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How long can a child go without eating


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When I was an anorexic kid and liked the frozen stuff, I think part of it was sensory - I was very particular about food temperature overall, needing things either very hot or else freezing for them to be acceptable in my mouth -- but part of it also had something to do with pacing. Eating frozen things, as I mentioned, slowed down the process and prevented the unbearably uncomfortable "stomach feel" of the food, which was my major problem. (I never had dysmorphism issues). I also ate extremely hot soup. I remember nuking it several times per bowl to keep it hot enough throughout the meal.

 

Bizarre to recall all of these details.

 

Dut, my kids are doing well, thanks for asking. They are still doing 0.75 g/kg IVIG monthly (after the original 1.5 dose), and are now off of antibiotics altogether. Just today, ds6 became crabby (using snippy tone of voice with me, bugging ds4, etc.), and mentioned that he didn't sleep well last night. His IVIG is due on Friday. We're having no OCD or tics or sensory stuff, or any of the other "weird" neuro stuff (like writing in mirror image, which both used to get, or leg-dragging sensory stuff). We've seen huge gains in physical coordination for both kids, reading and writing (for ds4), and improved digestion for ds6. However, we still have some mood deterioration right at the end of each IVIG cycle. (Although this time, ds4 seems to be holding just fine so far.) It's not bad -- and ibuprofen helps -- but they are SOOO good for the first few weeks after each IVIG that it still really bothers me to lose ground at the end of each cycle. I have to admit that it's disappointing, though not surprising given their deficiencies, that they are still clearly dependent on frequent administration. We are moving to doing 0.75 every 3 weeks for the rest of the summer since it fits our schedule best and we want to see how that works, but then we will switch to a higher dose less often again once the school year starts. Dr. McGhee at UCLA seems very flexible and committed to figuring out what works best for them, so I'm optimistic that we'll be able to optimize the approach eventually. Ds4 tolerates the whole thing so well - doesn't even flinch at the needle stick - but ds6 screams bloody murder at the needle and I hate putting him through it. Neither has been having side effects from the procedure so we'll be speeding it up from here on out, so it should be done in less than a couple of hours.

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PhillyPA-

How much Augmentin is your son currently taking? That is good that he just started steroids- that will hopefully kick in soon and really help. Just make sure that he is getting enough Augmentin and that if you don't see marked improvement, you switch to Zithromax.

 

I don't have any experience with my children experiencing anorexia as part of their PANDAS, but it is something I keep on the look out for. I was a PANDAS child and I remember very well going through a period of anorexia at a pretty young age. I was somewhere between 4-6 years old and refused to eat for fear of choking. Our pediatrician told my mom that I would eat when I got hungry enough and eventually i did start eating, but that is not always the case.

 

Nine years ago when my daughter was diagnosed with PANDAS, I tried to obtain my medical records from that time of anorexia, but they were already destroyed. I was very interested in seeing if I was put on an antibiotic at the time for an ear infection or strep, b/c I beleive that is most likely why I started to eat again. My guess is that I was given an antibiotic for something and it got rid of strep I most likely had and did not know.

 

Colleen

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Yeah, that's a huge one.

 

...and contamination/poisoning fears.

 

momto2pandas - (sorry don't mean to hijack but) I was just wondering how your children are doing?

Most see 3 types of eating disorders associated with PANDAS.

  • Fear of choking.
  • texture, taste, color/sensory issues
  • body morphology/anorexia

Get on these right away. You can get a lot of calories into drinks, but get him seen by a specialist in OCD and eating disorders. Hopefully the augmentin will help.

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He now weighs 47lbs. However, today may be a turning point. He ate a bag of cheetos and a meal replacement bar. Very solid foods. He said that he thinks he can swallow now. This is day 10 of the antibiotic and day three of the steroid.

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Yeah!!!! After my son's "no eating", his first regular food was 3 donuts in one day. At that point, I didn't care what he was eating...he was eating!

 

 

He now weighs 47lbs. However, today may be a turning point. He ate a bag of cheetos and a meal replacement bar. Very solid foods. He said that he thinks he can swallow now. This is day 10 of the antibiotic and day three of the steroid.

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That is great that he is eating today! It sounds like the Aug and steroid are starting to work. With his weight, he could be taking 500mg twice per day, so if you don't think the Aug is working, you may want to ask your dr about increasing it to 500, but 400mg twice per day is a pretty good dose for that weight.

Colleen

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He now weighs 47lbs. However, today may be a turning point. He ate a bag of cheetos and a meal replacement bar. Very solid foods. He said that he thinks he can swallow now. This is day 10 of the antibiotic and day three of the steroid.

:D So glad!! :D

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Hi All - Not eating is the scariest part of PANDAS for us. My dd12 limits amount of food and kind of food. When severe, she stops eating. She could not put metal (forks, spoons, etc) in her mouth so we started using chop sticks for little kids that are hooked together. She would not eat anything except white food and mostly noodles. I always said that she has never seen a noodle that she didn't like. I work at giving her dense food - smoothies with protein powder, essential fatty acids (I use flavored flaxseed oil), and anything else I can throw in and still make it taste good. I only use whole milk and ice cream is essential. If she will eat at Jack in the Box, the we go to Jack in the Box. My philosophy over the years has become that any food is better than no food and to use whatever works. I ignor my own feelings of guilt over junk food or the sideways looks of other moms. We have also used OT to help with senory eating issues (helped a little) and CBT (didn't help at all). She is currently on Augmenton ES and zoloft 50 mg. When we started the zoloft a number of years ago, she stated eating.

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