Help!

[Fen08]

I have just found this forum and was hoping someone may be able to give me some advice.

 

I have a 9 year old daughter who has a recent disgnosis of Aspergers.

 

Meg has always suffered from insomnia and never appears to get tired however busy a day we have. In addition to this we have an ongoing issue of stress and anxiety which appears to take the form of seperation anxiety leading her to constantly seek reassurance and approval.

 

I know this may seem to be a bit of a contradiction considering she seems to suffer from seperation anxiety but the sleep and anxiety problems appear to have become MUCH worse since the start of the summer holidays. This may be due to the significant change to our routine.

We are now having to settle her every 15-20 minutes until around 2-3 am every night and during this time she is vomiting, retching, crying and shaking.

 

She has become totally fixated on the fear of leaving me at bedtime that it is almost the only thing she thinks about, she has hardly eaten a thing for 3 days and often gaggs when eating.

 

I have made an appointment with the GP for Monday but I am unsure what I can expect in the way of help, someone has previously mentioned Melatonin but I am under the impression that my GP will not be able to prescribe this?

 

I am really just looking for any help or advice you may be able to offer either with things I can try at home or in terms of what I should be asking the GP to do for us.

 

Thanks in anticipation, a very worn out Mum!

 

[justine1]

Hi I dont really know if I can help much,my son is six also recently diagnosed with AS,he used to suffer in the way your daughter does until he was two,I started working night shift and after a week of crying,shaking and vommiting he did start to sleep without me and would be waiting with open arms when I returned,I am not saying what you should do but as hard as it may be it is worth trying to leave her with your other half or family member,someone who wont call you every minute it is extrememly hard I have been there but in the end it is so worth it.I am thinking that she may be suffering a sleep disorder so it is likely they will try her on sleeping pills but this will be a short term,they will want to get to the bottom of it and then wean her off meds.With the eating,firstly some eating problems are connected with lack of sleep so it may be that she will eat better when she gets better rest,secondly it could be part of AS my son often goes through stages of eating one type of food generally he likes anything with cheese esp.lasgna,I was told that if a child with AS only wants one food you only give them that food my son usually would vomit food he did not like,thirdly she may have allergies which again affect sleep,so her diet may need to be looked at,not saying you not feeding her properly but my mother suffers from wheat,diary and lactose intolerace and she often suffered mood swings,headaches and insomnia before she realised it was down to what she ate.Sorry I am not much help,I know you will get it sorted when you see a GP,good luck.

[brooke]

Hi Fen08

My son is nearly 9 and has never slept well. After his diagnosis his pead prescribed melatonin for him to help him settle at night time, it is not addictive and apparently its something the brain produces naturally just some people dont produce enough. It doesnt stop him from waking in the night if he is worried about something but it definately helps him get off to sleep. I dont think a gp can prescribe it but i would ask for a referal asap. Does she have a night light this also helped my son settle a bit better.

As for the anxiety this is something my son has only recently started, but its more to do with being on his own or getting really worked up over losing something even if he hasnt lost it he will worry incase it gets lost . Unfortuately i dont have much advice but i can really simpathise with you <'>

Brooke

[julie1]

Hi, its very hard to manage without any sleep i dont no how you do if its the same every night. my 2nd dd had trouble with sleeping and she was so scared when she was in bed. The way we managed was i slept with her, that helped a little by way of me not having her wake up everyone else. Things have changed now i moved her room around when she wakes up she can see me in my bed without having to get up. so now she nos where i am because she can see me. Things are not perfect but much improved. I hope you can find out how best to help your daughter. Everyone has there own way, not one way is right for all, but im sure you will find what is right for your family.

[Kathryn]

I have made an appointment with the GP for Monday but I am unsure what I can expect in the way of help, someone has previously mentioned Melatonin but I am under the impression that my GP will not be able to prescribe this?

 

I am really just looking for any help or advice you may be able to offer either with things I can try at home or in terms of what I should be asking the GP to do for us.

 

Hi Fen,

 

This must be very stressful.

 

Some people do manage to get melatonin on prescription, but practice appears to vary from area to area, so you could discuss it with your GP.

 

Have a look at the Medication section and go to the Medication and Herbal/natural supplements sub forums. You'll see loads of threads about melatonin in both and you can read about people's experiences with it. You can also look at other threads there for ideas about sleep remedies.

 

K x

[call me jaded]

Has she got a diagnosis of hyperactivity at all?

 

If she has you could look at the Hyperactive Children's Support Group who use the Feingold diet, basically taking all the 'nasty' food additives and phenols out of the diet. It's quite straight-forward to do and really at this stage you have very little to lose.

 

The other thing I would consider is to throw away the rule book and find some way of her maintaining contact with you at bedtime - two way radio perhaps?

 

I also know my DS could not fall asleep without my hand on him. I was just about to buy a weighted blanket for him when I changed his diet, but it would have helped I think. Have you read 'The Out of Sync Child'? I'm pretty sure DS suffered some kind of dizziness/spinning room phenomenon going to sleep. He used to grip me so hard. The OT showed me joint compressions which were great for calming that absolute panic.

