chase23 Posted January 19, 2012 Report Share Posted January 19, 2012 I met with our pandas doc this week to update that we were seeing someone new and to share lab results. the nurse practitioner says "so is she on meds for the thryoid disorder" I'm like WHAT THYROID DISORDER. The last time my daughter had labs there was in march of 2010. they never mentioned that she had abnormally high thyroid labs. I am in disbelief. i can't even tell you how many times we've been in that office. thank god i switched to a new doctor, and thank god there was a cancelation at CHOP tomorrow morning. off to the endo doc we go. I've researched some and i'm guessing with her history its the type of hypothryroidism from autoimmune. i am just crying so hard tonight because i feel like i can't trust her medical care to anyone. that is frigtening in so many ways. every single thing she's ever come up with was because i reasearched it and explored it and insisted she get tested. what the heck is the matter with all these doctors!!!!!!!!!!!!!!!! a double pneumonia two years ago was only revealed because i demanded a chest xray after 8 weeks of coughing. IgA deficiency revealed because i insisted something was not right with her getting pneumonia each year. Mycoplasm revealed because pandas doc number one wouldn't test and i had to switch to another one. anemia revealed because someone finally agreed she looked like she was a vampire. i could go on and on. I just want someone who knows SOMETHING, someone who can figure out why she has so many immune problems. i cannot believe how many doctors have let me down. she is only 4 years old and is such an angel. i go to bed most nights frightened to close my eyes because it seems like if i'm not watching every second something else happens. does that make sense. i have no medical degree yet i've had to figure this all out. i am hear to say i think i've reached the end of what i can do, she is obviously a sick kid with a million problems and i just don't know what else to do or who to take her to. The sad part is, I finally got her on zithromax, she cleared up in 24 hours of all pandas symptoms, and now we have this. we can't catch a break here in south jerz. sorry for the vent all, you guys are all i have. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted January 19, 2012 Report Share Posted January 19, 2012 Good God, what negligence! My DS is 5 and we have also been thru the ringer with docs that just do not seem to give a fig! We see Elia at CHOP and Bouboulis in CT. They are part of our "team" and we are seeing excellent results for our sweet boy. Hang in there - Our son was dx at 2.5 and we feel that he was getting Strep long before that, perhaps as early as 18 months. His intelligence and functioning is NOT compromised to the point of keeping him from moving forward with all typical expectations in life fir this age group. Keep fighting the good fight - you WILL get her what she needs and make it to the right track! Warm, positive thoughts your way! -Kath Link to comment Share on other sites More sharing options...
missjo Posted January 19, 2012 Report Share Posted January 19, 2012 I completely understand having to be the doctor for your child. I fell like the doctors just look at the surface and neglect to look at the whole picture in detail. What are your daughters thyroid test levels? I want to ask my sons docs about secondary hypothyroidism because his t4 free is a little low and TSH is pm the low end of normal. Link to comment Share on other sites More sharing options...
cobbiemommy Posted January 19, 2012 Report Share Posted January 19, 2012 This was a very timely post for me, because I was thinking how we would be able to relax a little and let Dr. B and Dr. C take care of my young man from here on out. (I refer to it as "driving the bus".) I have a copy of every lab and every doctor's visit since we slid down the rabbit hole with this horrible mess. We have had to ask all the tough questions and request the labs to get things put together, as well. It is exhausting as everyone on this forum knows only too well. I know nothing about immunology, so I would welcome information from anyone who has been down that path. We are taking all of our recent labs, doctors notes from last visits, and immunization records. Also, we are taking a timeline of what medication was taken when and some pictures from the worst of the rashes, so he can compare them to now. What else should we take? Have a list of questions, also! Can we ever relax? Can we let these doctors do their thing without double checking their every action, lab test and recommendation? Sorry Chase 23 to vent on your vent. You have cyber hugs from Missouri coming your way. The best thing I can add is to take it one day at a time, sometimes just one hour at a time. I tried to get more organized with data from docs and labs. (It helps my peace of mind, if nothing else.) Cobbie Link to comment Share on other sites More sharing options...
