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ds had 'sudden onset' 3 years ago. of course, it's been up and down since then. last 6 mths have been very successful and i've said many times,he is now healthier than he's been in 3 years. we had success with motrin in the past. had really stopped prophylactically for big events last june --- didn't seem to really need/not so helpful.

 

we've had extremely stressful school situation -- not really good accomodations in place from 504 resulting in extreme fight or flight reaction and subsequent school anxiety and arguments (his) with school personnel, with attitude that it's all about compliance and he just needs to comply or have heavy negative consequences.

 

last weekend, he seemed to be spinning out of control. we were giving motrin 1x/day. psych discussed how for an anxious kid, big troublesome out of control situation sends him spinning. our dr believes he's healthy -- not spinning from new infecton. i have seen good results from motrin and from providing clear, direct boundaries and consequences.

 

i do think there is involvement of permeability of BBB due to stress. i myself am in PTSD from this.

 

he's on the cusp of of dosage at 48 lbs. i'd like to give less dosage, more often. anyone have any advice? i think 150 mg every 4 hours. we probably could do only 3x/day - 450 mg. even if we did a bedtime dosage, we're still not over 4x/day -600mg. if we go up to next level and do every 6 hours, we're at 200 mg x 3, also ~600 mg. what's more important -- mg or spaceage of time?

 

thanks!

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Not an expert, but if Motrin worked in any way for us, I'd be giving it like candy! Well, that's my "looking from the other side" view. Anyhow, I do personally think that the dosage is more important. I'm trying to think of an analogy, but I don't think that the dose necessarily wears off sooner just because it's lower, but rather that it's less effective because it's lower. My daughter is just 50 pounds, and I give her 200 mg (for pain). Motrin can actually be given in much higher doses fairly safely (so I've been told/experienced with doctors prescribing to ME)....and also been told much safer in higher doses than Tylenol. Not making light of the fact that they are still little beings, etc. Good luck.

 

Just thought of analogy---would you rather have an eipdural work " a little bit" and give it more often, helping just a little..... or would you rather get the "full effect" right from the start.

Edited by eljomom
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Smarty,

I have personally found more frequent/steady dosing to be more effective than letting the blood concentrations follow a roller-coaster pattern. But I've also found it impossible to manage motrin dosing around school - and it doesn't sound like your school is going to be overly helpful in that regard. We've been using Aleve (Naproxen) using a dosing similar to the one here: https://www.pediatriccareonline.org/pco/ub/view/Pediatric-Drug-Lookup/153423/2/naproxen?amod=aapea&login=true&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token

That way, we can go 8 hrs and make it thru the school day.

 

You may also want to look into luteolin http://www.ncbi.nlm.nih.gov/pubmed/21631167 This is just one PubMed citation. If you search on luteolin and inflammation you get lots of hits - most are either cancer focused or way over my head. There's a supplement called Lutimax http://luteolin.com/

I was all set to buy some but S&S tried it and didn't care for it. At the time, we were going through so many supplements that I moved on. But I always keep it in the back of my mind. You may want to PM her and get her thoughts. She's mostly on the lyme forum now if you're looking for her contact info.

 

If you decide to stick with just motrin, I'd opt for more frequent dosing if possible. Keeping the inflammation at bay seems critical for us. Once it starts up, it's much harder to re-gain control.

 

Good luck!

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I don't usually try to promote any specific supplement because they work so differently for different individuals. But I will just say that I am using something called Gliatrol (think that is spelled right) from Klaire recently. Supposed to help with neurologic swelling and be neuroprotective. You can read up on it on their website. I think it is helping. Good Luck.

 

Dedee

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Smarty,

I have worked with many pediatricians. Whenever they prescribed Ibuprofen, they might have dosed lighter or heavier depending on that child's medical situation, but they never gave it any closer than every 6 hours. There is still an active amount in the body until that time. Giving it every 6 hours should be adequate to prevent the rollercoaster effect (although spacing it out to every 8 hours might be different). Actually, many doctors in the hospital setting prescribe it at 10mg/kg. (not just in weight ranges). So, the actual dose for 48 lbs (if given by a doctor) would even be a little bit higher.

