Daughter Blake 12yr Old (PANDAS diagnosis 8yrs / Fairfax Hospital VA)

[Hierge]

Hello,

 

My name is Dave. My 12 year old daughter Blake was diagnosed by a pediatric neurologist four years ago with PANDAS. She couldn't sit up in a chair without falling, stared at the sun with eyes open, crawled around the floor like an animal, started to undress in public, crawled across table in restaurant to eat like a dog off of someone else's plate, drew bad pictures with crayons in her fist, asked for doughnuts every five minutes for three days... many other sudden onset symptoms.

 

The first ER in Calvert County Maryland made us wait five hours until we left. Prince William hospital in Virginia said there was nothing wrong. Finally, we took her to Fairfax Hospital in Virginia, one of the top hospitals in the country. This had to be more than a week after the sudden onset symptoms.

 

At the time, we had her in the ER for suspected Lyme disease. Negative on that. She had encephalopathy according to the pediatric neurologist. He had a student with him as he examined Blake. After about ten minutes of just staring at her and rubbing his chin, he got a quizzical smile on his face...

 

"Did you say that your daughter asked for doughnuts every five minutes for a couple days?" He looked at the student and back at Blake.

 

"She has PANDAS." The student's looked back and slowly nodded in agreement.

"This is a rare disorder, I've never seen a case in a child this old (8yrs)"

"I'm going to make you a bet. I'm going to run a blood test for strep and it will come back positive. These kids don't get strep throats, they get it as a blood infection that affects their brain and causes sudden onset OCD."

"I can treat this with very small doses of steroids."

 

Well... naturally the strep test came back positive with titers at 400. She was in the hospital for a week and had every test known to mankind done on her. She was treated with IV antibiotics and never got the steroids. Our insurance didn't include Dr. Young in network.

 

It's been four years now and the best we have gotten for Blake is on positive Strep tests she gets the normal course of antibiotics. She is 12 years old and weighs barely 70lbs, I can close my index finger and thumb around her biceps. She has good days and bad days. Irrational fears. Hypersensitivities. Cries often without any reason. Hordes food in hiding places around her room. Won't flush toilets or brush her teeth voluntarily. She has new OCD symptoms on a daily basis. Her only treatment is 27mg of Concerta daily.

 

After the OCD conference in Crystal City and the dinner with Beth Maloney, I found out about Dr. Latimer in our area. I have an appointment for September 28th.

 

My hopes are high for Blake.

 

Nice to see you folks have a group and are getting really smart about this disorder. I hope I can contribute to the body of knowledge here.

 

Dave Hiergesell

[thereishope]

Welcome. I am happy you have an appt with Dr Latimer. A lot of the symptoms your daughter had/has other kids do too including staring at the sun, crawling around like an animal,having animalistic ways of eating, overall eating issues that result in weight loss, etc. You're not alone and PANDAS isn't as rare as some doctors make it out to be. Until the appt in Sept, I would also consider giving her Vitamin D (perhaps why she stares at the sun), Omega 3's, and probiotics. Some kids also have an easing of symptoms with Ibuprofen.

 

Here are some useful links you can read. Perhaps they may answer some questions or lead you to new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

If your daughter is interested in connecting with other kids and teens, I suggest this website www.pandas-syndrome.webs.com It was started by a 13 yr old boy with PANDAS

 

I'm happy you found this forum!

Edited August 3, 2010 by Vickie

[Hierge]

Welcome. I am happy you have an appt with Dr Latimer. A lot of the symptoms your daughter had/has other kids do too including staring at the sun, crawling around like an animal,having animalistic ways of eating, overall eating issues that result in weight loss, etc. You're not alone and PANDAS isn't as rare as some doctors make it out to be. Until the appt in Sept, I would also consider giving her Vitamin D (perhaps why she stares at the sun), Omega 3's, and probiotics. Some kids also have an easing of symptoms with Ibuprofen.

 

Here are some useful links you can read. Perhaps they may answer some questions or lead you to new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

If your daughter is interested in connecting with other kids and teens, I suggest this website www.pandas-syndrome.webs.com It was started by a 13 yr old boy with PANDAS

 

I'm happy you found this forum!

 

 

Thanks Vickie! I am starting her on high dose Omega 3's this weekend for anti-inflammation. I will try the Vitamin D as well. We give Ibuprophen when she gets bad. Can you give me some brands for probiotics and vitamin D?