Edited August 22, 2009 by call me jaded

[Cat]

Hi, its very hard to manage without any sleep i dont no how you do if its the same every night. my 2nd dd had trouble with sleeping and she was so scared when she was in bed. The way we managed was i slept with her, that helped a little by way of me not having her wake up everyone else. Things have changed now i moved her room around when she wakes up she can see me in my bed without having to get up. so now she nos where i am because she can see me. Things are not perfect but much improved. I hope you can find out how best to help your daughter. Everyone has there own way, not one way is right for all, but im sure you will find what is right for your family.

 

Yes I too moved into the rooms of both of my autistic sons because of sleep problems. At the end of the day we tried everything with the elder of our two and nothing helped at all. He would not take medication and I would not force him to. As he became older we were able to discuss his anxieties, fears and phobias and he eventually found a way to cope with them himself. He writes all of his issues down and leaves them for me in the bathroom and it works for him. He did reach a point when he asked me to leave his room because the time was right for him and I did and that was that. When we started having similar problems with our youngest (who also suffers from cyclical vomiting syndrome and has been known to vomit in his sleep) I moved into his room - separate beds of course. He overcame his anxieties and fears much quicker than his brother and I often wonder if this was because we did not try to deal with his issues without moving into his room for over two years, which was how long we tried to sort things out with his brother. My youngest asked me to leave his room when he was 10 and again that has been that.

 

Cat

 

[Sally44]

I hope you get some answers and help with this as you must be worn out.

There are some things you could try like a soothing light pattern projected onto a wall. Some use a TV - others swear against it. Having a firm structure and routine. Some sleep with their children - others swear against it. It is a case of trying what is available and what works for you. I did sleep with my son for some time. Now he sometimes sleeps alone if he feels okay. If he is getting stressed then I just let him sleep with me or his dad because if the stress levels escalate then he too can start either vomiting or wetting the bed.

My son has always vomitted easily and we have recently been to the hospital to have it looked at. But they didn't do any tests as they too believe it is related to stress and anxiety. Mostly his vomitting was happening around going to school, but they kept sending him home for 48 hours and he was missing alot of schooling. Anyway I was told about Cyclical Vomiting Syndrome. And this maybe what it is with my son. Until recently, when he was sick it was only the once and then he was okay. But the last episode lasted from 10.00pm until 2.00am in the morning with him constantly retching and being sick. He couldn't keep down any water or calpol/ibuprofen. And there was nothing we could identify that was bothering him.

It is very possible that the cycle of stress and anxiety and feeling sick is feeding into itself ie. it is not only her fear of not being with you, but also knowing that she will start to feel bad/sick etc and the anxiety about that will actually cause it to happen. I know this kind of flys in the face of what everyone says, but sometimes if my son becomes very negative about a certain routine, then rather than sticking with it I change it completely and he can be okay with the new routine. Because the familarity of the old routine, what it means and how it makes him feel becomes part of the problem itself. Does that make sense?

Do you know what aspect of the separation she fears? Does she think you will leave and not return. Or does she think she won't be able to find you again? Has she seen anything ie. DVDs etc about divorce or separation etc and it is playing on her mind?

When you go to see the GP have everything written down to prompt you to remember everything and where possible ask for any referals to be to professionals that have experience about ASDs.

I don't have any experience of medication, I have been lucky so far in that respect. But sometimes it can be helpful to get you through a difficult stage so it doesn't have to be a permanent thing. And and some children have to have it to function. But remember to mention and think about your own health, because you have to be able to function yourself. So if the advice being given is not working then don't feel a failure if you end up sleeping with your daughter for some time. A good nights sleep is worth its weight in gold.

[chris54]

Not really advise but if you are up all night of at least a good part of it you would be entitled to claim DLA.

As if your not claiming do so.

[Cat]

 

It is very possible that the cycle of stress and anxiety and feeling sick is feeding into itself ie. it is not only her fear of not being with you, but also knowing that she will start to feel bad/sick etc and the anxiety about that will actually cause it to happen. I know this kind of flys in the face of what everyone says, but sometimes if my son becomes very negative about a certain routine, then rather than sticking with it I change it completely and he can be okay with the new routine. Because the familarity of the old routine, what it means and how it makes him feel becomes part of the problem itself. Does that make sense?

 

This makes perfect sense to me Sally. It's like the itch scratch cycle and sometimes the only thing to do is to break that cycle or in our case routine. I know that my sons cyclical vomiting syndrome is stress induced for sure and the more something stresses him out the worse it becomes. Once he has had that kind of expereince he expects it to be like that everytime. Sometimes it is worth sticking with it but not at 3am when we are all passed our sell by date and need to sleep.

 

Cat

[Suze]

Hi, my son has had pretty bad sleep probs, sleep walking/hallucinations etc.He was prescribed melatonin when he was about 9 yrs.I would also have to sleep with him and wrap the quilt around him tightly and stroke his head, for him to go to sleep.He is now 14 yrs and thankfully those problems are long gone and I can,t get him out of his bed anymore ...........but thats just teens I guess .Some people may disagree but I,m all for easing the anxiety and perhaps doing the easiest thing which in this case would be sleeping with her or lying beside her till she settles or goes to sleep.Perhaps you could read together, listen to books on tape or just chat , anything to make the whole in bed going to sleep process less stressful for her.At the moment she is just getting to stressed and anxious about the whole thing.You may find a weighted blanket might help and she will feel more secure.My son did,nt like having a bare head and like stuff around his ears and head aswell.

