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nicklemama

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Everything posted by nicklemama

  1. Florastor has been shown to fight C Diff. We use Florastor, Klaire Labs Thera Detoxification and Organic 3's Gut Pro.
  2. It takes a while for the lamictal to work. Its effects are not immediately seen. You have to slowly work up to a therapeutic dose. I'd give it more time to see if its going to work for you. We did a much slower tapering up to get to therapeutic dosing of 100mg a day. The schedule you have is standard.
  3. We have a high deductible BCBS PPO. It works like a regular 80/20 BCBS policy. We can go anywhere to anyone who accepts BCBS in the US. The family deductible is $2500. The out of pocket max is $5300 for the plan yr. We switched to this from an HMO during open enrollment right after DS was diagnosed w/ PANDAS. We've never looked back. The HMO would have covered very little and only if my ped would write for the referral. I could only get 8 days worth of azith and 10 days of augmentin at a time. Now, I can get 30 days of anything at a time. DS has a biomed doctor who does not accept insurance but he files for us and we get 60% back from insurance. I have a doctor that does not accept insurance but gives me the paperwork to file and I get 60% back from those visits, as well. Those also count toward our deductible and out of pocket max. We've taken DS out of state to PANDAS docs and they were covered. IVIG was covered out of state. We have no prescription plan, per se. Our prescription costs go towards deductible and out of pocket max. We do pay the negotiated agreement cost from participating pharmacies. Try and gather all the info you can on what it covers. Each policy is different. My Dh's employer self insures, so they set the rules rather than the insurance company. We hit the out of pocket max last yr in May after IVIG. We paid no other costs for health care accepting our insurance for the rest of the year. We hit our deductible this yr in April but haven't gotten to the out of pocket max yet. We set up a Health Savings Account. Dh's employer put $500 in it last yr. This yr it will be $750 and we contributed quite a bit to it. Its pretax and rolls over if you don't use it all in the plan yr. You can use it for any medical cost, including glasses, braces, dental, etc... This policy actually has lower monthly costs than choosing the HMO offered by his employer. The most critical part is reading as much of the info and fine print as you can. We had no idea IVIG would be covered. We did it, paid up front and were reimbursed.
  4. My DS was so "bipolarish" a neuropsychologist dx'd him. Attacking us, hiding in dark places, horrible mood in the evening. I can relate to this. My DS also never had strep that we know of. This all started suddenly, after a FluMist vax at age 5y9mo. He was diagnosed PANDAS a year nearly to the day later. Abx and IVIG have stripped him of these behaviors. He still has some lingering behaviors but they are milder, in comparison to what we and he suffered prior to dx. He did have a couple of colds that lingered into ear infections prior to all this. PANDAS docs think he had undiagnosed strep. He has not had a known strep infection since dx either. Edited to add, my DS has been found to have MTHFR mutations, as well, but treatment for PANDAS got him better. We have been treating for MTHFR since Mar and have seen some improvement, but he got sick this summer and some behaviors have returned, so I cannot say MTHFR treatment has helped w/ everything.
  5. This is nothing more than a description of behavior much like ODD and IED (Intermittent Explosive Disorder). It doesn't really get to the heart of what the problem actually is. My DS was diagnosed w/ IED by a psychiatrist. His therapist told me its really nothing more than a description of behavior. This new diagnosis really fits a lot of PANDAS/PANS kids. Until we have a verified and accepted therapy, having an ICD code does us no good and may, in fact work against us for IVIG. Currently, doctors can code things like post infectious encephalopathy and immune dysfunctions for some PANDAS kids. If we have an ICD code w/out an accepted therapy, those doctors will have to code for PANDAS and it may interfer w/ a lot of kids being able to have their insurance pay for IVIG. I am less worried about getting an ICD code than I am about getting a verified therapy to treat PANDAS. The bigger worry is getting a wrong diagnosis like bipolar, ODD, IED, or the new Disruptive Mood Dysregulation Disorder.
  6. Klaire Labs has Therabiotic Detoxification, which has 50+billion and three strains, no strep, no gluten. DS takes that. I ordered Organic 3's GutPRO and have been taking it myself. Its formulated for kids on the spectrum. I have the powdered form, which has about 7 strains, no strep, no gluten and you can use however many billion you want. I bought the measuring spoons for it.
  7. I would recommend seeing a biomed/alternative med doctor, doing the testing and see what pops up. We did that back in Mar with DS. He is not methylating properly, has a food yeast sensitivity, has some vitamins/minerals totally out of whack. Found out he is compound heterozygous MTHFR. He was tested by a allergist and found out he has some significant allergies and is now on Claritin. Doing supplements, B12 shots and going forward. Have seen further progress but it does not stop flare ups from exposure.
  8. It can't be meat, lol. Its very hard to get him to eat meat. I'm going to eliminate the toothpaste and see where that leads. May add some lysine. We see his biomed doc on Thurs. DS is compound heterozygous MTHFR. He does not methylate properly.
  9. Not at all. My DS has NEVER tested positive for anything. Not strep, not mycoplasma, not lyme, nothing. Not even a positive throat swab. He most definitely has PANDAS, as confirmed by Dr T and Dr K.
  10. Congrats! What a great story and something to hold onto for the rest of our kids. Our DS grew very little for about 1.5yrs. We went back to see Dr K at the 1yr post IVIG mark and he had gained 8lbs and grew several inches in the year. He's still thin. Dr K was very quick to point out his growth and had a big smile.
