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12 year old getting very thin


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My 12 1/2 yo ds has been home sick with Epstein Barr for the last 6 weeks. He hasn't had a good appetite since he got sick and now I'm getting a little concerned. He was thin to begin with - 76 lbs at 5 ft tall. But he's lost 5 lbs in the last 6 weeks and isn't showing any sign of a plateau. I do not think he is restricting his eating purposely - I think he just doesn't have much of an appetite and has been dealing with an upset stomach.

 

Should I be worried about this? I've been focused on so many other things, and have not been well myself, but now I'm afraid I've let this go. Please, if anyone has experience with this, let me know what you think. Am I worrying needlessly, or should I be on the phone to the doctor? How thin is too thin?

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mama -- i don't want to freak you out. . . but if you are wondering if you should be worried. . . i think you should be. weight issues can turn very serious, very quickly.

 

we had a bit of a different situation with restrictive eating due to a herx-like reaction to an antiviral. ds was slight to begin with and a couple of pounds represented a large percentage of his body weight.

 

ds only had about 7-10 days of this and then slowly got back on track. i recently looked at some pictures from about after a month of more regular eating from him. he still looked dangerously emaciated -- i was stunned at seeing them. it's hard some times when you are in the thick of it.

 

i'd definitely suggest consulting with your docs -- if only to be on the safe side. it really is amazing how quickly things turn. good luck!

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Mama2-

 

I agree with smarty- go with your gut on this.

 

Sure it could be loss of appetite due to EBV, but it could also be restrictive eating due to ocd, due to pandas, due to EBV.

 

Both of my kids have had eating issue with pandas. One exacerbation, my oldest restricted her eating pretty severely due to fear of vomiting. My other daughter has restrictive eating as a low level, early warning sign of an exacerbation (she is a picky eater to start with, and when pandas hits, nothing is palatable to her, she wants to eat, but has trouble finding stuff she will eat.) Both have lost weight at times due to pandas. For us it has been scary, because it was the first and only symptom that we felt put them in real, physical danger.

 

I don't know what the answer is for you. For us, it has been pandas treatment: steroids and/or pex has immediately wiped out these issues. We did not have to approach it with any type of psych help.

 

All times we have dealt with it, however, while waiting on treatment, we employed some minor strategies to get the calories in. Hope something here helps...

 

I tried to keep healthy, but palatable, snacks on a table in the kitchen at all times. (cheese and crackers, fruit, dried fruit, nuts, mini muffins)

 

We fed them many meals in front of a movie on the tv (we usually do not allow this). I would make up a tray- again a meal of small bites seemed to go better- mini sandwiches, fruit, milkshakes or smoothies, veggies and dip, cheese, etc.

 

It seemed to work better NOT to ask what they wanted for a meal, but rather make a tray with lots of variety, of mini size portions.

 

We allowed unlimited snacking- at that point, we were down to a calorie is a calorie, and figured when the pandas was under control we could clean up the diet (which we did, and they never really went overboard on snacking, it was usually more a timing issue). Ice cream was a big one, so were milkshakes and fruit smoothies. Now they sell a lot of frozen greek yogurt, which although I know is high in sugar (like any icecream) at least it has a good amt of protein.

 

 

 

 

I think one way you can really tell whether is is normal loss of appetite vs ocd/ pandas- is his reaction. If you put a meal in front of him and gently push him to eat, does he seem to over react, or no. When something is ocd, for my kids, a big clue is their reaction to it- it is out of proportion. So- when you lose your appetite due to illness, you might feel I want to eat, I just have no appetite. But someone with ocd will not be calm about it, they will start getting emotional if they feel they are being pushed into a fear. (at least this is it with my kids) Also we have noticed with ocd, the "excuses" change, according to what they think we will accept " I am not hungry now. I don't like that. I am tired of that meal. It is because I am sick that I have no appetite. I am to tired to eat.

 

Hope this helps.

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I agree, go to the doctor. Have you tried steroids? Sometimes steroids help with weight gain. 70ish pounds is definitely too thin for a 12 1/2 yo boy. My son is the same age and about 5'2". And he is around 110 lbs. Boys at that age should be in the pattern of gaining weight, then spurting up, etc.... I agree with the suggestions of just leaving food out and available all day. Pack extra snacks in his lunch. Lots of variety. Just stay away from the emergency room, and call a doctor who knows you that you can trust.

Good luck.

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Thank you so much for your feedback. Right now, I don't think the weight loss is due to PANDAS/OCD, but thanks to your comments, I'm aware now that it could change quickly. In his first year after sudden onset, he did have some restrictive eating due to aversions/phobias - he wouldn't eat lunch at his old school because of the bees by the lunch tables and he wouldn't eat if he could see a sticker - so I'm aware its a danger for us. Looking at your comments, I notice that he doesn't get upset when I try to get him to eat, he's just indifferent. Yesterday I found myself feeding him a piece of peanut butter toast that he was ignoring, but every time I held it to his mouth he took a bite. I'm not hearing different excuses for not eating, except that he's full. I loved the idea of putting out a tray of snacks - it will make him more likely to eat and will be a visual reminder for me to keep the food going in if he's not doing it himself.

