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Restricting Fluids. OCD?


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#1 1tiredmama

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Posted 29 February 2012 - 09:50 PM

I'm putting together a long history of psychiatric and physical symptoms, for a May eval for ds17. He has been symptomatic, at times non-functioning, since he was a toddler. Thank goodness, I kept a lot of paperwork on him over the years, but I am left trying to fill in the gaps. I'm hoping you can help me with one.

Ds's main dx's in early childhood were severe bipolar disorder with psychosis and GAD. He was always an anxious little one. I can remember him at two telling his little friend, and even other tots, on the playground to be careful as they climbed on toys, not that it stopped him from climbing. Today, at 17, he has thoughts about falling through the floor. He occasionally asks about the construction of the house, worries that his bed will fall through, and gets anxious when too many people stand in one area, like 4 of us in the kitchen or a group on an elevator. Again, he is dealing with it, not avoiding anything. But, it should be noted that this is occurring even though he is on a lot of meds. Without meds, he thought strangers offered him poisoned food (it was birthday cake!), I might be hurt in an accident, and people were cursing at him or staring.

Here's my question: Looking back, and I don't know what started it, ds at age 9 started restricting fluids. This occurred against the backdrop of his worst episode. He looked mentally ill. It was a real point of contention at the time because it caused a constant state of mild dehydration. His mouth was always pasty, and his lips were dry and cracked. He started doing this weird thing with his tongue. He would thrust it forward, then lick the goo off of the front of his teeth--he was a mouth-breather. He would not stop, even when I corrected him. This behavior actually changed the shape of his mouth, resulting in buck teeth over the course of a few months! I was so angry and frustrated that he wouldn't just drink. He never explained his behavior, but refused to budge. He was easily agitated and argumentative as per the BPD. I eventually took him to an orthodontist. The appliance he needed to fix his palate inhibited the tongue thrust, and the behavior stopped.

As for getting him to drink enough, I think the fact that I kept telling him how important it is to drink enough while taking meds, and that one routine blood draw required a second test because of a possible kidney issue put an end to that. It basically scared him into complying. Plus, within that year, we found a med cocktail that took care of his mood and his anxiety. All weird behaviors improved.

Is this OCD-like behavior? And, how does one distinguish between GAD and OCD, other than from the most obvious cases of OCD? Thank you for your opinion.
DS18 dx'd PANDAS in 2012, 14 years after first symptoms appeared
DS15 Happy and healthy!
DD12 dx'd PANDAS in 2012, 9 years after first symptoms appeared


#2 dcmom

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Posted 01 March 2012 - 04:37 AM

Well obviously I cannot answer the question about your son, but I can tell you that my dd restricted food intake during an exacerbation, it was ocd, and went away with pandas treatment. So, certainly food or liquid restriction can be ocd.

#3 eamom

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Posted 01 March 2012 - 08:15 AM

Well obviously I cannot answer the question about your son, but I can tell you that my dd restricted food intake during an exacerbation, it was ocd, and went away with pandas treatment. So, certainly food or liquid restriction can be ocd.


yes, my dd restricted both food and fluids during her severe exacerbation in 2008. She would also spit, b/c she heard the human body was mostly water, and she was trying to "spit out a pound". It was OCD (of course she had anxiety about gaining weight/being over 50 pounds)...it resolved with PANDAS treatment.

#4 missjo

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Posted 01 March 2012 - 10:54 AM

My 16 YO son has had episodes of restricting liquid and food. He felt like if he drank one ounce of water he would weigh one ounce more. He has an eating disorder associated with his PANDAS. Not sure if that helps any. My sons OCD with food started at around 9 also with having to eat only healthy foods.

#5 mayzoo

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Posted 01 March 2012 - 08:58 PM

My dd (9 at the time) went from drinking around 80 oz of water a day to drinking barely 12 to 20 oz of water a day when she presented with symptoms. Now that she has been on abx and the vast majority of her sx are 80% ish better, her water intake is up again as well. Not to her normal levels yet, but better. Kiddo developed a sudden, unexplained fear of using the restroom, so I attributed the reduction to that, but I am just guessing. She reduced her food intake drastically as well, but again, I do not know why. My kiddo has autism and is expressively delayed, so I cannot just ask and get a simple, clear answer to a lot of questions.

Edited by Mayzoo, 01 March 2012 - 09:02 PM.

DD (AKA Kiddo :) ) Born 2002. Dxs-PANDAS, Hypogammaglobulinemia, EBV, HHV-6, High Coxsackie b4, b6, A7, A9, A16, A24; Arnold Chiari Malformation 1, Arachnoid Cyst, Syrigiomylia, Autism, Bi-lateral Strabismus, and Torticollis. Retrospectively, she has likely had PANS since 4-5 yrs old. Very successful T & A 02-2013--cultured actinomyces bacteria.


#6 1tiredmama

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Posted 01 March 2012 - 10:12 PM

Thank you, all for your responses. It was a difficult year, and unfortunately, in this case, hindsight is not proving to be 20/20. Eight years later, ds can't remember why he acted the way he did.

