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Wilma Jenks

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Posts posted by Wilma Jenks

  2. Celexa, Azitho.

    in PANS / PANDAS (Lyme included)

    Posted

    My child looked kind of normal when I started the azith. She actually is sleeping and we are shocked. She use to just scream and bite and kick at night. She does not look to good during the day all of a sudden and I am wondering if it could be the Celexa and seroquel she is on. I have heard PANDAS kids do not do well on these meds. Any advice would be helpufl.

  3. MRI-CAT-Spect Scan

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Wilma Jenks

    My child had EEG's, and MRI. They saw some little sparks on EEG, and sinus infection on MRI. Would it also be helpful to do a CAT Scan and a Spect Scan to see what else is going on, or to what degree the sinus infection is??? IS it worth going further. Just need your opininon. Any advice is helpful

  4. Brain/Inflammation

    in PANS / PANDAS (Lyme included)

    Posted

    As soon as I started the azith. my girl started sleeping more soundly. At night her brain is on fire (her words.) She talks really fast...one thought after another just firing away. she gets so agitated that she runs in street in the middle of the night. Anyway, it just seemed to me that the azith. helped with brain inflammation and helped her sleep, but during the day she looks so much more agitated, like it is making her worse. Are there other things that doctors may try for brain inflammation if this one does not work?

  6. Super dissapointed

    in PANS / PANDAS (Lyme included)

    Posted

    my child started to sleep better (for the first time in her life) with the Zith. and i thought this would be the magic bullet. today she is aggressive and mean, and not good at all.

    she is on day 5 of a 10 day course of this stuff. does this mean she does not have PANDAS? there is not one doctor that can figure out what is going on with this poor child. I have been at this for ten days with no progress at all.

  10. Sinus-MRI help please

    in PANS / PANDAS (Lyme included)

    Posted

    I know sinus infections can be a problem, but can someone read the following MRI description and tell me if it looks so severe that it would have caused my child to be like a raging animal, because it caused PANDAS? TU

     

    There is mucosal thickening of the left maxillary sinus and of the left

    ethmoid air cells, The remaining paranasal sinuses are within normal

    limits.

    IMPRESSION:

    Sinus inflammatory changes in the maxillary sinus and ethmoid air cells

    otherwise unremarkable MRI examination the brain with no abnormal

    enhancement or structural abnormality,

  17. OHMYGOSH-SHE SLEPT LAST NIGHT

    in PANS / PANDAS (Lyme included)

    Posted

    I started the azithromycen Sp??) last night and my 11 year old child slept peacefully for the first time. I have never seen her sleep like this even after a day full of really strenuous activity. I know it's too early to thind the azith. is helping, but i am reporting what i saw. she also said she had a sore throat and earaches last night. SHE NEVER GETS SICK!!!! Has anyone ever had this outcome from the abx????

  19. MY CHILD'S SYMPTOMS

    in PANS / PANDAS (Lyme included)

    Posted

    What strep test(s) did you do? Titers? Cultures? I agree that vaginal strep is a possibility. Strep can be in non-throat locations (including vagina, sinuses, skin) so a throat culture could be neg . Also lots of PANDAS kids have neg. strep titers (but they can be worth running if you don't have positive cultures). I would also recommend getting throat cultures on family members.

     

    I would rec. listening to these podcasts: http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

     

    and here is a thread of FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

     

    Is she on antibiotics? Which one and what dose?

     

     

    BTW, can you find a temporary (foster) home for your dog until your dd is better? Poor thing. :(

    Dog is safe now.

  20. MY CHILD'S SYMPTOMS

    in PANS / PANDAS (Lyme included)

    Posted

    What strep test(s) did you do? Titers? Cultures? I agree that vaginal strep is a possibility. Strep can be in non-throat locations (including vagina, sinuses, skin) so a throat culture could be neg . Also lots of PANDAS kids have neg. strep titers (but they can be worth running if you don't have positive cultures). I would also recommend getting throat cultures on family members.

     

    I would rec. listening to these podcasts: http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

     

    and here is a thread of FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

     

    Is she on antibiotics? Which one and what dose?

     

     

    BTW, can you find a temporary (foster) home for your dog until your dd is better? Poor thing. :(

    Dog is safe now.

  21. PANDA AT BIRTH

    in PANS / PANDAS (Lyme included)

    Posted

    Hi Wilma,

    Is your dd on abs? I agree with the others that the sinus infection is a HUGE deal.

     

    When did you see Dr. T? It's possible he didn't do the Cunningham test b/c the lab is closed for the holidays.

     

    i am starting abs tomorrow. i am worried because she is so hyper with this celexa they have her on. we saw dr t. in july 2010

  22. MY CHILD'S SYMPTOMS

    in PANS / PANDAS (Lyme included)

    Posted

    Welcome to the forum. You will find lots of good information and support here!

