3boysmom

Doctor Predicts PANDAS Syndrome in NY Mystery Illness www.youtube.com NYU Internist, and Fox News medical commentator, Dr. Marc Siegel, predicts that the 12 girls in Le Roy, NY who are suffering from a mystery illness causing t...

When or if your child,( hopfully never) gets to a place when you decide you really need to seek a specialist, then you may need to wait for an appointment. You do not want to get in that position! The experiences on this forum seem to be, the earlier caught and aggressivly treated, controlled and monitored, the better chance for full recovery.and less extream & expersive treatment. Blessings Linda

The new contract for "the care" rate at The Double Tree in CT s $129 a night.

Dr L had us treat our dog. She asked us to have the vet use a shot of bysilin. ( phonetically spelled!).

So glad you caught it early, sounds like God placed an Angel in your life! Prayers for continued healing!

My son's writing "struggles" seemed to include OCD -profection issues... Write & erase also intrussive thoughts making him trace over certain letters over and over ( so that in itself frustrated him). Also his inability to focus long enough to write on a topic created him to sit unproductably and then get upset at himself for the waisted time. Depending on what the writing assignment is evaluating.... For instance if it is a creative writing assignment or a narrative type paper then maybe he could tell it into a recorder and you can transcribe it for him. (until he improves) If the assignment is evaluating sentence structue, spelling correct use of punctuation then the teacher may have a more difficult time getting an authentic grade. I hope that makes sense?

Anyone know the predicted weather conditions in CT for next week? We are still in shorts here in Houston.

Is that the same Kenneth Bock that wrote the book: Healing the New Childhood Epidemics. (Aitism, ADHD, Asthma, and Allergies). ? Love that book! I bet it is him because the book mentions PANDAS I bet he is a wonderful and dedicated man!

Bill- so perfectly put! I too think that'autoimmune needs to stay in the name. Why is that such a problem? It is the relation to rhumatic fever. Also look how many of us have lupus and MS and such in the family. Here is my beef with "S"..... Dr. Sweedo used antibodies from PANDAS kids as well as many of the universities that spent last summer replicating her "mouse model". Where did S & K get their test samples from? Any of your kids? I know that our blood went to Harvard and when we went to the A &.M symposium on PANDAS a few months ago, I swear the poor little Harvard mouse that cleaned himself bald must have been given our son's off the chart strep antibodies! We also spent /waisted too much time on doctors that mocked us and put us in our place. Can't believe that we had to end each humiliating bashing by writing them a check on the way out of their office!

I didn't realize that Dr. L did IVIG. When we saw her a few years back, she was sayin, PEX ( plasmosphorisis..... Spelling?). So glad he is doing well- this is a cruel illness! God bless your son for his long journey!

I meant expensive trip! Our other 2 boys (9 & 10) are doing well with antibiotics alone right now, so this time they will stay here in Texas.

We were denied many times, but the ladies in Dr. B's office kept pushing and it went to the top with Dr. And a peer review board. 8 weeks of fighting until they agreed to pay for 1 year. I hope they meant a year meaning 12 months and not calendar or we will not be covered either. Either way...we have a 10,000 deductable, that starts over each January, so this will be an expendive visit either way! Maybe we will see you... Our son is Hunter & he is 12. Best of lusk and prayers, Linda

They told my husband that, that was the new "care" price, but he is going to call them back. Thanks for the heads us "old friends". Will I see you there again tpotter?

We are open to other places, but never extra time to shop around and it is nice to know what to expect as far as location and what's near.

They told us $110.!! We are booked there for the 15, 16 , & 17th.

No Lyme here. Issues with us are strep related. It might not be in the criteria, but the criteria are the main symptoms, does not list all the things we notice in our kids. The question is if we noticed joint pains and the answer is simple and honest. Yes and after reading this forum for over 2 years.... Comes up a lot. My mother in law has arthritis, sister has lupus, other sister has MS, other son got HSP, All have joint pain with flare- ups. Maybe it is a symptom that affects autoimmune issues but I do know people with lyme and other illness also get joint pain. None of our boys mention joint pain anymore now that they have been treated for PANDAS.

