Re: Ibuprofen/Pandas---Ibuprofen Does cross the BBB

[Guest guest]

Ibuprofen DOES cross the BBB ( blood brain barrier):

http://www.molecularstation.com/research/brain-uptake-of-nonsteroidal-anti-infla\

mmatory-drugs-ibuprofen-flurbiprofen-and-indomethacin-16715377.html<http://www.m\

olecularstation.com/research/brain-uptake-of-nonsteroidal-anti-inflammatory-drug\

s-ibuprofen-flurbiprofen-and-indomethacin-16715377.html>

I have not yet posted on this forum--I am new. My name is Terry--I know there's

another Terry on here so I will call myself Terry E. in my posts. I have an

almost 11 yo boy with OCD. He is a fraternal twin. His brother does not appear

to have OCD. His father has OCD. I recently took him for the blood test for

PANDAS and awaiting results. He has comorbid ADHD like symptoms and vocal and

facial/body tics.

His OCD became apparent 2 years ago as his Dad and I were going through a

divorce and he had a strict teacher and he started to obsessively check his

homework. He always had been extremely detail oriented and an incredible memory.

Recently he has stopped doing his CBT and has become more defiant and extremely

difficult to live with while on 20 mg of Citalopram (generic Celexa). At this

dose it is not controlling his OC and seems to exacerbate the other symptoms of:

provoking fights and baiting his brother and me, blaming everyone else for his

rude and unpleasant behavior, refusing to take responsibility for his behavior

and denying he is being OC, not responding to discipline, refusing to obey and

generally being rude, obnoxious and provocative, talking back obsessively. I

know a lot of it is his disorder, but it pushes all my buttons and I get

frustrated, angry, sad and depressed. I don't know where my sweet, kind boy

went. On top of it all, his Dad does not see these things the 10% of the time

that he spends with him, does not participate in his CBT and bad mouths the

wonderful therapist, making my son distrustful of her. We are seeing a

psychiatrist on Friday for med management only as we see a CBT counselor. He has

had a neuropsych exam and I am having difficulty getting a 504 plan as he is so

bright and does so well in school, they don't see the need for it. The need may

become more apparent later as he progresses in school and can't manage

logistics--he has some deficiencies in the executive portion of his

brain--organization, etc.

I will write more later about him in another post, but wanted to respond to the

Ibuprofen comment. I didn't expect to write this much, but it kind of flew out.

Thanks,

Terry E.

Re: Ibuprofen/Pandas

,

As you read on pandasnetwork.org, ibuprofen can bring some kids relief.

Tylenol/acetaminophen will not. Ibuprofen is a NSAID (non-steroidal

anti-inflammatory drug). Prednisone (a steroid) is also a much stronger

anti-inflammatory and it is often given for a brief period of time to see if it

brings relief for Pandas kids. If it does, it's a good indicator.

We use Motrin frequently for my Pandas son. But never use more than the

recommended dose or frequency- too much can cause s Syndrome and

liver damage.

If your child suffers from joint and muscle pain from Pandas, you may also

want to try glucosamine with chondroitin.

Dr. Demetriou and colleagues with the UC Irvine Center for Immunology

found that N-acetylglucosamine (GlcNAc), which is similar but more effective

than the widely available glucosamine, inhibited the growth and function of

abnormal T-cells that incorrectly direct the immune system to attack specific

tissues in the body, such as brain myelin in MS and insulin-producing cells of

the pancreas in diabetes. Study results appear on the online version of the

Journal of Biological Chemistry. Here's the link to the summary of the study:

http://www.healthcare.uci.edu/news_releases.asp?filename=07MayDiabetes.htm<http:\

//www.healthcare.uci.edu/news_releases.asp?filename=07MayDiabetes.htm>

My son will not swallow pills, so we found a liquid at CVS that's vanilla

flavored. We mix it with some coconut banana juice and it seems to bring much

relief. Glucosamine is also a very effective anti-inflammatory that is used

frequently by sufferers of rheumatoid arthritis. The stuff isn't cheap. It was

$20 for a month's supply. But ibuprofin isn't cheap either. If it works, it's

worth it.

>

> <Yes, I have heard of this and their are other safer anti-inflammatories. I

do not know what they are>

>

>

>

> One thing I take myself for lower back pain due to inflammation is MSM.

