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Everything posted by adkmom

  1. 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. 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. 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!
  4. 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?
  5. 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
  6. That would be great. I can write up a specific news release for that wire.
  7. Hi Wendy, Was waiting for your reply. And figured you'd be jumping in. You've been so helpful to many of the moms here. Kmom (Kristy) suggested contacting you. Are you in San Fran? darlene
  8. The names are changed. The story is told. However, if neighbors or school friends know "your story", then of course they would recognize your family. The general public would not. Hope that makes sense. darlene
  9. 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.
  10. Thanks everyone. Now it does seem to be decreasing...so maybe this wave is over but....we'll prepare for the next. So strange, as he's blinking, grunting, he's also not in a very good mood (I guess who would be). it disappears and he's lovely dovey.
  11. Had trouble taking my poll. but I'd opt for mugs and magnets...at least 12 of the magnets, about 6 mugs. thanks for all your work!
  12. Hi everyone, ds4 has started blinking a lot the past 2 days, all day long. That is in addition to the grunting sound which has gotten louder those 2 days as well. Anyone experience this? Is this herxing or the meds not working? (Don't know if it's an additional tic caused by Pandas?) thanks. darlene
  13. 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
  14. 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.
  15. It's really simple and SOOOO worth it. Check out my response to Tami and enjoy your trip.
  16. 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
  17. Aren't they actually off with that number? I thought that was CDC reporting at a minimum. It's more like 10x that number or 40,000 cases....right? Thanks for forwarding. sad that it always takes someone in power to feel the pain before getting ignited to do something!
  18. 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
  19. Denise, You guys didn't have any Lyme issues, did you? Working on some articles. If you have any order forms, I'm sure someone (or myself) would be willing to make copies and put in Pandas doc offices (we'll see Dr. B 3/6) Keep rockin
  20. 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. 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.
  21. Denise, Been on the Lyme board a lot lately but just saw this.... Great work! I bet the docs offices would put some order forms in their offices and possibly announcements through their email patient listings. It's a lot of work that you've already accomplished. WhewwwHooooo is right. Must feel good to be making some progress darlene
  22. 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.
  23. Thanks Philmom. I've seen that. I guess they're under Lyme Disease Association and are responsible for providing aid to families. Kmom - I'll pm you. Would welcome any help. (either in starting the foundation or in pitching articles) I think best chance of getting stories out is in May (with the awareness aspect). Many thanks. darlene
  24. Philmom, Thanks for the info. Did your child present with cognitive/behavioral symptoms for Lyme? Starting to pitch articles for May..Lyme awareness month. darlene
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