Worst symptom yet........ .. ..

[mandyknowles]

Sooo, what is it that your mom is waitng for?

[EmersonAilidh]

MomWithOCDSon - Thank you! I might try that. The cereal that I have is in tiny little bits though, so if I eat just a couple little ones at a time it's not that bad. Just very very time consuming, hahah. Mom said she'll buy some Instant Breakfast tomorrow. Yay for a step in the right direction!

& hopefully the appointment will be made tomorrow! When it is you bet I'll be letting all of you know.

 

MandyKnowles - I.... don't know. I try really really hard not to think badly of my Mom but at times like these it's difficult not to. Our relationship is definitely unique. We get along for the most part now but that has NOT always been the case. She had me when she was eighteen, so she's still pretty young at thirtyfour right now. I love my Mom to death but sometimes I feel like I'm older than her on the inside. I gave her the list of doctors my very first day on the forum, June eighth, I believe, & I have been SO frustrated for these past two months having to remind her & still seeing nothing. I can't make the appointments myself because I have no way there & her work schedule is weird, & I shouldn't have to anyway.

Just a bad time. :/

[3boysmom]

OK Emerson....Today is the 4th!! I have been checking each day to see if your appointment has been made. Don't make me come there, which is what I really want to do right now! Prayers for you each day and prayers that the doctor that you do see will listen to your knowledge and advocacy (spelling?) on behalf of yourself. Do you know your school nurse very well? Our school nurse (here in Texas: Woodlands, Conroe, Spring, North Houston Area) is starting up a support group for us in this area because she has seen (from our son) what this illness can do first hand. She is trying to get the head nurse of Texas to address PANDAS in the nurses conference. Maybe our nurse can get in touch with your school nurse. Maybe from there, you could happen to "not feel well" and your school nurse could call home and begin the conversation of a doctor visit. I know that is a REAL stretch, but I hate that you are not receiving any treatment still after such a long time waiting for help! Please let us know what step dad says.

 

 

Prayers and blessings,

Linda

[EmersonAilidh]

We called the ENT on the list on the second. Monday, just like stepdad promised. Her nurse said that they had had a few P.A.N.D.A.S. patients but that they typically referred them to another doctor.

"Okay, so what's that doctor?"

"Oh, we'll call you back with the information." *Click*

 

Oh H### no. I have not waited this long to have a doctor's office HANG UP ON ME. So I called back the next day. & the next day. I had other doctor's, but this one just so happened to royally "tick" (for the sake of the young eyes on this forum) me off & I wasn't about to let them brush me off. While on the phone with the man that I got yesterday I said "Can you just give me the information right now, please??" & he told me that he would call me back in a few minutes. *click*.

Needless to say. I don't think that they'll be calling me back anytime soon & I'm calling the pediatric neurologist on the list soon. I didn't want to go the neurologist route just because of my bad experience with Dr. Ryals, but the ENT is obviously not working out. Also, I have been the one doing the phone calls. I enjoy handling it myself but I need my Mom on board to help me with insurance info, scheduling, etc.. etc..

I'm calling the neurologist today, & I will get back to you all!

 

 

Also, came home to a big tub of Carnation Instant Breakfast sitting on the counter. Guess who's about to make her first little slushie thanks to Suzan?

[EmersonAilidh]

Sorry, had to post one more time cos I actually just made the Carnation slushie & this is AWESOME. Thank you so much Suzan & everyone else who's suggested it! Goes down so easily. But still yummy & I know it's nutritious.

[Mary M]

Mary M - I pace because I'll get fat if I don't. But besides that.. I've never experienced eating/eating disorder-esque problems until now. I've actually lost a ridiculous amount of weight going gluten-free, as a matter of fact (not an unhealthy amount though. I was a bit tubby). I was trying to explain it to my bestfriend. It's not that when I put the food in my mouth I think "This is gonna make me choke" so much as it is the SECOND that food hits my tongue I can almost feel myself choking. This is something new & I haven't dealt with any symptom like it before.. That's the only reason that it's scaring me as much as it is.

 

 

Emerson-I appreciate your explanation. My dd can't put any of this experience into words yet. She's starting. She just talks about it as her not eating phase of PANDAS. You can describe it. Thank you for giving words to the experience. You have every right ot be scared...this whole forum is scared for you...and we want you to be able to get the PANDAS help you deserve. I am looking forward to a positive post about that soon.

[EmersonAilidh]

Mary M - Posts like yours remind me of why I come on here. I just wanna help. It's odd, because I really can't recall ever having choked on food before.. I'm not one of those people with a sensitive gag reflex who has to be careful when they brush their teeth either.

I've been drinking Carnation all day. My diet is pretty much consisting of mashed potatoes (with salt, pepper, sometimes cheese), mini breakfast burritos (with really small diced potatoes & scrambled eggs. I can tear them up or bite them with the side of my mouth), & some glutenfree cereal. That I am out of as of today. I've been trying my best to keep nutrition in mind while still... accommodating, for lack of better term, my choking fears. Glutenfree products tend to be packed full of all kinds of good stuff, which my cereal is. Mashed potatoes aren't exactly good but they're not really bad though since I use light soymilk & no butter. Breakfast burritos are pretty much just potatoes, eggs, & corn tortillas. Salsa sometimes.

[EmersonAilidh]

Guess who has an appointment with Dr. Goebel on August 18th? So happy. This doctor said that he treats P.A.N.D.A.S. specifically. Has anyone had experience with him?

