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PANDASmcnuggetsw/fry/coke

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Posts posted by PANDASmcnuggetsw/fry/coke

  1. Dr. B question

    in PANS / PANDAS (Lyme included)

    Posted

    Does anyone know if Dr. B will treat someone from afar while working with the patient's local immunologist who is seeing the patient?

    We have a local immunologist on board in Michigan, and are unable to make the trips to Conneticut. I have called Dr. B's office for an answer to this question, but they said it might be a day or more to get back to me. :-(

     

    Thanks so much!

    PANDAS McNuggets w/fry/coke

  2. Vision changes

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks so much everyone. I'm starting to think there is not an area that is NOT affected by PANDAS. In the past there were warm spots on her body and now she has cool spots.......:-( Vision, chest, memory, OCD, phlegm, joint pain, emotional lability. This is a pretty all encompassing illness.

  4. Dr K, Dr B, Dr L and Dr T

    in PANS / PANDAS (Lyme included)

    Posted

    Hi friends,

     

    We are needing to add another specialist to our team before we go down the road of IVIG and while we are fortunate enough to have one specialist on our side already, we need more info on what the others do and don't do before adding another to our team. The areas we need info on are IVIG or PEX, ABX and steroid burts, beyond the 5-day diagnostic tool.

     

    It is my understanding that Dr L ONLY does pex.

    I know Dr B does IVIG. Does he do pex too?

    and Dr K?

    Dr T?

    Who does and does NOT do ABX (and I mean before IVIG/PEX as a line of treatment itself)?

    Steriod bursts?

     

    Please fill in my gaps of knowledge as you are able. Also, while I hear they are mostly all great, I welcome personal experience either on the board on by pm. Things are going downhill here fast and I need to move on decisions quickly.

     

    Thank you so much,

     

    PANDAS McNuggets w/fry/coke

  5. Vision changes

    in PANS / PANDAS (Lyme included)

    Posted

    My dd 12, is also saying her vision is doing wierd things. She says the objects she looks at seem to be blinking, light and dark, in a rapid fire fashion and it is fuzzy. She also describes that when she looks at light or objects near light, they pulsate and get bigger and smaller in a SLOW fashion. She JUST got a new pair of glasses a few weeks ago, and then as a regular doctor check up, one eye tested at 20/70 WITH her brand new glasses on.

     

    I thought the pulsating or blinking sounded like the throbbing of a headache, but she has no headaches at the time and says the blinking is erratic and NOT in sync with her heart rate. We will go back to an eye doctor for sure, but is anyone else having visions issues like this?

     

    Thank you!

     

    PANDAS McNuggets w/fry/coke

  6. Chest pain

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks everyone!

     

    She gets shortness of breath too, which also started in May. Here I think her tic exposure was when she was a toddler and we lived in the U.P. of Michigan. I remember two being pulled off of her. Possibly the lyme lay dormant until the vaccine exposure in late April. Anyway, I can't WAIT to see the lyme results. We have an appt. with a lyme doctor set up too if neccesary.

     

    PANDAS McNuggets w/fry/coke

  7. Chest pain

    in PANS / PANDAS (Lyme included)

    Posted

    Our dd 12, has off and on complained of chest pain, not too sharp, but not dull and it is not near her heart. This, as with the joint pain and all the other symptoms has only existed since the sudden onset in May. Do any of your children have this? Is it a PANDAS thing or a lyme thing? We are waiting on our lyme results now. I've mentioned it to a couple of the doctors and they don't even seem interested in this.

     

    Thank you...

    PANDAS McNuggets w/fry/coke

  9. Cam Kinase II results/Myco

    in PANS / PANDAS (Lyme included)

    Posted

    Hi friends,

     

    Today we recieved dd's (age 12)Cam KII results. It is 168 with 98 being normal. She was not in an exacerbation at the time of the blood draw, but what I guess you would call just a chronic state. Kathy Alverez said it was ok to draw the blood at this time, but just her number would be lower b/c she was not in an exacerbated state.

     

    Well, I don't see alot of folks posting their exact results, but that seems pretty high to me and Dr k said in a quick email that it was in the "abnormal territory." She just started azith at 250mg (seems low to me) a few days ago and we are waiting for lyme results through Igenex.

     

    Her myco retest after 4 weeks came down slightly, but not much. IgG went from 2.00 to 1.93 with <.90 being normal. IgM went from .94 to .68 with <.90 being normal. Non-believing PANDAS pediatrician says it's an old infection, but I thought these tests were not so conclusive and I saw someone say somewhere here that at least one doc says treat the "old" infection.

     

    She still has yellow and green mucous/phlegm which has not stopped since May.

