New and Overwhelmed Please HELP!

[Blessedwifeandmom]

On October the 14, 2006 my son the then 8 years old woke up one morning with a tic in his neck. He would shake it back in forth. His personality changed as well. I immediately thought he had a brain tumor or something neurological and took him to the doctor. They sent him for a CAT scan (which was normal) Then to a neurologist who said maybe Tourettes but more than likely it was just an anxiety disorder and sent us out of the office with a prescription to Zoloft (that we never filled) His symptoms got worst at different times, but we homeschool so we were able to avoid putting him on medicine. Long story short, after 4 years of dealing with OCD, Sleep problems, Unreasonable, Fears, Tics, Compulsions, Intrusive thoughts, sensitivity to loud noises which seemed to get worse every time he got sick, especially every time he tested positive for STREP. In fact in 2008 the doctor said if he has another Strep infection that year we might want to consider a tonsillectomy due to the recurrent infections that year. That is when I began my research in P.A.N.D.A.S. and the symptoms matched him perfectly.

 

Fast Forward to this year

In August we went to Disney World and the day before we left he complained with a sore throat so I took him in for a Strep test just to make sure. It came back negative but I asked the doctor at the appointment if he had heard of PANDAS and he had, but definitely considered it controversial. He said he would culture just to be sure it wasn't strep and would call if anything grew but it was negative as well. That was August 20th or so. We went on our trip and lets just say his tics and compulsions were the worst they had ever been the entire trip. Maybe it was the excitement of vacation but he wasn't feeling well the whole time either.

 

On Friday, October 15th, I took Christian to see the doctor again due to a rash on his neck. I thought..GREAT he has Scarlet Fever..I missed the STREP again, like I did when he was about 7 years old. Anyway I told the doctor I think he has PANDAS and she agreed to test his ASO Titers. She also did a throat culture but really didn't think the rash was Scarlet fever. The results came back today- Throat Culture negative but his titers she said were high 323. She said the high side of normal was 150 so he has had Strep in the last few months. That's it..NOW WHAT! Does anyone know of a doctor in Tennessee or close to TN. I don't know what to do next. I'm desperate. I have read a lot of the threads on here and I'm so overwhelmed with all the information.It's a lot of great info but what should I do next. I guess I need to find a doctor close by who recognizes PANDAS and treats it. IS it normal to have high ASO with 2 negative throat cultures within 8 weeks? I know this post is really scattered. I just have so many questions. Any help would be appreciated. My son is now 12 years old and I'm scared I have waited too late.

[peglem]

This is a scary disorder, no doubt about it. Its never to late to start treatment. I believe (although I might have my geography mixed up) that Dr. Beth Latimer, in Bethesda, MD, is you're closest PANDAS "expert." She is a pediatric neurologist and very, very good. I placed the quotes on expert because even those doctors who have been treating PANDAS for a long time are still learning about it. But, if you are serious about getting treatment quickly from somebody who understands PANDAS better than most docs, she would be one you should consider going to see.

[peglem]

Oh, where are my manners? Welcome to our family. We will help you however we can!

[kimballot]

Dear Blessed -

 

Welcome to our forum. I did not find your post scattered. In fact, it made perfect sense to me. Twelve years old is NOT too late to get treatment. I had a similar situation in January when my son was 12 1/2. He is now 13 and doing very well, though this does require management on both his part and my part. The biggest key is that now we interpret things through the lens of PANDAS, rather than through the lens of "No one knows what this is and it doesn't make sense"... so we are able to spot symptoms very quickly.

 

I agree with Peg that Dr. L is probably your closest PANDAS expert.We do not use her, but I've only heard wonderful things about her and I would not hesitate to use her if I lived close to her.

 

I would call today to get an appointment with her. You will likely have to pay out of pocket, so you should ask about insuranc and then your next phone call should be to the insurance company to find out about coverage.

 

When you call Dr. Ls office you can also ask if she has a list of bloodwork that she recommends. Perhaps you pediatrician could order that before you go (it is also good to get the bloodwork while your son is in an exacerbation).

 

I wish you all the best as you start this journey.

[Blessedwifeandmom]

Thank you all so much for replying. I have a few more questions. Does Doctor L in MD. order the bloodwork through your ped. in the state you are in and then get the results before seeing you. Do you have to travel back and forth a lot. That could get really expensive! I would refinance my house to help my son to get better but I'm just wanting to find out the best way to do this. Thanksagain so much. This forum is a God send!

[Blessedwifeandmom]

My son definitely has the OCD and Tics and they never totally go away, but definitely get worse when he is sick so does this mean I need to wait until he is sick to the bloodwork. Right now he has been sick, his ASO were high but I don't think he has Strep at the moment. He did call from his homeschool tutorial yesterday and said he was nauseous and headachy which happens a lot because he has a fear of throwing up. So when he gets nauseous he will have unbelievable anxiety attacks, shaking all over and crying. so I guess what I'm asking is do I need to wait until he has a really bad exacerbation to get blood work done. Thanks again for you reply.

 

Dear Blessed -

 

Welcome to our forum. I did not find your post scattered. In fact, it made perfect sense to me. Twelve years old is NOT too late to get treatment. I had a similar situation in January when my son was 12 1/2. He is now 13 and doing very well, though this does require management on both his part and my part. The biggest key is that now we interpret things through the lens of PANDAS, rather than through the lens of "No one knows what this is and it doesn't make sense"... so we are able to spot symptoms very quickly.

 

I agree with Peg that Dr. L is probably your closest PANDAS expert.We do not use her, but I've only heard wonderful things about her and I would not hesitate to use her if I lived close to her.

 

I would call today to get an appointment with her. You will likely have to pay out of pocket, so you should ask about insuranc and then your next phone call should be to the insurance company to find out about coverage.

