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

[EmersonAilidh]

I went gluten-free ABOUT two months ago. Obviously it pretty much flipped my diet over on its head. Up until last week I pretty much lived off of mashed potatoes since that was the only thing in the house that I could eat. Last week, after a long wait, I FINALLY got to go to Whole Foods. I bought cookies, I bought bread, I bought cereal, I bought noodles, I bought REAL FOOD, & it was awesome.

 

Well. It was going to be. But I started experiencing a symptom that I had only read about previously about a week ago. Choking fears. Now I'm back to eating my mashed potatoes because that's the only thing that will go down, & even that doesn't work all of the time. It hasn't been that long at all but this might just be the symptom that I hate the most in my P.A.N.D.A.S. journey. I can't eat in front of my friends because if something feels wrong I have to spit it out. I eat alone in my room & I'm lucky to get a few full bites down. I have absolutely no idea what I'm supposed to do about this.. My mom still hasn't made an appointment with any of the doctors & I'm just terrified. I've never felt anything like this. The second I put anything in my mouth I almost want to cry I'm so scared. It's not even so much a fear as that I can almost FEEL myself choking before I even try to swallow. I have absolutely no idea what to do. My P.A.N.D.A.S. has just gotten progressively worse & worse over the years & this last strep infection proved to me what I have been fearing for a while now. I do get worse when I have strep. But I don't feel all that much better when I don't. After thirteen years, I don't think that antibiotics will do a thing. I don't even know how to go about IVIG or PEX & our insurance sucks anyway. But treatment options don't even matter when my Mom won't get me in to see the doctor. I've never felt as hopeless as I do right now.

[Worried_Dad]

EA - don't lose faith. You are an amazing young woman and you will ultimately beat the damned PANDAS into submission and reclaim your life!

 

I understand how frustrating it must be not to have a PANDAS expert clinician to guide you. But - even if IVIG or PEX aren't feasible at the moment - don't discount the abx option. My son is 14, had utterly crippling symptoms (couldn't leave our house, could only eat meals in my office, couldn't eat if he "saw" the food prepared or touched in any way or if we didn't place it perfectly on the paper towel on my office desk). He did have IVIG, but we believe the real key to his recovery has been the "Saving Sammy" dose of augmentin XR. Other teenagers who have had severe, long-term PANDAS (like MomWithOCDSon's ds) have shown remarkable progress just from abx of sufficient dose and duration.

 

Maybe you could get in to see a doc from the list on this forum or on Beth Maloney's site who is in your area? If you could just get a trial of high-dose abx for 30 days or more (augmentin XR, zithromax), it's possible that this could give you noticeable relief. Our son actually told us within 2 weeks of starting the XR that "this is making a big difference, I can feel it."

 

Don't mean to promise anything. As you know well from reading the posts on this site, every PANDAS sufferer seems to react differently to treatments. But I think the abx option is more obtainable from a local doc who's open-minded, and it might help until you can line up IVIG or PEX.

 

A steroid burst is another option that might be easier to get prescribed locally by a sympathetic doc. Some kids on here have seen major symptom relief from that as well (although not always lasting).

 

You inspire so many people in this community with your courage, sense of humor, intelligence, and determination to control your own destiny against this insidious disorder. Hang in there - you're going to win in the end!!!

Edited July 31, 2010 by Worried Dad

[Mary M]

EmersonA,

I'm so sorry about this new symptom. My dd12 went through a non-eating period. She complained of choking concerns. She would not eat with us, I can see why you are concerned about eating in front of friends but if I could have understood it better at the time I think I would have tried to explain to my daughter that eating is safest with others. I see, when I watch my daughter, that logical thinking and PANDAS don't always mix. But you are older and seem much more in control of yourself and aware of your symptoms. Keep trying to defeat this disease...you are an amazing young girl...you will get through this symptom too!

