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adkmom

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Posts posted by adkmom

  1. Lyme Awareness Month-we need your help

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks to everyone who has responded. If you haven't already, can you please forward to my personal email: darlenemcmahon@frontiernet.net the following?

     

    what state you live in, your first name, your child's first name and a 2-3 paragraph description of your situation/story. (the presenting symptoms, how you ended up at the doc/testing and how things are going now) I'm sure I'll be back in touch with some questions, but it's a start and I'll tweak what you write and plop it into the press release.

     

    (Everyone - I'll forward the release with your story before sending it out. So, you can approve of everything.)

     

    thanks again. and sorry for any confusion!!

     

    darlene

     

    PS - We're still looking for stories from DE, Maryland, New Jersey, Rhode Island.

  2. Lyme/Pandas abx dosages

    in PANS / PANDAS (Lyme included)

    Posted

    Can anyone share if this is a typical dosage for Lyme/Pandas dx? ds4 is on 200mg/Azithro. and 250/mg of Cefdinir. LLMD added Azithro. but cut Dr. B's Cefdinir dose in half. (He ahd been on 500mg daily Cefdinir). I'm asking because he seems to be not doing as well when he was on full dose. Maybe Pandas symptoms creeping in or Lyme, not sure.

     

    thanks.

     

    darlene

  3. Lyme Awareness Month-we need your help

    in PANS / PANDAS (Lyme included)

    Posted

    I would be happy to help. We are not in a top ten state, but we are in a top state by CDC numbers for Rocky Mountain Spotted Fever. Also, we are a top state for Autism Spectrum Disorder, which my son was misdiagnosed with at age 6. Could other children be misdiagnosed as well?????

     

    Hi,

     

    Did your child get a positive for Rocky Mountain fever? Positive for Lyme? What region of Missouri are you in? Whose your treating doc?

     

    thanks for your support!

  5. Lyme Awareness Month-we need your help

    in PANS / PANDAS (Lyme included)

    Posted

    I'm torn about this because we also have a dx of PANDAS, but I would love to help if I can.

    Same thing here... we also have a PANDAS diagnosis for ds, and for dd we have no positive labs, just going on symptoms, so I don't know how helpful it would be (I'm thinking our story will probably sound more like a crazy mother making up stuff!!! LOL!!!)

    Now, seriously, I'd be happy to share, at least ds's part, since after over a year of treating PANDAS and before moving to plasmapheresis, we finally got 4 bands positive through LABCORP, and we decided to jump ship and pursue Lyme/Co-infection treatment.

    Let me know if you have any guidelines to follow, and I'll try to start writing something...

     

    Thanks! What town & state are you in?

  6. Lyme Awareness Month-we need your help

    in PANS / PANDAS (Lyme included)

    Posted

    Lymemom-

     

    Which state are you in? If it's a leading state, maybe we could tweek the press release for your situation, if it presented as physical symptoms? Did you catch it early?

     

     

    thanks for responding!

     

    darlene

     

     

    Hi all,

     

    As many of you know, May is National Lyme Disease Awareness Month. That month provides a great opportunity to promote Lyme Disease and raise awareness.

     

    Myself and another mom are starting to organize an awareness campaign, focusing specifically on children and Lyme Disease. (While many groups may promote awareness of LD, few to none focus solely on children diagnosed with LD.) The stories that we're pitching to the media will include children who have tested positive for Lyme; who presented with NOT the typical rash or physical symptoms but with cognitive/neuropsychiatric symptoms. The stories some moms have already shared regarding their child's struggles due to personality/behavioral changes can provide an extremely emotional and moving message. (Also -- an educational message: you do not have to have a RASH to have this disease...many children are misdiagnosed because of the behavioral component.)

     

    Our plan is to "pitch" media releases with localized stories to several of the top newspapers within the top 10 states with Lyme Disease cases.

     

    The core message is: LD is easy to get, can be hard to treat, children make up the highest percentage of infections, children's symptoms can often be different than the typical physical signs most have read about. We hope that with these stories, our children's "voices" will be heard. They are, in essence, the forgotten victims of a disease that's created such controversy. And they need to be heard.

