Had Consult with Dr. Trifiletti

[dcmom]

Someone just posted a news article on the TS board about the "sneezing girl" going to see Dr Triffileti! Go Dr T!

[EAMom]

Someone just posted a news article on the TS board about the "sneezing girl" going to see Dr Triffileti! Go Dr T!

 

Here it is http://www.wvec.com/news/Family-seeks-cure...r-72836702.html

[thereishope]

Thanks for posting the link.. I've actually been wondering how she's doing.

[P_Mom]

Faith...

 

My older son does the EXACT same thing you described with his arm...well, did, haven't seen it for a bit...but, you described it to a T.

 

When did you see Dr.T? So, what did he have to say.... did you go off the Aug. Latimer tried and going with 250 mg zith a day for a month...and then report?? Did you see him in person...oh, please do elaborate.

 

Kelly

[faith]

Faith...

 

My older son does the EXACT same thing you described with his arm...well, did, haven't seen it for a bit...but, you described it to a T.

 

When did you see Dr.T? So, what did he have to say.... did you go off the Aug. Latimer tried and going with 250 mg zith a day for a month...and then report?? Did you see him in person...oh, please do elaborate.

 

Kelly

 

 

Kelly,

we saw him on Sunday, (he has a few hours on Sundays). We did the augmentin for a month, this was mostly the prescription I had from our pediatrician before I saw Dr. Latimer, he gave it to me when I brought him in for what I thought may have been strep, but he tested negative. I have been giving anyway to see and the ped gave me 2 refills. Dr. L. gave me a rx also to continue, but after a month already, I wanted to try something new. Dr. T. gave me the azith, but what he gave was a z-pack which is only 5 days worth, not sure why he did it like that. I asked for refills in case I saw good results and wanted to stay on and he put 5 refills. I waited a couple days because I wanted to see if my son vamped up a little so I could really tell if the azith was helping, because I thought in the last two or three days, he was quieter, then I wouldn't know if it was the azith or just natural. The vocal is basically what I use to gauge as it is the most obvious symptom that is always present. I did think he was vocalizing last night more than in the two days before, (and he was also a real pill, lol) so I started the azith last night. I'll see how it goes and then probably make another appt. He mentioned that prophalactically it would be 250 mgs. 2 x per week, so in this regard he may still be a little behind, but he seems open to what parents are reporting. I mentioned that some who were on azith felt 2x week wasn't enough and felt their kids did better on a daily regimen.

 

I did tell him I was nervous about the 30 steroid that Dr. L. prescribed and that I didn't do it yet, and he said a short term five day and taper would be fine, but again, I think he likes to go in steps and we'll see how we do on the azith and then gauge from there. he does think that abx alone can help some kids without having to go further. If my son was in a real crisis, where he couldn't function or leave the house, then I suppose we would have talked about something more, but right now, I'm comfortable starting with this. For those kids that have more going on in the way of severe ocd, I'm guessing more aggressive treatment would be indicated, especially if they have already been on abx for a while.

 

Re the advil, he did mention it to me, but he did say he just heard parents were using that and that he thought it was interesting, but wouldn't have thought of it himself. I told him that it seemed to maybe help with inflammation in the brain on a short term basis. Again, I think he is still getting set up, he knows alot, but he will kind of pick up on what parents have to report in time.

 

I didn't mention the part about the arm, but I had a whole list of my son's symtoms, present and past. when he did the neuro examination, he didn't see the piano fingers, but he did say he had the 'milkmaid' grip, and he demonstrated that for me. I found that interesting, because with a cam k of 179, I guess I was wondering why he didn't seem to have a little chorea, being in that upper range, and this indicates he kind of does.

 

this is much more convenient for me, I can get there in about 1 1/2 hours. I do think he is still getting kind of set up, he still has to get afilliated with a hospital so he could do IVIG's when necessary. But I liked that he talked alot and had alot to say, I was listening to him alot, it made me see he knew alot about the studies that were done, and I felt I could ask him alot of questions and make my own feelings known too.