Mary

from Michigan

[LNN]

Emerson,

This is serious - really really serious. PLEASE get your mom involved and show her your post, tell her what's happening. This can quickly turn into a life threatening condition. You are not doomed to suffer. Antibiotics, anti-inflammatories, proper medical treatments WILL bring you relief. But sitting in your room forcing down a few spoonfuls of mashed potatoes will not. This is urgent!

 

Laura

[EmersonAilidh]

Your post made me cry. & I like your little picture.

 

I HAVE a list of P.A.N.D.A.S. doctors. There are seven in my area, five of which are covered by my insurance. I gave my Mom the list two months ago & she just still hasn't made an appointment. The list was written down in her personal journal so I didn't want to cause a fight by going through it to find them & make an appointment on my own, but right after this post I went into my living room where my stepdad was sitting (Mom is at a family birthday party), took my Mom's journal off the table, found the doctors & handed it to him. All I said was "Mom hasn't made me an appointment yet." & he told me that he would do it on Monday. I hope that he does.

 

I know I'm going to win in the end! It's just days like these where I feel terrified & lost when confronted with new, increasingly more frightening/weird symptoms. I had strep last week, so my only guess is that the choking must be a combination of that & having hardly eaten solid food for so long.

[EmersonAilidh]

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.

 

LLM - Sorry, didn't see your post before I responded to WorriedDad's. My stepdad promised to make me an appointment in two days. He is much more reliable than my Mom, so when he says that he will I'm fairly confident that he ACTUALLY WILL. When he does I will be sure to update all of you. I'll be overjoyed, posting something positive for once, hah. Thank you for caring. <3

[MomWithOCDSon]

To echo LLM, you need to impress your mom with the seriousness of this situation. When it impacts your ability to nourish your body, PANDAS isn't something you can "just deal with" on your own anymore! You need help, and you deserve to have it!

 

Also, as you seem to be such a strong, brave, articulate, determined young lady, while you work on summoning your resources in terms of medical help and parental help, you might also try . . . slowly and carefully . . . some basic ERP (exposure response prevention) therapy to help yourself accept new food beyond the mashed potatoes. What if you took some of that gluten free cereal you bought, boiled some water, and made hot cereal out of it? Almost oatmeal like? That would have a similar consistency to the mashed potatoes, and you could try a bite at a time . . . see if your anxiety will lessen after one bite or maybe two . . . about choking. There are books in your library, I'm sure, like "The OCD Handbook" and "What To Do When Your Brain Gets Stuck" that can help you with some ERP exercises that will help you take some control of some of these behaviors while you seek the PANDAS medical help you also need.

 

And I also echo WorriedDad's suggestion that you try to find a doctor who'll help you with an antibiotic prescription. Of all the potential PANDAs treatments, this should be one of the most accessible, most affordable options, and we know it's helped many youths and adolescents, like WorriedDad's son and mine.

[Worried_Dad]

Well, we're even then. My son is almost your age, and reading your post made me vividly remember what he went through with severe anorexia after his 2nd PANDAS exacerbation... and that darn near made me cry.

 

As LLM said, this is a dangerous symptom. Your mom and stepdad need to understand what you're going through and how critical it is that you get that doc appt ASAP.

 

You may already be doing this... but ibuprofen (advil, motrin) seems to reduce inflammation and provide symptom relief for a lot of PANDAS kids. That's an OTC med that you can pick up locally without a hassle, if you haven't yet tried it.

 

Forcing the issue with your stepdad was an excellent idea. Don't let him off the hook!

 

FYI: my son also paced relentlessly during his "anorexia" phase (almost non-stop, until he could barely stand from the fatigue). He wore a track in the rug in our basement. That went away with PANDAS treatment. Can't wait for the day when you can post about how completely you've defeated that b&w bear!

 

 

Your post made me cry. & I like your little picture.