Itâ?Ts an all natural anti-inflammatory and pain reliever. After ten years of

back pain at night I am now able to sleep through the night. As a bonus, I

stopped feeling the need to get up to pee when I started taking it too, which

began after the birth of my second daughter. I mentioned this to my Dr. and she

said it is likely due to the anti-inflammatory nature of it .

>

>

>

>

>

>

>

>

[Guest guest]

Terry,

Thank you for the information. Your sons ocd sounds a lot like my

daughters. She started her antibiotic tonight and I'm hopeful that we will

see results soon. One more thing that I just learned is that Strep can

cause itchy skin or itchy genitals. My daughter also had this symptom

recently and I dismissed it as her being obsessive. =( I had not heard

that before. I can't wait until she is feeling better!

I hope your son's blood test come out positive for pandas so you can get him

help. The ASO titers can vary. They can still be in the normal range and

they can still have PANDAS.

Ibuprofen DOES cross the BBB ( blood brain barrier):

http://www.molecularstation.com/research/brain-uptake-of-nonsteroidal-anti-i

nflammatory-drugs-ibuprofen-flurbiprofen-and-indomethacin-16715377.html<http

://www.molecularstation.com/research/brain-uptake-of-nonsteroidal-anti-infla

mmatory-drugs-ibuprofen-flurbiprofen-and-indomethacin-16715377.html>

[Guest guest]

,

Thanks for the support. I never considered PANDAS because he never had a known

Strep infection, though he had many sinus infections, and his father has OCD and

I assumed the genetic link.

He has had itchy skin on occasion. The problem he has had other symptoms on

occasion but what is coincidental and what is PANDAS? I feel it is a dilemma.

Tomorrow we'll find out.

Terry E.

RE: Re: Ibuprofen/Pandas---Ibuprofen Does cross the

BBB

Terry,

Thank you for the information. Your sons ocd sounds a lot like my

daughters. She started her antibiotic tonight and I'm hopeful that we will

see results soon. One more thing that I just learned is that Strep can

cause itchy skin or itchy genitals. My daughter also had this symptom

recently and I dismissed it as her being obsessive. =( I had not heard

that before. I can't wait until she is feeling better!

I hope your son's blood test come out positive for pandas so you can get him

help. The ASO titers can vary. They can still be in the normal range and

they can still have PANDAS.

Ibuprofen DOES cross the BBB ( blood brain barrier):

http://www.molecularstation.com/research/brain-uptake-of-nonsteroidal-anti-i<htt\

p://www.molecularstation.com/research/brain-uptake-of-nonsteroidal-anti-i>

nflammatory-drugs-ibuprofen-flurbiprofen-and-indomethacin-16715377.html<http

://www.molecularstation.com/research/brain-uptake-of-nonsteroidal-anti-infla

mmatory-drugs-ibuprofen-flurbiprofen-and-indomethacin-16715377.html>

[Guest guest]

I did later read that though Advil does cross the BBB, steroids are better.

Bonnie

>

> Terry,

>

> My daughter never had a known case of strep either, yet she had some

> antibodies, so clearly she had had it before. I've never been one to rush

> my kids to the doctor but I'm rethinking that now. If he tests positive for

> any antibodies at all, pursue the PANDAS route. They can put him on

> prednisone for 5 days as a trial to see if symptoms abate or in our case

> advil worked. Good luck

>

>

>

>

>

> From:

> [mailto: ] On Behalf Of Terry Rumas

> Sent: Wednesday, November 11, 2009 9:45 PM

> To:

> Subject: Re: Re: Ibuprofen/Pandas---Ibuprofen Does cross

> the BBB

>

>

>

>

>

> ,

>

> Thanks for the support. I never considered PANDAS because he never had a

> known Strep infection, though he had many sinus infections, and his father

> has OCD and I assumed the genetic link.

>

> He has had itchy skin on occasion. The problem he has had other symptoms on

> occasion but what is coincidental and what is PANDAS? I feel it is a

> dilemma.

>

> Tomorrow we'll find out.

>

>

>

>

[Guest guest]

Hi ,

His strep ASO came back 145 and normal was 125 ( upper limit). pdoc said she

didn't feel it was PANDAS as the one case she has seen was extremely elevated.

