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Everything posted by mdmom

  1. DS16 will finally have his tonsils (and possible adenoids if they look bad) removed next Wednesday. He has a central IV line so he will be on IV Clindamycin before, during and after surgery. Doc will also prescribe IV fluids to be administered at home, so hydration will not be an issue. Lyme doc ordered culturing test for tonsils. Would love any advice on how to make this process run smoothly. He is gluten and dairy free so I will need to be creative with getting calories in him - and he needs the calories - he is 6'3" and 122 lbs. He already has trouble maintaining his weight and he is very picky about liquids - he only drinks water. He hates smoothies or any sweet liquid. Thanks in advance.
  2. http://www.medscape.com/viewarticle/822146?src=emailthis If you can't open the Medscape article, just set up a free account and it will let you access the full article.
  3. Refresher...my DD14 is still quite ill despite 3 years of aggressive ILADS treatment for Babesia, Bartonella, Mycoplasma, Brucella, viruses, yeast, etc. We've addressed diet, MTHFR, detox, immune support, etc. I finally took her to an immunologist at the request of her neurologist who is treating her for Idiopathic Intracranial Hypertension (which 3 of her doctors believe was caused by Brucella). He is concerned that she has such a long history of weird infections. So the immunologist ran some basic immune function tests (we already knew her total IGG levels are normal; only subclass 3 IGG are low). Her CD19 (B cells) came back low - even the lab flagged them as low - yet the immunologist said they are still normal since they "aren't low enough to be concerned." Ugh. Believe me, I don't need one more diagnosis for my daughter. However, how low is low enough to be taken seriously? Her CD19 levels are 7% (range is 9-30) and Absolute CD19 is 117 (range 130-800). The fact that she her symptoms and lab tests were never "bad enough" is what delayed her getting help in the first place. I believe that she has been sick with tick-borne illnesses most of her life, but no doctor would take her seriously because her labs always looked "normal enough."
  4. Rothman saved my son's life. We went there for ERP therapy for a total of 5 weeks last year (2 separate trips). It was worth the time, travel and inconvenience of being away from home. The second time we went was for eating issues related to fear of vomiting. I highly recommend you at least call there. Explain your situation to the receptionist and ask to speak with a doctor. The director of the program spoke directly to me before we made arrangement for my son to go. He went over my son's symptoms with me and decided that he would be a good fit for the program. It is also really helpful that they "get" PANDAS at Rothman. They recognize that a lot of kids have a medical basis for their OCD and they accept that a lot of parents are finding help for their kids with antibiotics, IVIG, etc. and I have never felt judged that my son wasn't following a typical course of treatment for his OCD (i.e. psych meds).
  5. This isn't exactly answering the question you are asking, but I'll comment anyway. I was given Terbutaline when pregnant with my DD14. she was breech and they used this intravenously to relax my uterine muscles in order to externally manipulate my uterus in hopes of externally turning her around (called a medical version). She does not have PANS/PANDAS or ASD, but she has Lyme & Co and is very ill and has been symptomatic most of her life. I never considered until I read your post how the Terbutaline might have affected her. My DS16 has PANDAS/PANS and ASD. I did not take Terbutaline with him.
  6. I recommend seeing a LLMD - they are trained to look for weird infections that other docs may not think to look for. Thanks to our LLMD, my DD14 was recently dx with an active Brucella infection. All of her mainstream docs are dumbfounded that the LLMD thought to test for this.
  7. Good for you and your child if you made the Flumist/PANS connection soon after vaccination. My son's PANS onset was not after the Flumist but he did exhibit his WORST exacerbation after the Flumist at age 9. He fell apart in front of our eyes but was not diagnosed with PANDAS/PANS until 4 years later at age 13. He has been climbing out of that pit of he## ever since. His onset of symptoms was post-appendicitis/peritonitis at age 4.