 

I HAVE a list of P.A.N.D.A.S. doctors. There are seven in my area, five of which are covered by my insurance. I gave my Mom the list two months ago & she just still hasn't made an appointment. The list was written down in her personal journal so I didn't want to cause a fight by going through it to find them & make an appointment on my own, but right after this post I went into my living room where my stepdad was sitting (Mom is at a family birthday party), took my Mom's journal off the table, found the doctors & handed it to him. All I said was "Mom hasn't made me an appointment yet." & he told me that he would do it on Monday. I hope that he does.

 

I know I'm going to win in the end! It's just days like these where I feel terrified & lost when confronted with new, increasingly more frightening/weird symptoms. I had strep last week, so my only guess is that the choking must be a combination of that & having hardly eaten solid food for so long.

[thereishope]

Emerson, do not give up hope. Most of the parents on this forum may not have PANDAS themself, but I think every one of us have stories to tell you of suffering and ultimately finding a way to overcome it and now we sit here full of strength and determination to make a better life for our kids. We are all looking out for you too. You are one of our kids, Emerson, and we will help you. When you begin to get that sense of choking, if you can, pause close your eyes count to 10 and just try to swallow. When you get that lump, push as hard you you can to finish the swallowing motion. You WILL overcome this.

[momto2pandas]

Emerson, please don't lose hope. When I was 15, I was where you are...but it was 1982. I had terrible problems with eating, and ultimately ended up in the hospital from the results of that. Getting food down was horrible. I chewed and spat plenty. I actually think there is something physical to it, not just psychological. Everyone is right; it's serious. That having been said, it is also temporary. I also had PANDAS from a young age, and it got MUCH worse in my teens. I never got antibiotics til I was 18 or 19. After that, 80+% of all my PANDAS symptoms stopped (the eating stuff stopped 100%). Over the next few years after that, it eventually got to be 99+% better, and it's held there ever since. You are on the way to getting help and it may take some trial and error, but the help will ultimately be effective...so try to take care of yourself for now, and not to panic about the future. My advice, for what it's worth: if you can't eat solid food now, just try to relax and find good liquid ways of getting plenty of nutrition. You will get treatment and that symptom will go away.

 

Someone already suggested it, but please make sure that you are taking plenty of Advil. In the meantime, I would suggest that you also get yourself some EnsurePlus or Boost, or some other kind of full-nutrition smoothie type thing that will go down ok. I found that I could freeze the stuff and take small spoonfuls, and they'd slide right down. You are under stress and your body is suffering from some kind of infection, and you need your basic nutrition, however you can get it. I'm sure you could find something like this at whatever grocery or drugstore you can get to. These days I think it's perfectly socially acceptable to have some sort of energy drink instead of a solid lunch, so you may also be able to "eat" with your friends that way, since it sounds like that's important to you. I know this isn't a good long-term solution, but I think you need to set yourself up to really take care of your body's needs until you get good treatment, at which point things will get much easier.

 

Why not call and make a doctor's appointment yourself? I know that you shouldn't have to do that, but if you did make an appointment, would your parents take you? If not, would you have another way to get to the doctor? Teenagers can go to a doctor without a parent - I always did it that way. The hang-up might be that I think your parents need to approve any medication you get. This was a problem for me - my parents didn't want me taking anything at all, so I couldn't really get any treatment til I was 18.

[Fixit]

i haven't read all here...but see if you can get the steroid and do a taper..don't have to worry about reboudn so much and maybe that wiill set you back on right track

[Suzan]

My 7 yr old has a fear of choking too. It's scary to watch her chew and chew and finally spit it out. I am sorry you are experiencing that. Her's seems to come and go so I hope yours goes away soon. My girls are gluten free too . I make them carnation instant breakfast with crushed ice and milk in the blender and it makes a nice slushy that they can usuallly eat no matter what stage they are in with their eating.

 

Do you have a doctor in mind in your area who may be helpful for you? I like the idea of you getting to a doctor even if your parents won't take you.

 

Susan

[EmersonAilidh]

MomWithOCDSon - I don't think that I can eat oatmeal (gfree), but what exactly is hot cereal? Just boiled cereal? I can't BITE into food either. That has been going on for years though. When I'm eating things like tortilla chips, for example, if I can't just fit the whole thing in my mouth I have to break it by pressing it to the roof of my mouth with my tongue, NOT using my teeth.

