OK Everyone...do i laugh or cry like i'm doing

[MomWithOCDSon]

I was the one who found the taurine/CamK study. Thank you for sending it to Kathy Alvarez. (Truthfully, it never occurred to me to do so.) After I found that study it took me a week or 2 to get some taurine, but I've been giving it to my daughter for about 2 weeks. I have not seen an appreciable difference. I may try raising the dose...haven't decided yet.

 

In the mean time...I think your child's test results off/on taurine are very interesting (sorry its so frustrating).

Peg --

 

Our DS does not have tic behaviors, but given that CamK/taurine study, I thought it was worth trying taurine here, as well. The first couple of days with the taurine were fine and his short-term memory seemed to be improving, but then about Day 3 he seemed to be activated . . . more anxious and fidgety than we have seen in quite a while. When I did more research on taurine and found out it's one of the major ingredients in those "energy" drinks like Red Bull and the like, I started to wonder if that was what was behind the hyperactivity. So we stopped giving it to him.

 

You haven't seen with your DD in that regard? I'm wondering if we gave up on it too quickly, or attributed some behaviors to it that really didn't belong to it.

 

Anyone else use taurine on a regular basis? Any thoughts?

[Fixit]

the poem's a good analogy!!!

 

my husband asks what i do all day...and i can't tell you.....i wake up, get the kids out, do this..(phone calls, emails, faxes, drs office waiting, digesting info ,<because like i say we are learning and sometimes guideing the docs too>, filling out forms) and then its the next day....it's georgeous here and i cant remember being outside since last year!!!!!

 

Yes..I know. But you are on to something. We are building the ship as we sail it!! http://poetbabble.tumblr.com/post/19743102...p-as-we-sail-it

 

I think you are adding an important piece to the ship.

[peglem]

I was the one who found the taurine/CamK study. Thank you for sending it to Kathy Alvarez. (Truthfully, it never occurred to me to do so.) After I found that study it took me a week or 2 to get some taurine, but I've been giving it to my daughter for about 2 weeks. I have not seen an appreciable difference. I may try raising the dose...haven't decided yet.

 

In the mean time...I think your child's test results off/on taurine are very interesting (sorry its so frustrating).

Peg --

 

Our DS does not have tic behaviors, but given that CamK/taurine study, I thought it was worth trying taurine here, as well. The first couple of days with the taurine were fine and his short-term memory seemed to be improving, but then about Day 3 he seemed to be activated . . . more anxious and fidgety than we have seen in quite a while. When I did more research on taurine and found out it's one of the major ingredients in those "energy" drinks like Red Bull and the like, I started to wonder if that was what was behind the hyperactivity. So we stopped giving it to him.

 

You haven't seen with your DD in that regard? I'm wondering if we gave up on it too quickly, or attributed some behaviors to it that really didn't belong to it.

 

Anyone else use taurine on a regular basis? Any thoughts?

I knew that taurine was in those drinks, but I thought that was to promote focus. I just checked a MONSTER label (my older teens love those!) and it has 1000mg of Taurine. Allie does not drink MONSTERs (I have to draw the line somewhere. ) I've been supplementing w/ 325mg 2x/day. The label suggests 2x-4x/day and I decided to start with the lower amount. I haven't seen any difference that I can say, "Ah ha! That taurine really works!" She seems slightly better this week, but this is week 4 post LD IVIG (which seemed to make all bad things flair), and 2 weeks post steroid burst. I'm going to keep her steady on the same dose for now. She's going for IVIG 1.5mg/kg next Wed & Thurs, so not a good idea to be playing with things right now. And she's supposed to get a second IVIG at that dose in 4 more weeks. So, it'll be a while before I can do anymore experimenting w/ taurine.

 

In case anyone is interested, here is the taurine study being referred to here.

http://www.ub.es/farmacia/recerca/articles...elixJunyent.pdf

[EAMom]

Oh wow...I'm glad you re-tested.

 

I agree, this would be a good weekend to relax and "digest" this new information.

 

I hope you have an awesome Mother's Day.

[Stephanie2]

Wow, well at least you know for sure it's pandas. We have not done the Cam K test on either kid b/c scott is so sure they have pandas. I don't want to spend the money. BTW, the probiotic is www.customprobiotics.com I get the D-lactate Free Formula (formulated for kids like ours and it has that lac. ramnosis that you wanted in it). You may want to spend the extra money to have them put an ice pack in it for the summer time. My last shipment came a little warm and I am concerned about the potency of it now (I am in South Florida, though). I agree that you need a break from the research. Just rely on Scott for a while unless your gut is screaming at you that something is not right about what he is prescribing. Good luck!

 

Stephanie

 

I didn't get the new anti neurols back yet...the others were normal range

 

i have not gotten a postive strep culture in more than 2 years maybe 2 1/2...but let me explain

we would get strep, tic, abx, complete remsiison...8 or so times...

we would get an episode about 3 times a year, i don't think there was ever one , but mayb once, in the summer

since about 7 1/2-8 with new episodes, we would go to docs, ds is presenting with swollen glands, bad looking throat and even though quick culture neg, i would get abx do to sons past strep prone history...and as usual..10-14 days abx..i always thought i could see a softening 24 hours and a real drop 1-2 weeks, gone 4 weeks later.

i never had titers done till this year, onset this time was 4/6/09,,,we have been on the search ever since as we can not find strep, no doc would give us abx....

in the mean time i've tried many things, i just can't listen to neuro's and peds when i've mentioned this correlation more than a dozen times over his life with ds getting sick and tics and no correlatoin (ps we saw a doc on 4/5/09 as ds said he didn't feel good, doc did see swollen glands, etc, but no abx as quick strep was neg and i was ok with that as ds wasn't ticcing,,,but as all of you i was causious when he said he had lumps in his throat) next morning he wakes up ticcinn!!!

 

not till per doc k(then he went MIA) did we find myco p was very high and maybe that was his trigger a year ago....

the day ds started the pollen count was the highest on record till this year!!!

or maybe it was something else...and the more i know the more i realize that for ds it can now be anything!!! especially the the fact that the last 2 years the strep tests were neg....Or is the strep hiding like myco p and hide in any organ, and we just do have that kind of medical information yet..

 

yes faith...ds was much better back then...not normal, but i long for those days...

 

so i am going out on a limb and saying if you get anything above 100 something is not right...and even at that maybe the test is only a double confirmation...

YOU have to know your kid and presentatoin like doc k says...

 

PS ds has not been ill during this ramp up...only that pollen count has gone through the roof...

and we started a abx protocal with doc t in feb after myco results....I MAY HAVE some other correlaton to add to this in a couopole of days