Jump to content
ACN Latitudes Forums

At the end of my rope.....


Recommended Posts

Well, even though we have an appointment to see Dr. B in two weeks, some of the psychologists that we have met at Duke have been nice enough to keep in touch with me and really try to find a dr in THIS state that can help us. We had an appointment with someone that they recommended today, and I dont' know why....but I had my hopes up, and there they went.....again! I guess that I thought because the drs at the study center recommended this dr that it was a given that they would beleive in PANDAS. The psychologist that worked with my dd for 6 months believes it's PANDAS, and so far he's the only one. To sum up our appointment, and I'm sure many of you have had this same conversation with a dr before, here goes.....

Me: I give her all of the bloodwork, the 19 confirmed times/dates of strep, and a letter from a well known psychologist at Duke with OCD diagnosis. Then we discuss behavior for a little bit.

Dr: She asks me what I'm most concerned about......

Me: I tell her 1. I want her on antiobiotics for a long time, maybe a year.....can she help us with that....and 2. the fact that she tested positive for IgM band 23 (BB specific) on the western blot test....and I'm worried about lyme.

Dr: First she says that there's no way she has lyme disease b/c we just simply don't have it here in NC....(I read online last week that there were 2 confirmed cases in our county this summer) so there is no way it's lyme, no matter what the test says....

Then she tells me that it doesn't really matter how the OCD got here, but we just need to treat the OCD and not worry about the strep causing it. She would like to refer ( get rid of us) us to a psychiatrist with her practice and start dd on SSRI. I let her know that we've already tried an SSRI which didn't work, but antibiotics work great when she's on them, and that's the route that I want to take. She told me that she would never do such a thing, and I would have to go to one of the PANDAS specialists to do so b/c she doesn't know of ANY dr that would do such a thing.

This was what I thought maybe our best chance to get help locally......and it was obvious that it wasn't going to happen today. I asked the dr. if she even thought that my daughter really was physically ill, or if she was saying that this was all in her head.....and she said that she thought maybe my dd believed that she didn't feel good, but it was nothing physical....all in her head. Really??? even tough you just saw how she had strep throat 19 confirmed times in 36 months.....even after tonsils were removed, and you beleive that there is nothing wrong with her physically?

So after some lunch and a good cry in the bathroom.....we headed back home (1hour away) and we now look foward to the drive up to CT on the 15th of this month......each set back makes me wonder......Am I Crazy?

Link to post
Share on other sites

no, you are not crazy, let it add fuel to your fire! Keep all these doctors in mind, and when the research has finally caught up with what us mothers have already figured out, a nice visit with a gift wrapped pile of documentation and a little "in your face!" may be necessary- sorry, this burns me up for you. If you are in NC, Dr L in Md may be closer for you (you may have tried) Dont stop trying!

Link to post
Share on other sites

So very sorry this happened. I'm not surprised, but I'm very sorry. You're not crazy at all. Sometimes I think we are the most sane people in the world because we know how it all works. It's frustrating to have done the research & see the obvious pattern in the medical history & then be shot down by the same people that should be pointing out the pattern to US instead of vice versa. Geez! And ANOTHER THING...shouldn't these psychologists/psychiatrists be more knowledgeable about the brain & the effects that disease might have on it? IF RF & SC are caused by strep & are treated with long-term abx...I truly, truly don't get the hang-up with PANDAS. It's documented. NIH said microbes can cause mental illness. I can't wait to dance at some PANDAS parade or whatever it's called by the time it's more mainstream. Heck, I might even have my own little parade when it's finally freakin' accepted. Where is the white paper? And will we have access to it so we can send it to a few people? ;)

 

Isn't there a PANDAS doc somewhere around Charlotte? Concord maybe? I'm not saying don't go to the expert...that really is your best shot. But maybe for post-dx care, there might be a closer option. I'll see if I can find my list & PM you OR maybe some1 from NC will send you info.