[Phasmid]

Oh my gosh. Best wishes for good meeting with your new doc. Thanks for posting this heartbreaking story.

[mama2alex]

Welcome! I'm sorry you've been dealing with this for so long. We've been trying to get our son well for a year, and that has seemed like an eternity. A few thoughts/questions for you:

 

1. How was Lyme ruled out? By an ER doc with a Western Blot? Many here have discovered that Lyme is an underlying problem for their children, which went undiagnosed for a long time. It can be very tricky to diagnose properly, so you may want to consider revisiting this with a Lyme-literate doctor.

 

2. Have you had everyone in your household tested for elevated strep titers? Several families here have discovered that they have a strep carrier in the family after working for a long time to get their children well. You may want to have your family doctor run these before you see Dr. Latimer. If anyone is elevated, this is good info for her to have.

 

3. Did your daughter get better after the initial IV antibiotics? What antibiotics has she been given? Did you ever try a course of steroids?

 

I wish you all the best. From what I hear, Dr. Latimer is wonderful. And you've found a great community here for support, information and ideas.

 

Jennifer

[momaine]

Welcome to the forum. Your post made me cry. I understand what you are going through as my dd suffered greatly with PANDAS before finally being diagnosed more than 3 years after initial onset. What makes me saddest about your post though is that she had a diagnosis years ago and she is still struggling so badly without proper treament. Good luck with Dr. Latimer. I know many people on this forum use her and are satisfied with her protocol.

 

Advil made a huge difference for my dd. Steroids helped even more. could you get a prescription for more antibiotics and/or steroids from your family doctor while you wait for your apt? Is it possible to find out which blood tests Dr. L would like you to have BEFORe you go to the apt. so you can get the ball rolling and be able to discuss the results with her while you are at the initial apt?

 

Keep reading on this forum and find out all you can before your apt. Write down all your questions to you don't forget anything. Best of luck to you!

Angela

[PhillyPA]

My sons are patients of Dr. Latimer's. She is going to want you to get the Cunningham blood test. Get it done now so you will have the results by the time your appointment in September. You do not need Dr's orders to get this test. Just e-mail Madeline Cunninghmas lab at the University of Oklahomas PANDAS research center. Tell her your daughters symptoms and request a blood kit. Also, tell her that you are a patient of Dr. Latimer's and to send the results to her as well. Here is the e-mail to send your request: Kathy-Alvarez@ouhsc.edu

 

Kathy works in the lab and can get the kit out to you. The test costs $400.00 but it is a write-off.

[kimballot]

Dave -

Welcome to the forum. You are in a good place here. Read the posts, do some searching, and you will find many answers and you will have many more questions. I am glad that your hopes are high for Blake... I think most folks on this forum feel the same way about their kids.

 

I've only heard good things about Dr. Latimer, and you are fortunate to get an appointment so quickly.

 

I agree that the cunningham test would be a good start. It is good to do the test while your child is in an exacerbation (not after she has had antibiotics, as this can skew the results).

 

Some background info on the test can be found at http://www.pandasresourcenetwork.com/research-programs.html

 

Also, asking about back ground blood work would be good to have going in to see Dr. L.

 

Best wishes as you navigate through here. If you as a question... someone will have the answer!

[T_Mom]

Hi Dave--So glad to see your post here--My husband sat across from you at the Italian restaurant that evening. As you know, we see Dr L. as well -- and she has literally been a life change-agent for our children.

 

I wanted to mention that we have found the following supplements really helpful (we think...) in addition to antibiotics and 2 steroid bursts in the last two years.

 

Omega 3's via Flaxseed Oil capsules or fish oil (we aim for 1000mg a day for Omega 3)

Vitamin D and C, 1000mg of each a day.

Probiotics -- via one or two "Pearls" sold at whole foods, and a glass or two of kefir (disguised in milkshakes), or Good Belly fruit drink from Whole Foods--Kefir I think really seems to help--

 

So glad to hear you are going to see Dr L., all the best--

[PacificMama]

Hi Dave,

 

As others have already said, welcome to the forum. Your daughter's story touched my heart, and I wish you all the best on your journey to heal her.

