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Everything posted by mdmom

  1. Just got the EOB from insurance for my DS15's first IVIG. It was administered at home over 2 days with a nurse here for 6 hours each day. Total cost was $8916.00 for 100g total of Gammaked.
  2. 750 mg of GABA before bedtime works wonders for me. I also dose B-12 injections 3x/week. I have been in bad places with anxiety when my son was at his worst 6 years ago and I had to take an SSRI for 2 years. Be good to yourself. Get out and do something for yourself everyday - even if it means getting a cup of tea or coffee at the drive-thru and sitting in your car with music or something to read. Hang in there.
  3. The following is a link to a comparison chart of Ig products: http://www.bdipharma.com/Comparison%20Chart%202012/IVIG.pdf Octagam is stabilized with sugar (maltose), so it is harder on the kidneys. It also has a higher concentration of IgA, so if your child has low IgA or worse, makes antibodies to IgA, this is not an ideal product. Octagam is less expensive, which is why some docs switch to it. Others may chime in here on this topic, but I believe Gamunex-C (and Gammaked b/c it is identical) is the choice Ig product for neurological autoimmune disorders. Not sure why this is,
  4. Dr. T is great. Many on this forum including myself have him as a part of their child's treatment team. However, I stand firm on this: You need to find a doctor, preferably an LLMD, that will look more closely at underlying infections and develop an aggressive, yet methodical approach to treatment. You have been treating since November with a lot of different things; however, dealing with some of the infections your son has takes time and patience. Mycoplasma is particularly hard to treat. Also, have you considered yeast, detox, methylation issues. IVIG could help over time, but u
  5. Both of my children have central IV lines (one has a PORT and one has a Hickman). Both have been on IV therapy for one year now. Feel free to PM me if you would like more information.
  6. Thank you for posting this news about your son. I've been toying with the idea of asking for an MRI for my son who went undiagnosed and thus untreated for a very long time. What are the implications of a lesion on the basal ganglia?
  7. My DH and myself under the guidance of our LLMD were treated for Lyme, Bartonella and Babesia since June 2011. We chose to treat even though we were not extremely symptomatic based on positive Lyme results (on alternative testing), the fact that our daughter has definitive diagnoses of Bartonella and WA-1 Babesia, and the fact that our son has PANS and Common Variable Immune Deficiency. LLMD said that particularly with Babesia, Lyme docs are finding that no one in the house gets well unless everyone is treated (we even had the pets treated). Babesia treatment was the longest (9 months for
  8. astridrobi - First of all let me say that you are on the right path just by being a member of this forum. My advice: Read, read, read. I have learned so much from the other members here. When someone shares a therapy or med or doctor that might be useful, I try to gather all the info I can about suggested things from the internet. Some other suggestions: 1)Keep a log of symptoms, interventions, etc. 2)Reassure your daughter that there are other children/teens out there struggling like her - if you think it would help, have her read some of the posts on this forum 3)Ditch your pedi
  9. My DS15 has been homebound since April 2011. Our school system provides him with a teacher through what our state calls "Home & Hospital Instruction." Teacher comes to the home 10 hours per week. He misses seeing friends throughout the week, but it has been a good decision to keep him home while he heals from multiple infections and we get his immune system stabilized. Reducing his exposure to new infections has been key for him. Teacher and friends know not to come to our house if they are sick.
  10. It’s been a beautiful, soft, snowy day here in Maine, and my house is resting in the middle of a winter wonderland. But it is with a heavy heart that I tell you Boston Children's Hospital has snatched two more children from their medically attentive and appropriate parents. The hospital had them taken into the state's "emergency" custody because it does not agree with the children's diagnoses made by physicians at Tufts. This time it is Mitochondrial Disease. Both children - one five years old and the other fourteen - were under the care of a team at Tuft's Floating Hospital. The c
  11. This is exactly the reason we currently "deworming" our 15 year old son and have dewormed his sister in the past. My DH and myself need to do this soon as well. Our LLMD follows Klinghardt's protocol.
  12. Under the video screen you will see links to Part 2 and Part 3. Tomatoes and potatoes are considered "nightshade" vegetables that apparently can cause symptoms. We don't avoid these, but it was suggested that my daughter and I avoid them because we both have hypothyroidism (a naturopath recommended this). We rely on potatoes for some normalcy in our diet because we eat GF/CF. Here's an explanation on nightshades: http://www.naturalnews.com/027978_nightshade_vegetables.html Not sure about the cherry juice.