Link to post
Share on other sites

Lesson learned. At this point in time, you need to preserve your energy and emotion on getting your dd well. Maybe in the future when she is better and this train we are all on has gathered even more steam, you can go back and enlighten people. For now, it is all about dd and somehow you will make the best of it while in CT. Perhaps, you can swing by NYC and see the tree in Rockefellar Center or something. But you have an appointment with a doctor who you won't need to convince, but will convince you your dd's condition is MEDICAL and needs medical intervention. Many, many of us how found ourselves here bcs the psych meds didn't work, instead they result in behavioral activation. If they worked, we probably would be carrying on with life, right? But our children's bodies were telling us, NO-SOMETHING IS STILL WRONG HERE-KEEP LOOKING!!!!!

 

We've all been made to look crazy ourselves here. You get these MDs and psychs who look at you and you can just see them writing in their notes "apples:trees" but your kid isn't crazy and neither are you! If you have the financial means to go to an expert, go. Save the wear and tear on your soul cause you're gonna need it. It is a long, bumpy ride.

 

I'm truly impressed by pediatric psychologists and psychiatrists who believe in PANDAS and are willing to step outside the psychotropic drug realm. Think about it...they will need to get on board and learn a new approach to their practice.... otherwise they will go from being in high demand to obsolete.

Link to post
Share on other sites

So many of us have hit road blocks with doctors preaching to us about what they think they know about PANDAS, antibiotics, and treatment whne they have no real idea what it is. Luckily, your appt with Dr B is coming up soon.

 

As for SSRI's, one has to be careful when giving them to a PANDAS (or even possible PANDAS) child. From Buster's Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265

 

Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

This caution with SSRI's is even stated by the IOCDF http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf

 

If you want to continue to search out a local doctor, don't let this one run you down. What kind of doctor was this one? Even a pediatrician can prescribe long term antibiotics. Many have found that when they compare PANDAS to RF (Rheumatic Fever) of the brain, doctors may "get" it better. Prophylactic antibiotics are commonly used when someone is dx with RF.

Edited by Vickie
Link to post
Share on other sites

Two thoughts:

Try for an emergency phone consult with Dr. B, he is really proactive and sensitive. Also, you probably would have more luck finding an LLMD closer than CT, and the treatment for that would be abx as well, which can only put you in the right direction. Contact ILADS for a name, they will get back to you in a day. If she has chronic strep AND lyme, you may need both docs at any rate.

You will love Dr. B, he is well worth the drive!

Edited by laure
Link to post
Share on other sites

No...you are definitely not crazy.

 

I think I've mentioned that I suspect that at least 6 of the kids on my 16 child caseload very possibly have PANDAS/PITANDS. One is confirmed positive, because her pediatrician was open to the idea, and when I wrote a letter with symptoms, onset, etc, and doctors to contact (Dr. L, Dr. K, and Dr. C,) she listened, and the child is being treated. Another is having the Cunningham test, but I don't know what he's going to do with that information when it comes back positive (there's no doubt this child has it, because he made massive gains twice when on abx...even to the point of speaking.)

 

But, there's another child, who I suggested go see a pediatric neurologist who I KNOW understands PANDAS, because he wrote a section of a medical textbook with a basic description of it. We also personally saw this doctor, and after much discussion, he said he would do IVIG on my kids (but quick followthrough didn't happen, and we now see Dr. B for IVIG.) Never the less, the child appears to have Trichitillomania and Pica. I sent the mom with research pointing to strep as the source (birth mom had the same problems,) because this doctor usually likes research. BUT, he ignored them, and said to see a psychiatrist. He did the same with the child who's having the Cunningham test.

