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laure

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  1. Like
    laure got a reaction from Cind in Lyme and IVIG   
    You should absolutely address Lyme and coinfections before beginning IVIG, especially if you are paying out of pocket.  You may, like so many others, find that your son needs 3 or more rounds of IVIG, and those still may not be effective if Lyme and coinfections are playing a role.  Although IVIG will boost his immune system, it can't take the place of aggressive antibiotic/anti-malarial treatment.  
  2. Like
    laure got a reaction from philamom in Lyme, mono, and PANS   
    Hi Rachel,
     
    You are living my life a few years ago. I'm so sorry you and your daughter are going through this. I haven't posted in awhile, always waiting for the other shoe to drop. But now I am a busy hockey mom, my daughter will attend a NE prep boarding school next fall, she has a summer job, and I am resuming my life too - I guess it is time.
     
    My daughter, now 15, at age 9 presented the exact same way as yours, in almost every way. She lived outside on our deck the summer she got sick, wouldn't enter the house. We were fortunate that a few moms on this forum sent us looking beyond PANDAS and my daughter also tested very strongly positive for Lyme. Although it is tough to tell, the doctors said it was over a year old, and looking back we thought perhaps 3-4 years.
     
    For 5 years she was off and on non-functional with crippling OCD being the primary symptom. She did have night sweats the first two years as well. We found our way to a doctor who treated for Lyme and also clinically for babesia and bartonella, with keflex, zithromax, mepron, plus herbs. She got better very quickly and returned to school. Eventually she relapsed and was home again. Couldn't eat any anything I cooked, couldn't go outside, lost 20 pounds, sat in one corner of the couch - it was horribly sad.
     
    Then a mom on this forum gave me her appointment with Dr. H in Hyde Park. Prior to this we flew to CA and Denver for our doctors, who were very good but just not in our lives often enough. She went on IV antibiotics for 6 months, improved again. Then fell back somewhat. Doctor put her on Lariam (very aggressive drug) for babesia - after 4 years during which she was always treated for babesia, she finally tested positive! Quick turnaround.
     
    Back to school and sports. Still some OCD but not as crippling. Still very hard on the family. A year later doctor determines she is largely autoimmune at this point. Moves to LDI/LDA treatment one year ago last month. Today she claims she is 100%. No OCD at all, for the first time in 6 years. She will continue this treatment, a small pinprick shot every 8 weeks.
     
    My daughter just spent the past 4 months with a school that traveled throughout South America living out of a backpack. She was the youngest of 16 girls there. She got top grades, went on 30 mile treks at high altitude, exhibited no OCD, and returned a different and more mature person. I never could have imagined that this would be possible for her.
     
    Our story is long and we were all very sad for those years. Sad for the loss of a childhood. Financially very, very difficult as well, we made and still make many sacrifices. Our memories are hard, but now we are all healing fast. It is amazing what good health will do to erase past trauma. My daughter is looking forward to her future with high hopes.
     
    Stay hopeful, keep looking, and never ever give up.
     
    Hugs,
    Laura
     
     
     
  3. Like
    laure got a reaction from Zendo37 in Sorry, just feel like a rant.....   
    First, you are a GREAT Mom! You will keep putting one foot in front of the other for your child. You will never give up on her.
     
    The one thing that helped me the most through 5 years of craziness was being able to pick up the phone and call some folks from this forum. Sometimes we would just text while sitting by our childrens' beds at night, other times talk throughout the day. It meant the world to me to not have to explain everything, to just be able to leap in and talk about the latest insanity we were experiencing. Some of these women I have met in person, others are just a friendly voice on the phone or text message from a familiar number. I will PM you my phone number and maybe others here will do the same. Call ANYTIME.
     
    Ultimately my daughter got healthy because of ideas and connections gleaned from this forum. Have hope - your daughter WILL get there!
     
     
  4. Like
    laure got a reaction from MomWithOCDSon in Sorry, just feel like a rant.....   
    First, you are a GREAT Mom! You will keep putting one foot in front of the other for your child. You will never give up on her.
     