Nevertheless, she gave me a 10 day RX for Omnicef since he has had so many

sinus infections, the Augmentin doesn't work as well anymore. We see a new

psychiatrist tomorrow for med management who supposedly is very familiar with

OCD pts and I will ask him tomorrow. I will also ask him about the steroid

burst. ds takes ibuprofen on occasion for migraine/ headaches. How much Advil

and for how long do you dose for?

Does anyone have any thoughts on this slightly elevated ASO titer?

Thanks,

Terry E

Re: Re: Ibuprofen/Pandas---Ibuprofen Does cross

the BBB

,

Thanks for the support. I never considered PANDAS because he never had a

known Strep infection, though he had many sinus infections, and his father

has OCD and I assumed the genetic link.

He has had itchy skin on occasion. The problem he has had other symptoms on

occasion but what is coincidental and what is PANDAS? I feel it is a

dilemma.

Tomorrow we'll find out.

[Guest guest]

We have never had an elevated titer, but she does have PANDAS. Sadly, 37% of

kids that get strep, do not - this is documented by a study - if you need it,

email me. You can have a documented strep on a culture, and then get no titer

rise. So it's a good test to find the connection - it can help you say " yes " ,

but it cannot rule out PANDAS. That's why it is a clinical diagnosis. Taking

the Cunningham study test can also help build a clinical picture. Docs

shouldn't ever diagnose one child based solely on the worst case. The goal

should be to ensure that your child does not become the worst case. Glad you

are finding help - hope the appt goes well.

>

> Hi ,

>

> His strep ASO came back 145 and normal was 125 ( upper limit). pdoc said she

didn't feel it was PANDAS as the one case she has seen was extremely elevated.

Nevertheless, she gave me a 10 day RX for Omnicef since he has had so many

sinus infections, the Augmentin doesn't work as well anymore. We see a new

psychiatrist tomorrow for med management who supposedly is very familiar with

OCD pts and I will ask him tomorrow. I will also ask him about the steroid

burst. ds takes ibuprofen on occasion for migraine/ headaches. How much Advil

and for how long do you dose for?

>

> Does anyone have any thoughts on this slightly elevated ASO titer?

>

> Thanks,

>

> Terry E

> Re: Re: Ibuprofen/Pandas---Ibuprofen Does cross

> the BBB

>

> ,

>

> Thanks for the support. I never considered PANDAS because he never had a

> known Strep infection, though he had many sinus infections, and his father

> has OCD and I assumed the genetic link.

>

> He has had itchy skin on occasion. The problem he has had other symptoms on

> occasion but what is coincidental and what is PANDAS? I feel it is a

> dilemma.

>

> Tomorrow we'll find out.

>

>

[Guest guest]

Hi Terry,

 

I would follow up with another strep titer test to see if the two are in

agreement with the

results.     My son who is 25 yrs. old after reading all the discussion on

PANDAS I

had him tested ASO titer to find out his results, who as a child always had

sinus

and scarlet fever and repetitive ear infections.  His ASO was 190 and I was

told

that their lab normal was 200.   After reading various research about " normal "

results

most labs are 165.   Now I will continue to have him tested with another type

of

strep titer test to see if I should be concerned. 

Subject: Re: Re: Ibuprofen/Pandas---Ibuprofen Does cross the

BBB

To:

Date: Thursday, November 12, 2009, 11:38 AM

 

Hi ,

His strep ASO came back 145 and normal was 125 ( upper limit). pdoc said she

didn't feel it was PANDAS as the one case she has seen was extremely elevated.

Nevertheless, she gave me a 10 day RX for Omnicef since he has had so many sinus

infections, the Augmentin doesn't work as well anymore. We see a new

psychiatrist tomorrow for med management who supposedly is very familiar with

OCD pts and I will ask him tomorrow. I will also ask him about the steroid

burst. ds takes ibuprofen on occasion for migraine/ headaches. How much Advil

and for how long do you dose for?

Does anyone have any thoughts on this slightly elevated ASO titer?

Thanks,

Terry E

Re: Re: Ibuprofen/Pandas- --Ibuprofen Does cross

the BBB

,

Thanks for the support. I never considered PANDAS because he never had a

known Strep infection, though he had many sinus infections, and his father

has OCD and I assumed the genetic link.

He has had itchy skin on occasion. The problem he has had other symptoms on

occasion but what is coincidental and what is PANDAS? I feel it is a

dilemma.

Tomorrow we'll find out.