Kay
-
Posts
162 -
Joined
-
Last visited
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by Kay
-
-
Bumping Just want to make sure everyone gets a chance to see this who may not have been on the board over the weekend.
-
Myself and one other Connecticut mom (so far) will be meeting in Clinton CT on Thursday, March 29th. If there is anyone in the area who would like to meet with us please PM me and I will let you know the time and place.
A chance to get together to chat and share, nothing formal. Hope more can join us!
I know there is at least one other Connecticut mom I have spoken too about getting together and I have deleted the message by accident, if you see this I hope you will join us.
Kay
-
Found this link dated today on the Batavian facebook
http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364
-
I sent you a PM
-
norcalmom,
Good for you and your son! My daughter who was being treated with Augmentin 1000 xr was doing very well, most of the OCD along with other symptoms disappeared. She still had some lingering OCD though and it was not till we added Biaxin to the mix that the final OCD left.
She never had any high strep titers or strep symptoms, but her mycoplasma IGG was high on the lab test. (different scale then yours but high) Her Igm was negative.
I had written to that doctor you speak about with the gulf war syndrome he did say that Igg should be treated, he was careful not to say what I should do but that positive Igg and negative Igm he would treat.
We had it tested only one other time the number had dropped a bit, but was still in the high range, she had been on augmentin but not the biaxin at that time if I remember correctly, we never did check it again. I think I had written some place in here about it when we were trying to figure out whether to treat or not.
Hope the new antibiotics do if for your son! It really made all the difference for her!
Kay
-
Was just venting then thought better of it on this forum. You don't need to hear it
Sometimes it just helps to write it all down and then erase. Hope you feel better!
-
We found out about high igg mycoplasma in December of 2009. We did not treat this until September of 2010. No doctors at the time thought we needed to. We had only high IGG, IGM was normal. We treated with Biaxin for one month and it seemed to get rid of the last of the OCD issues. My daughter was being treated with augmentin (with great results)and remained on the augmentin while taking the Biaxin.
-
My mom and sister recently picked this free magazine up at a local heathfood store. Natural Nutmeg (Connecticut) Inside is an article on Pandas written by Gail Szakacs, MD and Nancy O'Hara, MD (I believe I have seen Nancy O'Hara on the doctors list, they are in Wilton CT.)
Nothing really new in the article only thought maybe another resource for some who had not known of these doctors and to show that the information is getting out there.
Here is the link to the magazine online, the article is on page 34 and 35.
Kay
-
What dose on the Augmentin, maybe someone else can help but I think sometimes it depends on the does. 875 worked for us in the beginning but later it did not help at all had to go to the 1000xr. Just a thought.
-
We used Biaxin (Clarithromycin)
-
Well, today is my DS14's last day of junior high school, and his 8th grade graduation ceremony is tonight. We're so proud of him and he's been through so much during his junior high career that tonight is a major milestone.
Just as a recap, his first major PANDAS episode occurred the spring of his 6th grade year, and we spent the better part of 7th grade trying to recover and get a grip on what we were dealing with. After nearly 7 years of a "purely OCD" diagnosis and treatment protocol, those interventions failed us big time in the face of DS's decline in May of that year, and it wasn't until we found PANDAS and started abx in October of the following fall that we began to see real recovery.
We've had our ups and downs ever since then, but given DS's entry into pubescence, the increasing academic demands of school, the increasing social demands of contending with his OCD/anxiety when among his peers, etc., overall, I think he's has done really well. After having to be homeschooled for several months of his 7th grade year and going to school only part-time for another chunk of that grade, he's been in school the entirety of this 8th grade year, pulled straight A's, and even managed to have some fun along the way. He began another pretty powerful exacerbation this past February, after a strep-filled winter season, and we only began to see him regain some ground again as of this past late April. He continues to gain, and we're cautiously optimistic now. The work, therapy, meds and supplements continue!
DS came home with his yearbook yesterday in which he was named by his class as both "Most Likely to Cure a Major Disease" and "Most Likely to Become An Activist," and I just found out last night that he was asked to give his class's commencement speech tonight, but he passed on that opportunity; he said that he's afraid he might become overwhelmed and then have trouble following through, and he thought they should select someone "more reliable" for that honor.