  8. My entire family eats GF and we steer clear of MSG as well. But honestly, I was under the impression that MSG contains gluten. I have never seen a certified GF product contain MSG. Of course there are products that contain no gluten ingredients but contain MSG. We use Bionaturae pasta as well. Even when we entertain, I serve this pasta to my non-GF guests and everyone loves it. I also like that it's organic - many GF products contain soy and corn, and I will only use organic soy and corn because they tend to be a source of GMOs if they are non-organic. GMO foods can create inflammation and overload the immune system as well. We try to avoid processed foods, but my children did not start eating GF (and we are also dairy free) until the ages of 10 and 12. I have kept some foods in their diet simply because it creates normalcy for them (e.g. GF pretzels, potato chips, occasionally cookies). Here are some GF favorite brands of ours: Pasta - Bionaturae Bread and Bagels, Hot Dog Buns - Udi's Granola - Udi's Crackers - Schar Cereal - Nature's Path Organic - Envirokidz Fast Food Restaurants (occasionally we are naughty): Noodles - ask for the GF fusilli Panera - salads (hold the croutons and bread), black bean soup Chipotle - Burrito bowls are the burrito without the tortilla - rice, meat, toppings Chick Fil A - get the grilled chicken nuggets, fries Dominoes Pizza - ask for the GF crust Of course, rice, potatoes are naturally gluten free. The easiest way to eat GF is to stick to unprocessed foods and prepare fresh meats, fish, vegetables, fruits, nuts, etc. If you tend to use processed foods, it is a difficult transition because so many processed foods contain gluten. We mostly shop the perimeter of store where you would find produce, meats, dairy. Whole Foods and Wegmans (if you live in the Northeast) are great sources for GF products and Wegmans has the best prices on GF products. If you have a specific GF question, please feel free to PM me - we been eating this way (100% compliant) for 4.5 years.
  9. Thanks everyone for your kind words. The doctors said that Doxy could have caused it and yes, she was on Doxy for Brucella but only had been taking it for 2 days when the headache pain spiked last week. My theory is that something else caused the IIH (e.g. infection) because her headache started in November. But the Doxy tipped the bucket and made it worse. As far as the Brucella goes, LLMD feels like we should be looking in our history for the answer. When I was tested for tick-borne illnesses 3 years ago (2 months after we started the Lyme & Co journey with our children), I tested positive for Brucella. The health department even called me when my positive result was reported to them. We believe that DH gave it to me since he grew up on a dairy farm and was raised on raw milk. Then I transmitted it to DD in utero. CDC lists sexual, in utero and breastmilk as possible transmissions. It's also possible that DD was recently infected. We live in the woods and we often have red foxes running through the yard. Our dog often rolls in their feces and DD always insists on cleaning her when this happens. And how can I argue with a teenager that wants to be helpful? Well, lesson learned...I will no longer let her clean the dog when she does this. Of course, she cold have also gotten from a tick. Who thought to test for Brucella? Our smart LLMD often runs a Febrile panel on all of us, which includes Brucella.
  10. Thank you all for the ideas you have shared with me regarding my daughter's headache. Just to review, she developed an unrelenting headache on 11/16/13 and up until last week no doctor has been able to find the reason. Her pain spiked last week and she was admitted to the hospital. Some smart pediatrician thought to look in her eyes and saw optic nerve involvement. Opthamologist confirmed papilledema (swelling of optic nerves), MRI (2nd one this month) showed nothing. So they did a lumbar puncture and she had an opening CSF pressure of 48cm. Highest pressure the docs have ever seen in someone her age and size. She is 14. Newest dx is Idiopathic Intracranial Hypertension (IIH). They are hoping to manage it with meds, as it can be a chronic condition but surgical intervention may be needed if the headache and vision implications can't be managed with meds. We now have a pediatric neurologist and a pediatric neuro-opthamologist on her case. After 3 years of treating co-infections and getting a lot of criticism for the LLMDs protocols from mainstream docs including the new docs on her case, they all are suspecting Lyme caused this. Is that irony or what? Now the plot thickens....she has an active Brucella infection confirmed by 3 blood tests in the last 3 weeks. She also has a staph infection confirmed by 2 blood cultures. I also found a sphenoid sinus culture lab result from Nov. 2013 that showed staph in her sphenoid sinus, which the ENT considers normal. Her primary care doc, the neurologist, neuro-opthamolgist and LLMD all agree that she needs to be treated for the Brucella. But no surprise, no doctor would touch the infection but the LLMD. While all of the 3 mainstream docs twiddled their thumbs this past week and waited for someone to treat her infection, my LLMD already had ordered the IV meds to treat it and had them delivered to my house. This is the very same scenario that made me leave the mainstream medical world and go off the beaten path to our LLMD. So many mainstream docs will pass the buck. The staph she has in her blood is coagulase negative staphylococcus and it's the same bacteria that was found in the sinuses. According to dr. Shoemaker, this is MARConS. She is being treated now with IV Vancomycin for Brucella and staph. And now we wait for the idiot mainstream doctors now involved to try and figure out the reason for the IIH. LLMD thinks it is caused by the Brucella (many medical articles have been written about this connection) but I wonder if the staph in her sinuses could have leaked into her bloodstream and/or CSF and caused the intracranial hypertension. Does any of this make sense to anyone out there? I would love your opinions.