 

I'm still unclear how serious his current weight is in physical terms, but I calculated his pounds per inch of height and it was 1.18. I figured out that if my weight was 1.18 pounds per inch, at 5'5" I would weigh around 76 pounds - that really alarmed me. Also, when he changed for bed last night I could see bones sticking out everywhere, almost skeletal looking. So I think I will call his pediatrician and just check in with her about the weight loss. In the meantime, I will keep my eye out for any signs of this turning into full-blown food restriction on his part.

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When my DD had EBV last winter (when she was almost 7) she lost weight as well. She couldn't shake it on her own - it hung around for 3 months and the artimisinin the LLMD hoped would help didn't. We then turned to L-Lysine and within days she started to feel better. We used L-lysine for 3 weeks and she was so much better - and started to put the weight back on. The one thing we had to keep an eye on was that l-lysine can increase anxiety over time, so toward the end of her treatment, we added a little tryptophan to keep the anxiety away.

 

The other thing you could try is zinc. Dr Greenblatt has a book about anorexia and he theorizes that zinc deficiency causes a loss of taste, which plays a role in less than adequate food intake. Klinghardt describes zinc as the immune system's bullets. So a zinc supplement might help in two ways. Greenblatt says that when you're zinc deficient, zinc has no taste. When you have enough of it, it has a bitter taste. Seems to be true. DS and I have pyroluria and the zinc supplement we take has next to no taste unless we take 3-4 pills/day. But for my DD who doesn't have a deficiency, she balks when I try to give her even one zinc capsule (like when she has a cold) because she thinks it tastes foul.

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Thanks LLM. What is the L-Lysine supposed to do for EBV? I'm hesitant to give him anything that would increase anxiety, as that's our biggest problem right now (other than the EBV). Regarding the zinc, are you saying you take a chewable supplement and can't taste it? How much does your son take per day? This might be worth a try to help his appetite and immune system.

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I agree w/ the others, this is an issue to address quickly. Let me give you a comparison. My DS is not quite 9. He's 53" and he weighs 65lbs. He's lean and thin. He's had issues w/ restrictive eating in the past. He's been eating well for the past year and gained 8lbs. At 70lbs and 60", your son is very thin and has very little margin to lose more weight.

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My 12 1/2 yo ds has been home sick with Epstein Barr for the last 6 weeks. He hasn't had a good appetite since he got sick and now I'm getting a little concerned. He was thin to begin with - 76 lbs at 5 ft tall. But he's lost 5 lbs in the last 6 weeks and isn't showing any sign of a plateau. I do not think he is restricting his eating purposely - I think he just doesn't have much of an appetite and has been dealing with an upset stomach.

 

Should I be worried about this? I've been focused on so many other things, and have not been well myself, but now I'm afraid I've let this go. Please, if anyone has experience with this, let me know what you think. Am I worrying needlessly, or should I be on the phone to the doctor? How thin is too thin?

 

 

I agree with the others who have posted -- this is a problem. We are battling a PANS related morphing of OCD into anorexia episode. My 13 year old d is 5 feet tall and is down to 77 lbs, and the doctor of the anorexia clinic recommends inpatient refeeding. Yes, this is a problem. I would recommend you get to a clinician who works with family based Maudsley methods to combat anorexia in children. Refeeding is essential for PANS to recover. My best--I know it is hard.

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I agree with the others who have posted -- this is a problem. We are battling a PANS related morphing of OCD into anorexia episode. My 13 year old d is 5 feet tall and is down to 77 lbs, and the doctor of the anorexia clinic recommends inpatient refeeding. Yes, this is a problem. I would recommend you get to a clinician who works with family based Maudsley methods to combat anorexia in children. Refeeding is essential for PANS to recover. My best--I know it is hard.

 

Thanks for posting T. Mom. This was the most alarming post so far. Your daughter is the same height and 7 pounds heavier than my son and the doctor is recommending admitting her for inpatient treatment? What exactly is refeeding?

 

Alex ate more today. The recommendation of leaving a tray of food out and not asking him what he wants to eat was helpful, and we had his favorite take-out for dinner. Our pediatrician, who works with lots of autistic, pans and other special needs kids, is recommending a smoothie with whey protein powder once a day for the additional calories, protein and glutamine. We also talked about the fact that some of the weight loss is probably muscle loss from laying around at home for 6 weeks. She is also rechecking his WBC, which was low 6 weeks ago, and iron and zinc levels. She said she doesn't want him to lose any more weight, and wants to work on putting on the weight as he recovers from epstein barr. We'll see how it goes.

 

I don't think I'm seeing signs of anorexia, but I'm aware I'm no expert, so I am going to monitor this closely.

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Thanks LLM. What is the L-Lysine supposed to do for EBV? I'm hesitant to give him anything that would increase anxiety, as that's our biggest problem right now (other than the EBV). Regarding the zinc, are you saying you take a chewable supplement and can't taste it? How much does your son take per day? This might be worth a try to help his appetite and immune system.

