Finally got lab results

[Dedee]

Well, I took my son to see an infectious disease specialist last week. Over all it wasn't too bad. They didn't look at me crazy when I mentioned PANDAS, which is a start. We got started with a couple of basic labs. They called me today to say that his Strep Culture was negative. However his Strep Antibodies were "significantly elevated" at 1,284. She wants me to keep him on his antibiotics for now until she speaks with his neurologist. I want him on the antibiotics because when he is off, his tics get much worse. They are barely noticable while on antibiotics. Of course not many doctors approve of on going antibiotic therapy.

 

So what does anyone think of the antibody results? How high is 1,284? He hasn't had a strep infection in a month. Has been on continuous antibiotics since then. Sounds pretty high to me, but hey I'm just the Mother right??

 

Any input would be greatly appreciated!!

 

Dedee

[Chemar]

hi Dedee

as we have never had to deal with PANDAS I cant give any insight into the actual values, but just wanted to mention that this does seem to be a clear indication of PANDAS induced tics.

 

A number of people have reported good results with zithromax (azithromycin) as the antibiotic

[ad_ccl]

Hi Deedee,

 

My son had PANDAS and has had chronically elevated titers. His last official strep infection was when he had his first onset of symptoms, he has remained on antibiotics since that time - 2 1/2 years ago - with a break this summer which was a disaster. He is now on azithromycin and doing really well. His numbers have been up at 1200 - many months after the strep infection, and have never come below 700 - I have written to the NIMH asking about this and they sent some literature about elevated titers, but no clear answers. We have seen every kind of doctor and no one has an answer. We have not tested his titers since the summer, but I think I will ask to when he has his annual in a couple of weeks. Azithromycin has been such a blessing for him, and for us all. What kind of antibiotic are you on now? We had been on amoxycillin for almost 2 years - and we thought he was doing quite well - so took him off it in the summer as a trial, he ended up with a loud vocal squeak every second and was very grumpy etc - terrible symptoms - so much so we did not think he could start school in September. We went back on amoxycillin and his symptoms did not improve at all. We tried azithromycin as a last resort - last week of August - my doctor was getting reluctant about all the antibiotics I was begging for and were not working. Within a day there was a clear improvement and within a week he was symptom free. While I thought he had been pretty good on amoxycillin - now that he is on azithromycin I realize how much better he is doing. He has missed one week of school with a cold - last year he would often miss mornings - and full days, totaling 40 for the year. So - so far 5 - with a real cold - last year he missed school when I saw neurological symptoms. Also - he is sooooo much happier, within a week on azithromycin I said to my husband I had not realized how little he laughed for the last two years, he seemed so happy, laughing often - one of those things that I did not realize were missing until it came back again. He is doing great in school (actually this has not really been a problem for him even when missing lots of school - so we have been lucky) He is just so happy - no emotional lability, and seems to have lots more energy in general.

Hope your son continues to do well and that the doctors are open to prophylactic antibiotic use - have you given them a copy of the latest research from NIMH about prophylactic antibiotic use?

 

Also wanted to wish everyone a Happy New Year - I still lurk here - but life is busy.

 

If Claire is checking this thread - we did a movie test today - first time in 2 1/2 years. He did have some reaction, but minor ( he is also fighting a viral illness - we have all been sick over the holidays). Big Step for him and his photosensitivity.

[Dedee]

Thanks so much for your replys. I knew that I wasn't crazy. We stoped my sons antibiotics once and within 36 hours he had a throat clearing type tic. My pediatrician was doubtful, but agreed to try Amoxicillian just to satisfy me. It took 3 days before the tics began to significantly decrease. Now they are only slightly noticeable. However, both my pediatrician and the infectious disease doctor seem reluctant to agree to long term antibiotic therapy. They are going to consult with his neurologist tomorrow and let me know. Where can I get the info from NIMH on long term antibiotic therapy for PANDAS? I would love to have that for reference. I really don't know what the big deal is. No one thinks twice about giving it to my three year old daughter for the last year for a kidney disorder. Why should OCD and TS be any different?