    The one thing that helped me the most through 5 years of craziness was being able to pick up the phone and call some folks from this forum. Sometimes we would just text while sitting by our childrens' beds at night, other times talk throughout the day. It meant the world to me to not have to explain everything, to just be able to leap in and talk about the latest insanity we were experiencing. Some of these women I have met in person, others are just a friendly voice on the phone or text message from a familiar number. I will PM you my phone number and maybe others here will do the same. Call ANYTIME.
     
    Ultimately my daughter got healthy because of ideas and connections gleaned from this forum. Have hope - your daughter WILL get there!
     
     
  5. Like
    laure got a reaction from SingMom in Low Dose Immunotherapy on East coast?   
    Sorry. Here is a link to a clinic in Colorado that provides this treatment. This gives a pretty good description.
    http://imcwc.com/html5-blank/low-dose-allergy-lda-therapy/
  6. Like
    laure got a reaction from reactive in Low Dose Immunotherapy on East coast?   
    does anyone know of any docs using Low Dose Immunotherapy or Low Dose Allergy therapy for Lyme autoimmune? My friend in SF is having good success so far.
     
     
    Low Dose Allergy (LDA) Therapy : Integrative Medicine Center
    LDA is a treatment for turning off an overactive immune system. This applies to allergies, autoimmune diseases or any process in which the immune system is activated.
  7. Like
    laure got a reaction from cobbiemommy in Advice for upcoming tonsillectomy?   
    Our daughter had tonsils out 3 weeks ago. No regrets, she is doing wonderfully! She is positive for lyme and babesia, but many PANDAS symptoms, most notably OCD, which has gone into complete remission 3 times, followed by relapses. Currently she is 90% - 95% most of the time.
     
    So interesting how her new ENT put things. Her tonsils looked perfect while still intact, which he says is suspect for someone who has had high anti DNaseB titers for 4 years now. "Means they are not doing their job." After removal he said the underside of her tonsils, which couldn't be seen until after surgery, was quite pitted and filled with white matter.
     
    My advice is to stay ahead of the pain right from the get go. Even in the middle of the night. Tylenol, not advil, don't want to induce bleeding, which did happen the one time my husband gave motrin.
    Liquid tylenol was all she could do, every 4 hours. If you can get painkiller in his central line, that might be the best approach. She is 126 pounds, we did 3 - 4 tblsps every 4 hours. Sometimes sooner.
     
    She could only eat ice cream, popsicles, sherbet, yogurt, jello, applesauce - cold, soft stuff - for first 5 days. After that soup, but the temperature bothered her. She did lose 5 pounds, and she is a huge eater normally, so you may struggle there.
     
    Some ideas for non-sweet stuff: cold soups, like pureed squash soup, borscht, etc. Once he can tolerate heat, mashed potatoes, noodle soups, well-cooked pasta, eggs. We did do milk shakes occasionally. A lot of times I just had to jump-start the hunger with something normally off-limits, and then she would get past the pain to take in more.
     
    My daughter is severely hypo-glycemic, so going more than 3 hours without calories is very bad.
     
    Good luck!
  8. Like
    laure got a reaction from SSS in Flu Vaccine   
    The same argument is made with regard to policies for antibiotic use - that as a society we are using too liberally and the effectiveness is decreased in a dangerous way. On the other hand, when it is YOUR child who is suffering and really needs long-term antibiotics to get well, you feel differently. What may be good for the population as a whole may be deadly for a loved one - but it is a matter of numbers from the medical establishment's point of view. I have had heated argurments even with family members over this. Personally I will never regret doing anything we did, no matter how borderline, since those actions saved our child.
  9. Like
    laure got a reaction from EAMom in Reading Speed   
    hey Nancy,
    We had the exact same problem. Some other lyme moms I know steered me towards checking eyesight, but not the 20/20 kind - we went to a specialist and my daughter was found to have "convergence insufficiency", which is quite common and especially in lyme kids. It is correctable too, with special glasses and other exercises and light therapy, etc. I believe the cause is neurological in nature, but the symptoms are a child who is not enjoying reading, constantly re-reading, reading slowly, etc. The words jump around on the page, or go in and out of focus. Most kids are so used to it that they don't even know they have it. Check it out online, there is a lot of info.
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