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parents4eyes

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  7. Please be careful with ibuprofen

    in PANS / PANDAS (Lyme included)

    Posted

    One other question....what are some other natural anti inflammatories? I asked Dr. B about using fish oil and he said it wouldn't hurt but it would take an awful lot of it to get to the anti-inflammatory levels needed.

     

    Thanks again,

    Kara

    Yes, it does take a lot and can add up $, but it does work. Both my childrens' blood tests show they are very anti-inflammatory. I should note my daughter was on these before pandas came about, but who knows how much worse she would have been. These are dosages give since about 8 years 65 lbs or so. Start off with half this to check for tolerance.

    turmericforce by new chapter 4+ capsules spread out per day (could probably use any curcumin product. This is considered a very high dose.)

    total EFA+DHA fish oil = 4000mg+ spread out through the day (make sure it is low in omega6 high in omega3)

    BCQ by vital nutrients 2 caps 3x day (can mix in food, applesauce)

    zyflamend (comes in small easycaps)1/2 adult dosage until 11 or 12 years then adult dosage.

  8. Please be careful with ibuprofen

    in PANS / PANDAS (Lyme included)

    Posted · Edited by parents4eyes

    yes, I agree. Use as little as possible, and for short term (for me that means a few days). Also, there is a least one member of the forum who has had hearing loss (I'm not sure if it is permanent) do to the use of ibuprophin and azithromycin.

    Most of the loss was regained with a short (month) course of steroids. It was naproxen (not ibuprofen), but this can happen with any NSAID (both are NSAIDs). She was on very high doses for about a month. Loss is an extremely rare side effect. Nevertheless, these are ototoxic meds. I should note that the other possibility for the loss could have been autoimmune disease, but she has had that for years and never any changes in hearing. (she was tested regularly)

  13. Two days post IVIG and no side effects

    in PANS / PANDAS (Lyme included)

    Posted

    I just want to share what we did for my daughter’s IVIG since she has not had any side effects. Hopefully this will help others.

     

    This is day two post IVIG. This was her second IVIG. The first one she did have side effects, so this time, we slowed down the infusion and doubled the saline solution. She is 85 lbs. We did 2gm/ per kilo of body weight. This was a two-day infusion with 740ml IVIG solution per day and two 1000ml saline bags per day. We asked our pharmacist for the most “reliable” brand that he carried with the least preservatives.

     

    We started the saline 30 minutes prior to the IVIG and gave her Claritin and Tylenol at that same time (both days). We started the IVIG at 50ml per hour for the first hour then did 100ml per hour for the remaining hours (both days). We timed it so that we finished off the saline solution 30 minutes following the completion of the IVIG solution. Two very long days! We gave her no additional Tylenol, Benedryl, etc. She did take her normal antibiotic and supplement regimen. The first day post IVIG she went to acupuncture. Though, I don’t think it was necessary this time. (The first IVIG it helped with the side effects).

     

    Hope this information is helpful to others.

  15. IVIG - Process before, during and after

    in PANS / PANDAS (Lyme included)

    Posted

    just wanted to say that, regarding doing the high dose IVIG treatment over 2 days instead of a single day, part of the reason is that the IVIG is a protein that drastically expands the blood volume. This is one of the reasons its important to do vitals signs and check blood pressure throughout the infusion. To use the recommended dose which is typically 1.5 grams per kg, that's alot of added fluid volume directly into our child's bloodstream and it wouldn't be safe to do it all in a single day. hope that helps a little.

    amy

    I agree. Also, spreading it out lessons the chance of side effects plus lots of fluid (hydration) before during and after. Saline drip along with IVIG will help. Children typically handle it better (less side effects) than adults. That is why I suppose some children can do it in one day. I have heard of spreading it out as much as five days for 2gm/per kilo. To completely eliminate side effects. Slowing it down also lessons side effects. i.e. take total of 16 hours vs 8 hours just as an example. But some children may want to deal with minor side effects and not drag it out.

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