     

    With this many symptoms, including physical, cognitive, psychological, hormonal, behavioral, digestive, motor/neurological, etc, my recommendation is to have her completely checked for multiple infections. Off the top of my head, I'd say strep, Lyme, Lyme coinfections such as Bartonella/Babesia, Mycoplasma, viruses, plus mold, food allergies, yeast, leaky gut, heavy metal toxicity and whatever else the doctor thinks is warranted. She quite possibly has multiple infections and/or allergies/sensitivities going on, and you will need a doctor experienced in dealing with all of these to help you if that's the case. A good Lyme-literate doctor would be able to test for all of the above and sort out which medications are needed to treat which infections. You can find an experienced, ILADS-trained Lyme-literate doctor by posting on the Latitudes Lyme forum, or emailing ILADS (International Lyme and Associated Diseases Society). Don't let the name fool you - the good ones will look at more than Lyme and will consider everything that's possibly causing her many symptoms. The key here is comprehensive testing, not just going to a doctor who's dealt with one type of illness and having them say "Oh, it looks like X."

    I have tested for heavy metal (hair tests.) Did chelation for awhile with no success. Tested for strep, I think Lyme. Not sure about the bartonella/babesia, mycoplasm allergies. I think I tested for everything.

  24. MY CHILD'S SYMPTOMS

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Wilma Jenks

    • Doesn’t get what your saying.

    • Ticks. Clicks her tongue a lot when agitated.

    • Hates her body/herself and people. Scratches off moles.

    • Doesn’t like little girls if they are not pretty, and feels very confused about it.

    • Everything irritates her. It is like she is in a phone booth with a million flies on her.

    • Bumps into everything, like a bull in a china shop.

    • Odd sexual behavour. Touching herself and licking fingers

    • Firing obsessive thoughts at night (keeps having to say the same thing over and over or she can’t sleep) thoughts come so quickly-that she had to keep saying...I will tell you later….I will tell you later….

    • Lots of imaginary friends. Can’t play or talk to other people, because she is so deep with these friends.

    • Obsesses about getting old. Gets violent if you tell her she is getting big.

    • Worries about parents/herself getting hurt. Won’t try most activities because of this.

    • Argues non-stop-can’t take NO for an answer.

    • Incredible senses. Can smell her friend down the street. No kidding!

    • Gets mean in stores. Confused and agitated.

    • Mad when people stare at her. Thinks everyone is looking at her, and hates it.

    • Watches TV with door closed, doesn’t want parents or anyone around.

    • Sugar level is erratic.

    • Can not sit and eat dinner with family…too wiggly.

    • HATES change. Won’t even try new movies….most times.

    • Doesn’t like grown-ups or teachers.

    • Very distorted thinking

    • Doesn’t play games

    • Can’t do school work

    • Teases dog all day. Threw dog down stairs.

    • Races all day

    • Doubts that we love her.

    • Watches TV and colors in shapes on a page with markers. Doing 2 things at once calms her.

    • Doesn’t want anyone to know she listen to music. Hides in the closet when she eats.

    • Takes hours to get her out of the house

    • Bad memory/concentration

    • ALL foods make her worse

    • Can’t transition. Hates change.

    • Switches constantly

    • Fine in the morning and then switches and becomes agitated.

    • Blurry vision but gone.

    • Insomnia. Severe.

    • Wet vagina. Constantly wiping. Went away with yeast treatment. OCD or sensory.

    • She can eat a grain of sugar (even fruit) and be up all day and night from the high.

    • Chemical sensitivities

    • at night she always gets worse.

    • Early puberty: pubic hair and underarm odor in 1st grade.

    • Diagnosed with restless leg syndrome

    • Home-schooled because of impulsivity and distorted thinking.

    • Dehydrated

    • Complained of sore ankles since she could talk.

    • Brain won’t stop at night and feels like its on fire she said. (gets to sleep at 1am, most nights)

    • Can’t stop washing her hands…. They feel sticky.

    • Cutting hair off of legs. Sits home all day and cuts body hair off when not on meds/supplements. Some supplements trigger this off too.

    • Attacks me. Spits and scratches.

    • Can’t get her off the couch until 5PM.

    • She races around the house, breathing heavy and firing off thoughts non-stop..

    • Gets all unfocused at ice skating rink if there is too much noise. Same with large groups of children.

    • She never ever gets sick. I think she had a cold 2x’s in her life. I was the same way. (her mom). After chelation she started to get sick.

    • Can’t shower. Hates feel of water on body.

    • Anxiety about horse show. Quits everything she starts if it gets challenging. Anxiety builds.

    • Squeezes people.

    • Looks for vibrator and is super agitated.

    • Screams she is fat, and that moles on her body are ugly.

    • Doesn’t follow directions.

    • Can’t be looked at.

    • Wakes at the drop of a hat.

    • Wanted to burn her fingers on the stove

    • Feet/toes go a mile a minute

    • Looking at her mom irritates her.

    •

    • Lots of bad thoughts at night.

    •

    • Wants me to like Demi Lavato, just like she does.

    • Can’t touch her yet she likes to play rough.

  25. PANDA AT BIRTH

    in PANS / PANDAS (Lyme included)

    Posted

    Wilma, we spoke on the other forum and thru email. But I forgot to ask you, did you have the cunningham test done?

     

    Also, the confusion and bumping into stuff makes me think of yeast...does she act like she is drunk sometimes? Extremely silly?

    Hi Stephanie. No not drunk. She is super confused and clumsy. Very agitated and mean. I treated her for yeast for years. No help. We did the chelation for a long time. No help. Do PANDAS kids also have lots of yeast like the vaccine damaged kids?

     

    Not sure if Dr. Trifiletti did the cunningham test. Would that be blood work?

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