 

...........but I,m pretty sure that in a few years time things won,t be this bad.They change as they get older and develop other stuff to stress you out

[Fen08]

Wow! just been reading through all the messages everyone left, I now have a long list of things try, as well as a list of things to ask the GP...he's going to love me!

 

I have given up trying to get her to sleep and now just let her look at books, watch dvd's (Mr Benn is a current fave) and play etc, I'm not sure it's the "right" thing to do but it seems to reduce her stress levels considerably. Although she is more relaxed if she is in bed with me it is still something I am trying to avoid as I find it has an adverse effect on the entire family.

 

It is also very frustrating and upsetting for My husband as she tends to only want me when her anxiety levels are high and becomes tearfull if he tries to hug me or her and with all our family living at least a 2 hour drive away it is hard to get any time without her.

 

Fen

 

[Sally44]

Wow! just been reading through all the messages everyone left, I now have a long list of things try, as well as a list of things to ask the GP...he's going to love me!

 

I have given up trying to get her to sleep and now just let her look at books, watch dvd's (Mr Benn is a current fave) and play etc, I'm not sure it's the "right" thing to do but it seems to reduce her stress levels considerably. Although she is more relaxed if she is in bed with me it is still something I am trying to avoid as I find it has an adverse effect on the entire family.

 

It is also very frustrating and upsetting for My husband as she tends to only want me when her anxiety levels are high and becomes tearfull if he tries to hug me or her and with all our family living at least a 2 hour drive away it is hard to get any time without her.

 

Fen

 

If she is getting upset at your husband hugging you or attempting to hug her, then firstly explain that that is what mums and dads do. That we all need hugs. But also ask her if hugging hurts her. My son, as a toddler, would run away if my husband entered the room and the look of terror on his face if my husband picked him up was quite scary. But later on he was diagnosed with sensory integration disorder and I think, as men are usually more rougher than woman, that he was just scared that he would be hurt. And he did used to complain, shout and cry that my husband was hurting him, but we could not see anything that should be causing pain and therefore ignored him. Now we know to just listen and believe him. If she is anxious around touch, then find out what she likes and what she doesn't. Sometimes bear hugs are okay when a soft squeeze is painful. Just talk with her about it. But don't let her control your behaviour. She might be getting distressed for you because if hugs hurt her and your husband hugs you then she maybe assuming you are being hurt. However if it is a controlling behaviour then just tell her straight out not to be upset. Mummy likes hugs from dad. That is why explaining to our children that their experiences are different is important because otherwise they can become confused or controlling because they are trying to get us to avoid sensory input that hurts them. But some children can like to control others as part of their diagnosis because they want the predictable outcome they get when they have controlled it. But you need to try to recognise the one from the other. Although their diagnosis does mean it affects family life in every aspect. You have to limit that as much as possible, and definately don't let them control the household. I have negotiated with my son that if he is very anxious he sleeps with me or his dad. If he is okay he sleeps alone. I make it very clear to him that mum likes to, and wants to sleep in the same bed as dad. But as Suze said, what is a problem today is usually gone and replaced by something else later down the line.

[Fen08]

Thanks Sally,

 

I think she is fairly sensitive to gentle touch, I must admit that although it had crossed my mind that this may be the problem I had disregarded it assuming that it couldn't be the cause of the problem since she reacts that way when my husband hugs me!

 

Despite us having concerns about her since the age of 2 it took another 5 years before we were able to get her assessed, we were met with a lot of people who wouldn't even consider her having Aspergers because she is a girl!

 

I am still learning to think in terms of ASD when I am trying to understand how she is feeling and often fall into the trap of trying to apply my logic to her concerns which is never going to work. I hope that makes sense?

 

Fen

 

[Sally44]

Thanks Sally,

 

I think she is fairly sensitive to gentle touch, I must admit that although it had crossed my mind that this may be the problem I had disregarded it assuming that it couldn't be the cause of the problem since she reacts that way when my husband hugs me!

 

Despite us having concerns about her since the age of 2 it took another 5 years before we were able to get her assessed, we were met with a lot of people who wouldn't even consider her having Aspergers because she is a girl!

 

I am still learning to think in terms of ASD when I am trying to understand how she is feeling and often fall into the trap of trying to apply my logic to her concerns which is never going to work. I hope that makes sense?

 

Fen

 

I think in many cases that is exactly it. We try to apply our logic - which is deduced from our experiences - into their world. And I find that many professionals do that as well. Add onto that the fact that they tend not to volunteer information and that leaves both sides in the dark. But I think behaviours can give us alot of clues.

 

[Fen08]

Hi all,

 

I saw the GP yesterday and he has written to our paediatric consultant to get us a referal to someone else! not sure who we'll be seeing but at the moment I'll take anything they can offer.

 

Fen