 

http://www.psopkids.com/doctors.htm

[EAMom]

Hi Emerson.

 

Yay on the appointment. Keeping my fingers crossed!

 

Your post gave me an "ah ha moment". It occured to me that not only do PANDAS kids have a fear of choking, but I'm wondering if choking is also a real physical symptom of PANDAS (which thus causes the kids to be fearful of it). Perhaps this is akin to how urinary frequency (the feeling of having to go) is a real physical symtpom of PANDAS, and not just an OCD/anxiety thing.

 

Parkinsons (which also affects the basal ganglia) http://www.merck.com/pubs/mmanual_ha/sec3/ch30/ch30f.html also can have urinary frequency and choking as symptoms.

 

Any thoughts?

 

PS. here is the thread on urinary frequency http://www.latitudes.org/forums/index.php?showtopic=9299&pid=77937&start=&st=#entry77937

Edited August 6, 2010 by EAMom

[LNN]

Hurray Emerson!!! I'll be counting down with you...

 

EA Mom - good point. My daughter (5) (Pandas?) is going to a GI doc in 2 weeks because her erratic eating has finally gotten to the point that DH has agreed to an endoscope if need be. She frequently complains of reflux and heartburn and won't eat, saying she isn't hungry. But we're starting to find out she's avoiding foods that she fears may not feel good if they come back up (things with texture). She'll eat cereal, soup, ice cream, milk - smooth things. For her, it isn't an imaginary fear of choking - it's a fear of something that happens to her for real - reflux. She even told us that she often swallows throw up and that "you get used to it". That she has a weird taste in her mouth (metalic? vomit?). Am anxiously waiting for the appt. I will not mention Pandas. That's not what we're going there for. But I wouldn't be surprised to find there's a gut issue that sometimes causes a BBB problem that triggers her periodic OCD, particularly in the winter.

 

Do you ever get the sense that we all see the tip of the ice berg, and one day 50 years from now, someone will read these archives and chuckle at our naivete and ignorance of what will then be common medical knowledge?

[EmersonAilidh]

EAMom- That sounds really plausible, but I don't think so for me. I think that it's more like the sensation of choking, if that makes sense.. Because like I said, I really can't recall ever having choked on food or having had gagging problems. I haven't even thrown up in six years since I stopped eating meat.

I don't think that I've ever had any problems with urinary frequency either, although I might have had them as a kid & just can't remember them now. Currently & from about the time that I was ten when the P.A.N.D.A.S. really made itself known, I can't say I've had any experience with it.

 

Whenever explaining it to teachers I say the same thing. If you can think of a symptom, at least one P.A.N.D.A.S. patient has probably experienced it before. The little theory that I have going in my head (that has absolutely no backup that I have found or even tried to find) is just that maybe our defective antibodies are more haywire than we give them credit for. I've always wondered if things like the urinary frequency & nonspecific gastrointestinal pain could be from our antibodies wreaking havoc there. Or, specifically with the gastrointestinal pain as I've discussed in a previous post, just different dysfunctional antibodies.

Edited August 6, 2010 by EmersonAilidh

[EmersonAilidh]

LLM - Hurray indeed! I'll admit I was so happy I cried a bit, haha.

Has anyone discussed heart problems in P.A.N.D.A.S. patients? Is that a common thing? I've dealt with it for a long time. My neurologist thought that I had Long QT Syndrome at one point (EKG ruled it out, which dashed my hopes of no more P.E.) & I've always had a heart murmur. It only gets noticed every now & then lately, but when it was first pointed out it was so blatant that the doctor actually called all of his interns/residents/etc... to come have a listen. I was five, so that was pretty terrifying although it's my understanding now that heart murmurs are pretty harmless. I wonder how many patients have dealt with heart issues? I've never seen it mentioned before.

[EmersonAilidh]

LLM - Hurray indeed! I'll admit I was so happy I cried a bit, haha.

Has anyone discussed heart problems in P.A.N.D.A.S. patients? Is that a common thing? I've dealt with it for a long time. My neurologist thought that I had Long QT Syndrome at one point (EKG ruled it out, which dashed my hopes of no more P.E.) & I've always had a heart murmur. It only gets noticed every now & then lately, but when it was first pointed out it was so blatant that the doctor actually called all of his interns/residents/etc... to come have a listen. I was five, so that was pretty terrifying although it's my understanding now that heart murmurs are pretty harmless. I wonder how many patients have dealt with heart issues? I've never seen it mentioned before.

[LNN]

Emerson,

PANDAS is closely related to Sydenham's Chorea, which is a subset of Rheumatic Fever - a cause of serious heart damage. PANDAS is not thought to cause heart damage (my son had a full cardio work up last year and was fine). But you should definitely mention it to the doctor on the 18th. You need to rule out RF/SC. If you're diagnosed with RF, you'll usually be put on daily antibiotics into your 20s.

[EAMom]

EAMom- That sounds really plausible, but I don't think so for me. I think that it's more like the sensation of choking, if that makes sense.. Because like I said, I really can't recall ever having choked on food or having had gagging problems. I haven't even thrown up in six years since I stopped eating meat.

 

I wonder then if sensation of choking is the "real" symptom (not just "fear of choking" as the PANDAS docs describe)....much like the sensation of having to urinate exists for those kids with urinary frequency?