I would've been SO proud to see him give that speech tonight, but I'm equally proud that he knows himself that well and is willing to be so honest about his own challenges and put his classmates ahead of himself in his consideration. I'm one proud Mama! Thanks for all your help these last two years, and for letting me brag a bit today! All our kids deserve a good, loud, joyful celebration now and again! Here's wishing everyone a peaceful, happy summer!
What a great post! Have a wonderful night and congrats to DS14!
-
I guess I should answer too.
My side of the family, Type II (adult onset) - On my Mother's side it's far too many...herself, her Mother, Grandmother, Aunts, Cousins, Brothers, and my Brother.
My husband's side, Type II - His Grandfather, and His Mother.
Type I, My Husband's sister.
We're just PANDAS here.
Can't believe I forgot to add husbands side of the family his dad was a type II diabetic also.
-
Could you all indulge me in answering a few questions, Please.
What is the incidence of Diabetes in your family? Type I or Type II? Was anyone "insulin resistant" for a long time, but not need medication right away?
Also, could you please indicate if you think you are dealing with PANDAS/PITAND or if you believe that Lyme is a factor too?
This article and subsequent google searches have me thinking:
Thank you so much.
My sister has diabetes and it is a gray area (whether type I or II), wasn't found till she was 37 but they think possibly she may have had at a much earlier age. She is considered though now as Type II she is insulin resistant could only use oral meds for awhile before having to go to shots of insulin. I suppose it is possible that she was insulin resistant for quite awhile before she was dx with it and started taking meds. My grandfather was Type II diabetic. My daughter is Pandas/Pitand.
-
We found that not until my daughter was on the antibiotic for awhile was she able to look back and see how sick she was, and it didn't happen all at once. Still there are days we talk about things that happen and she can say she didn't know or feel that at the time etc.
I think not till they start some sort of healing can they come to realize how much this has taken over their life.
Wanted to add that she was 19 when we got the dx of Pandas so I don't even think age makes a difference until the healing begins.
-
I vote for this one: "I may just be a Google MD, but my PANDAS research is more up-to-date than yours is!"
-
Myself and one other Connecticut mom will be meeting in Clinton CT on Thursday, March 17th. If there is anyone in the area who would like to meet with us please pm me and I will let you know the time and place. Just a chance to get together to chat and share, nothing formal. Hope more can join us!
Kay
bumping - just in case others in the area or anyone new to the board and lives in the area hasn't seen.
-
Myself and one other Connecticut mom will be meeting in Clinton CT on Thursday, March 17th. If there is anyone in the area who would like to meet with us please pm me and I will let you know the time and place. Just a chance to get together to chat and share, nothing formal. Hope more can join us!
Kay
-
FYI, there was a similar thread on here just over a year ago: http://www.latitudes.org/forums/index.php?showtopic=5963
I never had the guts to respond to that one. I pretty much try to block my teens out of memory because it was such a painful time. But I'll 'fess up: yeah, since we found out what our oldest son is dealing with, it sure clarified some things from my own youth.
I was sick all time, caught every bug that came along, had tubes in my ears due to chronic infections, had T&A due to chronic infections. At age 10 or 11, I remember that suddenly everything just fell apart. I recall sitting in class, barely able to see straight because of constant headaches. Out of nowhere, felt a relentless state of heightened anxiety (bordering on agoraphobia) for no good reason. Very OCD-ish about schoolwork and grades. Withdrawn from former friends and social life. Seriously considered suicide.
I hate even thinking about those days now. The "cloud" shrouded me from 10 until mid-twenties, I guess, although things did start to improve after that. I've never spoken to anybody about this, not even my parents. Back then, people just didn't talk about psychiatric problems. The stigma was huge. I remember doing everything I could to hide the inner turmoil from family, friends, teachers, etc.
And - about 20 years ago - I was diagnosed at Mayo with Crohn's disease, an autoimmune disorder. I don't believe that's coincidental.
On the positive side, for our brave teen posters (EA, emmalily) - things did get better over time even without any kind of treatment. And every year since has been better than the last. With proper treatment, PANDAS doesn't stand a chance against you!
(Deep breath....) If you're reading this, then I guess I finally found the guts to press the "Add" button.
Worried Dad I feel your pain. So glad you got through it all. I too don't think the Crohns is coincidental. Thanks for giving Emmalily hope as it is always better coming from someone other then your parent!