 

No, it makes positively no sense, but on the opposite side of this, there is SO MUCH MORE known about this horrible disorder than when my now 15 yo first got sick, (and my 17 yo probably has had it his whole life. It took us 4 years to even get a dx for the 15 yo, because we couldn't find anyone who even knew anything about it. The knowledge from just this year alone, has been amazing (see the video that was just posted by Vickie. I've forwarded it to family (at least those who haven't accused me of making my children sick on purpose), colleagues, our pediatrician, and several docs who missed the dx in the past (even if they don't believe it exists, I keep sending them stuff, so that maybe one day they will). I have vowed to continue identifying kids who appear "suspicious", and helping their families get answers (yes or no.) I will continue to help these families find doctors who can help, and I will continue to keep fighting for my own kids health.

 

It's all we, as individuals can do. But, think about how strong all of us "individuals" are, when the head of NIMH said that it was because of a very persistent group of parents....

 

For now, go see Dr. B. Even if you find someone locally, I can't tell you how much less stressed I am now that I have several doctors to whom I can see. I feel like (after 7 years) that I finally have a "team" (I direct the team, and pass on everything everyone says to the others, but I finally feel like I have control that I didn't have before.)

 

I truly believe that within the next 5-10 years, PANDAS may actually open floodgates to all kinds of disorders (autism, bipolar, etc.) and it's because of US "persistent" parents, that these answers happened, and children can finally get treated without all the battles. In the meantime...keep doing whatever you have to do to get your child treated.

Link to post
Share on other sites

Its so discouraging and I'm sorry you've had another door basically shut in your face. There will be a day of reckoning w/ these disbelievers. The only two professionals I have on our PANDAS side are my son's therapist, who is totally on board (but does us no good really since she's a LMSW and can't treat) and his psychiatrist. He is not going to treat for PANDAS but he was very encouraging to me at our last appt when I told him I thought DS had PANDAS. I guess its for the best. We'll continue w/ Dr T for now, but I really need the ped to get on board to help us locally and work w/ Dr T.

 

The scary part for me is wondering who is going to treat all these children? Four experts can't possibly carry the caseload. It seems more and more people are getting the message and realizing it fits their child. Dr C has a backload of more than 100 tests to run.

 

Cindy

Link to post
Share on other sites

I am so sorry to hear about what you have gone through. We live in the Charlotte area and have had very little success here. I hope Dr. B can help you. We ended up seeing Dr. L in MD and received the help we needed. I do have a pediatrician here who is willing to work with Dr. L and prescribe antibiotics. I have heard that the doctors in Concord are familiar with PANDAS, but it is extremely difficult to get an appointment and the one doctor we saw in that office completely forgot to call us with his strep titer results! I found out from the psychiatrist (luckily she had access to his medical records because she was affiliated with the same hospital) about the possibility of PANDAS. When I called to ask them about the titer results they said that they were only slightly elevated and that if I wanted to we could start him on ten days of amox. We dismissed this doctor right away. Our son had a titer of 685 and he had not been sick in months! He had a cam kinase of 175 and Dr. L said he was borderline SC based on a physical examination. We also discovered that it is difficult to find a Lyme doctor in NC. There was a really good one a few years ago, but he got in trouble when he treated a patient with long term antibiotics. Doctors are afraid to touch Lyme in NC now. Our dog tested for Lyme a couple of years ago by our Vet here, so at least the animal doctors believe it is possible to contract it. Good luck to you.

Link to post
Share on other sites

you are not crazy!! 19 cases of strep in 36 months with no referral to a specialist is CRAZY... No immunology work up in all that time?? CRAZY.

 

 

You are doing the right thing. We've all heard the same conversation. They must have made all the docs repeat it over and over again at some continuing education course, because it sounds the same everytime I read it and it all sounds like what I heard from my child's doc "we treat all OCD the same.. we treat all tics the same"... why?? Do they treat all fevers the same? Do we treat all stomach pain the same? When a kid has a fever we find out why - we don't just put him on ibuprofen and keep making the dose stronger and stronger until it goes away.... or until their appendix burst or their body is completely septic from an infection.

