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Tracie

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Posts posted by Tracie

  2. IVIG cold feet

    in PANS / PANDAS (Lyme included)

    Posted

    We love Dr. K

    BUT we did need 2 IVIGs we had one at 5 years and one at 6ish she is 8 now and doing great

    We would do it again if needed

    Insurance helped a little bit but most of it went on credit cards

    that we took money off of..

    There isnt a cure for PANDAS but a treatment..

    Tracie

  3. FRUSTRATED!

    in PANS / PANDAS (Lyme included)

    Posted

    You are not overreacting. Patients (or their parents) shouldn't have to pay for phone calls in between scheduled appointments to get a response from their doctor and when they're sick they really should have access to either a sick visit or a phone appointment with the doctor, and they should definitely get a call back from the doctor to help when problems arise. Being terribly busy is no excuse for not properly caring for one's patients. I don't know how many times I've heard the excuse, "They're so or too busy because they're trying to see as many kids as they can." But getting kids through the door, diagnosed, and started on treatment isn't good enough, or fair, if they can't provide adequate ongoing care. That's a sign that they shouldn't be taking on any more. When they don't have time to fully meet their existing patients' needs, then they're seeing too many patients. I think it is especially problematic when they also don't respond to their patients' primary care docs either (we have a problem with that, as well, and our PANDAS doc, or staff, has totally ------ up my kid's ordered treatment and I can't even get them to fix it, which should take five minutes and months later I'm still making calls and nothing's getting done...). Think about it: would you take your child to a general ped or other care provider that was so inaccessible?

     

    It appears to me that this is, or is now becoming, a serious problem in the PANDAS community. PANDAS families are desperate for help, so we're often forced to just take what we can get and because the docs are treating our kids we cut them a lot more slack than we would otherwise. Even if the doctors have the best intentions, they're not properly caring for their patients when they practice like this-- and it's unprofessional. If they can't handle their current patient load and/or the demand for new patient appointments they need to bring in a partner or hire more or more competent/better able or trained support staff to help them meet the needs of all of the practice's patients. I would also like to see them coordinate with primary care docs and other specialists and provide treatment plans for their patients that could be followed by their docs at home when a crisis arises.

    I agree...

  4. Ear infections

    in PANS / PANDAS (Lyme included)

    Posted

    I am so sorry there is nothing like ear pain

    My friends ear hurt for about a month and then they pulled a heap of goo

    out and it was all fungus.. and I think cotton from a q tip her ear always iched

    from somthing that she was eating??

    so whatever is causing it might just be to far down for them to see yet?

    I hope you feel better soon

    Tracie

  5. Dd positive strep today!

    in PANS / PANDAS (Lyme included)

    Posted

    Dd is about 50 lbs and was put on amoxicillin 400mg/5ml susp 75ml. Takes 7ml twice a day for 10 days. Okay she is extremely hyper now. My kids always get like this when on antibiotics. It's like she is slap happy and is going like the energizer bunny. One wired child always equals out to two. They feed off of each other and makes my day full of no's and If you do that again your going to your room for time out? I fear for dear dd because she finest think and goes about doing whatever.

    Mar

    So are they on abx's like every ther day to keep strep out?

    my DD takes azith every other day 250 mgs

    she has had ivig twice.

  6. Dd positive strep today!

    in PANS / PANDAS (Lyme included)

    Posted

    So what else is new. I now sound like a broken record. Dd has strep. . No congestion or throat pain. This time it's headache and fever that is manageable. The highest it got was 102 and is staying on the lower side so she is not suffering with that this time around. I can take that over 104.5!! Anyway so my anxiety is going nuts today bc all i could think about is my month of ###### in may. I hope ds doesn't get it and we do the whole roller coaster of passing back and forth. That would suck!!! Strep is currently my worst enemy!!!! How does one get strep in the middle of July?? No one else had it on the block but my kid gets it. There has to be a carrier!! And I don't know who!!! I don't want her to miss her summer. I feel bad for her!

    Mar

    What abx's are you taking and how much?

    Tracie

  8. Homeschool or let her go back?

    in PANS / PANDAS (Lyme included)

    Posted

    Im just not sure..

    My dd has been PANDAS free for about 18 months

    little flairs her and there but nothing we couldnt control

    with abxs..

    So with that said she wants to go back to school and not homeschool

    for second grade...