  11. He came home from school today and he has nasal congestion, despite having taken a 10mg Claritin this morning and Flonase. His temp was 99.3 thirty min after taking motrin. I think he's got a cold. He has allergies and takes claritin every day and has since Mar. The canker sores may be a part of what appears to be a cold.
  12. Everyone is such a wealth of info and experience. I did start a new toothpaste. He uses Crest Kids. However, his teeth are yellow from two years of augmentin, so I bought Arm and Hammer adult Peroxi Care and it has whitened them up using it each morning. I've been using it for about a month. I can't remember if I started it before or after the canker sores. I think I actually started it before, so I think I will stop using it and see what happens.
  13. Thanks for the info and advice. I've been putting Milk of Magnesia on them, plus Anbesol. Also started up the Motrin. He's been in a flare but it was declining. He was also exposed to herpes zoster this weekend. His little friend spent the night Fri nite, then his herpes zoster flared up on Sat, so he's on acyclovir. He has an appt on Thurs, by coincidence, so I'll inquire about acyclovir or another antiviral.
  14. I'd love to hear from anyone who's kids are getting canker sores. DS8 got his first one this summer in late August. Now here we are in Sept and he had two that started on Monday. Friday, he informs me has another one forming and when I look I actually see two more. So the first two are getting smaller and going away and now two more have popped up. I've been putting Milk of Magnesia on them and Anbesol for pain. He's been in a flare since late June that started w/ tics and adventitious movements. I haven't seen any tics in two weeks and then I saw one yesterday and one today.
  15. Mar- DS had 7 months of treatment dose abx, then IVIG. For the last 16 months he's been on prophylactic dose abx. It does not keep him from having flares. However, he has never gone back to the most horrible state he was in before treatment(knock on wood).
  16. To add onto to what MomWithOCDSon said, my own personal doctor told me the flu vax is made for who are fragile and/or with conditions that would warrant a flu vax. The gov't makes the pharmaceutical companies produce the vax's. Its a money losing proposition to make flu vax only for the few, so they advertise the ###### out of it and convince doctors to recommend it to everyone so they can break even or make a buck or two. Flu shots are really not intended for the healthy.
  17. If you choose to go this route, make sure you do NOT get the nasal flu mist. It is a live virus you will shed for up to 3 weeks. We do not get flu shots since a flu mist vax set off my DS's PANDAS.
  18. If he swallowed some of the bath water, it might give him diarrhea. If you read the package directions, there is a formula to mix and give for constipation.
  19. You need to find a biomedical, alternative medicine or DAN doctor. They understand how to treat high copper. There are supplements and chelation. The are the types of doctors who know most about it. My DS has high copper and is being treated by a biomedical doctor. They also will order the testing. Edited to add: They are located in your area. You can find recommendations from families with kids that are on the spectrum.
  20. Well, I'll have to disagree with your pediatrician about the rage and tics. The rage was the worst symptom of PANDAS and its what pushed us to put our son on lamictal. She is right about psychiatrists sometimes wanting to push one drug after another. We weaned our son off lamictal after IVIG. Dr K felt we wouldn't know what was due to healing and what was due to the med. He had us wait 3 months post IVIG. We also wanted DS off lamictal *IF* he didn't need it. It was a good decision for us. I never regretted for a minute putting him on it. It gave us and him some relief from his raging anger.
  21. I echo that these are PANDAS behaviors. They are sensory related. My DS's first diagnosis was Sensory Processing Disorder. He was in OT for the SPD. That was well before we figured out the PANDAS. Treatment for PANDAS has diminished the behaviors.
  22. My DS was on lamictal for about 1.5yrs. It helped with his anger and explosions. He was put on it before we knew about PANDAS. We started weaning him off it last August. He took his last dose in Dec 2011.
  23. DS has had one IVIG in Chicago 17 months ago. He is much better but he's not 100%. He had a flare this summer that involved ticcing. He was given a steroid burst and treatment dose abx that helped. Dr K told us there is about a 25% chance he'll need IVIG #2. Meanwhile, we just got back from a week in Orlando which consisted of 2 days in Disney and 2 days at Universal. A year ago or so, this would have been unthinkable. Putting DS on a plane would have been unthinkable. Still, he flares several times a year to various exposures. You have to look at IVIG for the long haul. Its not an immediate curative. One may do it or not. You cannot say w/ any certainty as each child is different.
  24. MomWithOCDSon- You have given me a good chuckle tonight, lol! I am the resident nut around here. I am certain my friends think I am the one who needs help judging by how many pills my DS takes in a day's time!!!! DS has been giving me some push back lately on his pills. He takes them but complains about it sometimes and has started asking me how long he has to take "all these pills". I answer "when your PANDAS goes away". There are very few things in our house that are non negotiable. One is taking a bath, two is brushing your teeth and three is taking your meds. Having a child with PANDAS has really impacted what I hold as important and how I judge others who's children are acting out.
  25. It would be worth it if you could get her to swallow pills. DS, at age 6, was very motivated when he figured out he wouldn't taste the medicine any more. My plan was to start out w/ M&M's. I came home w/ azith pills from the pharmacy. I got out the M&M's and DS announced he didn't need practice, he knew he could do it. Swallowed the azith right down and we've never looked back. I'd give it a good try. He now takes a mountain load of pills each day. Honestly, I don't know how he's hungry for breakfast after taking all his morning pills.
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