Intrusive/obsessional worries with a need to confess

[NancyD]

Yikes...how scary, EAMom! I know my daughter would like to lose some weight so this did concern me. Her teeth are not really hurting right now but the Motrin works wonderfully for her OCD issues. It's my new best friend! The key, I have discovered, is that she MUST take it 3x daily. Too short a half life!

 

Nancy

 

It seems like there are several reasons why a Pandas child might have anorexia:

 

1) distorted body image, fear of weight gain, fear of being fat--akin to the "traditional" anorexia nervosa we see in teens. This is what my dd (at age 7.5 years). had Spring 08.

2) fear of choking (as Dr. K. mentions on his website)

3) contamination fears

4) altered taste sensation (and other sensory issues): my dd had this (briefly) post IVIG (perhaps part of turning back the pages?). "Things that should taste good didn't." and "My taste buds aren't working right." Diana's son had this same symptom when his pandas was at its worst.

5) ???? other suggestions

 

NancyD...we have always found Advil/motrin to be helpful for our dd's pandas symptoms. It probably does something for sore mouth due to braces as well!

 

I would say the anorexia nervosa was the biggest (by far) nightmare in our whole PANDAS journey. The tantrums/emotional stuff, aggression, school issues, other ocd, really had nothing to compare to the horror of having your kid starve themselves before your eyes.

 

re lunch: After my dd was hospitalized (March 08) for malnutrition/anorexia nervosa, for a couple of months I drove to school everyday to pick her up for lunch...to make sure she ate.

 

Peglem...the eating environment at my kids school is horrible. Our younger dd has a hard time (esp.) b/c she is a fairly slow eater. Her friends eat quickly and then she feels rushed and doesn't eat much.

[thereishope]

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Edited October 18, 2016 by vickie

[thereishope]

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Edited October 18, 2016 by vickie

[NancyD]

I've been dealing with ASD, Colitis, and PANDAS issues for so many years that sometimes it's difficult to see the typical stuff when it smacks you right in the face. What complicates this is the fact that she couldn't have her Motrin as a result, which in turn impacted her PANDAS issues.

 

Nancy

 

So the problem this time wasn't PANDAS, it was having a teenager!

 

When Ben started the first grade he'd run home from the bus every day to use the bathroom. I couldn't figure it out. I'd ask him if used it at school and he'd say that he didn't have to. Finally, I had the lightbulb moment. I asked him if he knew where the bathroom was.In kindergarten, the bathroom is in the classroom. He admitted he didn't know where it was and he was embarassed to ask. I emailed the teacher and she showed him. Case solved. Thank god he didn't get a bladder infection holding it all day!

 

Kids. If they'd only learn to speak up and tell the truth!

 

My niece is the same age as your daughter. She doesn't want to brush teeth at school either so she eats lunches that won't get stuck in the braces. She also lost some weight when she first had them put on from avoiding food.

 

 

 

Bingo...that's it, Vickie. I asked her this evening after reading your post and she admitted it to me. She doesn't want to have to brush her teeth!

 

Thanks Vickie!!

 

Nancy

 

The braces could be a factor too. Could it be she is avoiding brushing her teeth at school? She knows if she doesn't eat,she doesn't have to brush?

[EAMom]

BDD and PANDAS has been documented together.

Here's one example...

http://ajp.psychiatryonline.org/cgi/content/short/158/6/963

 

 

 

 

 

Hmmm...that is really interesting that he had rheumatic fever when he was 8 but they only kept him on pencillin until he was 12! I'm keeping my dd on abs way way longer!

[ShaesMom]

Her teeth are not really hurting right now but the Motrin works wonderfully for her OCD issues. It's my new best friend! The key, I have discovered, is that she MUST take it 3x daily. Too short a half life!

 

Nancy

 

 

I also give my dd Ibuprofen daily. She takes it every morning and she gets an additional dose thoughout the day when i see she is having a particularly bad day. I swear the morning dose makes a big difference in her overall mood. She is having an Endoscope next Monday so I haven't been able to give the ibuprofen this week and have had to switch to Tylenol--I have noticed a significant change in her behavior this week.

 

Sam

[thereishope]

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Edited October 18, 2016 by vickie

[NancyD]

Good luck with the scope next Monday, Sam! That is never a fun ordeal for our kids! I can still remember scoping Sarah from both ends when she was 5. I had to stop the car at a rest stop on the highway while she was in her car seat so I could get her to drink the nasty prep stuff before the procedure. I knew if I did it at home she would run from me. To this day we always laugh when we pass that rest stop!

 

Nancy

 

I also give my dd Ibuprofen daily. She takes it every morning and she gets an additional dose thoughout the day when i see she is having a particularly bad day. I swear the morning dose makes a big difference in her overall mood. She is having an Endoscope next Monday so I haven't been able to give the ibuprofen this week and have had to switch to Tylenol--I have noticed a significant change in her behavior this week.

 

Sam

[EAMom]

To add to the list above, 5. Fear of getting sick from eating - fear of throwing up. My daughter went through a variety of fears - from eating too much sugar, to eating without her safe person with her (mostly me), etc.

