New study TS low IgA?

[kim]

To friends that it may seem I left behind, I didn't!!

 

Cheri, I haven't seen you post much and I know the PANDAS forum is getting most of the action right now (which may actually be giving you a break!) but I want you to know something. So many people are greatful to various Dr.s and reseachers (rightly so!) but I can't help to think of how greatful I am to you. You have kept these forums going with seemingly tireless effort. When the rest of us were off doing our own thing, you were always here, lending your wonderful support and guidance to new parents that are so worried and confused. Look at what an extraordinary group of people that have come together, again, because you never walked away. Didn't matter if there were 100 or 2, you were here. I know, SO many are greatful to you.

 

It seems some really good progress is being made. I was so happy to see this abstract looking at immune system issues in people that don't fit what is currently thought of as the PANDAs profile too (with a little PANDAS comparison). I think there are many things yet to be known about these disorders. Working together, maybe one day there won't quite as many of those new parents and affected children.

 

Cheri, remember my ramblings about genes, chromosomes, impossible pathways? Well, the conversations on the PANDAS forum are making me learn chemisty . Acetylation, hydrogen bonds uhggg. (insert winey voice here). It's just horrible, I tell ya! Since you always liked that stuff, can you pop over and help me out (in other words, i'm still making a horses behind of myself trying to figure this stuff out ).

I sure hope you and yours are doing well!

 

 

http://www.journals.elsevierhealth.com/per...tent/0900729abs

 

Children with Tourette's Syndrome May Suffer IgA Dysgammaglobulinemia: Preliminary Report

[faith]

Cheri, remember my ramblings about genes, chromosomes, impossible pathways? Well, the conversations on the PANDAS forum are making me learn chemisty . Acetylation, hydrogen bonds uhggg. (insert winey voice here). It's just horrible, I tell ya! Since you always liked that stuff, can you pop over and help me out (in other words, i'm still making a horses behind of myself trying to figure this stuff out ).

I sure hope you and yours are doing well!

 

 

...... DON'T GO CHERI.!! She'll make you try to figure out what a gangliosidopopodopolous is!!!!

(I'm still doing my homework Kim, I'll get back to you u...)

 

I thank you too Cheri, for putting us all in touch with so much information and alot of good people to share it with. sometimes things may not work out for me, but I'm glad the info was here and I got a chance to try and get a good handle on how to keep my son healthy. My son still has some issues, yes, but I can say he presents pretty well outwardly to the rest of the world, lol. and I can't help but think that for us, and I think alot of others here, that while we havn't been able to completely arrest this thing called tourettes, perhaps we have at least kept our kids from becoming full blown cases that need to be pumped full of dangerous meds. I'm thankful I have not had to do that, for there was always some other hope. I still like to lend my own help and support to others who come here, for I do beleive there are alot of paths to healing.

 

I'm hoping that there is so much information on this board that many of us and those newbies who come here have loads of things to read that have already been posted and talked about. I think we've just about covered it all. same for those of us who've been around a while, ...is there much else out there that we havn't covered? ..... oh yea, those gaglioduhickies.....thanks Kim.....

 

 

sincerely,

Faith

[samsmom]

I just wanted to agree 100% with what Kim and Faith have said. Without this forum, I would have felt completely lost and hopeless. Traditional doctors, no matter what their specialty, just don't know enough about these disorders. We saw an expert in TS when our son's tics first started (4.5 years ago). He never questioned why his tics had started, never talked to us about possible prior illnesses, never wondered about the lack of family history of neurological issues, just said that it was one of those things and he wasn't bad enough for medication (not that we wanted it anyway). The contributors to this forum, and especially Cheri, became our only guides through this whole thing. Every time I talk to anyone about TS, I always find myself quoting someone from this forum because it's been our only source of information.

 

Having said that, all of the latest articles and new information about PANDAS and immune issues with TS/OCD etc. kids have me very excited for all of us. We have always felt that our son's issues stemmed from problems with his immune system. We have focused for the last 2-3 years on making his life as clean as possible - we have worked on what he eats based on IgA and IgG tests, and of course removal of everything artificial; and used herbs, and then this year, allergy meds for his pollen allergies. We also started him on allergy shots this year. We found thru various tests that he has basically no SIgA in his gut, also, thru a research study that we joined when he was born, that he has some positive antibodies related to Type 1 diabetes, which means he's at higher risk of developing this. We also have no family history of TS or similar disorders.

 

It now seems possible that Sam could be a PANDAS case. By chance, I asked our enviro doctor at our last visit if he knew much about PANDAS as I had been hearing more about it. I never felt Sam was a PANDAS case as he didn't have the typical extreme onset of OCD, which was all I ever read about. He gave us the name of a pediatrician just 5 miles from our home who he had recently heard was taking a keen interest in PANDAS. By chance, a couple of weeks before our scheduled appt. with her, Sam mentioned that his throat was a little sore. He never complains about a sore throat, never has them, so I grabbed the chance to run him down to the doctor and got him checked for strep. Immediate swab was negative and the ped's office called me a couple of days later to say the ASO and DNase B were normal. Having read more on these forums by then, though, I asked for the numbers. It turns out that the ASO level is high, according to our new 'PANDAS doctor' (don't know what else to call her!)

