept.

It may or may not be helped/hindered by her loose joints.

End result is that we are now awaiting an appointment at Hospital.

Thank you all for your concern

Nicola

 

Hi Nicola,

I am not sure that this will make sence but I was about 10 to 11 when I started to have bad knee pain, it has since been explained to me that as I went into a growth spert my already poor ligaments and tendons got into even more bother and could no longer keep my knees alined, this has been the case with my 3 kids as well. Our hypermobility has been a bit of problem with my AS son as his AS seems to have lead to him having a very odd pain perception thing where he really does not seem to notice that his body parts were out of place this has lead to wear and tear on his joints already. The big problem with dear J. is that he hates to do his physio. partliy an AS thing as he is so stubben! which is a big pain. Can I ask if you have looked into Hypermobility syndrome at all?

Anna

[Nic m]

Hi Anna,

Thank you my daughter was diagnosed with benign joint hyper mobilty syndrome in may this year with a score of 9! dont really understand the scoring but the doctor who diagnosed said she did not require any treatment or physio, just to avoid contact sports and jogging/running but to encourage swimming as this will strengthen her limbs to help support her joints.

Her hips and ankles and wrists have always been sore but her knees are a new thing but i think this is probably a connection,

thank you so much, Anna can i ask if there are any supplements or anything that helps this.

I am at a loss as to what will help the pain or what will help with building her muscle tone ( i only have a weak understanding of biology) so if you have found anything to be usefull i would be very greatful.

Nicola

[mum23]

Hi Anna,

Thank you my daughter was diagnosed with benign joint hyper mobilty syndrome in may this year with a score of 9! dont really understand the scoring but the doctor who diagnosed said she did not require any treatment or physio, just to avoid contact sports and jogging/running but to encourage swimming as this will strengthen her limbs to help support her joints.

Her hips and ankles and wrists have always been sore but her knees are a new thing but i think this is probably a connection,

thank you so much, Anna can i ask if there are any supplements or anything that helps this.

I am at a loss as to what will help the pain or what will help with building her muscle tone ( i only have a weak understanding of biology) so if you have found anything to be usefull i would be very greatful.

Nicola

 

Hi Nicola,

To have a Beighton score of 9 would mean that your daughter is clinicaly very hypermobile 9 is the highest score in this critiria. I think that physio is very important BUT has to be implamented by someone who knows about HMS / BJHM. Not sure how your daughter manifests pain but I would be concerned that if she is starting to have some major mood swings it might be a sign of pain becoming an issuse. I noticed also that you said that your daughters feet seemed cold, this is a thing that my kids have and has been put down to poor circulation due to their joint hypermobility. Sorry it sounds odd and I by no means want to confuse you, let me try to explain! BJHM is a condition that comes under a collection of disorders that are called Heritable Connective Tissue Disorders, basically the stuff that holds 'normal' bods together does not form properly, we have a problem at the genetic level that makes us produce only faulty collegen(the glue stuff that does the holding together). Collegen is the building block of many parts of our body NOT just our joints therfore BJHM people can also have other things not work quit as they should! PLEASE do not think I am trying to worry you I'm not, but I do think that we are more stronge people when we know what is going on with our bods and do not think that we are just loosing it!! it might be an idea if you look up the HMS support group on the internet they are a very helpful bunch, lots of info on their boards, also a number of us with kids that have ASD's and HMS small world is'nt it.

As for things that help a good healthy diet is helpful but if your daughter is anything like my son that is an issue hypersensitive to smell texture and so on does not seem to mix with a good healthy diet. Physio. does help when done properly and daily, an other problem with J. as he does not want to do exercises! We have found bracing helpful when joints are really sore, things like pencil grips for school writing ( sorry I do know what level of ed your daughter is ) but we have found lap tops invaluable at school my kids would never achive anything without them as pain from writting puts them off their work. Have you ever seen an OT, they may be of help. As for pain issues the only helpful thing here is a good GP, that is willing to send your daughter to physio. OT's and so on. Oh yes I found these little furry animal bean things that you put in the microwave very helpful and some times cold the strips you can get in the chemist good for sore joints too.

Take care Nicola,

Anna

[Nic m]

Anna,

I have tears of relief in my eyes as i am typing this, this makes so much sense, but i could not bear another battle so have chosen not to find out all the info i should have after the diagnosis.(rather poor of me but needed to deal with other issues first)

Thank-you so much, the consultant who diagnosed said she would be fine and did not require any follow up so this now makes my blood boil!

