Registered: 1503310562 Posts: 8
Reply with quote #1
Our 11 son dx Anorexia in April. Hospitalised 2 weeks with low heart rate. Been refeeding at home since. He has gained 8kg. Had problems with vomit mouthfuls coming up a few weeks ago which has thankfully stopped now. CAMHS advised us to get him back to school and playing with his friends 2 weeks ago as his weight was good at 35.5kg. His meals began to drag out about 6 weeks ago to somewhere between and hour and an hour and half and crumbing everything he ate. He has also started this rapid fire spitting on the dinner table before and during eating saying that he has to check his spit to ensure there is no food in it and also wanting to rinse his mouth out. He even has to count the spits. It's very distressing to watch. It's obviously some kind of OCD thing. His psychiatrist told him 9 days ago that he would have 40 mins for a meal and he was to eat as much as he could without us insisting he eat every bite with the warning that if he loses weight he will have to go to ED hospital. Result is he has lost 1 kg. his mood has crashed with rages in full swing. We have removed him from school again as we feel he's too fragile for school just now, we have also stopped the exercise and are battling to regain the lost kilo. His doctor has said he will be making the call to have him admitted although we have no idea how long it will take or if it is the best thing for him. Any advice would be greatly appreciated. Very scared again. His medication has been increased from fluoxetine 16mg to 20 mg.
Registered: 1284535839 Posts: 3,402
Reply with quote #2
Sorry that your son continues to struggle so much.
Although the idea of maintaining friendships and giving some normality to life is a good one, sometimes it just doesn't and cannot work out. My D was out of school for over 18 months, she was incapable of participating or socialising in any normal way. It sounds as though your son's eating disorder is very strong still. Most of the behaviours you mention sound much more like ED than OCD. There is no one way to manage meals - time limited or as long as is needed, insisting on eating all or not but then offering substitutes if unable to finish. One thing that strikes me is that the CAMHS doctor does not truly get eating disorders. For your son to be able to eat to avoid hospital is almost impossible. The consequence is too far away from what actually is going to happen. Is the hospitalisation the right thing for your son? It is hard to say. For one so little I hope they are going to be letting you stay with him. You don't say where you are, but the policy in the hospital my D was in (Melbourne) was that children under 13 had their parents stay with them, those over 13 did not. Many places will have different policies, and I would want to know more before going down this path. What can you do to take back charge of the re-feeding in the meantime? It does sound as though he may not be fully weight restored. Should blind weighing be considered since he was so troubled by the number 35? My D although a few years older was only a few kg heavier when she was taking 60mg of fluoxetine, so he is on a very tiny dose. Ironically we have a dog on it also, he is 27kg and takes 40mg daily. __________________ D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Registered: 1503310562 Posts: 8
Reply with quote #3
Hi Foodsupport AUS
We are in UK. It's a specialised hospital age 11 to 18. Parents cannot stay with them. They have a school within the facility that is attended daily. His mood in between meals can be pretty good until of course he has to eat!!
Registered: 1363671262 Posts: 664
Reply with quote #4
I had a daughter who fell ill at 10 years old and hope our experiences may help you. I am not clear if your son is possibly underweight for where he should be. Please check the threads on here for for advice on that, as to looking at his past growth trajectory. Being average for his age and height could be way under where he individually should be. We had a heck of a time really figuring that out for our d as she had likely been restricting for long before we realized, as she had lanugo and decreased heart rate. So looking backward only gave a guess. Beware of that possibility also for your son. I am no expert, but if he might be underweight, I agree heartily with food support that a threat of hospital probably won't be enough to get him to eat faster. And I would be way less worried about how long it took to get the food in, than about getting the darned food in, if he is underweight. His brain can't heal if he is underweight. Period. Exclamation point. So you aren't going anywhere toward recovery for as long as he is underweight. Feed upward if you have any question at all. If he is underweight, I think it is really foolhardy to worry more about how long dinner takes than to worry about whether dinner happens.... unless you the parent sense that you can succeed at speeding dinner and still get in the calories. If not, calories win, if he is underweight. Trust your own instincts about what you have to do to get him fed. Someone else, who does't love him like crazy and isn't on the spot every day, won' be able to say what it takes to get him to eat as well as you will. Your child may have a more durable OCD, but severe malnutrition creates OCD symptoms for many kids possibly especially young ones. I thought our d had OCD when she was starving and before brain recovery happened. She doesn't now seem to have any more than a touch,not sure if she has any apart from food related issues we just don't see it. Don't despair, when his brain has a chance to heal that OCD stuff could likely fade away. Look at mamabear's posts on her (also very young onset) d showing heavy OCD that went away with refeeding and the family challenging the symptoms. I don't want to seem harsh, but when your treatment provider sounds surprised your 11 yo has anorexia that is as "entrenched" as a teen's, I think they don't know anything about ED in young kids. It is potentially just as severe as older onset, though may present a bit differently. All best wishes to you and please keep letting us know how we can support you. Also there is a thread on here for kids who had early onset that will be a comfort to you if you feel especially flamboozled to have it hit your little boy.
Registered: 1450168170 Posts: 940
Reply with quote #5
Our son was 12 when he fell ill. He, too, had OCD characteristics when under weight. As he has improved they have slipped away but it took a long time. Remember that psychological remission takes longer than physical remission and your son is not yet at either.
We had the endless meals times. To tackle it. We set a timer for 30 mins. I warned him when there were 10 mins left. Our son always ate watching YouTube on the iPad (still does). That is his distraction. At the 10min warning he would start eating. He would usually manage the meal within 40 mins. I had no consequences for missing the timer. Others on here have been stricter. Obviously it didn't get better from the one day to the next but by continuing the routine he got used to it and over a few weeks we got down to reasonable times.