-
I am Emmalily's mother and I believe now that I had Pandas too. Mine though seem to come in my early twenties.
I know someplace under my content on this board is more detail so I won't go into that.
History: My dad we think had RF when he was 16
My sister had a ton of throat infections when we were growing up, I never seemed to get sick that way.
At around age 18 or so I had impetigo, and somewhere in my early twenties.
I became sick for about 8 years with what I now know was severe separation anxiety, ocd (checking issues,
and intrusive thoughts) and anxiety.
I have had step since I have felt well and do not remember it bothering me other than the sore throat.
I don't remember it having any effect on Emmalily at that time either, but she was young and she said she
does remember from age 4 or so that she had some ocd issues but they did not prevent her from anything
always thought they were just quirks. So hard to tell if my strep may have bothered her.
I feel well, I did struggle for 8 years, was well for three before becoming pregnant with Emmalily had a
great pregnancy and small set back after her birth, but nothing like the first time around.
Now I only see glimpses of it when I don't eat well, I clean up my diet and that seems to get me back on
track. Nothing too heavy. I don't notice it when I am sick at all that I can remember.
-
Happy dancing here for you!!!
-
When I was nursing my daughter and had to have my gum disease treated they did test the bacteria to see what it was and what antibiotic would kill it and not harm her (so they say)
-
Here's another Staph story. Daughter had been feeling good (no previous problems that we knew of) went away to a summer program 4 days after being there was a mess. Called to come home couldn't stay, GI symptoms etc. This was well before we knew about Pandas. Once we learned what had been happening all these years, looking back she told me the girl she had been hanging out with for the past 4 days was recovering from a staph infection. Daughter seemed to rebound after that the whole summer was good and was then exposed that winter to strep that caused us the most problems.
-
Daughter 19 soon to be 20 dx with Pandas December 2009. Large exacerbation at 17 one that made us stand up and take notice. In researching since then we have found that she probably had issues much younger, but nothing that interfered with her life at all and did not really kick in until exposure to strep at 17.
High Mycoplasma Pneumonia titer Igg. No high strep titers. Cunningham test camK 174
Also was ill after a vaccination at an early age. We are not sure where this all began can only guess.
Treatment so far has been abx. Lower dose Augmentin in the beginning also tried Omnicef. Both worked well, first dose of Augmentin really cleared a lot for her.
Now on Augmentin 1000xr and also just finished 28 days of Biaxin for the Myco P.
-
Just wanted to add our experience, my daughter who is now 19 but was 17 when she became ill. It was after exposure to strep, about 3 or 4 weeks later she fell ill with severe separation anxiety among other things. We did not get a dx or start treatment until she was 19, this past December. We do feel now also that with all the history we have had to give that she did have some tendencies way back around the age of 5 but nothing that she experienced throughout that time 5 –17 kept her from living her life, so her biggest exacerbation was at 17.
We have been treating with antibiotics since December. She continues to improve. She did not show high strep titers but did have high mycoplasma pneumoniae Igg. She has been on augmetin different strengths and also omnicef. All were helpful for her, the first augmentin she said was like she just woke up finally. She is currently on augmentin xr 1000 2 x day along with 28 days of Biaxin, she will discontinue the Biaxin once the 28 days are up and remain on augmentin for now. She has also seen improvement since adding in the Biaxin.
It really seems to be individual at what works for who. So far we have not done IVIG or steroids. Hoping that the antibiotics will do it for us. The other thing I will mention and dcmom mentioned this, time really seems to be a factor. My daughter has not been in school for the last 4 years. After the strep exposure which was in January, by April she was out of school, rested that spring and summer and attempted senior year for a couple of weeks before getting a cold and everything came back and made it hard for her to be in school, she did school from home online. Again in the fall ready for college and had a vaccination and seemed to spiral again, took medical leave and this year we just decided to postpone this year as she seems to be doing pretty good and really want her to heal. Please note she did not have dx or treatment until after taking medical leave last fall...so all her attempts were while she was untreated.
Just our experience, hope you can pull something from here to help your daughter.
I would've been SO proud to see him give that speech tonight, but I'm equally proud that he knows himself that well and is willing to be so honest about his own challenges and put his classmates ahead of himself in his consideration. I'm one proud Mama! 
Taking Care of Yourself
in PANS / PANDAS (Lyme included)
Posted
A good read, thanks for posting.