For three to four weeks during that horrible year, ds abruptly stopped eating. Within a few weeks he was emaciated. I started giving him Pediasure to stop the weight loss, but I quickly found that if I didn't watch him drink it, he would dump it. One night as he screamed and cried about something, I lost my poker face and started to cry as I held him in my arms. He asked why I was crying, and I said that I was sad to see him so unhappy and so thin.

The next morning, he ate a full breakfast. I held my breath. Then, he ate his whole lunch. So, I asked him if he what was different. He said that he didn't want me to cry anymore. I asked him if he was hungry. He said he had been hungry everyday! He continued to eat.

I know he didn't stop eating or drinking to lose weight--he would have told me. And, I really don't think it was anxiety-driven. Are OCD behaviors always related to anxiety?
DS18 dx'd PANDAS in 2012, 14 years after first symptoms appeared
DS15 Happy and healthy!
DD12 dx'd PANDAS in 2012, 9 years after first symptoms appeared

#7 tpotter

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Posted 02 March 2012 - 04:46 AM

Thank you, all for your responses. It was a difficult year, and unfortunately, in this case, hindsight is not proving to be 20/20. Eight years later, ds can't remember why he acted the way he did.

For three to four weeks during that horrible year, ds abruptly stopped eating. Within a few weeks he was emaciated. I started giving him Pediasure to stop the weight loss, but I quickly found that if I didn't watch him drink it, he would dump it. One night as he screamed and cried about something, I lost my poker face and started to cry as I held him in my arms. He asked why I was crying, and I said that I was sad to see him so unhappy and so thin.

The next morning, he ate a full breakfast. I held my breath. Then, he ate his whole lunch. So, I asked him if he what was different. He said that he didn't want me to cry anymore. I asked him if he was hungry. He said he had been hungry everyday! He continued to eat.

I know he didn't stop eating or drinking to lose weight--he would have told me. And, I really don't think it was anxiety-driven. Are OCD behaviors always related to anxiety?



Interesting, because when my DS would get very ragey, the only way to stop him was to start crying (found it out by chance, and then several times after that, I resorted to it. Same response as your son. DS would say that he didn't know why, but my crying just sort of made him stop.

#8 eamom

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Posted 02 March 2012 - 06:55 AM

Thank you, all for your responses. It was a difficult year, and unfortunately, in this case, hindsight is not proving to be 20/20. Eight years later, ds can't remember why he acted the way he did.

For three to four weeks during that horrible year, ds abruptly stopped eating. Within a few weeks he was emaciated. I started giving him Pediasure to stop the weight loss, but I quickly found that if I didn't watch him drink it, he would dump it. One night as he screamed and cried about something, I lost my poker face and started to cry as I held him in my arms. He asked why I was crying, and I said that I was sad to see him so unhappy and so thin.

The next morning, he ate a full breakfast. I held my breath. Then, he ate his whole lunch. So, I asked him if he what was different. He said that he didn't want me to cry anymore. I asked him if he was hungry. He said he had been hungry everyday! He continued to eat.

I know he didn't stop eating or drinking to lose weight--he would have told me. And, I really don't think it was anxiety-driven. Are OCD behaviors always related to anxiety?


I typed out a slide from a Swedo presentation (IOCDF San Diego):

PANDAS/PANS Eating Disorders
-classic anorexia is rare, but does occur
-more commonly restricted eating is secondary to OCD symptoms. Once weight loss exceeds 10-15% of body weight, body dysmorphia may develop
-Obessional fears linked to eating restrictions:
*Contamination fears - poison, fats, excess calories
*Fear of choking, vomiting, others
*Guilt/scruplosity - "don't deserve to eat"

#9 1tiredmama

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Posted 02 March 2012 - 04:15 PM


Thank you, all for your responses. It was a difficult year, and unfortunately, in this case, hindsight is not proving to be 20/20. Eight years later, ds can't remember why he acted the way he did.

For three to four weeks during that horrible year, ds abruptly stopped eating. Within a few weeks he was emaciated. I started giving him Pediasure to stop the weight loss, but I quickly found that if I didn't watch him drink it, he would dump it. One night as he screamed and cried about something, I lost my poker face and started to cry as I held him in my arms. He asked why I was crying, and I said that I was sad to see him so unhappy and so thin.

The next morning, he ate a full breakfast. I held my breath. Then, he ate his whole lunch. So, I asked him if he what was different. He said that he didn't want me to cry anymore. I asked him if he was hungry. He said he had been hungry everyday! He continued to eat.

I know he didn't stop eating or drinking to lose weight--he would have told me. And, I really don't think it was anxiety-driven. Are OCD behaviors always related to anxiety?



Interesting, because when my DS would get very ragey, the only way to stop him was to start crying (found it out by chance, and then several times after that, I resorted to it. Same response as your son. DS would say that he didn't know why, but my crying just sort of made him stop.



