2 Questions

[lynn]

I have an appointment with Dr. B in April to find out if I am right about DS' PANDAS. Can anyone tell me if he typically goes directly to IVIG or if he tries abx first? DH (my rock of logic) would likely not be willing to go to IVIG without successful abx remission.

 

Also, can anyone tell me what doseage of Ibuprofen they give? I'm hoping to keep things calm here until then.

 

I love this board. It gives me hope.

 

Lynn

[MomWithOCDSon]

I have an appointment with Dr. B in April to find out if I am right about DS' PANDAS. Can anyone tell me if he typically goes directly to IVIG or if he tries abx first? DH (my rock of logic) would likely not be willing to go to IVIG without successful abx remission.

 

Also, can anyone tell me what doseage of Ibuprofen they give? I'm hoping to keep things calm here until then.

 

I love this board. It gives me hope.

 

Lynn

I'm not sure about Dr. B., but I do know that some other docs who favor IVIG will recommend a steroid burst first in order to further confirm that inflammation is playing a part and thereby support a PANDAS diagnosis.

 

As for ibuprofen dosage, it will vary by age/weight. My understanding is that, clinically, a child 90+ pounds is effectively an adult for OTC dosaging purposes. We have never given our DS13, who's 135 pounds, more than 400 mg. of ibuprofen at one time, and no more than 800 mg. in a single day. Plus, I don't know that you would want to max out the dosage for day after day, given the potential for liver damage.

 

I'm sure someone else here has more experience with ibuprofen on a longer-term basis, but you might start out with something relatively low and see if it helps, going up in dosage only if required.

 

Not sure what your DS's symptoms/behaviors are, but you can also try some natural anti-inflammatories and calming supplements, like valerian root (calming) and tumeric (or curcumin) and quercitin (anti-inflammatory) in the meantime.

 

All the best!

[momaine]

I can get away with doing 200mg each time with a lot of benefit. Depending on the day I do 2 or 3 doses per day, spaced out evenly. It really helps my dd a lot.

Angela

[dcmom]

Lynn-

 

Of course, I don't know anything about your child....

 

But, to give you a head's up- there were times when neither of my kids really responded dramatically to antibiotics. We had to take the next step to steroids. I don't know Dr B, but others here can chime in about his process. It , of course makes sense to do antibiotics, then proceed to a steroid burst, and then to either IVIG or PEX, changing only one element per month (unless of course, your child is in a very acute episode).

 

Good luck!

[jayjay]

I have an appointment with Dr. B in April to find out if I am right about DS' PANDAS. Can anyone tell me if he typically goes directly to IVIG or if he tries abx first? DH (my rock of logic) would likely not be willing to go to IVIG without successful abx remission.

 

Also, can anyone tell me what doseage of Ibuprofen they give? I'm hoping to keep things calm here until then.

 

I love this board. It gives me hope.

 

Lynn

[/quote

]My 9 year old son has been seeing Dr. B. since January. He started him out with abx and a 21 day steroid burst. We are currently still just doing abx. He did not go directly to IVIG, but I'm sure a lot factors into that decison. It is probably different for each child and the severity of the PANDAS symptoms. I also think you might have to prove the antibiotics don't work before you can get insurance approval for IVIG in some cases. He is a vey kind man, I think you will like him. Hang in there, I know April probably seems like a lifetime away right now : )

[thereishope]

How much does your son weigh?

 

On this sentence...

DH (my rock of logic) would likely not be willing to go to IVIG without successful abx remission.

...if your child goes into full remission with antibiotics, you may not feel the need to seek IVIG. If anything, it might be the reverse. If you don't see remission with antibiotics, you seek IVIG.

 

So, like others suggested, once the doctor sees your child, evaluates the med history, a steroid burst might be suggested. Also, if you see improvement on antibiotics (not full remission immediately, but improvement) that also backs up the diagnosis.

 

I see you've been on ACN for awhile. Have you heard of the Cunningham test/study?

Edited March 23, 2010 by Vickie

[memom]

Hi Lynn,

 

We are headed for our second visit with Dr. B. April 1. Per his words, he does not start with the big guns until he has tried a few other things first (full laboratory workup, antibiotics, and steroid burst). Have a good visit.

 

Ellie

memom

[lynn]

Thanks to everyone. You guys are the best! Vickie, my son is 14, weighs 165 (astonishingly, he is now taller than me) I have seen the Cunningham test mentioned, but haven't yet gotten my feet under me to think about it. I was previously only on the Tourette's board, but a recent increase in OCD and tics associated with some sort of respiratory illness was just too strong to ignore. DS did have a sudden onset of tics way back when he was 5. He had what was diagnosed as Kawasaki's disease. Since then he has had a waxing and waning of tics and OCD. I had him tested for strep with this last illness and he was negative. It will be interesting to see what we come up with at the Dr's visit. As someone pointed out, yes indeed, end of April appears far far in the distance!

Edited March 24, 2010 by lynn

[Kayanne]

Thanks to everyone. You guys are the best! Vickie, my son is 14, weighs 165 (astonishingly, he is now taller than me) I have seen the Cunningham test mentioned, but haven't yet gotten my feet under me to think about it. I was previously only on the Tourette's board, but a recent increase in OCD and tics associated with some sort of respiratory illness was just too strong to ignore. DS did have a sudden onset of tics way back when he was 5. He had what was diagnosed as Kawasaki's disease. Since then he has had a waxing and waning of tics and OCD. I had him tested for strep with this last illness and he was negative. It will be interesting to see what we come up with at the Dr's visit. As someone pointed out, yes indeed, end of April appears far far in the distance!

 

Hi Lynn,

 

If you get a chance, go back and read SFMOM's posts...she believes that her younger son having Kawasaki's was the start of PANDAS for her household. It may be quicker to pm her. I think she posted a study from Japan which shows that Kawasaki may be from a strep infection...she will probably chime in too.

 

Good luck,

Karen

[Debbie1]

Lynn,

 

We have been seeing Dr. B. since November 2009 and he has not jumped straight to IVIG with us. We have spent several months on antibiotics and did a 2 week steroid burst as well. We are now considering IVIG because although my son has improved significantly with antibiotics, he still has some OCD that has not gone away. We saw significant improvement on the steroid, which was primarily used for diagnostic purposes, but as soon as we stopped the steroid, symptoms returned.

 

Dr. B. is wonderful. I have only the best things to say about him. Best of luck with your appointment.

 

Debbie

[thereishope]

I agree with Kayanne. Look up SFMom's old topics and posts. She's the expert on that in this forum. If you search "Kawasaki" some things will pop up too. I saw that in your response and my eyes perked up a little. Your son isn't the only one on here who was diagnosed with that at some point.

 

Also, at 165 pounds, the Ibuprofen can be given at adult dosages.

[zazuk2010]

Just wanted to mention that we did a steroid burst for both our twin ds's 5. It worked great for one , all PANDAS symptoms gone after 12 days (for at least 3 weeks after) but no reponse from my other son. We did IVIG for both 2 months later and they both responded to IVIG very well. It is still holding for the most part 5 months later. still have some symptoms, but nothing that is not manageable and the son with lingering symptoms is the one who responded well to the steroid. The other son who did not respond at all to the steroid is doing great since the IVIG. My point here is that while some docs say that the steroid burst is diagnostic and that if it works it is a good indication that the IVIG will work, if a steroid burst does not work to reduce symptoms, IVIG can still work well.

 

Given what you mentioned about your Dh I thought you should know our experience. My Dh was skeptical after the steroid did not work for one Ds and I had to convince him we should try the IVIG anyway. Of course, we are SO happy we did!

 

best, Kari