 

L-lysine is an amino acid found in many foods. It's not an essential amino acid b/c your body can make a small amount of its own. But it's still critical to health. L-lysine is an anti-viral, effective against certain viruses, including EBV and HHV. Lysine prevents these viruses from replicating, eventually lowering your viral load so your immune system can mop up the rest. This is the same way certain antibiotics, like azithromycin, work against bacterial infections.

 

Two things to bear in mind - lysine and arginine (another amino acid) are ying/yang. If you consume a lot of foods high in arginine, you'll be limiting the lysine in your body. So keep an eye on that. Second, as for the anxiety, it probably won't become an issue right away. You can balance it out with comfort foods like peanut butter that contain tryptophan or you can supplement with tryptophan or 5-HTP.

 

As for the zinc, no - we don't take a chewable. We use CORE, which contains a number of ingredients - primarily zinc and B-6. It's a capsule but if you let it sit in your mouth for just a few seconds before you swallow, you'll sometimes get a bitter aftertaste. When DS and I have cut back on our daily intake (he takes 4, I take 3), we stop tasting any aftertaste. My DD, even with just one pill, complains about the taste - she has a bad habit of swishing a pill around in her mouth for about 30 seconds before swallowing (which sometimes causes her to spit any pill out b/c it starts to dissolve and have a taste). But you could try something like Zicam, which is a lozenge or sublingual strip - found in any grocery store or CVS-type store.

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If he will drink smoothies, GNC sells a type of weight gainer smoothie that at one point in 2010 was the only thing our son (ate) for 7 mths. I had his Dr. and a Dietician check it out, they both said it was fine. He was getting about 2600 calories a day drinking 3 a day. Not a great diet but it kept his weight up and kept himout of the hospital.

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Not sure if your son is on any antibiotics, but my daughter completely lost her appetite when she was on Biaxin and Augmentin. It was not an anorexia thing, she just had no appetite at all. We have switched antibiotics for other reasons and her appetite has completely come back. My husband has used those GNC gainer milkshakes for bodybuilding and they helped him gain weight, he would also mix ice cream in them for extra calories.

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I agree with the others who have posted -- this is a problem. We are battling a PANS related morphing of OCD into anorexia episode. My 13 year old d is 5 feet tall and is down to 77 lbs, and the doctor of the anorexia clinic recommends inpatient refeeding. Yes, this is a problem. I would recommend you get to a clinician who works with family based Maudsley methods to combat anorexia in children. Refeeding is essential for PANS to recover. My best--I know it is hard.

 

Thanks for posting T. Mom. This was the most alarming post so far. Your daughter is the same height and 7 pounds heavier than my son and the doctor is recommending admitting her for inpatient treatment? What exactly is refeeding?

 

Alex ate more today. The recommendation of leaving a tray of food out and not asking him what he wants to eat was helpful, and we had his favorite take-out for dinner. Our pediatrician, who works with lots of autistic, pans and other special needs kids, is recommending a smoothie with whey protein powder once a day for the additional calories, protein and glutamine. We also talked about the fact that some of the weight loss is probably muscle loss from laying around at home for 6 weeks. She is also rechecking his WBC, which was low 6 weeks ago, and iron and zinc levels. She said she doesn't want him to lose any more weight, and wants to work on putting on the weight as he recovers from epstein barr. We'll see how it goes.

 

I don't think I'm seeing signs of anorexia, but I'm aware I'm no expert, so I am going to monitor this closely.

 

Hi -- I am sorry to alarm you, but yes, my daughter is 5 feet tall, 77 lbs and just turned 13. Because her BMI is considered dangerously low the anorexia doctor is recommending inpatient care with a supplemental feeding regime, to ensure she is renourished as soon as possible (since fighting us at home.)

 

We are doing all we can to keep her home and do FBT (family based therapy) with specialists in an effort to restore her weight and avoid hospitalization.

 

Here are two links to the CDC BMI chart info. by age -- plug in the numbers -- age/height/weight and it will give you the body mass index.

 

http://apps.nccd.cdc.gov/dnpabmi/ (the chart for calculating BMI by age)

 

http://www.cdc.gov/healthyweight/assessing/bmi/childrens_bmi/about_childrens_bmi.html (general info on BMI)

 

 

 

You might also want to google "re-feeding syndrome" -- our doctor was very concerned about this with our daughter when she was down to 73 lbs and we were starting to monitor her eating.

We had to have blood checks for various levels every 3 days while her weight was reestablished (once they start to eat again it can get dangerous, as the body may have a seriously bad reaction.) Re-feeding syndrome needs to be monitored once a person starts getting nourishment after being so malnourished.

 

Did your doctor give you a meal plan or guidance on renourishing him? We are using Ensure Plus, on top of a regular meal plan.

Hopefully this weight loss for your son is a temporary result of the other illness and he will quickly return to health. I would encourage you to read about re-feeding syndrome and seek help if needed as soon as possible.

 

My best, pm me if you have any more questions, glad to talk.

Edited by T.Mom
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