 

Worried Dad - I can't wait for that day either! My parents joke that I'm gonna wear a track in our floor, too. Hahah. Disconcerting, but after weighing myself I found that I've lost about twenty pounds since June eighth when I went gluten free. I went from 128 to 110. Not an unhealthy weight, but still weird. Tomorrow is supposed to be the day! I'll be getting onto them about making that appointment until I SEE THEM DO IT.

 

Vickie - You are so encouraging! I bought a bunch of these little "Taste of Thai" glutenfree microwave noodles about a week ago, & with how small the noodles are they go down fairly easy. It's really oily & not exactly healthy though.. Definitely not something I could eat often. People like you are why I love my online P.A.N.D.A.S. family. <3

 

MomTo2Pandas - That's what I did when I made my appointment with Dr. Kovacevic! (So much for that.) But with this being in town & not a special deal, I have to work around my Mom's work schedule since I really don't have anyone else to take me. She's a model, so her work schedule is ALL over the place, that's why I leave stuff like this up to her because I never know when she'll be working or not. Your post was probably the most helpful thing that I have ever read on this forum. My main issue is how long I've gone without treatment & how more often than not I feel basically like I'm too far gone to be saved. But hearing about how long you had to wait & what you had to deal with from your parents has put so much hope in my heart. Thank you.

 

FixIt - I will ask whatever doctor I see about what treatment would be best for me, thanks for the advice! I will let you know what I hear & how it goes.

 

Suzan - What is Carnation Instant Breakfast? I've read a bit about it on here but beyond that I've never heard of it. I have NO problem with drinking. I can go through a jug of juice a day, without any exaggeration. This sounds like something to look into. I have a list of seven doctors in my area! Five of which are covered by my insurance. One of the ones that is not covered, however, is one of the ones that I really wanted to see. An immunologist. Besides that there is an ENT, a pediatric neurologist, & some others that I can't recall at the moment.... ..

[Suzan]

Suzan - What is Carnation Instant Breakfast? I've read a bit about it on here but beyond that I've never heard of it. I have NO problem with drinking. I can go through a jug of juice a day, without any exaggeration. This sounds like something to look into. I have a list of seven doctors in my area! Five of which are covered by my insurance. One of the ones that is not covered, however, is one of the ones that I really wanted to see. An immunologist. Besides that there is an ENT, a pediatric neurologist, & some others that I can't recall at the moment.... ..

 

http://www.amazon.com/Carnation-Instant-Breakfast-Essentials-17-7-Ounce/dp/B001EQ4ICA

 

You can find it in the cereal isle and comes in packets or like in this link with a scoop. Comes in chocolate and vanilla and you mix it with milk. My dd mixes hers with rice milk since she hates milk.

 

To make the slushy, 8oz of ice and 4 oz of milk in the blender. It's yummy.

 

Susan

Edited August 1, 2010 by Suzan

[MomWithOCDSon]

MomWithOCDSon - I don't think that I can eat oatmeal (gfree), but what exactly is hot cereal? Just boiled cereal? I can't BITE into food either. That has been going on for years though. When I'm eating things like tortilla chips, for example, if I can't just fit the whole thing in my mouth I have to break it by pressing it to the roof of my mouth with my tongue, NOT using my teeth.

 

Hey Emerson --

 

Not suggesting oatmeal. You had mentioned in your post that you'd purchased gluten free cereal but were having issues with a fear of swallowing. I was just suggesting that maybe, instead of putting milk on your cereal, you boil up some water, pour it on the cereal and let it help break it down and make it mushy, more or less like the consistency of oatmeal or the mashed potatoes you've been able to eat thus far. It's just another way of consuming the cereal, hopefully in a way that's easier for you.

 

Good going getting your stepdad involved! Please keep us posted on your appointment(s)!