 

She also could not eat in "unsafe" restaurants for a while - it was quite frightening. We find this fades when PANDAS fades, and we do EPR during episodes to help. We worry that if this keeps coming back, even with treatment, she needs to be able to cope. It does help - although we are helping that we can shorten the next episode through steriods and anti-biotics. So far, she has had about 10 months, in 3 episodes, where this has been very intense. It is always related to food for us, and that is the scariest part.

 

Susan (Meg's mom)

 

In Spring 08 my dd also had a big fear of SUGAR. I believe this stemmed from a scholastic healthy eating handout which had various foods (soda, ice cream etc) and how much sugar they had. I found that handout stashed in her back pack during the first couple of months of PANDAS. She also had a huge fear of weight gain and of weighing more than 50 pounds (she was in second grade and dropped to 42 pounds). She would ask questions before every meal: "Does this have sugar in it?" "Will this make my stomach grow?" "Will this make me weigh more than 50 pounds?" "Is my hand bigger than my stomach?" She would take her hand and measure her abdomen, then her legs, and wrists, to make sure they were thin enough. Before we "broke" the scale, she would weigh her self constantly and look in the mirror at her emaciated body, thinking she was too fat. After the scale "stopped working" she became obsessed with getting a new one. Now that I look back on that time, it is so weird and surreal. We are still on guard, since she is a smallish kid (9 years old, 54 pounds). Talk about post traumatic stress syndrome!

[EAMom]

Yes, I should really give my dd her advil in the am so it is effective when she is in school. We got into the routine of giving it at night with all her other meds. Right now (post ivig, still on azith) she is doing well so it probably doesn't make a difference...but something to think about if needed in the future.

[Megs_Mom]

To add to the list above, 5. Fear of getting sick from eating - fear of throwing up. My daughter went through a variety of fears - from eating too much sugar, to eating without her safe person with her (mostly me), etc.

 

She also could not eat in "unsafe" restaurants for a while - it was quite frightening. We find this fades when PANDAS fades, and we do EPR during episodes to help. We worry that if this keeps coming back, even with treatment, she needs to be able to cope. It does help - although we are helping that we can shorten the next episode through steriods and anti-biotics. So far, she has had about 10 months, in 3 episodes, where this has been very intense. It is always related to food for us, and that is the scariest part.

 

Susan (Meg's mom)

 

In Spring 08 my dd also had a big fear of SUGAR. I believe this stemmed from a scholastic healthy eating handout which had various foods (soda, ice cream etc) and how much sugar they had. I found that handout stashed in her back pack during the first couple of months of PANDAS. She also had a huge fear of weight gain and of weighing more than 50 pounds (she was in second grade and dropped to 42 pounds). She would ask questions before every meal: "Does this have sugar in it?" "Will this make my stomach grow?" "Will this make me weigh more than 50 pounds?" "Is my hand bigger than my stomach?" She would take her hand and measure her abdomen, then her legs, and wrists, to make sure they were thin enough. Before we "broke" the scale, she would weigh her self constantly and look in the mirror at her emaciated body, thinking she was too fat. After the scale "stopped working" she became obsessed with getting a new one. Now that I look back on that time, it is so weird and surreal. We are still on guard, since she is a smallish kid (9 years old, 54 pounds). Talk about post traumatic stress syndrome!

 

Meg's fear of sugar is always about it making her throw up - other than that, our story is identical. "Is this sugar mom? Will I throw up?" We threw out the scale we had in the house when she was 3 - I was so freaked out about her symptoms, that I swore we would never have a scale in our home. Hate those things! Essentially, the OCD caused by PANDAS picked up our very reasonable rules about how many sugar treats she could have a day, and tried to use it against her. She has also gone through phases when she tries to food balance (so if she eats a sugar, she'll eat an apple afterwards) or to use exercise (serious PTSD moment for me) when I made the mistake of saying that our body uses all the sugar every day to help us be active, and that sugar and all foods are good for us. She is about 95% on this right now, after intense ERP therapy & antibiotics - but we still see echo's of it. It's one of the big reasons why I cannot rest in finding answers for her now, while she is still young.

 

I am embarrased to admit that I used to think that anorexia was a result of the media's portrayal of thinness and kids with "issues". I'm sure the media is a factor in some, but now that I have seen glimmers of this first hand, long before my child cares what she looks like, I have a completely different, and more accurate, perception of this frightening disease. Now, I wonder how much is caused by biological issues, and why we are not researching more on the cause.

 

The lack of coordination between psychology and medicine is the true sad story here.

[EAMom]

Yeah, and I never even had any sugar rules in our house to start with! I just try to avoid buying a lot of junk food, but not to any extreme. If my kids asked candy/sugar/sweets I'd let them (they never went crazy with it, even at Halloween). The only comment I really ever made about sugar was saying they needed to brush their teeth afterwards!

 

RE Post traumatic stress, I have to admit, I got worried during Back To School Night when the PE teacher was talking about how they are going to enourage healthy habits, eating/exercise!

[thereishope]

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Edited October 18, 2016 by vickie