Anorexia

[JenniferG]

My 2 ds 4.5 have a difficult time with weight gain. Until about 5 seconds ago (after reading another post) it dawned on me, " could their refusal to eat be considered anorexia?". It's definitely not an image problem, their 4 years old. The GI and I have always thought it was from food sensitivities, reflux, being on antibiotics etc. but I just realized each time they are sick and get an antibiotic change, their appetite goes back to "normal" for them. The GI gave me a script for PeriactinMy to use. It an antihistamine with a side effect of increased appetite. I used it for my daughter, we actually had to stop, her appetite was TOO big.

 

The GI also said for some reason, kids who get their tonsils out tend to have an increased appetite after. Which actuall happened to my daughter. She gained more weight since June than she has in almost 2 years! We have been considering taking their tonsils out, that would be a welcomed side effect!

[Kiera]

Yes, many pandas kids have poor appitite and in fact many cases of anorexia can be helped with ivig (ie.pandas treatment) Some anorexia is just another manifestation of OCD. So yes, it's all related, the gut/brain connection. My ds also did a 5week course of periactin and gained a ton of weight also. probably helped with his allergies at the same time!

[JenniferG]

Yes, many pandas kids have poor appitite and in fact many cases of anorexia can be helped with ivig (ie.pandas treatment) Some anorexia is just another manifestation of OCD. So yes, it's all related, the gut/brain connection. My ds also did a 5week course of periactin and gained a ton of weight also. probably helped with his allergies at the same time!

Really? Thanks? What's a ton? How much did he gain? My boys are stuck at 33lbs.

[lozsdad]

periactin - please tell me more about the 5 week course they took

My dd who is going on 15 has had Pandas for 3 years - had IVIG late last year and all had been going well until 5 weeks ago

She has now no appetite and just refuses to eat saying she feel sick when she eats - all standard abx have not help - doctors treating symptoms

also her old tic are starting to re-appear

Just start a new coarse of abx ( augmentin)but we are struggling with this concept of not eating as she is drastically loosing weight

[Kiera]

As far as I can remember, he gained 10 lbs in 5 weeks on periactin. Since periactin ia an anti-histamine and my son has tons of allergies it made me wonder if high histamine depresses appitite? We only did a 5week trial to see if appitite was the problem, not something mechanical like slow motility or slow gastric emptying, so the periactin proved it was just appitite. After that he did a 6 week steroid which caused him to gain even more weight so right now he's still in the normal range. Lozsdad, it seems like your dd may be flaring up again and might require a 2nd ivig if you can't get the eating under control. Periactin is only treating the symptom of poor appitite too, not treating the underlying cause (pandas) but it may buy you time until either the right antibiotic or ivig corrects the flare-up.

[JenniferG]

As far as I can remember, he gained 10 lbs in 5 weeks on periactin. Since periactin ia an anti-histamine and my son has tons of allergies it made me wonder if high histamine depresses appitite? We only did a 5week trial to see if appitite was the problem, not something mechanical like slow motility or slow gastric emptying, so the periactin proved it was just appitite. After that he did a 6 week steroid which caused him to gain even more weight so right now he's still in the normal range. Lozsdad, it seems like your dd may be flaring up again and might require a 2nd ivig if you can't get the eating under control. Periactin is only treating the symptom of poor appitite too, not treating the underlying cause (pandas) but it may buy you time until either the right antibiotic or ivig corrects the flare-up.

 

I get confused with the histamine. Do most PANDAS kids have high histamine? If so, what does that mean?

 

Also, how would you know if it wasn't appetite and was slow motility?

Edited May 2, 2012 by JenniferG

[Kiera]

I know! Histamine is a complicated issue, I still don't completely understand it all. You can search old threads here for info on histamine. Not all pandas kids are high histamine, many are low, but my kid has many allergies that's why I think he's high. As regards the slow motility - well my kid has a GI Dr due to years of chronic constipation, he now has a cecostomy tube for nightly antegrade enemas to flush out the colon. He's had every GI test under the sun done for that but because of the decreased appitite and low weight, the GI Dr was going to do a gastric emptying test to see if the food was moving too slowly out of the stomach. But first we tried the periactin which proved it was just a poor appitite as he was ravenous on it and had no problems eating larger quantities. Hope this helps explain.

[JenniferG]

I know! Histamine is a complicated issue, I still don't completely understand it all. You can search old threads here for info on histamine. Not all pandas kids are high histamine, many are low, but my kid has many allergies that's why I think he's high. As regards the slow motility - well my kid has a GI Dr due to years of chronic constipation, he now has a cecostomy tube for nightly antegrade enemas to flush out the colon. He's had every GI test under the sun done for that but because of the decreased appitite and low weight, the GI Dr was going to do a gastric emptying test to see if the food was moving too slowly out of the stomach. But first we tried the periactin which proved it was just a poor appitite as he was ravenous on it and had no problems eating larger quantities. Hope this helps explain.

It does. Thank you. Just another piece to the puzzle.......

[airial95]

My 4.5 yr old is 44" and 37 lbs, and gained 10 of those lbs in the 6 weeks post op from his t&a in november. He started testing + for strep again in january and hasnt gained a lb since. So i can totally relate! For our son its definitely ocd related. He has contamination and quantity obsessions (cant eat anything on the plate unless its grouped properly) he'll go days at a time eating next to nothing (only some lunch at school- which i think the peer pressure is good for him). He'll also go weeks at a time eating only one food (donuts and watermelon are two pf our popular choices)

 

When he vets on those fixations we allow him to eat all he wants, even if its unhealthy since we know its lkely rlto be all he may eat for days. We also are sneaky, making his choclate milk with carnation instant breakfast and supplementing his meds with exgra vitamins and supplementa.

 

Our ped pointed out that in these kids ocd may be a big reason for not eating and being underweight, but to keep in mind that their immune system is running on full throttle most of the time fighting infections -real or percieved- and that has a big impact on appetite too.

 

I just hope he's finally out of 18 month pants by the winter...we had a warm one this year, but i dont think he could pull off those floods again next winter!

[Kiera]

Oh and one more thing, with my ds, sensory issues related to texture, taste and smells decrease his appitite. So once again, pandas is the root cause, when pandas flares, sensory flares and appitite decreases.