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  1. I rarely visit anymore but read this and wanted to share my son's path. His tsh is low, but T3 and T4 have never been elevated. He had a radioactive iodine uptake scan and ultrasound and his uptake was increased so he was diagnosed with Graves disease. His antibodies weren't tested until after he already had IVIG and are positive but interpreted with caution because of his treatment. So an uptake may be the only way to definitively diagnose, however, my son's endocrinologist will not treat unless his T3 or T4 become elevated, which so far they have not. As for Vitamin D you need to take 8,000iu at least a day with values that low and monitor with bloodwork. Another supplement that helps with his thyroid is leucovorin, which is high dose Rx folinic acid. PM me if you need more info!
  2. We do HD IVIG every 21 days....every case is different. You can definitely tell when his infusion is wearing off starting at about 2 1/2 weeks.
  3. You absolutely have to be on mB-12 while taking folinic so that could be the issue if you were not.
  4. I can share my observations that (in people treating their children) most people are going very low and slow. Start with 1/8th to 1/4 dose (if sensitive) only once a day, then add same small dose for the second time and alternate raising back and forth those two times a day. My son is one of the people who doesn't find it particularly calming, even though it is supposed to be and I have heard this story in others. For some, it is a miracle but even some of them had to go slow. My son couldn't take it past noon at first and now can take up until 1 without sleep disturbance. You may need to divide your dose three times a day, but my son's reaction is very dose dependent. Higher isn't better here for him, and he usually can take massive amounts of a med. I would say it puts him in a better mood, he is more even, and he is finally able to remember what happened at school, the songs they sing and the routine. My son is not really able to articulate his OCD, I can just tell when it's better and it is. I wish you luck and hope you find a good dose. Some meds aren't for everyone. GABA, taurine, and magnesium are all calming for my son.
  5. Namenda increases cognition, memory and induces a better mood in my son. Decreases OCD a bit. It is a med that needs to be ramped up slowly to find the right dosing schedule and amount. We found out my son will not sleep if he gets his second dose after 12:30 PM. I am finding that the more IVIGs that he gets, the less Namenda he needs. Currently tweaking that dose and he may only need it once a day vs. twice, whereas when he first started it you knew when the first dose was wearing off as he would start to get mean again.
  6. I pray to God for all of us to handle our suffering well. That we don't just survive doctors firing us or us firing them, husbands abandoning us or us leaving them, governmental agencies examining us or us grilling them for help...but we arise stronger and better able to fight for that which calls deepest in a mother's heart. Only that her child's heart beats as fast, passionate, and at peace as she wishes hers would even in the darkest of moments when hope seems to be slowly slurping down the dirty bathtub drain. You are strong. You do have everything you need. Those that show up and do what no one else will do, those are the ones who's suffering is rewarded. Not with cars or hunky husbands or reality shows, but a deep connection with the universe, compassion and above all the knowingness that when called you rose and never gave up fighting until the bitter end. I am listening to some great meditation cds from the library-guided meditations for difficult times that I am finding very helpful and centering. You were made for this. Penny
  7. I have heard more bad things when kids use HBOT that have PANDAS (plus autism) than good. That being said, everyone has their own experience and some see great gains from it.
  8. Sorry to hear about more strep in your house! I am sure you are excited school is out for at least the exposure factor. Yes, health and safety come first so I understand when a parent's gotta do what a parent's gotta do. We did 10 days of Rifampin and they were heaven sent. Tomorrow is the day it all came to a head one year ago and this month seems like the closest to baseline for as long as he has lasted in between IVIGs. I truly hope the best for your family and hope you get it figured out how to keep strep at bay. Penny
  9. I am so glad that you are getting relief from daily ibuprofen! I have had a Dr. tell me you can use it daily for years. For milk thistle you can try 1/2 the adult dose which ranges from 150 to 300mg per day. I have not noted it to be a supplement you have to ramp up dosage on or even notice a difference in anything, it is purely supportive to the liver. Might I ask how you are using rifampin? we did one 10 day course and it was heaven (added to pen vk). Contemplating boosting monthly but wasn't sure how others are using it?
  10. also read the vaccine inserts for the product...some say contraindications include neurological conditions which are progressive or which have not been stabilized.
  11. Technology is not my friend today...I have been up since 2 AM with my son!
  12. Try the National Vaccine Information Center Generation Rescue is the Jenny McCarthy organization See if TACA - Talk About Curing Autism has a chapter in your state Anyone reading this, remember this mom's crisis and know that no matter what you think about vaccines, you KNOW you live in America and no one should decide about your family's health but you. You should support and fight for this right. Nothing is worse than feeling powerless. You always have a choice to not enroll your child in school, camp, etc. This is another way to put pressure on government-take away the money they would make off educating your child and do it yourself. Band together with other moms and demand a free and appropriate education for your child. How can it be free and appropriate if there are any demands or limits placed upon their attendance there? What if every family had to have one working parent quit their job, which generated tax revenue, to stay home and educate their child and then ends up on public assistance? Maybe these thoughts would encourage your state rep if you insinuate a plan to approach the media? These are my thoughts. They are not even as angry as they used to be, but I wish you luck in finding away to make decisions for your family that you see fit.