 

When you call Dr. Ls office you can also ask if she has a list of bloodwork that she recommends. Perhaps you pediatrician could order that before you go (it is also good to get the bloodwork while your son is in an exacerbation).

 

I wish you all the best as you start this journey.

[Blessedwifeandmom]

Thank you for the information. Do you use her and what has been your experience?

 

This is a scary disorder, no doubt about it. Its never to late to start treatment. I believe (although I might have my geography mixed up) that Dr. Beth Latimer, in Bethesda, MD, is you're closest PANDAS "expert." She is a pediatric neurologist and very, very good. I placed the quotes on expert because even those doctors who have been treating PANDAS for a long time are still learning about it. But, if you are serious about getting treatment quickly from somebody who understands PANDAS better than most docs, she would be one you should consider going to see.

[SarahJane]

Depending on where you are in TN, Dr. K in Chicago might be closer. He'll do a phone consult. (I'm in central KY & am using him...IVIG next month for ds(6).) There are some up front costs for the consult, but they'll send you an invoice to submit to insurance. You do have to coordinate prescriptions & such with your own drs...hopefully, you have some that will work with you regarding the PANDAS. Good luck!

[mom love]

Blessed mom, What antibiotic is your child on now? From what I see on here the wait for Dr. Latimer is long. You should get the appointment today and talk to your current pediatrician to see if she will extend the antibiotics for as long as you can. Print out information from the helpful threads here and give it to your doctor, buy the Saving Sammy book and give her a copy to keep. Motrin can help as well. Keep reading and posting.

[lyme_mom]

Sensitivity to noise is often a sign of Lyme disease and Lyme can look exactly like Pandas. I would have your son tested for Lyme as soon as is possible using Igenex. Dr L is not a Lyme expert so make sure you cast a wide net to find all the possible causes for your son's symptoms. I have an excellent llmd who works near dr l in dc if you want the name. It's never too late and all kids can recover from Lyme (if lyme is involved). Lyme is an epidemic from coast to coast so it should be one of the first things that is considered, especially in a young boy (boys ages 8 to 15 are statistically at high risk for Lyme and other tick borne diseases like bartonella and babesia).

[nicklemama]

We are working on a consulting basis w/ Dr T and going through our own pediatrician who is following his recommendations. There are fees for the consultation but it beats traveling several states away. I highly recommend consulting w/ one of the four PANDAS drs, if you are unable to travel. Don't go it alone w/ your own pediatrician if they are unfamiliar w/ PANDAS. I know Dr T and Dr K do phone consults. Don't know about the other two.

 

Cindy

[peglem]

Thank you for the information. Do you use her and what has been your experience?

 

This is a scary disorder, no doubt about it. Its never to late to start treatment. I believe (although I might have my geography mixed up) that Dr. Beth Latimer, in Bethesda, MD, is you're closest PANDAS "expert." She is a pediatric neurologist and very, very good. I placed the quotes on expert because even those doctors who have been treating PANDAS for a long time are still learning about it. But, if you are serious about getting treatment quickly from somebody who understands PANDAS better than most docs, she would be one you should consider going to see.

We've seen her. Last year when our Cunningham results were shown to our pediatrician, he called Dr. Cunningham about her study and she referred him to Dr. Latimer for treatment questions. She returned his call the same day and talked with him for a good while. But, the pediatrician could not go beyond abx and steroid treatment so he referred us to a rheumatologist who looked over the info and called both Dr.C and Dr.L, then declared himself unable to dx or deliver treatment (actually told us he would not risk his career ??), but referred us to Dr.L. We are in Arizona, so it was no easy endeavor for us to travel that far w/ our very severely affected daughter. But we did it. (her office visit, but not travel, was reimbursed by insurance since they did not have an in network physician w/ the expertise to deal with this). She recommended treatment, (IVIG) which the local immunologist has followed through on. We cannot see her regularly because of the distance, but she still will consult w/ our pediatrician when he calls her for help. (no charge) She is a very caring, compassionate, skilled physician, who, IMO, puts the health and well being of her patients before anything else. Wish we lived closer!

Edited October 21, 2010 by peglem

[EAMom]

You might find this thread helpful (FAQ) http://www.latitudes.org/forums/index.php?showtopic=6266

 

There are also 3 podcasts (you can even upload for free with Itunes if you want to put them in your ipod). That are a good "intro to PANDAS". One is with Dr. Latimer, 1 with Dr. K., and one with Dr. T. Here's a link (voice america interviews) http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348 (They are just about an hour (?) each. I listened to them on my iphone while walking the dog!)

Edited October 20, 2010 by EAMom

[Blessedwifeandmom]

I am so thankful for all this information. I'm reading Saving Sammy now and praying about what to do. For now he is own quite a few supplements and it has helped some. Especially the OCD symptoms. The Inositol has helped him a lot in that area. Unless it's just a coincidence that he is better. Our biggest issue is with him being scared of being alone in any room especially bathrooms and he will not sleep alone because of the scary intrusive thoughts. Any help in how to help him with this would be great.

[Blessedwifeandmom]

He isn't on an antibiotic right now. The doctor wouldn't prescribe anything because his throat culture was negative 2 times in the last 8 weeks but his titers were high so I'm assuming that he has had strep and that is why things got worse while on vacation. Is that a wrong assumption?

 

Blessed mom, What antibiotic is your child on now? From what I see on here the wait for Dr. Latimer is long. You should get the appointment today and talk to your current pediatrician to see if she will extend the antibiotics for as long as you can. Print out information from the helpful threads here and give it to your doctor, buy the Saving Sammy book and give her a copy to keep. Motrin can help as well. Keep reading and posting.