Everyone thinks their kid is different. But mine is, really! So I had to use the professionals and this forum to get a variety of ideas and then apply the ones I thought would work. Remember the professionals give advice and that advice is based on what works for most patients, but not for all patients. Parents are in charge. I had to learn to trust my instincts and there was a good bit of trial and error. But we found a way and our son is doing really well, we are nearly there.
Our son was and still is blind weighed. The number is trauma he doesn't need. He also prefers not to know although he(or rather ED) kicked up a fuss in the beginning.
He couldn't handle school and recovery at the same time in spite of professionals advice. But has just returned to school full time and I am can't tell you how well it's going. Happy and engaged with a little nerves. But eating away, no prob.
ED takes our kids personalities and super sizes them. Our kid always had strong self determination and a neutral respect for authority so these were stronger with ED. But our family is close and strong so we used that. See what I'm trying to say. You know your son. Assimilate information, merge it with what you know about your kid and be prepared for trial and error. I know you will find your way.
D __________________ 2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles.
Swedish proverb: Love me when I least deserve it because that's when I need it most. We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle. If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination ) We cannot control the wind but we can direct the sail.
Registered: 1296569362 Posts: 5,588
Reply with quote #6
Hello from another mom of a young one. My d is now 17 and was diagnosed at ten. The great news I want you to hear right now is that she is completely, totally, 100 percent recovered and has been for 3 plus years. BUT it was a very long and difficult process.
My D had SEVERE OCD symptoms when underweight and for a few months thereafter. In fact she also had severe auditory and visual hallucinations as well as panic attacks. She had rituals surrounding everything and had a severe exercise compulsion.
When we first brought her in the initial diagnosis was " psychosis with secondary Anorexia". She did not have psychosis. She had Anorexia.
So here's my experience and advice: GET THE FOOD IN AND WEIGHT ON. I don't care how long it takes. We tried to do meals in like 30-40 mins but sometimes it took longer. And if it was really horrific, then she was required to drink ensure to make up for uneaten calories ( and she hated ensure). There were many many days and weeks that it felt 90 percent of our lives were spent sitting with her at the table. We watched 7 seasons of " Charmed". We drew. We played table games. We had spaghetti in our hair. There's still ensure on the ceiling. BUT EVERY BITE MATTERS! Every day, although you can't feel it at the time, brings you a molecule of your true kid back to you and slowly steals EDs power.
We also dealt with projectile vomit for about 6 weeks 4 months into refeeding. We decided to try sitting with her 24/7 for about a week and feed her tiny bites and sips every few minutes while reassuring there would be no vomit and distracting her. It worked. We also tackled OCD behaviors with exposure. She tried to tap her big toe on heat vents in a pattern when she walked by so I would get between her and the vent and talk her down and do breathing exercises and talking out loud about what her dress would look like if she was at the Grammys etc. We got a kitten. She named her and picked her out. BUT the kitten and litter box were upstairs so in order for my d to see her, she had to go up the stairs like a normal kid. We used that word a lot. So my h would hold her torso and I would move her feet one at a time up the stairs while reassuring her. It took a few days but she decided to go up the stairs as fast as she could as long as she didn't do rituals. I watched as she talked out loud to her head saying " I can do this. I want to see my kitten. She is mine. Come on! I can do this." It took 30 mins of this and then she did it! One foot at a time! No taps and turns and claps etc. and she was so proud! And I wept. And she never did it again. It was like that in big ways and small ways. Just learning EDs language and how it ticked. If my D said " lets go out to eat but no fries" then we got her fries. She needed us to kick ed for her in those beginning hardcore months. She needed to give her the relief of ED blaming us. When we made her stop all exercise, she months later told us how relieved she was bc her joints and spine and pelvis ached. But ED doesn't let them tell on it for a long time. If you have not lived through this, you would think it's impossible. Totally insane. But we did live it and do it and it's the truth for EVERY PERSON ON THIS FORUM no matter how you get there. Hospital,home, etc FOOD IS MEDICINE. Eating disorders cannot be treated without food ( and lots of it and FATS for your boy big time) and weight gain and the gaining for growth and puberty. You will be in that club with those of us who had kids get hit pre puberty.
But it gets easier. And the fighting becomes less. And the behaviors start to fade. One meal takes 30 mins without spitting. And each small victory feels like the top of Mt. Everest and it IS. Your boy is in there. Go get him.
I'm feeling really emotional today. Typing this has been therapeutic. My d got her wisfom teeth out 4 days ago and had a sinus perforation. She has been hurting and swollen and eating only soft foods. I have been making her a few things but she has been eating a ton on her own. Ice cream in bed. This am she said " oh my god I miss crunchy food and chewing and eating for real!" There are still moments it hits me that this is that little sick psychotic terrified ten year old standing in front of me an about to be senior in HS. She's amazing
You are going to do this. Trust your gut. If he needs a higher level of care then get help from the forum from people who know your area and options etc.
Rooting for you from my heart ❤️ __________________ Persistent, consistent vigilance!
Registered: 1396016102 Posts: 4,785
Reply with quote #7
As the others have said, as a parent you will of course listen to "the professionals," but in the end, you are the one who will have to make the call about following all of their advice, or some, or none. It's hard to think of anyone here who got such superb advice as to merit following it all.
I wonder if it would be useful to let him know that losing fluids by spitting is not acceptable so he will need a sip of Fortisip for every time he spits. I also wonder if he is able to keep from doing this if there is a "witness" (i.e., a friend or relative) eating the meal with him - if so, perhaps you will want to invite visitors to join you often. Hang in there. It really does get better. xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