 

While you have received a PANDAS diagnosis in the past, it is possible that there are other infectious agents your daughter is struggling with in addition to strep. Because you live in a very lyme endemic area, please consider that she is indeed dealing with lyme, and possibly other infections. Lyme tests are hugely innacurate, and so the negative result you received may quite possibly be a false negative. Your daughter's symptoms are very much in line with the symptoms of lyme and other co-infections that go along with lyme.

 

The only way you can know for sure is to have the lyme western blot done through Igenex labs, and see a specialized lyme doctor in your area. There are some good lyme doctors in your area that will test for many, many different infections -- not just lyme -- and help you get to the bottom of things. Once the doctor has a handle on the infections involoved, they will adequately treat your daughter with antibitotics and not cut her off until she is healed.

 

Please read the recent lyme posts on this board. And please contact www.ilads.org for a lyme doctor located near you. I'm not sure if Dr. L will run a lyme test through Igenex labs... but I would strongly urge you to only use the Igenex lab test as it is the most accurate.

www.igenex.com

[Hierge]

Welcome! I'm sorry you've been dealing with this for so long. We've been trying to get our son well for a year, and that has seemed like an eternity. A few thoughts/questions for you:

 

1. How was Lyme ruled out? By an ER doc with a Western Blot? Many here have discovered that Lyme is an underlying problem for their children, which went undiagnosed for a long time. It can be very tricky to diagnose properly, so you may want to consider revisiting this with a Lyme-literate doctor.

 

Blake had her spinal fluid drawn and it was sent away to a lab where the results took days to return. She was ruled negative on that test as well. She did have a tick on her a month before the sudden onset of symptoms, but it was a large tick from North Carolina not known to be a species that carries Lyme. We were sure it was Lyme because of that tick, but a week in the hospital convinced us otherwise, especially with the elevated Strep titers.

 

2. Have you had everyone in your household tested for elevated strep titers? Several families here have discovered that they have a strep carrier in the family after working for a long time to get their children well. You may want to have your family doctor run these before you see Dr. Latimer. If anyone is elevated, this is good info for her to have.

 

We haven't had anyone besides Blake tested. Her mother has a strep throat on a fairly constant basis though. The ENT doctor Gupta told us that 10% of the population are strep carriers and that it's utterly futile to try and control strep in the environment. He strongly recommends the control of inflammation for PANDAS rather than the strep emphasis. I am not in agreement on his refusal to give prophylactic Augmentin, but perhaps there's something to the idea that antibiotics are effective on PANDAS because they are anti-inflammatory IN ADDITION to being antibiotic toward Strep. The prophylaxis benefit, therefore, being primarily anti-inflammatory rather than antibiotic. I am currently on that bandwagon. It's my belief that we need a treatment regime that "normal" doctors can agree to short of prophylaxis - if possible. Just a reality for those of us who have been through lots of doctors and need something we can get non-PANDAS experts to treat with.

 

3. Did your daughter get better after the initial IV antibiotics? What antibiotics has she been given? Did you ever try a course of steroids?

 

Blake cleared up after several weeks. I think it was Zithromax she had in the IV. That would have killed Lyme as well from what I know. They decided to zap her for good measure. She has a baseline of PANDAS symptoms that are a combination of learned PANDAS behaviors and real PANDAS behaviors when strep starts kicking in on her. She goes through antibiotic rounds once or twice a year. That's the best we could get until now.

 

I wish you all the best. From what I hear, Dr. Latimer is wonderful. And you've found a great community here for support, information and ideas.

 

Jennifer

[Hierge]

Hi Dave--So glad to see your post here--My husband sat across from you at the Italian restaurant that evening. As you know, we see Dr L. as well -- and she has literally been a life change-agent for our children.

 

Hey there! Your husband has a Zen about him that I really liked. He convinced us that Dr. L is worth the cost and effort to see.

 

I wanted to mention that we have found the following supplements really helpful (we think...) in addition to antibiotics and 2 steroid bursts in the last two years.