     

    We can't do this alone. If you would like to share your child's story with the media, please PM me and I can provide further info. We're focusing first on the print media, so your child's name can be withheld from the article, if you wish. It is their story, NOT their name that's important to the reporter. Again, we're looking for children who presented with BEHAVIORAL/NEUROPSYCH symptoms.

     

    Also, if you wish to help us in other ways, we'll gladly accept! If you live in a top 10 state and would like to be the point person and gather media sources for that state, please PM me as well.

     

    Thanks for reading.

     

     

    Darlene

    Great idea. It's true that kids are suffering disproportionately due to doctor ignorance and the variety of symptoms that can be due to lyme. My kids did not have neuro psyche symptoms (except my son was irritable when he was very sick) but I have a relative who I believe has severe neuro psyche problems due to these infections. We are still working on proving it is a TBD for her but later this could be a story. I'd like to read any stories that come out of this!

     

    PS - In pre-mommy days, I worked as a reporter. But I'm very new on this Lyme journey, ds4 diagnosed only a few months back. So, I welcome your knowledge, guidance and input in making this awareness campaign a success.

  10. Lyme Awareness Month-we need your help

    in PANS / PANDAS (Lyme included)

    Posted

    Hi all,

     

    As many of you know, May is National Lyme Disease Awareness Month. That month provides a great opportunity to promote Lyme Disease and raise awareness.

     

    Myself and another mom are starting to organize an awareness campaign, focusing specifically on children and Lyme Disease. (While many groups may promote awareness of LD, few to none focus solely on children diagnosed with LD.) The stories that we're pitching to the media will include children who have tested positive for Lyme; who presented with NOT the typical rash or physical symptoms but with cognitive/neuropsychiatric symptoms. The stories some moms have already shared regarding their child's struggles due to personality/behavioral changes can provide an extremely emotional and moving message. (Also -- an educational message: you do not have to have a RASH to have this disease...many children are misdiagnosed because of the behavioral component.)

     

    Our plan is to "pitch" media releases with localized stories to several of the top newspapers within the top 10 states with Lyme Disease cases.

     

    The core message is: LD is easy to get, can be hard to treat, children make up the highest percentage of infections, children's symptoms can often be different than the typical physical signs most have read about. We hope that with these stories, our children's "voices" will be heard. They are, in essence, the forgotten victims of a disease that's created such controversy. And they need to be heard.

     

    We can't do this alone. If you would like to share your child's story with the media, please PM me and I can provide further info. We're focusing first on the print media, so your child's name can be withheld from the article, if you wish. It is their story, NOT their name that's important to the reporter. Again, we're looking for children who presented with BEHAVIORAL/NEUROPSYCH symptoms.

     

    Also, if you wish to help us in other ways, we'll gladly accept! If you live in a top 10 state and would like to be the point person and gather media sources for that state, please PM me as well.

     

    Thanks for reading.

     

     

    Darlene

     

    PS - In pre-mommy days, I worked as a reporter. But I'm very new on this Lyme journey, ds4 diagnosed only a few months back. So, I welcome your knowledge, guidance and input in making this awareness campaign a success.

  14. Children with atypical/behaviorial symptoms

    in PANS / PANDAS (Lyme included)

    Posted

    Darlene,

    Your description sounds just like my daughter, and her main problem is Bartonella. Look it up. The treatment is slightly different than for Lyme. My daugher is doing better, but still not completely healed.

     

    Hi there,

     

    I kept saying DD!!, meant DS4..anyways, the LLMD said it sounds like he has Bartonella as well (no talk of self harm though and no cough that I thought were always present with Bartonella) But I thought the treatment was the same. He's on Azithro and Omnicef. Is it usually a different antibiotic for that? Does your daughter also have Lyme? What state are you in? So, your daughter presented mostly with neuro/psych symptoms?

     

    thanks.

     

    darlene

  15. Need reassurance

    in PANS / PANDAS (Lyme included)

    Posted

    With Our DS4 with Lyme/Pandas we noticed a motor tic and mild OCD and then sought help. Retrospect, it was a lot of neuropsych symptoms that we didn't recognize. Can't help too much with treatment since we're still seeing up and downs with the tic. Although the OCD seems to be clearing thanks to 2 antibiotics.