 

So, by chance, we seem to have now found a new avenue to check out. I don't know if it will lead to anything, but I'm anxious to find out either way. As I prepared his history for the doctor, I discovered that he had had a really bad stomach flu type illness a couple of weeks before his first tic appeared. He had then had a chickenpox shot a couple of weeks later. I took him to the doctor a couple of weeks after that with both vocal and motor tics. Looking back now, I remember the separation anxiety, nightmares and anger. I never knew about PANDAS at the beginning.

 

Whether this is a way forward for us or not, we would never have been able to find this path without all of you who are so ready to share information and stories so that the rest of us can learn. I am so grateful to all of you.

 

Samsmom

[kim]

Alright Faith, just because -1,4-N-acetylgalactosaminyl transferase knock-out mice with GD1a ganglioside-mimicking antigens don't rock your world, doesn't mean Cheri wouldn't enjoy discussing it. Sheeesh, I ask you to look at one little ole ensy wensy ganglioside, and just look at how you act. I don't suppose you've even tried to tackle sphingosine yet. chicken liver. I mean, what do you discuss with your friends, if you don't know some of this? Come to think of it, I don't have friends anymore. hummmm, wonder what's up with that?

 

Honestly, the phrase lol, was applicable here when I read your post. My son had to come over and see what was up, because I was cracking up.

 

 

Samsmom, there is some interesting info in your post. Would luv to hear more about that SIgA. What test, what type Dr. which herbs etc?

[Chemar]

((((((((((((Kim))))))))))))))))

you are such a blessing, even when you speak chemigook

 

sorry I have been so quiet. My dh is seriously ill and we are awaiting test results but it doesnt look good. so I just pop in here every day to get rid of the spammers on the various boards and make an occasional post, but am just finding it hard to be communicative right now

 

thanks for the encouragement, Kim, Faith and samsmom. It really means a lot as "paying it forward" has always been my aim here

[faith]

Alright Faith, just because -1,4-N-acetylgalactosaminyl transferase knock-out mice with GD1a ganglioside-mimicking antigens don't rock your world, doesn't mean Cheri wouldn't enjoy discussing it. Sheeesh, I ask you to look at one little ole ensy wensy ganglioside, and just look at how you act. I don't suppose you've even tried to tackle sphingosine yet. chicken liver. I mean, what do you discuss with your friends, if you don't know some of this? Come to think of it, I don't have friends anymore. hummmm, wonder what's up with that?

 

 

LOL LOL......real loud..............

[CSP]

That reminds me, Chari, how is your son after the whole full moon last month. The lady I work for thought the moon was really messing with people, she has had more odd things going on then she has ever seen before. (Long Story)

 

Hope your hubby will be well soon, God Bless.

 

CP

[ilovedogs]

((((((((((((Kim))))))))))))))))

you are such a blessing, even when you speak chemigook

 

sorry I have been so quiet. My dh is seriously ill and we are awaiting test results but it doesnt look good. so I just pop in here every day to get rid of the spammers on the various boards and make an occasional post, but am just finding it hard to be communicative right now

 

thanks for the encouragement, Kim, Faith and samsmom. It really means a lot as "paying it forward" has always been my aim here

(((Cheri))), I'm so sorry your dh is ill! Praying they find some answers quickly and that he will be on the mend. God has a plan so just hang in there and leave it in His hands.

 

Bonnie

[MichaelTampa]

Yes, want to second or third or whatever, how grateful I am for this board, all the wonderful people here, and of course Cheri who help so much to keep it going! Thoughts and well wishes regarding your husand, Cheri!

 

Michael

[samsmom]

Cheri, I'm so sorry about your husband. I hope everything works out OK.

Sue

[CZL]

Cheri,

 

so sorry to hear about your dh, hope everything works out.

Miss you a lot. you gave me huge help, sometime just like on-line support in the past when I was on this board. Thank you, thank you thank you.

I have been being on PANDAS board always now, my son gets improvement a little bit right now, hope he will continue. Moms overthere give a lot of help too. all of you are soooooooo sweet!

 

Take care Cheri,

Jack

 

((((((((((((Kim))))))))))))))))

you are such a blessing, even when you speak chemigook

 

sorry I have been so quiet. My dh is seriously ill and we are awaiting test results but it doesnt look good. so I just pop in here every day to get rid of the spammers on the various boards and make an occasional post, but am just finding it hard to be communicative right now

 

thanks for the encouragement, Kim, Faith and samsmom. It really means a lot as "paying it forward" has always been my aim here

[kim]

Cheri,

 

I'm so sorry that you are going through this difficult time. Please know that thoughts and prayers are with you and your family.

[patty]

I also want to add that i am very thankful for Chemar to maintain this forum so people like myself can find help, information and support. This forum has been my lifeline when i had no where to turn. Also, i am thankful to all who have answered my numerous posts and people who post important information they have discovered along the way.

 

I am forever grateful to this forum and will continue to check in from time to time and share with others what has worked for my son.

 

Chemar, you are an inspiration to me. I am sorry about your husband's health. My thoughts will be with you for a speedy recovery.

 

Pat