How about that? I'll bet your ds is a sensitive guy, like mine, with a big heart. I conjured up tears one time in a desperate attempt to gain cooperation, and it worked! I had gotten on a plane with three children by myself and made the trip to Florida to visit my dad. Together, we took the kids to Disney World. I could only afford ONE day, and doubted we would ever get back as a family. As soon as we entered the park, ds (10, at the time) became completely uncooperative, wouldn't even budge from one spot! There was every indication that this was going to go on all day, so I tried tears. Those tears saved the day and several hundred dollars! I've never confessed this to ds because I just may need to use that tactic again someday. ;)
DS18 dx'd PANDAS in 2012, 14 years after first symptoms appeared
DS15 Happy and healthy!
DD12 dx'd PANDAS in 2012, 9 years after first symptoms appeared

#10 1tiredmama

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Posted 02 March 2012 - 04:27 PM


Thank you, all for your responses. It was a difficult year, and unfortunately, in this case, hindsight is not proving to be 20/20. Eight years later, ds can't remember why he acted the way he did.

For three to four weeks during that horrible year, ds abruptly stopped eating. Within a few weeks he was emaciated. I started giving him Pediasure to stop the weight loss, but I quickly found that if I didn't watch him drink it, he would dump it. One night as he screamed and cried about something, I lost my poker face and started to cry as I held him in my arms. He asked why I was crying, and I said that I was sad to see him so unhappy and so thin.

The next morning, he ate a full breakfast. I held my breath. Then, he ate his whole lunch. So, I asked him if he what was different. He said that he didn't want me to cry anymore. I asked him if he was hungry. He said he had been hungry everyday! He continued to eat.

I know he didn't stop eating or drinking to lose weight--he would have told me. And, I really don't think it was anxiety-driven. Are OCD behaviors always related to anxiety?


I typed out a slide from a Swedo presentation (IOCDF San Diego):

PANDAS/PANS Eating Disorders
-classic anorexia is rare, but does occur
-more commonly restricted eating is secondary to OCD symptoms. Once weight loss exceeds 10-15% of body weight, body dysmorphia may develop
-Obessional fears linked to eating restrictions:
*Contamination fears - poison, fats, excess calories
*Fear of choking, vomiting, others
*Guilt/scruplosity - "don't deserve to eat"



Thank you, EAMon! This is interesting. The "I don't deserve" reasoning may apply here. I've heard it from both of my bipolar children during depressed phases. "I don't deserve to have Santa bring me presents." "I don't deserve comfort." "I don't deserve to live." Those "I don't deserve" statements are so heartbreaking. I wonder how it made it to Swedo's list. What separates it from depression?
DS18 dx'd PANDAS in 2012, 14 years after first symptoms appeared
DS15 Happy and healthy!
DD12 dx'd PANDAS in 2012, 9 years after first symptoms appeared

#11 eamom

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Posted 04 March 2012 - 12:18 PM



Thank you, all for your responses. It was a difficult year, and unfortunately, in this case, hindsight is not proving to be 20/20. Eight years later, ds can't remember why he acted the way he did.

For three to four weeks during that horrible year, ds abruptly stopped eating. Within a few weeks he was emaciated. I started giving him Pediasure to stop the weight loss, but I quickly found that if I didn't watch him drink it, he would dump it. One night as he screamed and cried about something, I lost my poker face and started to cry as I held him in my arms. He asked why I was crying, and I said that I was sad to see him so unhappy and so thin.

The next morning, he ate a full breakfast. I held my breath. Then, he ate his whole lunch. So, I asked him if he what was different. He said that he didn't want me to cry anymore. I asked him if he was hungry. He said he had been hungry everyday! He continued to eat.

I know he didn't stop eating or drinking to lose weight--he would have told me. And, I really don't think it was anxiety-driven. Are OCD behaviors always related to anxiety?


I typed out a slide from a Swedo presentation (IOCDF San Diego):

PANDAS/PANS Eating Disorders
-classic anorexia is rare, but does occur
-more commonly restricted eating is secondary to OCD symptoms. Once weight loss exceeds 10-15% of body weight, body dysmorphia may develop
-Obessional fears linked to eating restrictions:
*Contamination fears - poison, fats, excess calories
*Fear of choking, vomiting, others
*Guilt/scruplosity - "don't deserve to eat"



Thank you, EAMon! This is interesting. The "I don't deserve" reasoning may apply here. I've heard it from both of my bipolar children during depressed phases. "I don't deserve to have Santa bring me presents." "I don't deserve comfort." "I don't deserve to live." Those "I don't deserve" statements are so heartbreaking. I wonder how it made it to Swedo's list. What separates it from depression?


It might be depression... do depressed people consider themselves bad or undeserving?. When my dd's PANDAS was severe she considered herself a "bad person". When I asked her why she thought she was bad , she said it was b/c she had to go to speech therapy . She also had OCD about sugar (thank you scholastic healthy eating handout !) and OCD about weighing more than 50 pounds.




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