Jump to content
ACN Latitudes Forums

The blood tests are normal?! HELP!


Recommended Posts

Ok, after telling my pediatrician for over a year that I thought my daughter who was diagnosed with OCD had PANDAS, the Professor of Psychology and Doctor in charge of the family and child study at Duke University in NC agreed with me. Well actually, he didn't even know that I thought she had PANDAS, he told me that HE thought she had PANDAS which delighted me because I've been telling my pediatrican that for a long time. Feeling more positive than ever, I went to my pediatrician and told him that this Dr. at Duke thinks its PANDAS, and so do I, so when are you going to help me and treat her for it. He first put her on 10 days of Omnicef (rapid strep test at the time was negative) then after she had been off the Omincef for 1 day....he sent her for bloodwork. The tests have all come back "negative" that's the only answer that I've received. Now what? Has anyone else here had all the bloodwork come back normal? I feel like we're back at square one! By the way, my daughter had several recurrent strep infections with positive cultures and or rapid tests before we started to see the OCD. Overnight she was different child. We had her tonsils removed in 2008, after 5-6 strep infections in a short period of time.......but it didn't stop there. She continued to get strep. Right now her test and culture for strep are negative......but the frustration and OCD symptoms are still there. Amazingly when she took Zithromax she was like another child for a few days....but then that wore off. Then on Omincef for 10 days we saw a great improvement in her mood, frustration and OCD symptoms.....but by the time she was feeling pretty good and things were going great......the 10 days was up! Now I'm just at a loss......and in the mean time she's telling me that her throat hurts.....HELP! Anyone have any advice??

Link to post
Share on other sites

Hi

 

I moved this from the TS forum to the PANDAS forum as the parents here will be able to give guidance on the strep aspect, and also on the importance of a comprehensive evaluation before a doctor can just rule out PANDAS. Sometimes this means having to find a PANDAS literate physician

 

all the best

 

The TS/tics board is also there if you want to learn more about other aspects, especially natural treatment alternatives for tics & OCD

Link to post
Share on other sites

Ok, after telling my pediatrician for over a year that I thought my daughter who was diagnosed with OCD had PANDAS, the Professor of Psychology and Doctor in charge of the family and child study at Duke University in NC agreed with me. Well actually, he didn't even know that I thought she had PANDAS, he told me that HE thought she had PANDAS which delighted me because I've been telling my pediatrican that for a long time. Feeling more positive than ever, I went to my pediatrician and told him that this Dr. at Duke thinks its PANDAS, and so do I, so when are you going to help me and treat her for it. He first put her on 10 days of Omnicef (rapid strep test at the time was negative) then after she had been off the Omincef for 1 day....he sent her for bloodwork. The tests have all come back "negative" that's the only answer that I've received. Now what? Has anyone else here had all the bloodwork come back normal? I feel like we're back at square one! By the way, my daughter had several recurrent strep infections with positive cultures and or rapid tests before we started to see the OCD. Overnight she was different child. We had her tonsils removed in 2008, after 5-6 strep infections in a short period of time.......but it didn't stop there. She continued to get strep. Right now her test and culture for strep are negative......but the frustration and OCD symptoms are still there. Amazingly when she took Zithromax she was like another child for a few days....but then that wore off. Then on Omincef for 10 days we saw a great improvement in her mood, frustration and OCD symptoms.....but by the time she was feeling pretty good and things were going great......the 10 days was up! Now I'm just at a loss......and in the mean time she's telling me that her throat hurts.....HELP! Anyone have any advice??

I'm guessing the "negative" tests was for strep titers. It is very common for PANDAS kids to have low ASO and antiDnase titers. The fact that she has responded well to abx and prednisone seems to indicate that something infectious is at the root of your daughter's symptoms.

Link to post
Share on other sites

I am sitting in your same shoes right now. DS's titers were all normal. However, we are consulting w/ Dr T, one of the PANDAS 'experts' and he says normal bloodwork doesn't rule it out. My DS started biaxin two weeks ago and we've seen positive results in his mood, frustration, tics and ocd's. Hang in there. Consider consulting one of the four experts. Btw, my DS has never tested positive for strep. He was never previously tested. YOu might go to page two or three on this forum. I just asked this same question last week and got great answers.

 

Cindy

Link to post
Share on other sites

I encourage you to get the actual reports from the lab and take them to a PANDAS literate doctor. I was told in Febrary 2010 that everything was "normal" and "negative" by my son's pediatrician.

 

Two PANDAS docs and an ENT looked at the EXACT test results and did NOT think everything was fine. We eventually found a infected cyst in his sinuses that had been brewing for quite a while. The pediatrician did not see the same patterns, and did not know what to look for with PANDAS. She was looking for high ASO titers and when she did not see them she said "no PANDAS". This is FALSE. Many children do not have elevated ASO titers. Elevated ASO is not a requirement for PANDAS.

Link to post
Share on other sites

Please don't give up. My kids had positive strep cultures and very low titers always. I believe seeing or at least consulting on the phone with a PANDAS specialist is key. It scares me to think where my kids would be without them. If you have any questions, feel free to PM (email) me!

Link to post
Share on other sites

Can you call your dr's office and ask for the specific results- what are the ASO and the ADB values? Some labs set the upper limit on ASO at 200 and some set it at 400. Years ago during an exacerbation, my dr told me my son's titers were "normal", but when I showed them to my current dr, she said "OH, his strep titers were high". His ASO was 396, but the nurse said it was "normal" b/c it was below 400. An ASO of 396 is not normal in a child. So, he went untreated for a while and al of my kids got worse.