 

Thank you again for all your help. I feel stronger with support from those who have been there and survived!

 

Dedee

[ad_ccl]

Hi Deedee,

 

Wish I was more computer savy then I could just post a link to the article - but the long way is to google search NIMH - PANDAS - then get into the site and click at the top - recent publications - I think it is most recent one. Ronna posted the link - sometime in the summer - so you could search this site for Ronna's postings in the summer. I think there may be a couple articles that talk about prophylactic antibiotics, but this is the one I took to my doctor to convince him to try azithromycin. Ronna's son is also on azithromycin and last I heard he was also doing really well.

 

Good Luck,

[Ronnas]

We have been away since New Year's...we just got home..."lurking" also and posting when I can...I hope this link helps. Very good article to give to your doctor. My son is doing really well on azithromycin also. He has been on it since last spring and it is the best 8 months in 5 years.

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE.

Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland 20892, USA. sniderl@intra.nimh.nih.gov

 

BACKGROUND: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. METHODS: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. RESULTS: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p<.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p<.01]. CONCLUSIONS: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup.

 

PMID: 15820236 [PubMed - indexed for MEDLINE]

[Dedee]

Wow, thank you so much for this information. It is great to have something in hand to show instead of just saying, well I read it on the internet. I am sure you all understand. Even though I have a good relationship with my pediatrician, it is still hard sometimes to convince her. This is so valuable, thanks so much. My son is just so much better on antibiotics and I am so afraid I am going to have to fight tooth and nail to convince these specialists that I know what I am talking about. They just should spend some time with him, there is no doubt at all. Again, thanks to everyone for all your support and help. Hope everyone has a great new year!

 

Dedee

[gdmtam]

Hi Deedee,

 

My son had PANDAS and has had chronically elevated titers. His last official strep infection was when he had his first onset of symptoms, he has remained on antibiotics since that time - 2 1/2 years ago - with a break this summer which was a disaster. He is now on azithromycin and doing really well. His numbers have been up at 1200 - many months after the strep infection, and have never come below 700 - I have written to the NIMH asking about this and they sent some literature about elevated titers, but no clear answers. We have seen every kind of doctor and no one has an answer. We have not tested his titers since the summer, but I think I will ask to when he has his annual in a couple of weeks. Azithromycin has been such a blessing for him, and for us all. What kind of antibiotic are you on now? We had been on amoxycillin for almost 2 years - and we thought he was doing quite well - so took him off it in the summer as a trial, he ended up with a loud vocal squeak every second and was very grumpy etc - terrible symptoms - so much so we did not think he could start school in September. We went back on amoxycillin and his symptoms did not improve at all. We tried azithromycin as a last resort - last week of August - my doctor was getting reluctant about all the antibiotics I was begging for and were not working. Within a day there was a clear improvement and within a week he was symptom free. While I thought he had been pretty good on amoxycillin - now that he is on azithromycin I realize how much better he is doing. He has missed one week of school with a cold - last year he would often miss mornings - and full days, totaling 40 for the year. So - so far 5 - with a real cold - last year he missed school when I saw neurological symptoms. Also - he is sooooo much happier, within a week on azithromycin I said to my husband I had not realized how little he laughed for the last two years, he seemed so happy, laughing often - one of those things that I did not realize were missing until it came back again. He is doing great in school (actually this has not really been a problem for him even when missing lots of school - so we have been lucky) He is just so happy - no emotional lability, and seems to have lots more energy in general.

Hope your son continues to do well and that the doctors are open to prophylactic antibiotic use - have you given them a copy of the latest research from NIMH about prophylactic antibiotic use?

 

Also wanted to wish everyone a Happy New Year - I still lurk here - but life is busy.

 

If Claire is checking this thread - we did a movie test today - first time in 2 1/2 years. He did have some reaction, but minor ( he is also fighting a viral illness - we have all been sick over the holidays). Big Step for him and his photosensitivity.

[Chemar]

hi gdmtam

 

the best way to post here is just to use the "add reply" button

 

look forward to hearing from you