3boysmom

We live in Texas. Thank you, Linda 3boysmom

Well I can not believe we are now going on a year of dealing with this illness! Our ds10 has come a LONG way since a year ago. He has been on Augmentin XR 1000 twice a day for 6 months now. After trying to figure all of this out and teach the local doctors here in Texas (familiar story-Texas needs help with this)...we finally decided that it wasn't worth the wasted time and we went to see Dr. L. in Maryland last month. She confirmed what many of you have said about a high sibling rate with this illness. Well when the 10 year old son got PANDAS, the 9 year old son got HSP, and the 8 year old son began head tics and attention issues....not good signs. She advised us to get the Cunningham test for all 3 boys and titers tested for all 5 of us. Also the 10 year old already has his tonsils and adenoids out, but the other 2 are scheduled for Nov. 17th for both of them to have T & A surgery. (And the dog has been treated) She does not want our ds 10 to begin the steroids until after the Cunningham test. Well the test kits arrived 3 weeks ago...the pediatrician is NOT acting on the request for lab orders. THOSE OF YOU WHO HAVE HAD THIS TEST RUN...PLEASE ADVISE ON THE STEPS TO FOLLOW! 1. Do we call the Lab and make our own orders? (Quest...Lab Corp?) 2. Do the 5 of us just show up with the test kits and verbal requests/emailed directions (from Cunningham's Lab) for tests? 3. Can we request one blood draw for the 2 different tests (1 for Dr. Cunningham and 1 for the titers)? (Is it easier to just make two different lab visits-because the Cunningham blood needs to be "spun"?) 4. Where do the titer's tests get sent to? (Cunningham? Latimer? Pediatrician?) We need to act on this soon because the T & A surgery will be soon and they need to give more blood for that. Also our ds10 really needs to begin the steroids as Dr.L thinks that he was sicker than we knew and that the antibiotics alone are not enough for him right now. Thank you all in advance...what would we all do without each other? Linda S. (3boysmom)

I had posted about it originally. I did try it for a while and I cannot say that it hurt or helped our situation. I think disinfecting the house regularly is a good idea, and you also have to make sure the kids' skin is in good shape. But if your kids are having recurrent strep, I would look into getting everyone checked for Lyme Disease, as it seems to be our case. I posted an interesting article about this recently. If you google "lyme disease strep", you'll see what I mean. I did not find any specific research but many posts from people talking about recurrent strep, strep that would not clear (that is my case at the moment), etc. Please, please, please, do not discard this possibility if your family keeps getting strep. My kids kept getting it (mostly WITHOUT symptoms) and now we are at the point where even the pediatrician, after a year of me going in over and over and the kids always having something (strep, ear infections, impetigo), has finally agreed to prescribe antibiotics for everyone for 30 days. We had tried before doing everyone for 10 days, but it came back. Even though our pediatrician does not know much about Lyme, she agreed with my own dr's theory that it's probably Lyme. Even though it's not anything to be happy about, I am hoping with the right treatment we will be able to end this crazy cycle! Crazy cycle is right! That is why trying a mild bleach bath sounds like no big deal when you are trying to get ahead of strep. especially strep you can not find. I will look into the Lyme. Good luck clearing the strep from your family! Thanks

Thank you, I will be looking into this! Doing nothing and waiting for what seems to be the inevitable...is not an option!

I guess it is good that I did post this after all. First I did not say to bathe in bleach....1/4 cup in a garden tub of water. Second, if we were told about this from one of the BIG PANDAS doctors, then I'm sure that it was mentioned to many others. Finally, it does sound better than doing nothing about the strep in the non-PANDAS brothers and just waiting for them to turn into full blown PANDAS. This is the sugestion given to me when I asked "how can we keep the others from getting PANDAS if the test for strep always comes back negative? (They obviously had strep...one got HSP.) She said "strep hides in all kinds of places" and suggested the bleach bath. Our pediatrician is not going to give antibiotics to the brothers if the strep tests show negative. How can I keep them from getting strep in other places? At this point I would rather the child with the mild tic, have an increase of ticing than go into the full blown ###### his brother has had to live.

We just got back from Maryland where we saw Dr. L. for our PANDAS son. After discussing the ds10 and his PANDAS we mentioned the 2 brothers (almost 8 and the other 9.) Mentioned that the 9 year old son has eczema and soars in the nose that never heal and also got HSP (illness from strep) at the same time as ds10 got PANDAS. Mentioned that the 8 year old has head tics that have gotten worse when this all began in Dec.'09 with ds10 (and they were all sick with what we later found out was asymotomatic strep). Unfortunately, she confirmed that the sibling rate is very high....we will get Cunningham tests for all 3 boys. I did want to mention that she suggested Bleach baths for the boys. She said to put a half or quarter cup of bleach in the bath water and that it was great to kill staph or strep (on the skin or else where) she said that it helps to get in their sinus cavities when breathing in during the bath. I Googled it and the research I read did absolutely confirm what she said. I am off to buy stock in Bleach. (Please Google the directions, so as to not harm your child in anyway!)

We just got back from Maryland where we saw Dr. L. for our PANDAS son. After discussing the ds10 and his PANDAS we mentioned the 2 brothers (almost 8 and the other 9.) Mentioned that the 9 year old son has eczema and soars in the nose that never heal (also got HSP) at the same time as ds10 got PANDAS. Mentioned that the 8 year old has head tics that have gotten worse when this all began with ds10. Unfortunately, she confirmed that the sibling rate is very high....we will get Cunningham tests for all 3 boys. I did want to mention that she suggested Bleach baths for the boys. She said to put a half or quarter cup of bleach in the bath water and that it was great to kill staph or strep (on the skin or else where) she said that it helps to get in their sinus cavities when breathing in during the bath. I Google it and the research I read did absolutely confirm what she said. I am off to buy stock in Bleach.

