justinekno

Glad the appt went well. We had a similiar problem with our labs in that they neglected to do the pneumococcal tests. We'll go back to the lab and try to get them in time for our appt next week. Is that the same test your daughter had trouble making antibodies for? Did Dr. B. mention IVIG to you at all?

Thank you. This is good information. I will look into it.

We are waiting for our Igenex test results (should get them next week at our appt) so I was kind of jumping the gun a bit and seeing how IVIG plays out if you have Lyme. Just getting prepared for that visit next week!

Thank you. That would make sense. From others who also have lyme I have heard the lyme docs say to clear the lyme first. s

Will they send you a letter stating that they don't require preapproval for the specific procedure? We had an experience where our insurance company told us we had met our out of network deductable (the online info showed that we had too) but when I submitted for reimbursement for an out of network provider, we were told we hadn't really met the out of network deductable and that they had corrected the error on the website (I wish I had printed it out earlier). We are now appealing based on being told incorrectly but I'm not sure how successful we will be. I wish I had gotten something in writing before we went through with the appt. But how? I tried pressing the woman on the preapproval line (not member benefits) and she stated flatly several times that it was not required.

Can you treat Pandas with IVIG if you have Lyme too? Or does the Lyme need to be cleared first?

I have a sister in Utah whose son (12) started exhibiting rages and severe ocd overnight. I suggested she get him tested for strep but the dr only did a culture (no bloodwork) and gave my nephew a prescription for prozac. I still think he could have PANDAS but my sister believes the dr. I wonder how many other cases like that are in states where it shows no cases.

Good to know. Thanks. I wonder if that's just a standard line bc it's quicker to vaccinate than check titers.

Can you get a dr (maybe Allergy Immunology doctors with DHMC Manchester) to say that there is no other specialist in your area (network) that treats PANDAS and therefore you need to see Dr. B? Our insurance company told us we could go that route when we were trying to see Dr. T. who was out of network. They said it's usually approved if the request comes with a letter from the dr who can't treat the illness.

Cool! I like that! Happy 4th!!

I think I read somewhere that if you can't prove you have had the tetanus in a certain period of time (is it 7 yrs?) and you get cut then the hospital will give you the vaccine anyway because it would take too long to check titers to see if you are still protected. Would it make sense to wait and do the vaccine only when you get cut or should you have it as a preventative? I can't remember the last time I had a tetanus shot.

When we got our dog last year (as a puppy) I was very strict about her vaccines (there were so many for a puppy), it was SO stressful! My vet was great about spacing out the shots and our breeder guided me through alot of it but if it hadn't been for my son's experiences with vaccines, I wouldn't have been so concerned. It was like having another child! I just feel sad that I didn't learn the lesson the other way around

I'm trying to understand this and perhaps someone has some explanation that I can't figure out. Why would symptoms vary throughout the day, and occur more during a certain part of the day? If the blood brain barrier is breached, shouldn't the symptoms be consistent throughout the day?

My son's main symptom is a tic. This tic seems to be more prevalent when he first wakes up. It has definitely improved somewhat with antibiotic use but the morning is still the peak time for the tic. Does anyone see any similiar patterns?

My vet was telling me the other day that it is common to check the titers of pets to see if they need their vaccine. I thought it was interesting that checking titers on a dog was "acceptable" but not so much on a person.

Our dr advised us to sit tight right now and not do any vaccines until my son's immune system recovered and was no longer "hyper" (we did all required vaccines until age 8). We will also check titers to see what, if anything, is even needed. My son is looking to return to school next year after being homeschooled for two years so that will be a fun bridge to cross. I haven't had to worry about that until now. I have to look into our state's guidelines for exemption.

We saw Dr. B. and really liked him. He was our third opinion (but first immunologist) and I found it to be a very helpful visit. He took his time, looked over all of our paperwork, and did not rush us. He may not want to order more bloodwork until he sees your son and gets the chance to review and discuss the tests you have already done.

At this point, we don't know if we are treating Lyme or just PANDAS. I will get the IGenex test results next month when we meet with the dr. I'm just nervouse about using it long term. Especially since we have some liver issues within our family. I guess we will just have to see how the test results come back before we can really strategize. I will also suggest we do a liver profile too.

Nope, I'm there too! Hopefully some veterans will help us understand.

For those who have used Biaxin and had success, what was your next move? Due to the potential side effects of Biaxin, we obviously don't want to stay on it long term but we have seen improvement after two weeks of use. We tried Penn, Augumentin, and Zithromax (low dose) with no sign of improvement. We follow up with the dr next month but just curious what others have done.

This is good information. Thanks. I saw this quote on the first sheet about the zinc issue. Seems like to play it safe, antibiotics should be given two hours away from anything - except food if instructed or if stomach upsets occur. "The oral absorption of tetracycline and quinolone (for example, ciprofloxacin) is reduced when taken with milk or zinc, iron or calcium salts. These should be taken two hours apart."

I was always told that the CD57 isn't accurate when done on kids. Also, some doctors don't believe that the CD57 in general has much weight. One dr told me it can be normal for the numbers to be low bc there aren't that many natural killer cells in the body to begin with. Do you suspect Lyme? I just had this test done for myself bc of Lyme issues. I'm sure some of the Lyme experts on the board know better than I though.

What great news! Your determination and hardwork is really an inspiration to all of us moms who are fighting the fight for our kids.

I'm curious too. We do magnesium supplements. Did you read it somewhere?

I would be willing to travel down to the shoreline or Trumbull, either is about an hour from me. Did anyone ever speak to Lynn Haber - the contact name on the website?