    Should she switch to Biaxin? I know its only been four days on the azith, but at this dosage we are seeing no change so far~all PANDAS symptoms alive and kickin'. She is 5'5" and 116 pounds.

     

    After the lyme result, if it is negative should we try a tapered steroid burst~even if she still seems to have an infection? Dr k is saying go to IVIG, but is there something else we should try first?

     

    So thankful for you all,

     

    PANDAS McNuggets w/fry/coke

  11. Motrin and what might I see in DS?

    in PANS / PANDAS (Lyme included)

    Posted

    My son is 6. I follow the label for dosing on the dye free liquid. If you unsure of dosing , check the Motrin website or even look at a liquid bottle (even if your child takes pills).

     

    I believe you can give full dose short term. I never really went passed 2 weeks and never woke up him up from sleep to give it. Some on here have given it long term, but lower the dosing and some may even get the liver checked. Again, I, personally, have only given it short term.

     

    Ibuprofen shouldn't be given when the child is on a steroid and you can give milk prior to it to help the stomach.

  13. Immunizations

    in PANS / PANDAS (Lyme included)

    Posted

    I have also posted somewhere on the board here about our experience with a live vaccine. If it were not for the Hep A shot my daughter had in anticipation of her twin adopted brothers coming home from Ethiopia in April, we would not be here now. Dr K also said it was a trigger for something dormant (wish it stayed dormant :-() and he said no more vaccines for her, now that she has active PANDAS.

     

    PANDAS McNuggets w/fry/coke

  17. Chronic sinusitus as underlying infection

    in PANS / PANDAS (Lyme included)

    Posted

    Can i ask..have you had your tonsils an atnoids out?

     

    Kimballot~ may I ask what type of steroid burst helped? Was it 5 days or something more?

     

    Worried Dad! Yes it IS a small world, but glad to know you are there for support in beautiful Michigan!

     

    Fixit~I'm not sure if you were asking me this, but no she has not.

     

    And thanks everybody for all of your answers. I'm going to ask for a higher dosage. :-)

     

    PANDAS McNuggets w/fry/coke

  20. Chronic sinusitus as underlying infection

    in PANS / PANDAS (Lyme included)

    Posted

    After her lyme test next Monday, I will have in hand her filled rx for azith. It is 250 mg, 2 x for the first day, then 1 x for 4 days and repeats 2 more cycles. So it's 5 days on, 5 days off for a total of three cycles. (15 days and 18 pills total)

     

    Does this sound like enough for her???? She is 115 pounds and 5'5'', 12 years old. It seems puny.

     

    Thanks for your help!

    PANDAS McNuggets w/fry/coke

  21. Chronic sinusitus as underlying infection

    in PANS / PANDAS (Lyme included)

    Posted

    My dd has had chronic phlegm or sinusitus since her excerabation in May. The abx amoxicillan and augmentim help lessen it but not KILL it. She just went off augmentim to clear her system for the Igenex lyme test and the phelgm/sinusitus is REALLY coming back strong. Remember I posted Dr K said she will have this as long as she has PANDAS.... My question is for those who have dealt with chronic sinusitus, which abx have worked for you and at what dosgae? Is there any other treatment for sinusitus?

     

    We are also waiting on second myco test to see if that number has gone down.

     

    Thank you~ you are all so helpful!

    PANDAS McNuggets w/fry/coke

  23. mycoplasma testing

    in PANS / PANDAS (Lyme included)

    Posted

    Someone, I forget who, recently mentioned that not all mycoplasma testing is accurate and I would like to know what are the available tests for myco. My daughter tested high for it and was retested today, so we should find out the results next week when they come back from Mayo. I believe her test was called MPA IgG & IgM,S.

    What other tests cover myco?

     

    Thank you!

    PANDAS McNuggets w/fry/coke

  24. Teeth discoloration from long term ABX

    in PANS / PANDAS (Lyme included)

    Posted

    For us it is a yellowish, crusty film that regular brushing does not take care off. However, the dentist has no problem getting if off. Every once in a while, I brush my daughter's teeth GENTLY with baking soda, and that does remove most of it. The dentist told us to get a sonic toothbrush, and that should handle it...just haven't done it yet. It started while she was taking pen vk, and she is still getting it with omnicef.

     

    Be careful with the baking soda....I used it a lot as a kid, and have been told by the dentist that the reason my teeth are yellow is because I brushed to aggressively and took off too much enamel...baking soda can be abrasive.

     

    Thanks Karen,

     

    Our local cosmetic dentist says once a day with baking soda is ok, but I wonder if that is too much.

    There is also a good toothpaste that is gentle called Rembrandt...pricey though~!

     

    PANDAS McNuggets w/fry/coke

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