ocd-Fear of chocking?

[bubblegum]

Our daughter has been diagnosed with pandas and lyme. She is afraid of chocking and will not eat or drink much of anything and some days nothing at all. Asks us to save her favorite foods for later when she "can" eat again. Anyone else experience this? What meds/forms of treatment were successful. She's been dealing with this for 2 months now and has gradually worsen to the point of having an IV for meds, fluids, and vitamins. Would love to not have to give nourishment through IV. Thanks!

[Megs_Mom]

Hi , that is how our daughter started at 3. She had an ear infection and was given azithromyacin in the first two weeks of onset. It resolved completely for 3 years. We also did ERP therapy, which has always been a great support tool for us, although never a cure. We think she only has pandas, not lyme as well.

 

What medication is she getting? Do you have a good neuro Lyme doc? If you give her motrin 30 minutes before food, does that help?

 

I am so sorry - the food issues were always the most terrifying to me. How old is your daughter? We were able to do enough liquids and tiny bites of food to get by. I'm glad she has docs that are giving her iv, but will pray you find the right medications soon.

[Suzan]

My dd7 has this too when her pandas acts up. She drinks lots of Ensure or Boost type products because she can still drink and usually scrambled eggs. Antibiotics normally will allow her to eat again.

 

HUGS!

 

Susan

Edited October 7, 2010 by Suzan

[philamom]

My dd8 had this for 3-4 months last year. She still has a very mild fear. It's hard to do ERP on this one, but I would let her eat anything she wanted at any time. Popsicles, soft foods ,exc. Try to keep foods near as well (a bowl of small sized cereal on the kitchen counter) at all times. Maybe try giving a small reward any time she can accomplish a small bite of something chewy like a mini marshmallow or granola bar (but still a favorite food). For obvious reasons you want to keep her well hydrated but also to keep her mouth moist--it's easier to swallow. My dd also had severe heartburn which fueled the fear of choking--prevacid helped in our case (this was before I found out about the lyme--so not sure if ok to use). I also remember your dd having a fear of vomiting. I wonder if it could be behind some of the fear of choking. In our situation, I had to work on it as well. I'm really sorry for what you are going through! Do you think a change of abxs might help? My prayers are with your dd!

Edited October 7, 2010 by philamom

[sf_mom]

The Motrin suggestion is definitely worth a try. All three of our children have been diagnosed with congenital LD and we are experiencing a variety of symptoms as a result of the most recent herxing response. Motrin appears to be the miracle drug for us when there is a flair symptoms. Things seem to settle within 20 minutes after dosing. I can also attest that Motrin has help me tremendously with my own symptoms. I too feel much, much better within 20 minutes.

 

Also any detox assistance (binding or herbs) you can get her to take will help to make her feel better: Bentonite Clay, Charcoal Pills, Children's Chewable Pepto Bismol, Bur Bur, etc. I use the Chewable Pepto Bismol with my 3 year old twins and unfortunately they seem to like them a little bit too much.

 

Sorry you are having such a rough time and pray you start to see improvement in the near future. My hearts goes out to your family right now.

 

-Wendy

Edited October 7, 2010 by SF Mom

[philamom]

Another thing we used to do is play games and offer food as incentives. My dd loves to play black jack (dad's doing), so instead of using chips we would use froot loops or cheerios (or something healthier). Make it as FUN as possible to eat food without too much emphasis on the food itself. We would dance and make funny faces while playing games. Even if she's not eating much, she is observing you having fun and munching on foods (which is also reassuring her that mom/dad don't choke on food). I know you must be so worried!

Edited October 7, 2010 by philamom

[Megs_Mom]

Another thing we used to do is play games and offer food as incentives. My dd loves to play black jack (dad's doing), so instead of using chips we would use froot loops or cheerios (or something healthier). Make it as FUN as possible to eat food without too much emphasis on the food itself. We would dance and make funny faces while playing games. Even if she's not eating much, she is observing you having fun and munching on foods (which is also reassuring her that and mom/dad don't choke on food). I know you must be so worried!

I agree with this - we tried not to ever mention food - we'd just have tiny bites of yummy choices in front of her - this was especially effective if she was playing a game or watching TV.

 

By the way, our dauthters stomach issues did coincide exactly with onset of PANDAS. I do think that the amount of acid they have in their stomachs is way out of wack due to something that happens with PANDAS. We now use Prevacid & it is a lifesaver for us. The pill is a meltaway, so she does not have to swallow or eat. It tastes fine. We see an uptick in stomach ache first before we see OCD, then we see PANIC, then respiratory illness. It's a wierd pattern.

[DebC]

Our daughter had a fear that her food was poisoned and wouldn't eat. We did use Ensure and that helped a bit. The biggest help was our child psychologist who used cognitive behavioral therapy (CBT). Within one session, she had our daughter eating "poison" and then that fear went away and hasn't returned.

[PhillyPA]

This is very serious. My son, age 6, had this this summer. He was hungry but could not eat. He would try to eat and then spit everything out. He said he felt like he was choking. Fear of choking is a classic PANDAS symptom. My son was cured with augmentin and one month of tapered steroids. After three weeks, he started to swallow food again. He said, "Mommy I can eat!" He is still on the antibiotic and will continue to be on an antibiotic until his 20's. I believe that the steroids were an important part of his cure.

[dcmom]

I agree with all of the above posters.

 

My dd had not a fear of choking, but a fear of vomiting, if she ate. It started, and worsened slowly over two months to the point where she was only eating a small breakfast. It was really scary. She was in pandas crisis at this time. We, thankfully, got her into the hospital for pex- which completely stopped this issue.

 

During this, we did lots of what the above moms did. I let her rent and watch TONS of movies. I would not ask what she wanted to eat, rather make a meal of small portions of multiple things she liked that are nutritious. I have some cute trays with different compartments, I would fill them all (bite sized sandwiches, smoothie (you can put protein powder and probiotics in a fruit smoothie) , cut up fruit, cheese, cookies, ice cream,, etc). Many times she would say she didn't want to eat, but I would leave the tray in front of her during the movie, and she could usually end up getting some of it down.

 

I would say you can use lots of these strategies- but I would at the same time be aggressively pursuing medical treatment. High dose antibiotics, advil, steroids, ivig, pex..... Medical resolution will be quicker and easier....