Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 hi all, meredith is MUCH better. she is still having psychotic blurbs, but nothing continuous. thanks for all your support. she seems to be on an approximately 26 day cycle for flaring. does this make sense? she got a cold at the end of last week and i started her on echinasia and zinc supplements. i am going to continue the echinasia, i am hoping this is helpful. does anyone take colostrum? meredith saw an infectious disease " specialist " in feb. who told me a lot of bunk. anyway...i have been on the phone with him directly and had a bit of a heated talk with him. i refuse to pay for his misdiagnosis. he said too bad, nothing he could do about it. he was mr. lyme, had been published in a journal!! wow! i was, of course, impressed! he would not tell me where to find find this publication. " it would not be appropriate. " ??????? huh? anyway he finally referred me to the article and said i should read it and then write to him. all that is available is the abstract: Pediatr Infect Dis J 1998 Mar;17(3):189-96 Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC Division of Rheumatology/Immunology, Tufts University School of Medicine, and the Floating Hospital for Children, Boston, MA, USA. BACKGROUND: In adults a subtle encephalopathy characterized primarily by memory impairment, irritability and somnolence may occur months to years after classic manifestations of Lyme disease. However, only limited information is available about whether there is an equivalent disorder in children. METHODS: Case series of five children seen in a Lyme disease clinic in a university referral center for evaluation of neurocognitive symptoms that developed near the onset of infection or months after classic manifestations of Lyme disease. The diagnosis was based on clinical symptoms, serologic reactivity to Borrelia burgdorferi and intrathecal antibody production to the spirochete. Evaluation included detailed neuropsychologic testing. After evaluation the children were treated with intravenous ceftriaxone for 2 or 4 weeks. Follow-up was done in the clinic and a final assessment was made by telephone 2 to 7 years after treatment. RESULTS: Along with or months after erythema migrans, cranial neuropathy or Lyme arthritis, the five children developed behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder. All five patients had IgG antibody responses to B. burgdorferi in serum as well as intrathecal IgG antibody production to the spirochete. Two patients had CSF pleocytoses and three did not. Despite normal intellectual functioning the five children had mild to moderate deficits in auditory or visual sequential processing. After ceftriaxone therapy, the four children in whom follow-up information was available experienced gradual improvement in symptoms. CONCLUSIONS: Children may develop neurocognitive symptoms along with or after classic manifestations of Lyme disease. This may represent an infectious or postinfectious encephalopathy related to B. burgdorferi infection. recognize any names here? lol. anyway the hospital (after talking to about 6 people) has a very sympathetic investigator who listened and agreed with me. she has mass health and they would pay the bill, but they don't have her account number to process a claim and i'm not giving it to them. someone on sci.med lyme said we have to stop paying these " doctors " and i am in the process. i'll let you know how it works out. peace, kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Hi Kay, I am so sorry you are having such a tough time with Meredith, I think starting the IV while she is in the hospital is a great idea. I don't know how you handle this heartache. My heart goes out to you. Can we send Meredith cards while she is hospitalized. Please let me know. Have you found any other mothers online that have kids with Lyme yet? You really need to talk with someone who has gone through this. Hugs, Marta NJ >From: " Kay " <b10g7@...> >>meredith is on the admissions list for a pediatric pysch ward for monday >morning. she is highly agitated, threatening suicide and homicide. > >she calmed down and went to sleep when i told her i would start the process. >that is not good because it means she doesn't feel safe and wants to go. > >last year at this exact time she was hospitalized for almost 4 weeks. > >her llmd told her psychiatrist last week, that he didn't think the amox. was >really doing much good and wanted to start iv but was afraid of sun exposure >at this time of year. we have decided to encourage the iv asap and we will >just have to keep her out of the sun. (we have a pool...and she is an >outdoor kid) > >boy this sucks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2012 Report Share Posted April 20, 2012 How'd the 1st cast go? HRH > Hi Curtis, > I am not going to Erie Shriners but will be at Riley in downtown > Indianapolis  Monday morning at 7:30 for Olivia's first cast and am a > mess.  It is five AM now and I have not slept either, wish I had known > you were up!!  I understand what you are feeling, the unknown, it keeps > racing through your mind- the different scenarios.  There is so much > riding on this for my daughter.  We really need this to work to buy us > time (3 years).  I also believe that everyone that shares on this site > remembers the same feelings and thoughts we are going through now.  It > happened fast for us as well.  We went in on March 29th and heard about > casting for the first time.  It is a lot to digest.  > Good luck to Aiden. I'm sending you good thoughts. > Meredith > > > > From: ohyearightsorry <to_fire@...> > Subject: Re: New...welcoming input especially from > Toronto, Ontario, & Canada > infantile scoliosis treatment > Date: Saturday, April 14, 2012, 10:49 PM > > > > > > > > > > > > > > > > >  > > > > > > > > > > Update...April 14, 2012 > > Anyone else casting @ Erie Shriners on Tuesday April 17th? > > I have a fair amount of trepidation as Aidan's first casting day draws > closer. My mind is filled with lists and double-checking this and that. I > realize that, in the long run, we'll be okay, and I have many of the > parents in this forum to thank. Directly, and indirectly, you have all > contributed to my understanding of I.S. and its treatment...But it's still > the fear of the unknown...the " what ifs " , that creep into the back of my > mind and keep me awake on a Saturday night... > > > > > >> > >> >> > >> > >> >> Hello to all the CAST members. > >> > >> >> My name is Curtis Okazaki, and my 20 month old son, Aidan, has >> IS. I > >> > >> >> have been reading posts in this Forum for about one week now, >> and I > >> > >> >> would like to thank all of the parents in this group who have >> posted > >> > >> and > >> > >> >> shared their experiences. Your comments and tips have been very > >> > >> >> helpful for my wife, , and myself in understanding IS and >> its > >> > >> >> treatment. I have had the pleasure of emailing, and talking with >> Mr. > >> > >> >> Graham Hill, who has provided me with a wealth of information >> for > >> > >> >> treatment options, including his experience with Shriners >> Hospital in > >> > >> >> Erie, PA. Mr. Hill is a pillar of support, and I'd like to >> publicly > >> > >> >> thank him for his assistance with our situation. > >> > >> >> We live just outside of Toronto, Ontario, Canada (Pickering), >> and we > >> > >> are > >> > >> >> in the early diagnostic stage of treatment, with X-rays and > >> > >> Pediatrician > >> > >> >> appointments. As our Canadian medical system differs somewhat >> from > >> > >> the > >> > >> >> American version, I would appreciate any helpful tips from those >> of > >> > >> you > >> > >> >> who have had experiences with IS treatment in Toronto or in the > >> > >> >> Shriner's Hospital in Erie, PA. > >> > >> >> Again, thank you to all of you for allowing my family to learn >> from > >> > >> >> yours, and we wish all of you continued success in your IS >> treatment. > >> > >> >> Best Regards > >> > >> >> Curtis Okazaki > >> > >> >> (Aidan, 20 months, still diagnostic) > >> > >> >> > >> > >> > > >> > >> > > >> > >> > > >> > >> > >> > > > >> > > > >> > > > >> > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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