 

We are giving our daughter Ibuprofen for PANDAS treatment also. We were told to give it to her at full strength at 8am and 8pm.

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ds had 'sudden onset' 3 years ago. of course, it's been up and down since then. last 6 mths have been very successful and i've said many times,he is now healthier than he's been in 3 years. we had success with motrin in the past. had really stopped prophylactically for big events last june --- didn't seem to really need/not so helpful.

 

we've had extremely stressful school situation -- not really good accomodations in place from 504 resulting in extreme fight or flight reaction and subsequent school anxiety and arguments (his) with school personnel, with attitude that it's all about compliance and he just needs to comply or have heavy negative consequences.

 

last weekend, he seemed to be spinning out of control. we were giving motrin 1x/day. psych discussed how for an anxious kid, big troublesome out of control situation sends him spinning. our dr believes he's healthy -- not spinning from new infecton. i have seen good results from motrin and from providing clear, direct boundaries and consequences.

 

i do think there is involvement of permeability of BBB due to stress. i myself am in PTSD from this.

 

he's on the cusp of of dosage at 48 lbs. i'd like to give less dosage, more often. anyone have any advice? i think 150 mg every 4 hours. we probably could do only 3x/day - 450 mg. even if we did a bedtime dosage, we're still not over 4x/day -600mg. if we go up to next level and do every 6 hours, we're at 200 mg x 3, also ~600 mg. what's more important -- mg or spaceage of time?

 

thanks!

Maximum dosing for Motrin for kids is 10 mg/kg per dose with max of 40 mg/kg per 24 hours. So no more than 4 times per day. If your child is 48 lbs that is 22 kg so 220 mg per dose. Motrin goes the distance and usually lasts 6-8 hours so you should be able to go a school day. Personally, I don't beleive in sub-therapeutic dosing of any medication. Do not get high enough blood levels for weight to be effective. Lots of factors effect this- half life of med, first pass clearance through liver, clearance in kidneys/urine etc. If you are gonna give a med- give it at dose appropriate for weight at appropriate intervals. Not sub therapeutic doses more frequently. Just my opinion. HTH.

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Smarty,

I have worked with many pediatricians. Whenever they prescribed Ibuprofen, they might have dosed lighter or heavier depending on that child's medical situation, but they never gave it any closer than every 6 hours. There is still an active amount in the body until that time. Giving it every 6 hours should be adequate to prevent the rollercoaster effect (although spacing it out to every 8 hours might be different). Actually, many doctors in the hospital setting prescribe it at 10mg/kg. (not just in weight ranges). So, the actual dose for 48 lbs (if given by a doctor) would even be a little bit higher.

 

We are giving our daughter Ibuprofen for PANDAS treatment also. We were told to give it to her at full strength at 8am and 8pm.

 

 

P.S. There are some instances where the docs give peds patients 5mg/kg too. But it is still only every 6-8 hours. Who knows which dose is considered therapeutic for our PANDAS kiddos. Maybe there will be a research study done some day to see which dose is best for them! But, no matter what dose you and your doctor choose, it is safest to give at 6 hour intervals.

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thanks so much for replies!! we went with 200mg, 3/x day, 6-7 hours. we did for 5 days. did see results in decrease in asperger-like behaviors, increase in attention and cooperation, and manners (interesting lack of manners and great difficulty in please and thank you during exacerbation)

 

spoke to ped who agrees it's hard to determine dosage when using for this purpose. her thoughts for pain of broken limb -- at full dosage 3-4x day, she is comfortable with 7 days, 7-10 days is gray area, over 10, she is not comfortable with. she thought weaning after day 5 was good idea for us.

 

i now want to move to 2x/day. was thinking it should be am and 8 hours later to have effects in wake time. would 10-12 hours be better to keep levels more steady? i want to do 2x/day for a few days and then move to 1x in am.

 

thanks for thoughts!!

 

if anyone wants to share what they do but worried about giving me advice on what to do -- i'd sure love to hear anecdotal motrin stories and plans!!!

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