  17. Disney- Guest Assistance Passes Saved Us!

    in PANS / PANDAS (Lyme included)

    Posted · Edited by adkmom

    Hi Darlene,

    We plan on going in April, G-d help us, help me cause things are pretty bad now.What did you tell them. How much details do you need to give?

     

    Thanks,

    Tami

     

    Tami,

     

    At Universal, she asked what's the disability? and I started to say autism, .... just so I wouldn't have to go into the Pandas explanation. Before I could complete my sentence she handed me the pass. very simple. You could even say ADHD or sensory disorder if it's easier to avoid long explanations. Disney, I just started saying my son has a disability...and they nodded and gave me the pass. they could see I had a letter in my hand, though. So maybe that helped.

     

     

     

    darlene

  19. Disney- Guest Assistance Passes Saved Us!

    in PANS / PANDAS (Lyme included)

    Posted

    Much, much thanks to the person who started the discussion about Guest Assistance Passes at Disney. We recently returned from our 2 week vacation and it absolutely SAVED us! For anyone else interested, we brought a letter from the doc but the parks never asked to see it. At Universal, the pass (although not advertised as getting you to the front of the line) actually did jump us right up to the front. It serves as a FastPass for ALL the rides. Disney, it was the same, it was a FAST Pass but for all the rides. If a ride didn't have the fast pass option, the attendant brought you onto the Handicapped line, (which I really never thought I'd have my child on) or to the Exit (as with Disney's Haunted House) and then you'd jump right on the ride.

     

    At first I was reluctant to get the pass, but is really saved us. My ds4 tired easily, so standing and waiting wouldn't have worked and at Universal, an OCD flaired that I didn't suspect...he was actually terrified of some of the rides (i.e.: Jurassic Park which he was dying to go on) he flipped out when I tried to press him to go on it. I was expecting overstimulation issues but not fears...so that threw us. Anyways, he went on very few rides at Universal, so thank goodness he didn't have to wait for those few.

     

    anyways, hope this helps..anyone considering a FL trip. -_-

    darlene

  21. Anyone from upstate NY?

    in PANS / PANDAS (Lyme included)

    Posted

    Good luck. let us know what happens with the results. Dr. B was shocked when Lyme positive results came back for us. 2 negatives on LabCorp but clear positive with Igenex. Had it not been for the proper testing, we never would have known...that's scary. My son was having fatigue briefly but every day, so that was the only symptom (non Pandas) that Dr. B couldn't figure out. It wasn't attributable to Pandas but as we've learned...the result of Lyme.

     

    all the best. sounds like you're on top of it now.

     

    I grew up in Amherst, New York (suburb of Buffalo), family still lives there, have had lyme since childhood, but live in Florida now.

     

    Truly a small world at times. I live in Amherst but originally from Boston MA. Treating my son for PANDAS for 2 yrs but waiting for Igenex results. Many vacations on Nantucket and the cape. We'll see...

     

    Lismom -

     

    I'm just wondering..why was there a wait to do the Igenex tests? It seems that most Pandas docs want to test for the co-infections as soon as they diagnose for Pandas.

     

     

     

    I have only been working with my pediatrician for the last several years. What we were doing was helping for a while. It wasn't untill I went back on this blessed board this winter when things were getting bad again, did I see the cross over between many with PANDAS finding Lyme. Our results should be back in another week or so.

  23. Anyone from upstate NY?

    in PANS / PANDAS (Lyme included)

    Posted

    I grew up in Amherst, New York (suburb of Buffalo), family still lives there, have had lyme since childhood, but live in Florida now.

     

    Truly a small world at times. I live in Amherst but originally from Boston MA. Treating my son for PANDAS for 2 yrs but waiting for Igenex results. Many vacations on Nantucket and the cape. We'll see...

     

    Lismom -

     

    I'm just wondering..why was there a wait to do the Igenex tests? It seems that most Pandas docs want to test for the co-infections as soon as they diagnose for Pandas.

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