Yes, that comes up a lot on this forum. My ds's joint pain has improved since treatment for PANDAS.

I'm sorry, .... but maybe "they" need a good kick in their "CANS"!

You may also find some great help on the two main websites: www.pandasnetwork.org www.pandasresourcenetwork.org depending on how sever and how long your son has been ill, will probably an indication of how hard it will be to get him healthy again. Also will depend of what treatment route you will need. Many, many kids get well with antibiotics alone so do not get discouraged by some our posts. Many of us have kids that went years without the correct diagnosis and treatment and so now many are dealing with comlpications and coinfections. So...many of the members that have become well, are no longer posting and so some of us still here are the more complicated cases. We have all been active in getting the word about this illness out to the media so other kids won't go years and years with the wrong diagnosis, so the fact that a doctor was willing to diagnos "PANDAS" for you (even though it is still not a "recognized" illness YET) is a good early start and hopeful for your little guy! It is very scarry to "loose" you child and many of us parents go through P.T.S.D. But, you can get your child back and then later yourself too, but I won't lie.... it takes time. We are here for you, there are some really smart and helpful people on this forum. Prayers and blessings to you, Linda PS. Can't help with doctors, we live in Texas and fly to Dr. B in CT. So do 3 other Texas families in our support group, so Calif. is not the only state that is clueless with this. While you are trying to find answers, IMHO... Don't vaccinate or give any shots. Learn more first.

Actually I did foget to mention that we also started out with Dr. L to rule out any neuro things. She confirmed PANDAS and added Sydenhym's Cohrea. We then went to Dr B for the immune issues.

I think each child is different and some may be truely on the spectrum and ALSO dealing with PANDAS. However it appears that the characteristics and concerns that we could not explain as he was growing up, were issues and flare-ups from strep (pandas) that made him appear "aspergery". His PANDAS diagnosis was acctually a bit of a blessing, because he was becomming more and more autistic like, but now that we are treating the correct problem, no one would ever believe that he was once on the spectrum. When he has a flare up, his ability to answer questions and his interest in friends and brain fog ramp up... But with time and treatment, things are less and less severe. Not sure were the answers will lie for your child, you may get a pleasent surprise. Blessings, Linda Sorry about spelling- no reading glasses while using an iPhone = danger for my spelling.

Our son was diagnosed with Aspergers at 3. At 9 the sexual intrussive thoughts began along with many of the other characteristics you describe. 2 years later after getting help for PANDAS. He is no longer considered on the autism spectrum.....he had constant ear infections as a baby/ toddler and 2 PANDAS drs believe he was having strep infections in his inner ears and the diper rash that would never clear up....probably strep. Untreated PANDAS can have characteristics of many other disorders and because many doctors have not heard of PANDAS, they diagnos as what it looks closest to.

Our son was diagnosed with Aspergers at 3. At 9 the sexual intrussive thoughts began along with many of the other characteristics you describe. 2 years later after getting help for PANDAS. He is no longer considered on the autism spectrum.....he had constant ear infections as a baby/ toddler and 2 PANDAS drs believe he was having strep infections in his inner ears and the diper rash that would never clear up....probably strep. Untreated PANDAS can have characteristics of many other disorders and because many doctors have not heard of PANDAS, they diagnos as what it looks closest to.

We had myco-p, but 3 different antibiotics did nothing. myco numbers kept increasing with each antibiotic. Dr B said Bioxin usually does the trick but not for our ds. Dr B switched him to Minocycline and that finally brought his numbers down. Each person responds differently, I guess. Best if wishes. Linda

I would get her on antibiotics as soon as posible while you are looking into the homeo. route and waiting for appointments. Another strep exposure could be at anytime and with each exposure, things get worse! I wish I could send you some of our Augmentin XR to try, but it is "priceless" and much needed with our ds. Make sure that you whole family is cleared from being "strep carriers". Our PANDAS kids react to strep in the enviornment without even needing to have the infection themselves.