    She did so good last year sick only 1 or 2 times.. not everyother week like reg school

    I know that we cant keep her in a bubble anymore but If she gets sick all the time again then

    I think we will be back for IVIG # 3 with Dr.k..

    but then she might be fine even if she does get sick alot..

    so confused...

  12. School Refusal Hasn't Resolved

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks Linda. I would be interested in what you think of the K-12 program - I've heard good things. For now, I'm looking at homeschooling as a last resort. Is your 7th grader having trouble getting into school? Is that why you are considering homeschooling?

     

    We are looking into an online program called K-12 and it is an online free public school program. We are both needing to work now to pay for the medical expences of 3 PANS boys. Only the son entering 7th is struggling with the stress of school. We may see if we can hire a retired teacher to work a few hours a week with him and some studies we could do in the evenings after work. We haven't worked out the details by any means yet!!! I may see if grandma can stay with him....??

     

    Maybe this is an option to look into.

     

    Good luck, I understand,

    Linda

    Hello everyone

    I did K-12 last year for my dd for first grade and I am going to do it again this year also

    I LOVE IT !!!!

    her teacher was awesome the program is easy to follow if you need help all you need to do is call or e mail there teacher

    I just cant say enough goo things about it.. you can set your program up the way you want it

    I clean houses so I am off on Monday and Tuesday so those are our big days to get alot done

    I work on Wed,Thursday,Friday so my parents help me out with her math and flash cards and reading

    so if you work in the day you can do it at night or on the weekends

    and the best part about it???? I dont need to say anything to anyone about her

    I do have a 504 just because is she has a flair they know what is going on

    They send you all the book and everything you need for the year

    I had school stuff from one end to the other... LOL

    They have sesions with the teachers on line if you cant make it for some reason it is recored and you can do it later

    My dd wants to go back to school but I think one more year would be good for her she has been PANDAS free for almost 18 months (knock on wood) 2 ivigs ... and abxs are doing the trick..

    hope this post helps

    Tracie

  14. School?

    in PANS / PANDAS (Lyme included)

    Posted

    This is why I homeschool.. I didnt need to tell anyone ANYTHING about my dd

    no eye rolling,no "oh ok I guess we will let you know if there is strep in the class"

    ect ect..

    and the best part about it is my dd was only sick 1 time ALL YEAR!!! so happy about that

    because that has helped with her healing of PANDAS..

    I am going to homeschool her one more year and this year thank goodness it is only second grade.. LOL.. and get her back into sports

    and that way when she does get sick she can still do her school work and NOT get behind in school again!

    But if you cant homeschool get a 504 plan through the school I even have a 504 plan with the homeschool that we do

    as a just in case..

    hang in there

    Tracie

  15. IVIG for CVID

    in PANS / PANDAS (Lyme included)

    Posted

    DS's PANDAS symptoms disappeared entirely six weeks ago (shortly after 19 day steroid taper). He remains on Augmentin 875 twice daily. His overall IgG is 600. Doc says IgG will never improve without multiple IVIGs and that DS is considerably immune compromised. Doc also says we will need to reduce dose of Augmentin soon, but when we do, DS likely will get strep again immediately and all symptoms will return. Doc recommends IVIG every 8 weeks for a year then check IgG to see if improved - starting with IVIG this August. Doc also says it is highly likely that all PANDAS symptoms will return as soon as we start the IVIGs.

     

    Rock and a hard place. After 16 1/2 months of severe OCD, we would love to keep this happy OCD-free thing going for as long as possible. But doc says we have to reduce Augmentin by Halloween. DS is almost 14 and starts high school in the fall. Either we start the first of multiple IVIGs in August (and possibly get the OCD back at that time) or we wait until we reduce Augmentin in October, and just hold off, continue lower dose of antibiotics, and see if DS actually DOES get strep and return of symptoms. In that second version either - a) he gets strep again immediately and we kick back up the Augmentin, do more steroids, try to get back to a better place, and then move forward to schedule IVIGs or B) he doesn't get strep and makes it through the year on reduced antibiotics and we don't have any return of symptoms.

     

    If you were me, would you be proactively starting the IVIG ball rolling now and scheduling all of those appointments? Or would you want to wait and see if DS actually has the immune capabilities to keep strep at bay on prophylactic dose of antibiotics? Obviously, the goal is to get DS into the best possible shape to be healthy for the long-term. But if we are lucky enough that he remains symptom free for the entire next year, we could hold off on IVIG until next summer. Then he could have IVIG in June and August of 2013 and see if that was sufficient to get an IgG bump. Trying not to disrupt his entire freshman year in HS with OCD and multiple IVIGs, but don't want to do the wrong thing for him. Thoughts?