 

what? you said to elaborate.......

 

Faith

[kim]

can someone describe "milkmaid" grip? I think it's like if you shake hands there is a sort of sqeeze or contraction that can be felt?

[KeithandElizabeth]

Faith:

 

Can you explain the "milkmaid grip"

 

So, is antibiotics your treatment plan so far?

 

Thanks,

 

Elizabeth

[nevergiveup]

Coco, Ellen,

 

Right now she gets 500mg/kg, too low. She did have 1 gram/kg in May and it caused severe fatigue and headaches for 3 weeks. Coco does your child have side effects from the infusions. I am meeting with my immun on Monday to discuss a higher dose. I believe I will need a consult with Dr. B. Does Dr. B require high strep titers for a confirmation of PANDAS or just SAD and CVID and OCD and chorea? My dd has never had high strep titers but she has a CAM Kinase of 164 and an ANA of 2560. IGG's 493 and every Pnuemoccal was failed. A history of chronic infection low IG4 and low IG1. Plus a C4 that stays very low even after IVIG. Thanks

ote name='coco' date='Nov 24 2009, 03:20 PM' post='46035']

Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point.

 

coco

[faith]

Faith:

 

Can you explain the "milkmaid grip"

 

So, is antibiotics your treatment plan so far?

 

Thanks,

 

Elizabeth

 

 

The doctor put his two pointer fingers out and asked my son to grip them (like you would a bycicle handle with your fist wrapped around it) and he asked him to kind of hold tight. apparently, it is as kim described, the pressure they put doesn't stay a steady grip, it kind of loosens and tightens, loosens and tightens, so like picture milding a cow, where you hve to squeeze one udder with one hand and release the pressure on the other hand, so ebb and flow, ebb and flow. like that. its subtle tho, he let me demonstrate it with my son, and I had to concentrate to feel the difference. but by then, my son was clued into what the doc was saying and so he was purposely trying to squeeze as hard as he could. if you do this test, don't let the child kinow what's going on or they'll probably try to show their strenght like my son did.

 

Yes, I'm going to start with this new abx (azith). I didn't really feel like the augmentin was doing anything worth noting. my son is 10 1/2 and 52 lbs. I've expressed my fear of the steroids, so I think this is good for me now, I'm a slow treader as well, I think that's why I wrote off PANDAS a couple years ago, I wasn't even comfortable with the longterm antibioitics that everyone was talking about then. I am in favor of the more aggressive treatments, but it takes me a while to get used the ideas, I have to do alot of research before I jump on something, my son's main symptoms are tics, they are the most obvious.

 

Faith

[Ellen]

Beth, Dr. Trifiletti mentioned that with IVIG they often pretreat with Benedryl and Motrin. Does your immunologist do this? Coco, does Dr. Bouboulis do this? During my last conversation with Dr. B about IVIG he said he would start my son with 750-1000 mg/kg and he is willing to increase the monthly dose if we are not seeing results.However, he does believe that we could still see good results at this dose and we may not have to build up. He does feel that this kind of dose over a long period of time is going to give better results than one intensive high dose. I doubt that Dr. Bouboulis would require high strep titers for a confirmation of PANDAS. My son's have only been slightly elevated.

 

Coco, Ellen,

 

Right now she gets 500mg/kg, too low. She did have 1 gram/kg in May and it caused severe fatigue and headaches for 3 weeks. Coco does your child have side effects from the infusions. I am meeting with my immun on Monday to discuss a higher dose. I believe I will need a consult with Dr. B. Does Dr. B require high strep titers for a confirmation of PANDAS or just SAD and CVID and OCD and chorea? My dd has never had high strep titers but she has a CAM Kinase of 164 and an ANA of 2560. IGG's 493 and every Pnuemoccal was failed. A history of chronic infection low IG4 and low IG1. Plus a C4 that stays very low even after IVIG. Thanks

ote name='coco' date='Nov 24 2009, 03:20 PM' post='46035']

Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point.

 

coco

[fuelforall]

Dr. T made recommendations, my MD (Dr BOCK)made others.