beeskneesmommy Posted January 20, 2012 Report Share Posted January 20, 2012 No. and resounding no. You cannot let anyone else drive the bus. You must drive it and depend upon these wonderful, extremely overloaded docs to do a great job, with your help. I talk w/ my son's specialists every 4 weeks and I keep notations going in my datebook re: his progress. I prepare accurate and detailed reports prior to any meeting or phone consults. I make sure that we are filled to the hilt w/ scripts at least 30 days in advance and I micromanage all labs since Quest can't seem to send the results to the right docs offices without my oversight. If you look at the big pic, docs like Bouboulis have patients coming in from all over the world and get new patients every day. It would be impossible for anyone to keep up with it, although his team is pretty reliable. We have done very well with lots of patients, the ability to manage phone consults that are inevitably 1-2 hours late and the understanding that we are darn lucky to have solid, caring help. Link to comment Share on other sites More sharing options...
scossio Posted January 20, 2012 Report Share Posted January 20, 2012 We are still waiting for our first visit with Dr. B in Feb. I just wanted to comment on the thyroid issue. I would love to know how many pans kids have thyroid disease. My son developed Hashimotos which is autoimmune thyroid disease when he first presented with pans symptoms. It was so far out of the blue, but then again so was the "explosion" as I refer to it. I honestly believe his thyroid disease is tied into his pans. I do not believe he would have developed it otherwise. I also want to say that I have totally been where you are. I have lost my faith and trust in drs and I am praying that Dr. B will restore some of that for me. Keep up the good work, I know how exhausting it is. Link to comment Share on other sites More sharing options...
Tamistwins Posted January 20, 2012 Report Share Posted January 20, 2012 (edited) Scossio, I do know of another child who has hashimotos as well as pandas. I am glad that you are getting in to see Dr. B soon and I hope he can help. Edited January 20, 2012 by Tamistwins Link to comment Share on other sites More sharing options...
peglem Posted January 20, 2012 Report Share Posted January 20, 2012 Just recently discovered hashimoto's here, too. Link to comment Share on other sites More sharing options...
chase23 Posted January 20, 2012 Author Report Share Posted January 20, 2012 I am sure they are related as well. hashimoto's is the likely diagnois here. waiting now on new blood work I did find in my research that gluten allergy is often found with hashimoto's. so i asked them to run that panel with the bloodwork. i've been on the fence about a trial gluten free run. but i don't think i should just throw that out there not really knowing if its an issue. so i'll be curious about that. somehow the the thyroid has to be connected to the pandas, both are autoimmune. I just wonder if there is some other "thing" causing the body to turn on itself like this. was it immunizations, gluten? not sure but something got her body going in the wrong direction. makes you wonder what other autoimmune stuff could pop up. We are still waiting for our first visit with Dr. B in Feb. I just wanted to comment on the thyroid issue. I would love to know how many pans kids have thyroid disease. My son developed Hashimotos which is autoimmune thyroid disease when he first presented with pans symptoms. It was so far out of the blue, but then again so was the "explosion" as I refer to it. I honestly believe his thyroid disease is tied into his pans. I do not believe he would have developed it otherwise. I also want to say that I have totally been where you are. I have lost my faith and trust in drs and I am praying that Dr. B will restore some of that for me. Keep up the good work, I know how exhausting it is. Link to comment Share on other sites More sharing options...
missjo Posted January 20, 2012 Report Share Posted January 20, 2012 What blood test do they use for Hashimotos and what would blood results look like? Above or below reference range? Link to comment Share on other sites More sharing options...
peglem Posted January 20, 2012 Report Share Posted January 20, 2012 What blood test do they use for Hashimotos and what would blood results look like? Above or below reference range? Usually they test TSH (thyroid stimulating hormone), T3 and T4. Also, they test for anti-thyroid antibodies. Link to comment Share on other sites More sharing options...
bws Posted January 20, 2012 Report Share Posted January 20, 2012 Unfortunately, I have lost my trust in the medical community too. After diagnosing two of my children with very rare disorders over the internet, one of them Pandas, I say the heck with them all, and do my own research. Link to comment Share on other sites More sharing options...
AmySLP Posted January 22, 2012 Report Share Posted January 22, 2012 My 7 yr old who is 3 yrs since onset of PANDAS, also showing thyroid numbers off. Saw endo. At chop a few weeks back & plan to monitor the labs...seems like TSH increases with PANDAS exacerbation Link to comment Share on other sites More sharing options...
chase23 Posted January 22, 2012 Author Report Share Posted January 22, 2012 wow, very interesting. maybe that is what is happening to my DD. I am so anxious for these numbers to come back. now wondering how many kids would show elevated tsh with pandas excacerbation My 7 yr old who is 3 yrs since onset of PANDAS, also showing thyroid numbers off. Saw endo. At chop a few weeks back & plan to monitor the labs...seems like TSH increases with PANDAS exacerbation Link to comment Share on other sites More sharing options...
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