Edited by kimballot
Link to post
Share on other sites

I have been there many times and have hit that same brick wall. It is so very frustating to explain something we know is causing our childs symptoms and have them respond so matter-of-factly that abxs. will not help the OCD. Don't you just want to look them in the eye and throw all the medical research at them and say "Duh!" I wish they could explain how The OCD is gone or a much lesser degree when an exacerbation has passed. A true case of OCD does not lay dormant and act up randomly. What frustrates me the most is the fact that they would shove a mind altering drug down our kids throat and not be willing to try a trial basis abxs.

Link to post
Share on other sites

AND this is why I love this forum so much! My family sometimes doubts me, my friends doubt me, even if they don't say it out loud....I know it's there. Then I actually pay these people who call themselves drs to doubt me.....I have to come home sometimes suspecting that just maybe they're all right and I'm crazy. Then I hear of all of the stories that other parents on this forum have gone through and I feel much better. Also, then I have a morning like today.....and God sends me a message to let me know that I'm not crazy....they are. This morning, my other dd age 6, non-pandas woke up running a fever, throwing up, and crying that her throat hurts really bad. Now, just so you know, she was complaining of a sore throat on Thursday and I let her stay home from school and we went to the minute clinic at CVS, just because we happen to be in between pediatricians right now b/c I can't find one that will listen. Anyways, CVS said her strep was negative and she was getting a cold. Last night she starts running a fever. You also have to know that my kids never, I repeat, never run a fever with strep. By the time she threw up this morning her fever was at 103.2 because she couldn't even keep down the motrin or tylenol. I ran her to the after hours clinic at the new dr's office that I've decided to try.....and I tell the nurse that she is crying about her throat hurting, but Ive also seen her have the flu last year.....and this is like a complete repeat of it. We should test for the flu I tell her. She says they haven't seen the flu yet this year, so they will start with a strep test and go from there. Sure enough the dr comes in to tell me that she has step. When he comes in the room, my dd is actually sleeping on the table, burning up with a throw up pan next to her, full.....and shivering. She totally has the flu, I'm sure. So I tell him that I think it's the flu, and that she's had strep a million times, never once with these symptoms......he looks in her throat and says, oh yeah...it's strep. I don't think the flu test is necessary.

Moral of the story is......they don't listen to a darn word I say even when I'm not talking about PANDAS. And when I bring up PANDAS my head might as well be turning around in circles when I say it, because then I've really lost em. Time will tell. I'm sure that after 24 hrs on the medicine, if she's still running a high fever, I will know what it is.....and the bottom line is that the dr we saw today doesn't really care on way or the other! I say that this was a message from God b/c just when I was starting to wonder if the dr at duke was right, and was there a possiblity that this was all in dd age 7's head.......just when I started to doubt.....here comes strep again! God is telling me that I'm right and I have to be heard.........so don't worry because that's exactly what I'm going to do. And when I finally get help for my dd I will not stop there......I will make it a mission to help all parents going through the same thing and maybe oneday when dd has children they will not have to go through all of this!!!!!!!!!!!! Thank you to the forum!!!! and all of your support! :angry::angry::angry::angry::angry:

Link to post
Share on other sites

What irks me in all this (okay, well one thing of many) is these attitudes of 'It can't be lyme because it doesn't happen here' and 'It can't be flu because we haven't been seeing any flu yet this year'.

 

Why doesn't the possibility occur to these geniuses that they might be seeing a patient who is on the forefront of an increase or outbreak in lyme or the beginning of the season's flu wave? These things have a beginning SOMEWHERE so why do they not even consider the possibility that it might be the person they are seeing?

 

Many years ago when I was doing a pharmacy internship at the VA Hospital, there was a patient who was having malaria type symptoms & the attending physician was discussing it with his residents & med students & they decided that it couldn't be malaria for several reasons derived from the man's bio & therefore he must have a drinking problem. I remember thinking to myself "That's not right" - but I was a lowly pharmacy student and less than the dirt beneath their fingernails.

 

Sure, they might have been right, but they made some pretty major assumptions and then acted on them as if they were fact. That really unnerved me. Now, decades later, I feel like we are on the receiving end of that health"care" paradigm.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...