    Why

    does the Dr want to lower the Dose of Augmention? who is the Dr?

  16. Ds sick again!

    in PANS / PANDAS (Lyme included)

    Posted

    Okay ds strep on may 9th. Took him in on may 16 for recheck all is good. Dd positive on may 18. So past couple of days ds looks real tired and says he thinks he's getting sick. Do not notice any increase in tics but is crabby and somewhat emotional. He made a " mat hat" and put it on his head b/c I made him made. He wouldn't stop talking about a micro pig ( that's what he wants for a pet) we have discussed this for days. We looked it up and they get big but anyway I basically said we are not having a 70lb pig in the house and I am done talking about it. So he thinks I'm mean and just lays on the couch with his made hat on. Does not want to go outside or do anything because he is mad. I grab the had eventually and put it on and act all grumpy and charge towards dd. I get a laugh out of him and squeals of happiness from dd. I am praying this is allergies with his tiredness and congestion and some coughing but of course that would be to good to be true. I get the wake up call at 6:15 of mom I feel real hot!! 103 fever here we come. Dd is still on antibiotic and we just got through with her high fever of five days starting last Friday. Family birthday party for them both tommorow down the drain. So take him in to Walgreens to get strep test b/c sick of sitting at doctors and of bringing both of them there to catch some other bug. Rapid shows a little sigh not full blown but says the line is staring to turn pink. Also one of his Lyme nodes seems swollen in neck. He has fever congestion and cough no throat pain. 10 days of antibotics prescribed. Ugh!!! Beatiful memorial day weekend he will be stuck inside. I feel so bad for him. This has been a month of ######. I am sick of high fevers! I swear if dd gets sick even though she is on antibiotic still I will have to dig up that mad hat and go crazy or just sit in the corner and cry!!

    Mar

    Hang in there..

    I lost track of all the times we have had to stay at home when we have had something planed

    because of a fever...

  17. almost 12 weeks post-IVIg

    in PANS / PANDAS (Lyme included)

    Posted

    We live in Colorado and have been to Dr.K twice for ivig for our DD and I will go back to him anytime

    all I can say is to save your money with the other drs and save it for Dr K

    He knows what he is doing..

    even with all of the info out there it is just not getting into the Docs heads

    I dont get it..

    My DD Doc here in Colo got upset with me because she had not seen my dd in over a year and wanted her to come in for a check up when I got there we started to talk about PANDAS and she was happy that my dd was doing so well but still didnt like her on all of the abxs and I said "well you are not her PANDAS doc so she dont need to see you as much..Dr K is her PANDAS Doc and you are her other doc..

    She did not really like the remark but I DONT CARE!!!

    So that is how I feel..

    I am starting to look at some other Docs in town so we will see how that goes...

    Stick with the Doc that will help you

    and dont waste time with the ones that wont..

    Tracie

  19. Help me please !

    in PANS / PANDAS (Lyme included)

    Posted

    I wish we would win the lotto then we could help so many parents that need money for treatment!!!

    we got lucky Blue cross blue sheild helped pay for our 2 IVIG's but that was it.. not the Doc

    and the plane and hotel, rental car, food.. the list goes on and on

    BUT I would do it again in a heart beat.

    Will your Doc at least give him some abx's? try zithrmicien (sorry I can't spell it)

    my DD has taken it everyday for almost 3 years sometimes we go down to everyother day like we are now

    but if she has a flair up we go back to everyday.. I hope this summer we can go down to 3 days a week.

    Hang in there.

  23. Remission, keep appointment?

    in PANS / PANDAS (Lyme included)

    Posted

    It is my personal opinion that it is best to have a current relationship with a pandas specialist, if you have a pandas child.

     

    That being said, I have not seen Dr Murphy (so don't know her protocol), and it does sound like a significant hardship for you to get there.

     

    Hopefully, some patients of hers will chime in. There is a possibility she can do a thorough work up, and then write a plan for your docs, if they are agreeable, this could save you a lot of heartbreak if things were to take a turn for the worse.

     

    You don't have a crystal ball, but I guess I would rather waste some money and time off, and her never get sick again- than for you to cancel, and her to have a relapse, and for you to be without proper treatment. (It is great that your ped is cooperative, but sometimes it takes more than abx).

    I agree with this.. I would try to keep it even if she is doing ok..

    Tracie

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