Could it be HSP? (autoimune illness from strep)

Just now while I was posting our Texas support group, our ds10 yells down the stairs, "Mom, I have a sore throat!" He is on Augmentin XR 1000 x2. Can you get strep on such a high dose of antibiotics? If so, then what do you add? He has been improving with Augmentin XR over the last 4 months, so I don't want to remove...just add. Is that an option? Our appointment with Dr. L. in Maryland is not until Sept. 15th. Thanks again, as always, Linda

No flu shots for us either. Last year, before we knew that we were dealing with PANDAS, our ds10 (9 at the time) had odd behavior reactions the next day. He was complaining about the uneven paint color tone on his wall and very upset about that. We had no idea what happened, only that the day before this, he had gotten the flu shot.

A PANDAS Support Group meeting will be held Tuesday, August 31st from 6-7:30pm at the Montgomery County South Regional Library, 2101 Lake Robbins Drive, The Woodlands 77380 (Next to the Cynthia Woods Mitchell Pavillion.) Please "Personal Message" me if you are interested and I will see you then!

OK Emerson....Today is the 4th!! I have been checking each day to see if your appointment has been made. Don't make me come there, which is what I really want to do right now! Prayers for you each day and prayers that the doctor that you do see will listen to your knowledge and advocacy (spelling?) on behalf of yourself. Do you know your school nurse very well? Our school nurse (here in Texas: Woodlands, Conroe, Spring, North Houston Area) is starting up a support group for us in this area because she has seen (from our son) what this illness can do first hand. She is trying to get the head nurse of Texas to address PANDAS in the nurses conference. Maybe our nurse can get in touch with your school nurse. Maybe from there, you could happen to "not feel well" and your school nurse could call home and begin the conversation of a doctor visit. I know that is a REAL stretch, but I hate that you are not receiving any treatment still after such a long time waiting for help! Please let us know what step dad says. Prayers and blessings, Linda

Ditto...don't waste time figuring it out...go seek help! We too have an aspergers diagnosis and now PANDAS!

Did not breast feed. Stayed 2 extra days and worked with the "breast nazi" (husband's nick name for her-lady that comes in your hospital room and helps with nursing your baby). Ds would not have anything to do with it and was allergic to regular formula....was on nutramagin (spelling?) We called it "liquid gold" (expensive!!)

Look at me post from my iPhone! Thanks Nancy! Linda

But it is just another story of hope. A great out come in the long run. We always wonder what happened to those kids in Swedo's study and it is just her story.

Thanks for the tech help. I can count on you all for all kinds of answers!

Ok, I still don't know how to post a new topic from the iphone, but while playing with it and eating a cookie at the same time...a cookie crumb fell onto the screen and when I went to wipe it off...the reply button appeared! So now I know that if I am reading someone elses comments, I touch right on the screen and the reply button pops on the bottom of their comment. Haven't tried to reply yet but it is the first time that I saw a reply button. If I can't communicate with you all, I may have withdrawals. My ds10 just came in and told me, "mom in case I haven't told you lately...I love you...I mean I really love you!" So worth this fight...no matter what it takes!

We are leaving for vacation and I haven't figured out how to access this forum (besides just reading) from my new iphone. Is there a way? Warning- I am tech. challenged.

.Actually, I have never contacted this lady and just saw the website 5 minutes before posting it here. I heard about it because my teacher's assistant was at a yard sale 10 minutes from my house and the home owner (not the family in the website) said she was down sizing due to a stupid illness from strep! My teacher friend asked "PANDAS?" and the owner almost fell over. My teacher's assistant told her about us and the lady called me. Her son did IVIG with Dr. K 3 years ago and the son is now 15. He is much better than he was 3 years ago but got sick a few months after IVIG and he had a relapse. He continues to struggle and is on many different medications. His older brother is in college and plans on becoming a doctor. Maybe the family members, PANDAS children themselves, or siblings will be the ones to conquer this illness in the future! I will meet her when we have our first support group at the end of the month. (We began with 2 people meeting and sadly our little group is growing at an alarming rate and we have not even met or advertized yet!) So far it has all been freak chance meetings or divine powers connecting us. Anyway the home owner did not have blogs or websites to help her 3 years ago, but did find this link that I posted earlier and that lady from the website was her "angel" Don't mean to sound confusing (trying not to use names). The girl in the website link did Plas...(PEX) through Dr. Swedo's study. She got much better until she got a vaccination and then she did not get better with the second PEX. I did see that they battled with many things for 8 years but she is well now and on NO medicines! I do want to know how they eventually got her well. I do want to contact her but we leave for vacation in the morning. How do you type on this forum from an Iphone? I think I will post that question.

Here is what I found when I Googled: http://www.rymattwellness.com/products/genzyme/diagnostic_test_kits__strep/osom_strep_a_test_-_50_per_bx.htm

As much as I have searched Google and Bing, I never saw this link. Was just shared with me by another PANDAS mom that I discovered lives 10 minutes away! What is happening in Texas? ( i think that the girl in this story is also from Texas. (not sure) Her onset of illness story is almost EXACT like our's. Just change the names and there you have it. http://e-pandas.com/

Awesome!!! What did Dr. Cunningham say?

I am going to Google that right now!!!! Do you get them at a pharmacy or on-line? I definitly want those in our house!!! please give more info..off to Google.....