  11. Waiting to hear back from PCP and ENT who did the culture of my DD14's sphenoid sinus back in November but never called with the results. I just happened to be looking over lab results today and had never looked at the culture one and saw the sinus culture contained "rare gram positive cocci and few white blood cells." LLMD says this is bad and probably is a huge factor in hindering her progress after 3 years of aggressive treatment. LLMD thinks it's the MARCoNS that Shoemaker talks about so he ordered BEG spray and changed up her meds. DD14 is on day 80-something of an unrelenting headache. Gram positive cocci were also found in a blood culture last week, but we are re-running test to confirm since I don't think phlebotomist cleaned her skin long enough to prevent contaminating the sample. If the blood is positive for the same bacteria in the sinuses, what does this mean? DD was prophylactically started on Rifampin and Doxy yesterday. For those of you who have gone down the Lyme/sinus/mold/MARCoNS path, can you give me your opinion on finding gram positive cocci (LLMD says it's most likely staph) and WBCs in the sinuses?
  12. 4.5 years ago we originally embarked on our journey treating chronic debilitating symptoms that no mainstream doctor could link together. I was so frustrated because at that time my daughter was chronically physically ill and missing a lot of school and my son was close to institutionalization due to extreme psychiatric symptoms. I was being treated for anxiety and my husband was angry all the time. All of us had GI issues and both my husband and I had precancerous colon polyps removed in our 30's. I was desperate for help, which led me to an off-the-beaten path holistic doctor that took one look at everyone in my family and firmly told us that we should eliminate gluten and dairy. I figured I had nothing to lose, so we went cold turkey and within weeks we saw improvement in some symptoms. It was not a panacea by any means, but it certainly seemed to take the burden off of our immune systems - we discovered 1 year later that we were dealing with PANS, Lyme & Co. When we first met our LLMD she recommended a GF/CF too to take the load of the immune system. I was so relieved that we had already been GF/CF by then because the treatment protocols for Lyme & Co were so overwhelming - I couldn't imagine managing a new diet and this at the same time. The improvement we noticed within weeks of eliminating gluten and dairy was immediate reduction in GI symptoms - no more gas, bloating, diarrhea, constipation. I believe this was the beginning of our healing process. My husband and I both have colonoscopies every 3 years and since eliminating gluten/dairy we no longer produce polyps. The diet certainly isn't easy in the beginning, but if you try it, I highly recommend that you do it 100% for a few months to see if it helps. A little gluten here and there is just as bad as a lot of gluten all the time if you are looking to reduce inflammation. If you want a sample of a day's menu for my family, PM me and I will send you one and include some of our favorite GF brands.
  13. DS16 is compound heterozygous MTHFR. LLMD has him supplementing with sublingual compounded methyl B12 daily (been supplementing for 2.5 yrs). He also takes 2 Thorne Methyl-Guard Plus capsules QD. His serum B12 level is >1999 (normal range is 211-946). I still don't understand the whole methylation issue - we just follow doctor's orders and supplement. I have 2 questions: 1) Could the serum B12 be elevated from too much supplementation? 2) Is the level high because he does not absorb it? Thanks in advance for any insight you may have.
  14. Read my signature line. We've been aggressively treating Lyme & Co and lots of other issues for almost 3 years now. When we started this journey in 2011 my son's CD57 was 14. His CD57 is now 6. Seriously? LLMD said that Lyme is not the only thing that can suppress this - Babesia can cause low CD57 as well. What about mold? Can mold suppress it as well? So frustrated....
  15. Doc only said he would leave adenoids if they didn't appear to be diseased when he looks in there during surgery. I would think they could look healthy but be harboring all sorts of pathogens. I really want them removed just in case - perhaps I will ask our LLMD to request this.
  16. For those of you whose children have had T&A removed for PANDAS/PANS.... Anyone had success with just removal of tonsils? The ENT that is willing to remove tonsils based on my son's history of strep and PANDAS says that he generally doesn't remove adenoids unless they look diseased when he is doing the tonsillectomy. This doc gets lots of referrals from Dr. L. Should I press the doc and ask him to remove both T&A? Or have some of you seen improvement with just the tonsillectomy? My son is currently not in a flare - and hasn't had one in a long time - but he is still under aggressive treatment for infections and CVID. After 3 years on antibiotics and many other meds (1 year of orals and 2 yrs IV) and supplements plus monthly HD-IVIG, he is still has high ASO and Anti-DNase B and streptozyme.