  13. The family featured in the video was also in a recently posted article in the NY Times. Leaky gut is nothing new to most of us, but it's sure nice to see it making into mainstream media http://www.doctoroz.com/videos/medical-mystery-solved-pt-1
  14. I've read some recent posts of people calling their insurance companies about IVIG for PANDAS. Please, learn from my mistake: DO NOT CALL YOUR INSURANCE COMPANY AND MENTION PANDAS - IT WILL REMAIN ON FILE THAT YOU CALLED IN It is also worth noting that there is no diagnosis code for PANDAS. Most insurance companies are not covering IVIG for PANDAS. Some doctors are successful at getting coverage for some patients using alternate diagnosis codes(e.g. post-infectious enchephalitis). Others are getting IVIG covered because of a Primary Immune Deficiency diagnosis. Mentioning PA
  15. I know our LLMD suspects heavy metals with our son, but she has told me repeatedly that he is too fragile for chelation, as it can be a shock to the system. It's so hard knowing when to address each thing. We just started monthly IVIG and he's responding well - I believe it's because we've worked so diligently at knocking down his infection load. Daughter is a whole other issue, but clearly has more going on than infections. Thanks for giving more ideas to pursue. Sometimes you just hit a plateau and it's good to have a new plan.
  16. SF Mom- Thank you for the advice. I really feel like my children's progress has been slow and I think you are correct in suggesting that I pursue additional things like mold and heavy metals. DS has been on daily IV treatments since Jan 2012 and DD has been doing the same IV treatments since March 2012. It seems like we are going nowhere. We will see the LLMD next week and she may know this, but can you tell me what tests to order to check for heavy metals? Also, when you refer to testing for mold sensitivity and inflammation, are you referring to the tests that Shoemaker outlines on
  17. I am really stumped by the diagnosis myself, as this is what we have treated with since May 2011: DD 13 and DS15: daily Flucanozole (oral), 4 tabs Nystatin daily; then we switched to IV Fluconazole 3x week and oral on alternating days; for the last 8 months they have been on Voriconazole (VFend) IV and oral on alternating days + Nystatin DH and myself: daily Fluconazole, Nystatin then switched to Nizarol for a short time, then back to Fluconazole with Nystatin. We also used Mycelex lozenges occasionally. So I am left with wondering if we have a mold problem. Yes, it's likely
  18. The IVIG dose that addresses autoimmune issues is very high. Usually the dose is 2g of IG per 1 kg of body weight. The reason for the high dose is that it somehow regulates the immune system by flushing out the bad (or "auto" or "self") antibodies that are attacking the brain - the is the theory, at least. Subcutaneous IG is administered by inserting needles under the skin and the medicine is slowly infused under the skin and eventually absorbed by the body. High doses cannot be administered this way. I am unaware of injectable IG.
  19. Good luck at Rothman. We were there in Dec for 3 weeks. Best thing by far that we've done for our son. Dr. R is the best. He's so good that we have decided not to find a local therapist and instead go back to Dr. R for OCD "tune-ups" when needed. It's worth the travel expense. Keep us posted!
  20. Nancy, Look at my recent post about my daughter's fungal ball diagnosis. She is non-PANS but has Babesia, Lyme and Bartonella and her recovery has been slow despite aggressive treatment from many angles (daily IV meds, MTHFR supps, detox including IV glutathione, cholestyramine, muscle testing - we've done a lot). Surgery isn't until March 8 to remove the ball but I'm curious to see if removing it will propel her healing forward. My point is this - get the CT scan so someone can see what's going on in her sinuses. My daughter's sphenoid sinus is completely clogged. We have been using
  21. WBC count is just slightly low. Abx can suppress production of WBC. But I am wondering if the LLMD is considering Babesia? Babesia notoriously lowers WBC counts. Two clinical signs of Babesia on bloodwork are low WBC and elevated liver enzymes.
  22. Also posted on PANDAS board... DD13 (non-PANDAS kid) has had a headache for 37 consecutive days. CT scan showed cloudy sphenoid sinus, which is the one located in the center of the head. ENT visit today was enlightening. Instead of assuming the sinusitis is caused by bacteria as most docs do, the doc quickly diagnosed my daughter with a fungal ball (a.k.a. mycetoma) that will have to be removed surgically. Considering all the talk of sinuses lately on this board, I thought this might be of interest to others out there dealing with chronic sinus issues. I'm thinking it is a huge piece
  23. Will post on Lyme board too... DD13 (non-PANDAS kid) has had a headache for 37 consecutive days. CT scan showed cloudy sphenoid sinus, which is the one located in the center of the head. ENT visit today was enlightening. Instead of assuming the sinusitis is caused by bacteria as most docs do, the doc quickly diagnosed my daughter with a fungal ball (a.k.a. mycetoma) that will have to be removed surgically. Considering all the talk of sinuses lately on this board, I thought this might be of interest to others out there dealing with chronic sinus issues.
  24. I (mom) have Hashimoto's and my son has PANDAS. My friend's son has PANDAS as well and she had Graves disease that was treated during her pregnancy with him. So yes, the maternal autoimmune theory applies to both of these PANDAS cases.
  25. Dr. T told us to stay away from Strep Therm. too. My DS15 is dairy-free, so he would not get this through food anyway. However, it is a strain in his probiotics, VSL#3. He does not seem bothered by it in the probiotics and he is the type of PANS/PANDAS kid that reacts to the littlest things (like being in the presence of someone who is ill even though he does not get the illness himself).
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