 

Omega 3's via Flaxseed Oil capsules or fish oil (we aim for 1000mg a day for Omega 3)

 

You need to know something about Flaxseed Oil. It has virtually zero effect on inflammation in the brain. Flaxseed Oil has long-chain fats that can be converted "theoretically" to EPA and DHA in the body, but in reality it never gets converted. The good news is... IFOS Certified tasteless fish oil is available for a moderate price. Personally, I buy Omapure IFOS Certified Omega 3 fish oil. I order bottles of 120 capsules in lots of 10 for $20 per bottle. The proper dosage for people with neurological problems is 10+ grams (yes grams) per day. At 700mg of EPA/DHA per capsule of Omapure this means 15 capsules per day. That's a lot of oil, but it will have a very strong effect just like a steroid with no side effects other than higher IQ and memory retention. Other side effects are strongly anti-depressant - more powerful than SSRIs. You can cut the capsules and put it in the "big brain shake" with blueberries, protein powder and milk for children. There might be some orange oil in the stool, but mixed with food it should stop. I am putting Blake on 7.5 grams a day (11 capsules drained) to start and then will be moving her up to 15 or higher. Just got her mom to agree to this daily routine. You might want to read Dr. Barry Sears book "The Anti-Inflammation Zone" for more info about real fish oil as opposed to flax. Remember, this is just oil and should not be considered dangerous in virtually any dose unless there is hemophilia or bleeding issues. Ultimately, it's just oil. Play with the dosage.

 

Vitamin D and C, 1000mg of each a day.

Probiotics -- via one or two "Pearls" sold at whole foods, and a glass or two of kefir (disguised in milkshakes), or Good Belly fruit drink from Whole Foods--Kefir I think really seems to help--

 

This is as good as done. Thanks so much for this advice. I will get on this immediately.

 

So glad to hear you are going to see Dr L., all the best--

[forjpj]

My heart goes out to you!! I'm sorry you are here, but happy you have found us!! This forum provides so much support and love!! I think you will be very happy with Dr. L!! She treats my son, and pretty soon she will evaluate my daughter. Good Luck!! A Virginia pandas support group is meeting next on August 28 at 11:00 at the Olive Garden next to Ikea. Be warned, the four of us who met stayed and talked for 4 hours!! It was great!! If you can't make it don't, worry, there will be another one next month!!

Sarah

[Hierge]

Welcome to the forum. Your post made me cry. I understand what you are going through as my dd suffered greatly with PANDAS before finally being diagnosed more than 3 years after initial onset. What makes me saddest about your post though is that she had a diagnosis years ago and she is still struggling so badly without proper treament. Good luck with Dr. Latimer. I know many people on this forum use her and are satisfied with her protocol.

 

I took Blake to Richmond a month ago. She smelled smoke in the restaurant and we all had to leave with our food uneaten in boxes. Later that evening my wife and I left her and her sister for ten minutes to go have a glass of wine. In that ten minute period she placed over 40 phone calls to me - I didn't have my phone. She called her mother and others at 12am crying. I was so shaken by this that I stayed up crying all night while rubbing her hair next to her hed. It made me decide once and for all to find help no matter what her mother said. She had given up completely at this point. Now she's working with me for a resolution.

 

Advil made a huge difference for my dd. Steroids helped even more. could you get a prescription for more antibiotics and/or steroids from your family doctor while you wait for your apt? Is it possible to find out which blood tests Dr. L would like you to have BEFORe you go to the apt. so you can get the ball rolling and be able to discuss the results with her while you are at the initial apt?

 

This is great advice. I will see if Latimer will order blood tests. I want to add an AA/EPA inflammation, fasting insulin level, and Lyme disease test from some special lab recommended to me.

 

Keep reading on this forum and find out all you can before your apt. Write down all your questions to you don't forget anything. Best of luck to you!

 

Thanks

Angela

[Mary M]

I'll just reiterate how glad I am that you found this forum. I, too, have a 12 yr old daughter. She had her first exacerbation 4 years ago. So glad you will see a real PANDAS doc and finally get real treatment. The regular docs who might "believe in PANDAS" and "diagnose PANDAS", in my opinion, are still holding fast to the NIMH guidelines which provide so little valuable treatment. But the PANDAS pros are the ones who know what to do and how to do it. Blake, and the rest of your family, deserve so much more from life and Dr L will be able to make that happen. I know our daughter deserved to get her life back and since our time spent with Dr K, big strides have been made. Granted, it was a hard road and you have plenty of work ahead of you but the hope you see for Blake is REAL and it will happen. Your wife has every right to feel disheartened by the system but there is HOPE. This forum and the Dr L will help you every step of the way!

Mary

from Michigan