  17. Wow. I never thought of D being an issue. Almost 3 years ago when we started this journey, our LLMD recommended supplementing with 5000 iu D3/day and we have be doing this ever since. Can someone comment on the D possibly feeding Lyme, Babesia, etc (it was mentioned in one of the posts here)? We cannot eradicate Babesia and I'm getting extremely frustrated. Maybe this is a clue.
  18. I neglected to mention that right before she developed the headache she visited a friend's house that we suspect has mold. She had not been to the friend's house since January and after that visit she developed an unrelenting headache which led to a CT scan which showed sinusitis in the sphenoid and this led to sinus surgery in March. After the sinus surgery, the headache resolved. ENT did a CT scan again this time around and there is no sinusitis so he referred us to a neurologist. If the headache was caused by mold, how do you resolve this? She is back on cholestyramine, but so far it's not helping. Could the headache be from inflammation from the mold exposure that wouldn't show up on any imaging tests? She is pretty sure that she is sensitive to corn, but can't seem to avoid it completely since we are GF. I probably need to insist on removing it from her diet. We have not moved yet, unfortunately. We were unable to sell our home and we will relist it on March 1. Ugh.
  19. DD14 for 2.5+ yrs has been treated for Babesia, Bartonella, viruses, MTHFR, parasites, mold, yeast, etc. You name it - we've tried it. DD14 has made huge progress on treatment but still deals with residual symptoms, so we keep treating. 45 days ago she developed an unrelenting headache. She has dealt with headaches before, but none that lasted this long. Nothing relieves the pain and she rates it at a "7." She has a high pain tolerance and rarely complains about her symptoms. We have tried ibuprofen, Aleve, heat, cold, Immitrex, Flexeril, chiropractic, aspirin. Today after we met a neurologist who completely dismissed her and was basically an donkey's butt about her Babesia tx (even though I had supporting positive test results), I resorted to giving her Tylenol. We have resisted Tylenol because it depletes the body of glutathione. But I figured we had nothing to lose to see if it would work and figured the benefits would outweigh the risks. Tylenol gave no pain relief. We left the doc's office with an order for an MRI and instructions from Dr. Butt for her to return to competitive swimming and to ask the LLMD to stop treating Babesia - I think he thought she was seeking attention. Seriously??? I have spent the last hour ranting....I am so angry. We often hit brick walls when we see arrogant specialists. It just makes me love my LLMD all the more - she is one of the few people that gets it. Anyone have experience with a headache that lasted this long?
  20. 3bmom, Thank you for putting all of that info in one place. I subscribe to mercola.com and every day I read about something that is affecting our food and ultimately our health and I'm frightened. Every time I waiver in the grocery store over $7/lb organic chicken breast or $4/lb organic apples, I think of my children and how sick they are and how we have spent almost 3 years and 10's of thousands of dollars on medicines and supplements trying to regain their health. Sure, I'm going broke trying to put good food on the table, but it's pay now or pay more later in my book.
  21. I think with many of our PANS/PANDAS kids, it is like the perfect storm: many things working together leading to immune dysfunction. Food for thought....the abx link early in life also puts gut flora out of whack and poor gut flora leads to a compromised immune system. If I had a do-over, I would have paid a lot more attention to what I ate during my pregnancy and when I breastfed and I would have taken high doses of probiotics. Poor gut flora can also affect a baby during the birthing process since the baby gets covered in a mother's good bacteria as they pass through the birth canal. Again, if the mother's flora is compromised from abx, this effects baby as well.
  22. I'm praying for your son and your family. Hang in there.
  23. I'm starting to think that Myco P is impossible to irradicate. Everyone in my family has been treated aggressively with multiple abx (sometimes combo abx) for the last 2.5+ years and we all still have high Myco P. Both of my children have been on IV abx for 2 years (9 months of orals before this) and my DH and I have been on orals the entire tx time.
  24. Insurance has not (cross my fingers) fussed or balked at any tx the doc has ordered, including the insertion of central IV lines. We happen to be very fortunate to have insurance in one of the few states that mandates insurance coverage for tick-borne illnesses.
  25. Ophelia... I cannot remember your history, but have you been treated for Lyme & Co? My daughter has dealt with bladder "spasms" (for lack of a better word) just like what you describe. She would take Urelle when she was symptomatic. But our LLMD said it was caused by Bartonella or Babesia - can't remember which one.. The spasms went away when she was treated for Bart and Babs. Also our LLMD just told me about another patient of her that has been dx wih IC for many years, has had multiple surgeries and had no relief from any treatment - but when she was finally treated for Babesia, her bladder issues calmed down. When the patient stops Babesia tx, the bladder symptoms return.
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