 

She is very hyper mobile, it does run in the family, me, my mum, and my grandad very mobile but she is excessively so and it does cause her pain.

My grandad had very poor circulation, and often had blue fingers and toes and this is how her feet looked the other night.

School stopped her using a computer saying she would never improve if she did not start writing, it is painful for her but she does it.

Her diet is very poor but gradually improving.

She is very bright with a very high IQ but struggles with certain aspects and elements in school as they do not feel she needs any support.

How funny about the bean thing, i have just bought these things to sell in my shop and brought one home tonight as they were delivered today!

The company also does gloves and scarves and socks that can be microwaved! so i may just have to put another order in!

 

Anna, i cannot thank you enough you have helped me immensely.

There are lots of allergies and arthritis in my family and the doctor did say there was a connection there so i shall have to look into this further.

Thank-you thank-you thank-you

Nicola x

[mum23]

Hi Nicola,

I'm glad I was able to pass on what I have learnt, and a big thank you to the guys that run all these forums so that we can all pass on our experiance to others. Not your fault about not looking into HMS, we all try to be content with what the Dr.'s say even more so if we have other stuff that needs to be seen to. Don't be too cross with the consultant that gave you this diagnosis, as many Dr.'s only have a very limited knowlage of the subject. We went through a few Dr.'s before we got to the bottom of all this, much the same as for getting a diagnosis of AS for my son J.

It might be of help to see if an OT could be bought in as their is much that can be done to ease the pain some, the right seat and desk hight stuff like that.

By the way my J. also has a high IQ, but struggels big time without the proper support, so I continue to battle on that front.

Well take care and feel free to contact me any time.

Anna

[Nic m]

Thanks Anna,

Im not too cross with him more with myself, but in saying that, he is a proffessor!

Thank you again, i may take you up on contacting you i feel a new splurge in learning coming on.

Nicola x

[mum23]

Thanks Anna,

Im not too cross with him more with myself, but in saying that, he is a proffessor!

Thank you again, i may take you up on contacting you i feel a new splurge in learning coming on.

Nicola x

Anna

 

 

Anna I have edited this post as under forum guidance professional's names cannot be included in posts.

Nic m-- Anna was asking the name of the prof-feel free to pm her.Thanks Karen.

Edited November 8, 2007 by Karen A

[loobylou2]

Hi not sure if this is any help but here goes! My daughter is 13 and has aspergers and bipolar. she seems to feel pain an awful lot more than anybody else and if she gets a cold she honestly believes that she is so ill that she is going to die! Also in ref to going shopping, she has to know exactly which shops we are going to so that she can wear the 'right' clothes. she panics if we tell her we are going to one shop and end up going to another as she feels everybody will see that she has the 'wrong' clothes on. don't know if this was one of the problems your daughter was having, but it might be worth exploring with her

Good luck!

Loobylou2

[Nic m]

Hi loubylou2, thankyou i appreciate you letting me know this and it does help.

After working out a few things, i think it was a whole combination of things, but we are having a good few days just now and her mood has lifted.

I think the major stress was homework and how the teacher was speaking to her.this has been resolved for now, thank goodness.

Her hyper mobility is being looked at again as cold weather and stress seem to be making things worse.

Thank-you again

Nicola

p.s. we also have dressing for different shops/places.

[loobylou2]

Glad things seem to be getting better! interesting about the clothes thing, we thought she was just being fashion concious but its a real problem for her and she panics the whole way round if the clothes aren't right! hope ur dd gets some relief from the pain soon

Loobylou2

[Nic m]

Thank-you, louby-lou

my wee girl is very fashion concious but has definite ideas about what to wear for

each occassion.

Have GP appt for tomorrow so fingers crossed.

Louby lou, my dd is very aware when people stare at her and this makes her anxious, they do stare when we are out but this is because she is quite stunning and has a very funky fashion sense! Now that she is less stressed of late she copes a bit better and will dress as she wants and worries a bit less about the stares.

Maybe your daughter also has admiring glances, which she struggles to interpret?

 

Nic

[loobylou2]

Nic, you're dead right, she is very good looking and she can't accept that people are looking at her in a nice way. she's the same with peers at school, there are loads who like her and thinks she's great but she won't believe it. Its such a shame, but I can't seem to make her understand. Maybe she'll grow out of the worst of it in time.

Loobylou2