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Posts Tagged ‘treating eating disorders’

What they don't tell you about eating disordersWelcome to all my new followers. Thank you for joining me. Whilst it’s lovely to have you hear, it means though, there are more and more searching the internet to find support, resources and answers when facing an eating disorder.

Thinking back on our experience and what we have travelled through plus what others have shared, there is a list of things that aren’t told to you when you start this journey. You find them out yourself the hard way and often alone. Some come as a surprise, others you realise are normal but you didn’t think about it. So I thought I would list them, just so it’s out there and because medical support teams don’t tell you.

  • You (the carer) are often the front-line and sometimes only line of care. Funding and resources can make it very difficult to get what you may need.
  • This is going to be a long journey. You won’t just get well after the first ’round’. It will take years in some cases.
  • You need to treat yourself for self-care just as much as you care for your loved one. It’s essential to survival.
  • Your marriage or significant relationship will be tested to the max. Take care of it.
  • This is NOT your fault. It’s not your parenting or your family. It is a genetic pre-disposition.
  • How exhausted and OVER it you will be. How refeeding is draining. That you will have a list of appointments on a weekly, fortnightly, monthly basis that you might have to drive miles to.
  • You will find yourself up against schools, doctors, clinics, friends, family. Most have a ‘warped’ idea of eating disorders. You have to explain and educate just to get the care your loved one needs.
  • You will need to swat up on symptoms, treatment, research. No one else will teach this. As you are the front line you need to know this stuff.
  • There are not enough resources or funds in place to provide what your loved one or you will need. That includes treatment centres and hospital beds. And a lot of written resources are often out of date (badly).
  • You are not alone – even if it feels like it. There are many of us on the internet, facebook and other medias who are travelling this journey and can support you.
  • Your child will become a totally different person – loud, rude, violent, abusive, manipulative and lies. This is the illness not your child.
  • Logical, clear, rational thinking will not be part of your loved ones thinking. The illness is in full residence and they are not able to eat, care, stop or save themselves when they are very ill.
  • When really sick, they smell. This really threw me. My beautiful daughter smelt like death – sour, old and decaying. The body is breaking down and the smell starts from a relatively higher weight than you think.
  • Watching the lanugo (fine hair) grow on your child body. Also quite freakish for a parent. It’s the body’s way of keeping warm when there is no fuel to feed it or enough fat to warm it.
  • Night-time heart rates go much lower than day time. Whilst doctors do the medical observations they only ever do day-time, standing and sitting ones. At very low weights the night-time heart rate is actually very scary and can be dropping into intensive care levels without you knowing it.
  • Medical professional won’t know it all. Medications are one big area they are in the dark about. It’s trial and error, of sometimes many medications tried or grouped to find something that might work.
  • That relapse is every parents nightmare, when in actual fact it can be monitored and cared for quite closely by an aware and caring team.
  • There will be a before ED and an after ED state for your family. It will affect everything and the way you live and think for years to come – even when your loved one is fully recovered.
  • Eating disorders are a family illness. It will affect all the members and relationships within.
  • How quickly your loved one can develop an eating disorder and become critical.
  • The blood results will stay ‘normal’ for ages then suddenly drop at the last possible minute. Make sure you have medical support around you.
  • Hope is real and full recovery possible. Even good levels of recovery are better than the original illness.
  • Associated and long term digestive problems, bowel problems, bladder problems, over health problems, teeth, bones, Vit D, Vit B, calcium levels.
  • Despite all the pain, fear and the enormity of it all, you will be given strength to do this.

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I have deliberately held off writing this post until I had a better understanding of what, how, why etc. Medication is also a sensitive subject, both for sufferers and for parents/carers. Some of the negative has to do with negative media impact, doctors who hand out medication like bandaids and lollies and news stories. Others just don’t like the idea of being medicated for holistic reasons and fears of dependency. Those who have ED’s don’t like being medicated because it might make them well and they don’t want to gain weight, get better, or be helped. So I have observed, read and waited. There is very little written about medication apart from the medical standard paragraphs. No one actually says what it can be like, what are the pros and cons. Maybe this will help.

The main treatment is usually a form of anti-depressant that is aimed not just at depression, but can be aimed at anxiety as well. The important thing to be aware of is if the sufferer is under 18. Teens in particular are limited in what type of anti-depressants they can take. They need to be watched closely for side-effects and how the medication may affect them. Another very important awareness is to make sure there are no other mental illnesses presenting. Those with bipolar for example can be adversely affected by normal anti-depressants. The medical practitioner prescribing needs to have experience with eating disorders, mental illnesses, depression etc and be wise in how they dispense them. It was our psychiatrist that did my daughter’s medication and I am glad Sophie didn’t take any medication from her GP. The psychiatrist level of expertise with medication is far greater. A good medical practitioner will tell all the right reasons why this medication could help and they will talk about the side-effects. They will also tell you what may happen if you don’t use medication. Then make a decision based on that, BUT also be flexible. The decision is NOT set in stone, and can be changed as time moves on. You may need to change that decision in the best interests of recovery.

Handing out medication as soon as the patient is diagnosed is also to be carefully looked at. Those with restricting anorexia, malnutrition, low weights etc get depression and anxiety from not having their body functioning properly. Depression is a major side-effect of the low weight or severe malnutrition. Once the body comes back to normal weight, and is receiving full nutrition, the depression and anxiety often disappears or subsides to a level that doesn’t need medication to manage it. A point here is that most anti-depressants don’t work at low weights anyway.

I think the biggest thing for all of us, is to not close our minds. To not do a knee jerk reaction and say ‘oh no your medicating me or my child’. The medication is not evil and is misunderstood by many people. It works just like medication for other chronic or severe illnesses. It helps the body and mind recover. It does not do for parents to read internet stories about incidents involving anti-depressants. The chances of your child doing this is so minor is it ridiculous. As usual the media can blow everything out of proportion.

I have realised this post is going to have to be broken down into instalments. I cannot write all that needs to be written in just one post – it will be a small book worth. My next posts will be the pros, then one about the cons and other medications. This one ended up being just about anti-depressants.  My internet won’t be available either from the end of this week for about a week, so I am sorry to have a delay on the rest of the medication posts, but they will happen.

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Number of  prescribed medicines daily: 4

Number of dietary supplements daily: 4

Number of foods my daughter thinks is safe to eat: 12 (3 of which she wants to drop)

Number of friend outings in past year: 3

Number of medical appts a week: 2-4

Weeks attending school since July last year: 11

Number of times she food bickers/fights daily: 3

Prescribed exercise routine sets: 30 when it should be 10

BFF: 0

Number of times going up and down stairs daily: average of 10

Strength of inflexibility of meals and times: 100%

Fear of being made to expand diet: 100%

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