Motrin and what might I see in DS?

[lmkmip67]

I started giving two doses of Motrin a day about a day and a half ago, just to see, as I have heard it used on here. We are awaiting bloodwork and making appointments. But I was curious. So far it seems to have had a huge impact on DS vocal tic. He is still ticing other ways but I do see some impact. Is this significant? I want to see more days of a difference before I am convinced. And of course I know it is a bandaid. But I just wondering how telling it is?

 

And also is there anywhere that it is documented that this can be an issue of inflammation? It does seem such an odd coincidence. Not sure my pediatrician would even believe me. lol

Edited August 25, 2010 by lmkmip67

[Priscilla]

I believe the MRI study (w/ DR Swedo) showed increase in the size of the basal ganglia of children with PANDAS which was thought to be caused by inflammation (due to the antibodies attacking this area). There is even some thought that it may be the anti-inflammatory properties of the abx that are beneficial. I have started my dd 8 on fish oil and I am trying to feed her inflammation reducing foods. Still on abx though. Buster's site PANDAS Network may have more information on the studies. I am tempted to try the motrin but I am afraid of the effects on the liver if given too frequently. I do believe this is an inflammatory issue myself.

[thereishope]

Motrin is Ibuprofen which is a NSAID (Non Steroidal Anti Inflammatory Drug)

 

 

From the PANDAS FAQ

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

"Q:I've read a lot about Ibuprofen, what can it do for my child?

A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules see http://www.latitudes.org/forums/index.php?...art=#entry46222 "

 

 

If Ibuprofen helps your child PANDAS symptoms, it can be take as an indicator that inflammation may be occuring, which is what happens with PANDAS.

 

Now, if Ibuprofen(IB) does not help, it does not rule out a PANDAS possibility. In my child, IB did not help one time, but helped in a different exacerbation.

Edited August 26, 2010 by Vickie

[PANDASmcnuggetsw/fry/coke]

How long can a child take ibprofen/Motrin etc. without risking liver damage? I have heard some parents go long term with it and some nervous about a few days. Are we talking about the standard dosage also? As in 200mg 2x a day?

 

Thank you!

PANDAS McNuggets w/fry/coke

[thereishope]

My son is 6. I follow the label for dosing on the dye free liquid. If you unsure of dosing , check the Motrin website or even look at a liquid bottle (even if your child takes pills).

 

I believe you can give full dose short term. I never really went passed 2 weeks and never woke up him up from sleep to give it. Some on here have given it long term, but lower the dosing and some may even get the liver checked. Again, I, personally, have only given it short term.

 

Ibuprofen shouldn't be given when the child is on a steroid and you can give milk prior to it to help the stomach.

[PANDASmcnuggetsw/fry/coke]

My son is 6. I follow the label for dosing on the dye free liquid. If you unsure of dosing , check the Motrin website or even look at a liquid bottle (even if your child takes pills).

 

I believe you can give full dose short term. I never really went passed 2 weeks and never woke up him up from sleep to give it. Some on here have given it long term, but lower the dosing and some may even get the liver checked. Again, I, personally, have only given it short term.

 

Ibuprofen shouldn't be given when the child is on a steroid and you can give milk prior to it to help the stomach.

[PANDASmcnuggetsw/fry/coke]

Thanks Vickie.

Does it matter whether its Motrin, Advil or generic ibprofen? Is there any difference?

 

PANDAS McNuggets w/fry/coke

[T_Mom]

My son is 6. I follow the label for dosing on the dye free liquid. If you unsure of dosing , check the Motrin website or even look at a liquid bottle (even if your child takes pills).

 

I believe you can give full dose short term. I never really went passed 2 weeks and never woke up him up from sleep to give it. Some on here have given it long term, but lower the dosing and some may even get the liver checked. Again, I, personally, have only given it short term.

 

Ibuprofen shouldn't be given when the child is on a steroid and you can give milk prior to it to help the stomach.

 

 

Vickie--Are some on the forum on daily Motrin long-term?

 

I have not seen that written anywhere, I have only ever seen Motrin use referred to as a "bandaid" approach short-term for a day or two?

Edited August 27, 2010 by T.Mom

[lmkmip67]

I also wonder what is the longest it has been given without concern to damage. I have given it to my son twice a day for three days and it makes a world of difference in his mood and vocal tic. Of course some things remain. Last night I gave half a dose and nothing this morning, as I am concerned. And he is a bear. He was much more pleasant the last three days. This, of course, means nothing to my pediatrician. It helps so much though, at least in the mood, that I wonder if this really does give a clue that we are indeed dealing with PANDAS?

[thereishope]

There are at least 2 I can think of off hand. One does get her their daughter's bloodwork checked on a regular basis. Like I said, I, personally, only give it short term, as does the majority on here.. The longest was one time I think I gave it for two weeks or shortly less. I started every 6 hours for a couple days (with a break while sleeping), but then spread it out more, like only one or two doses a day. Total was two weeks or slightly less. Now, if I would see anything questionable now, I will give a single dose as a precaution until I can asses him more. I haven't had to give him any Ibuprofen for a really long time now.

 

I'd suggest only short term to anyone since there are too many things you'd have to look into with anything longer.

 

 

My son is 6. I follow the label for dosing on the dye free liquid. If you unsure of dosing , check the Motrin website or even look at a liquid bottle (even if your child takes pills).

 

I believe you can give full dose short term. I never really went passed 2 weeks and never woke up him up from sleep to give it. Some on here have given it long term, but lower the dosing and some may even get the liver checked. Again, I, personally, have only given it short term.

 

Ibuprofen shouldn't be given when the child is on a steroid and you can give milk prior to it to help the stomach.

 

 

Vickie--Are some on the forum on daily Motrin long-term?

 

I have not seen that written anywhere, I have only ever seen Motrin use referred to as a "bandaid" approach short-term for a day or two?

Edited August 27, 2010 by Vickie

[thereishope]

Motrin and Advil are just name brand Ibuprofen. Some may have dye in them. My son won't swallow pills so we take dye free generic ever since that last recall.

 

The other NSAID that is not Ibuprofen is Aleve (which is naproxen sodium). Those who have tried that have said that it did not work as well as Ibuprofen.

 

 

Thanks Vickie.

Does it matter whether its Motrin, Advil or generic ibprofen? Is there any difference?

 

PANDAS McNuggets w/fry/coke

Edited August 27, 2010 by Vickie

[PANDASmcnuggetsw/fry/coke]

Thanks so much again!

[Packer Fan]

I have seen similar results with my son. We are awaiting insurance review for our first IVIg treatment. I tried ibuprofen as a "band-aid" until we can get IVIg. We have seen such an improvement. We are using 2 200mg tablets every 6 hours while awake. It has greatly reduced his vocal tics and facial tics. We just got back the first of his Cunningham scores. His CamK is 184! I'm hoping this will help our insurance review.