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Help to understand sons blood work


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Can someone help me to understand my sons blood work? Had to pull teeth to get his PC doc to write the scripts n when I called in for the results they tell me he don't want to give my son any antibiotics because he's not feeling sick ! Confused! Thank you all so much! Janny

 

Anti-DNase B strep antibodies -result 1780, flag high

 

Streptozyme- result 1:200, flag high

 

Antistreptolysin o ab - result 784.9, flag high

 

Lyme igG/IgM Ab- result <0.91 negative

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It looks like he has crazy strep. If his doctor won't treat - find one who will. That's ridiculous that a doctor won't treat an ACTIVE strep infection just because he's asymptomatic. Never mind if he doesn't believe in PANDAS, what about rheumatic fever, sydenham's chorea or glomerulonephritis? Surely he's heard of those? It sounds like your doctor is not going to be helpful. I would seek a doctor knowledgeable about PANDAS as quickly as possible. Good luck!

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I do know that Dr. Kovacevic, aka Dr. K, will do phone consultations. You can send him the results and discuss the symptoms with him. I believe he will then prescribe meds for your son if he feels that is what is best. You can call or email to ask the fee and if he will prescribe meds. His web site is:

 

http://webpediatrics.com/curriculum.html

 

FYI - I remember crying and begging for antibiotics for 8 months from the "professionals" at Yale. They wanted to put my DD on SSRI's and high power sleep pills, but were adverse to antibiotics. This was 2 years ago. I'm hoping they have changed since then, especially with Dr. Leckman and the whole IVIG study.

 

Where are you located?

 

 

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It looks like he has crazy strep. If his doctor won't treat - find one who will. That's ridiculous that a doctor won't treat an ACTIVE strep infection just because he's asymptomatic. Never mind if he doesn't believe in PANDAS, what about rheumatic fever, sydenham's chorea or glomerulonephritis? Surely he's heard of those? It sounds like your doctor is not going to be helpful. I would seek a doctor knowledgeable about PANDAS as quickly as possible. Good luck!

 

Thanks for your reply! I'm not sure if his PC doctor don't understand or just don't care!! ...when I took my son there to talk about testing him for all these tests he looked at the papers I printed out about pandas (skimmed over them real quick) and said go to childrens hospital they can help you. That was it. Grr! I called so many hospitals and doctors but either they don't take our insurance or they don't treat kids with pandas...it's really sad! So I demanded that he write a script out to have blood work done...when I found out the results I called my insurance card to help me find a doctor. So now we have an appt. this wednsday.at children's hospital with a immunoligest(spelling). ~ Janny

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I do know that Dr. Kovacevic, aka Dr. K, will do phone consultations. You can send him the results and discuss the symptoms with him. I believe he will then prescribe meds for your son if he feels that is what is best. You can call or email to ask the fee and if he will prescribe meds. His web site is:

 

http://webpediatrics.com/curriculum.html

 

FYI - I remember crying and begging for antibiotics for 8 months from the "professionals" at Yale. They wanted to put my DD on SSRI's and high power sleep pills, but were adverse to antibiotics. This was 2 years ago. I'm hoping they have changed since then, especially with Dr. Leckman and the whole IVIG study.

 

Where are you located?

 

 

I'm located in bucks county pa about 30 mins from Philly. Thank you for the information! It's sad that we have to fight so hard to find help for our kids! ~ Janny

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was a rapid strep done? If negative, these definitely indicate that there was an infection in the recent past...what's up with the doc? You need a new one.

 

Wanted a throat culture done but the lab that took the blood don't do throat cultures! Not sure if his doctors offices dose. Your right I do need a new doctor for my kids. Thanks for your reply!

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Definitely a new Dr.! A lot of our kids are asymptomatic meaning they don't have a sore throat or feel bad because their immune system is dysfunctional but as parents we know because of behaviors. Also the immune system just needs to be turned on from a previous infection which your blood works indicates, to have friendly fire. This is when the immune system attacks itself. With strep an example is rheumatic fever effecting the heart and our kids effecting the brain. Still don't understand why this is hard for Drs to get!

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my ds was asymptomatic for strep twice. (actually each time, but we accidently caught previous streps cause my doc always runs a rapid strep if issue could at all be connected to strep. this was prior pandas and is protocol for all kids in office it seems). Anyway, the first time strep was asymptomatic(and not caught because he had no other issues so I never brought him in), he ended up with scarlet fever. Second time, he ended up with Pandas age 6.

Edited by qannie47
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Hi Janny-

 

While those are crazy high numbers, the American Academy of Pediatrics advises against antibiotic treatment unless titers are rising. They are instructed to assume titers are falling in the absence of two sets of lab results so in all likelihood most traditional doctors (those who take insurance) will prescribe antibiotics without further confirmation of a current bacterial infection. I am not familiar with Dr. Orman-Lubell, but Dr. Trifileti is quite expensive and doesn't take insurance. Worse, he charges for "phone consults" to provide lab results. People swear by him, but his care doesn't come cheap.

 

I have two thoughts. First, if not too far, Dr. Bouboulis is an immunologist Fairfield County who takes insurance for office visits. He also does more sophisticated Lyme testing than that which was offered to your son. The best Lyme test is the Western Blot through Igenex in CA. This test isn't covered by insurance, but is relatively inexpensive (a few hundred dollars for Lyme and co-infections). If you don't want to lay out the cash, Stony Brook Laboratories in New York runs a decent Western Blot test, but you must be sure that the doctor requests that ALL the bands be reported out. Their test is covered by insurance.

 

I'd provide more information, but that's hard to do without knowledge of your child's symptoms. I hope this is helpful and not information you already have.

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Hi Janny

 

Just want to chime in here. Not sure what your child's symptoms are ..... But the numbers in his blood work are a big red flag.

 

With reference to Dr. Orman-Lubell .... She is my daughters Pediatrician. She works at Yardley Pediatrics and she has always been our Pediatrician. She is awesome!! She is NOT a PANDAS specialist but she is open minded. We are still grateful to her everyday for assisting us in an early diagnosis for our dd. Within one month of symptom onset, she ran labs, cultured for strep, and referred us to a Ped. neurologist to rule things out. To confirm diagnosis, we also saw Dr.Elia who was then at CHOPS. My daughter didn't have any "typical" symptoms of strep. She's a great Pediatrician - loving, compassionate, and respects parental input! To manage Dd's PANDAS we see Dr.B in Darien, Ct. We keep her updated on Dd's condition.

 

If you are looking for a new Ped. , she's great. As far as personal experience with PANDAS I don't know about that. If she suspects PANDAS in your child, she will likely refer you to see a specialist. She is open to learning but not too proud to defer to Dr.s that have more experience and PANDAS specific knowledge.

 

Good luck .... I am close by just over the bridge in NJ. We've been on this roller coaster ride for 2 years now. I wish I could say it gets easier. Would be glad to offer you any advice that might be helpful.

 

Hang in there ....

 

Teri

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