The gist of it is is that ABX are bumped up. Daily zith now. Both Bock and T are in agreement cuz my son's latest titer numbers were elevated.

Bock wants IVIG a few more times because of low IGG subclass 1 levels. Dr. T wants more tests and to try a tonsillectomy(it's where the strep and other such nasties may reside). My son's tonsils are normal sized but Dr. T assured me he knows MD's who will remove them given the circumstances.

They are divided on the value of immunology reports. Dr B sez the auto-immune issues are clear, how much more confirmation of them would be useful? (It seems to me a lot of parents make the move to get the tests for insurance purposes to get IVIG- am I wrong?)

 

So we'll watch the abx and move on from there. January I get a new health insurance company that, as other have noted on the blog, sez it covers for Pandas. THe plot thickens.

 

Michael

[Ellen]

Michael, please keep us posted on how your son does with the increased dose of zith. I just started today with the increase from 250 to 500 mg. for my son and I am hopeful that this will make a big difference.

 

Ellen

 

Dr. T made recommendations, my MD (Dr BOCK)made others.

The gist of it is is that ABX are bumped up. Daily zith now. Both Bock and T are in agreement cuz my son's latest titer numbers were elevated.

Bock wants IVIG a few more times because of low IGG subclass 1 levels. Dr. T wants more tests and to try a tonsillectomy(it's where the strep and other such nasties may reside). My son's tonsils are normal sized but Dr. T assured me he knows MD's who will remove them given the circumstances.

They are divided on the value of immunology reports. Dr B sez the auto-immune issues are clear, how much more confirmation of them would be useful? (It seems to me a lot of parents make the move to get the tests for insurance purposes to get IVIG- am I wrong?)

 

So we'll watch the abx and move on from there. January I get a new health insurance company that, as other have noted on the blog, sez it covers for Pandas. THe plot thickens.

 

Michael

[coco]

Coco, Ellen,

 

Right now she gets 500mg/kg, too low. She did have 1 gram/kg in May and it caused severe fatigue and headaches for 3 weeks. Coco does your child have side effects from the infusions. I am meeting with my immun on Monday to discuss a higher dose. I believe I will need a consult with Dr. B. Does Dr. B require high strep titers for a confirmation of PANDAS or just SAD and CVID and OCD and chorea? My dd has never had high strep titers but she has a CAM Kinase of 164 and an ANA of 2560. IGG's 493 and every Pnuemoccal was failed. A history of chronic infection low IG4 and low IG1. Plus a C4 that stays very low even after IVIG. Thanks

 

Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point.

 

coco

 

Fortunately my daughter does not get any side effects from that monthly dosage of gamma. I think Dr. B. will be eager to hear about your child's symptoms, and her CamK is certainly pandas, (which he understands well - he had a consult with Dr. Cunningham), and her other blood work would surely qualify her for the high-dose monthly treatment. If she experiences side effects that are too much, I am sure he would start out at a lower dosage and build to a higher one over time as her system gets used to it.

 

coco

[EAMom]

We followed Dr. K.'s recommendation of pre-treating (and maintained throughout the 2 days of IVIG and a couple of days afterwards) with Benedryl and Tylenol. We probably also gave a little Advil in there as well (dd normally get advil daily). Our dd got 2gm/kg (over 2 days) and did well. She did have some headache/flu like symptoms/mild fever which were controlled with the benedryl/tylenol. The symptoms only lasted a couple of days post IVIG.

 

Ellen...

He does feel that this kind of dose over a long period of time is going to give better results than one intensive high dose.

which is interesting b/c both Swedo (2gm/kg over 2 days) and Dr. K. (1.5gm/kg over 2 days) use a (hopefully) 1x high dose.

 

One problem (esp. if insurance isn't paying) is that a 1x high dose would be more cost-effective than paying for many lower dose infustions.

[Buster]

We probably also gave a little Advil in there as well (dd normally get advil daily).

Looks like the hospital requested that we not give Advil during the day before or the day of her IVIG.