 

Even if all of yout titers are zero, your child could most definitely still have PANDAS.

 

When she was a "diferenent child" on zithromax, how long was she on it? Maybe it was working, but she was not on it long enough. Putting someone, anyone, on only 5 days of zithromax is usually not long enough for most infections.

Colleen

Link to post
Share on other sites

Has anyone else here had all the bloodwork come back normal?

 

YUP!

 

Clinical signs, history, and response to treatments (antibiotic, steroid burst) are far more important in PANDAS diagnosis than bloodwork (I'm guessing they are mainly looking at ASO/anti-dnase b strep titers.) Titers are just 1 piece of the puzzle and are low for many PANDAS kids.

 

Have you seen this list of NC docs under helpful threads?

 

North Carolina

 

James, Lee, MD Piedmont Neuropsychiatry - 1 hr 30 min from Charlotte, NC, does not bill insurance but is an important resources in the area http://www.piedmontn...psychiatry.com/

 

Dr. Mauve O'Conner - Carolina Asthma & Allergy - Charlotte NC (also office in Concord) - she is very interested and curious. Willing to review all medical records and work with other doctors in a team approach (works with Dr. Corbier)

 

Dr Branner - Pediatric GI specialist - great guy, PANDAS believer, really did good work to figure out stomach issues. Did not dismiss immediately as anxiety. Found Peptic Ulcers - Charlotte NC - Presby Pediatric GI.

 

Dr. DeeDee Russell - not a PANDAS person, but excellent with ERP therapy for kids and helping with anxiety. Cornelius NC

 

Dr. Pat Gammons - all the doctors at Duke, in PCAAD. Again, not really PANDAS believer - but not skeptic either. Just wants to help on the therapy side, and did amazingly well working on the OCD.

 

Northeast Pediatric Neurology in Concord... both neurologists treat PANDAS (Dr. Corbier and ??) Very busy office, takes a long time to get an appt and the appointments tend to run late. Dr. Corbier really knows what he is doing and he gets that light bulb look and has ideas of what to look for. Not big on treatment and with low titers he dismissed the idea at first.

 

Chris Jenny PA - Dan! Doctor in Charlotte, PANDAS knowledge, is aware of Dr. Cunningham's tests and research. Will treat with antibiotics but not agressively. Helpful as backup for issues related to diet, supplements, yeast, behavior.....

 

Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo) - NOT SEEING PATIENTS AT THIS TIME.

Link to post
Share on other sites

Has anyone else here had all the bloodwork come back normal?

 

YUP!

 

Clinical signs, history, and response to treatments (antibiotic, steroid burst) are far more important in PANDAS diagnosis than bloodwork (I'm guessing they are mainly looking at ASO/anti-dnase b strep titers.) Titers are just 1 piece of the puzzle and are low for many PANDAS kids.

 

Have you seen this list of NC docs under helpful threads?

 

North Carolina

 

James, Lee, MD Piedmont Neuropsychiatry - 1 hr 30 min from Charlotte, NC, does not bill insurance but is an important resources in the area http://www.piedmontn...psychiatry.com/

 

Dr. Mauve O'Conner - Carolina Asthma & Allergy - Charlotte NC (also office in Concord) - she is very interested and curious. Willing to review all medical records and work with other doctors in a team approach (works with Dr. Corbier)

 

Dr Branner - Pediatric GI specialist - great guy, PANDAS believer, really did good work to figure out stomach issues. Did not dismiss immediately as anxiety. Found Peptic Ulcers - Charlotte NC - Presby Pediatric GI.

 

Dr. DeeDee Russell - not a PANDAS person, but excellent with ERP therapy for kids and helping with anxiety. Cornelius NC

 

Dr. Pat Gammons - all the doctors at Duke, in PCAAD. Again, not really PANDAS believer - but not skeptic either. Just wants to help on the therapy side, and did amazingly well working on the OCD.

 

Northeast Pediatric Neurology in Concord... both neurologists treat PANDAS (Dr. Corbier and ??) Very busy office, takes a long time to get an appt and the appointments tend to run late. Dr. Corbier really knows what he is doing and he gets that light bulb look and has ideas of what to look for. Not big on treatment and with low titers he dismissed the idea at first.

 

Chris Jenny PA - Dan! Doctor in Charlotte, PANDAS knowledge, is aware of Dr. Cunningham's tests and research. Will treat with antibiotics but not agressively. Helpful as backup for issues related to diet, supplements, yeast, behavior.....

 

Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo) - NOT SEEING PATIENTS AT THIS TIME.

 

Thank you everyone for all of the replies! It helps knowing that other people out there have experienced the same set back with ASO titres not showing what the drs are looking for. I have checked into Eliana Perrin in NC......she says that she was put on this list by mistake and she says please get the word out there that she doesn't see or treat pandas patients. As for the Dr. Pat Gammons at Duke, we were seeing Dr. Chris Mauro, who basically does the same thing that she does at Duke, he is a psychologist, so he can't prescribe meds....but he was awesome with CBT, and we came a really long way with dds OCD symptoms working with him for 6 months. He is also the Dr. that told me he thinks she has pandas......I had mentioned pandas to our pediatrician several times......but gave up for a while and started the CBT at duke. Dr. Chris told me that HE thought it was pandas....which made me more confident in my pursuing and researching it again. I think that we are going to try and get the cunningham test done, and make an apt. to see Dr. L (who seems to be closer to NC than some others) I may check into some other drs on that list too. Thanks again!

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...