  13. Neuroprotek is a supplement aimed at reducing cytokines and addressing BBB permeability.
  14. I think the first time they try to minimize interventions to determine what is the least they can get away with in case this becomes a monthly treatment. You might request the orders for ibuprofen are changed and tylenol removed to save time, otherwise you could be waiting around on the day of. That being said the first time I would hydrate in the car on the way there, but not too much. This makes finding a vein easier if your child has this problem. Then as you already know stay hydrated throughout the day(s). I think it is pretty common to use ibuprofen (yes please no tylenol for us either!) and benadryl at a minimum as premeds. I would recommend medicating with both for at least 3 days (including nights) every 6 hours. The benadryl acts as an anti nausea med if you don't have zofran. We did not do this the first time and he puked and had terrible headaches. Since he discovers an amazing appetite during the infusion this was not pretty but I am not complaining. I love how much he eats without fighting. Sometimes I think I'm raising and anorexic ballerina and not a growing boy! As my son has had more and more infusions (we are now on a 2 day every 21 days schedule) our routine is like this: -hydrate on way to hospital -benadryl, ibuprofen, zofran, steroid pre meds on both days -every 6 hours for ibuprofen and zofran for three days. Now that we have the steroid we can stop at that point. We were needing ibuprofen for a week + before this. My son HATES getting poked. If I would have had any idea we would need to do so many IVIGs I would not have started getting him a new lego set each time he was "brave". Can you say bribery backfire? But, you might either take the IV out at the end of the first day and put a new one in the next day or have a conversation about it and arrange a reward if he keeps it in. Good luck I hope you see lots of great results and NO side effects!
  15. I have been thinking about this post for a while. I think all I can do is to share my experience and insights in my son's case. This may or may not apply to others. I am still trying to understand the ins and outs of it all. I think the reason we may not know the answer for sure is that IF you have returned to normal with antibiotics then you aren't pursuing IVIG and then if you don't get results (or lasting results) with IVIG there are so many factors that may be contributing: 1- How long your child had antibodies circulating before they got treatment? My son only had a 10 day course of amoxicillin then had to wait 3 months before IVIG. How long had he had strep throat or how many times this was going on is so unclear in his case since he has other developmental issues. 2- Is it that the current antibiotic hasn't effectively treated the infection that lead to PANDAS or are there other infections? My son is on pen vk and it wasn't until we used a mega antibiotic (rifampin), even after 7 IVIGs, that he returned 100% to baseline. Was the strep not controlled? Did he have other infections? We don't know because we didn't test for them (and now the tests would be unreliable due to IVIG). We just did IVIG #8 after rifampin and we will see if that cleared enough of whatever infection it killed off to allow the IVIG to hold this time. If not we will fight for stronger prophylactic antibiotic. 3- Is the infection hiding somewhere and that is why you can't get at it with the antibiotics? Thus the reason we removed his tonsils and adenoids. You can search on here regarding intracellular strep. 4-Is he constantly being re-exposed or infected by someone in his life? Well we cultured the entire family and cultured and treated the dog to be safe. He is not going to school anymore. Short of a bubble what else can you do? 5-Is the body still building antibodies that are attacking the brain because the BBB is left open? Even once we rid the body of infection, the antibodies seem to continue to attack the brain since it is always there. I have no idea what to do about that one. My understanding is that even with PEX if you remove the antibodies the B cells have a memory and will just start manufacturing antibodies again. Obviously this doesn't always happen or PEX wouldn't be successful. Again, I'm not expert this is just my understanding of what I've read and been told. So, what if we kill off the B cells with chemo drugs? I know, sounds drastic and scary, but sometimes life turns drastic and scary. So with all those factors and options, do I think IVIG is a waste if there is an ongoing infection? It seems to me that IVIG is almost diagnostic in its usefulness because if it works and holds, then you have your answer as to whether there were any other contributing factors. You never know if you are going to be the one to win the big prize of one and done. You can eliminate as many of the potential antagonists to IVIG success above and guess the likelihood of success if your child wasn't affected long before treatment or neurotypical before it hit him/her. All I can say is it seems in my son's case he had all of this stacked against him and he still gets a benefit from the IVIGs, and now even more from strong antibiotics. The effects just haven't lasted longer than 21 days so far. Do I think it is a waste to get to see him well for the time it does last? Not me, but I'm not like most people and he isn't like most cases. It will be one year next month and if we don't see results that hold by the next IVIG or, as needed a new antibiotic, I think a different route is in order. I hope you find your answer on the quickest path to recovery with the least amount of resistance. You just never know ahead of time what all it will take to get your child back. If I knew then what I know now I would have done more testing at least to see what other infections we could potentially be fighting in addition to the strep, but I don't regret pursuing any and all treatment options. During this treatment we have seen aspects of his development that were delayed completely normalize and that is worth everything.
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