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If the culture comes back negative, the strep could be elsewhere. Any skin changes that could indicate a strep infection on skin? Any perianal irritation/redness could be perianal strep. Strep can hide in tonsils, adenoids, and sinuses. You can have strep in the gut.

 

The loud breathing is what I saw in 3 of my kids before removing tonsils and adenoids. Whenever they had any upper respiratory illness/colds they had loud breathing, snoring, and sometimes sleep apnea episodes. This can mean the strep is hiding in the adenoids which inflames them and cause these symptoms. Your dr may say if strep is in the adenoids then it would also be in the tonsils and culture positive, But that was not our experience. Once tonsils and adenoids were removed we saw improvement and no more loud snoring/breathing or apnea episodes.

 

Strep can go inside the cells (intracellular strep) which means certain antibiotics cannot reach the strep at all. If this is the case, azithromycin(Zithromax) is a much better choice. Omnicef is better at getting intracellualr strep than penicillins, but Zithromax is much better to get to it.

 

Mycoplasma pneumo can be in play also if your daughter just had pneumonia. You would want to test IgM and IgG for mycoplasma pneumo. Some PANDAS docs routinely check for it. Some say it can be carried just as strep can be carried. Macrolides are the treatment (Zithromax is a macrolide). I do not think Omnicef, which is a cephalosporin, would treat it.

 

Hang in there!

 

Colleen

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He was on omnicef for 20 days..and day 10-13 he had no tics !!

 

Now he is on zithromax for 21 days

 

He has had no rashes, nothing on his rear... I did read about it being elsewhere

 

The doctor looked at his throat and nothing was inflamed

 

I will definelty be emailing her about strep in the adenoids.

 

He tested positive on the rapid weeks ago... He did have a sinus infection but no fever etc

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All my sons 10 tests came back normal ! Everything is normal...now I'm really confused

 

We are waiting for the heavy metal screen results

 

I recently removed all electrical from his room, and bought an all cotton bed, major improvements

 

That info is posted under "night time" on the TS and tic disoder forum

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He tested positive on the rapid weeks ago... He did have a sinus infection but no fever etc

 

I've read somewhere that strep can hide in your sinuses and a lot of these kids have sinus problems - mine does.

Dr b recommended using nasal spray - saline only. I would definitely rinse out his nasal passages especially while he is on an abx.

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I'm so sorry to hear about your son.

 

Did you get copies of your tests? I'd recommend starting to keep your own records.

 

What was your sons mycoplasma number for IgG and IgM? Many doctors will tell you that you are negative for mycoP with an IgM that is in range, but a high IgG. If you have had penuemonia in your home, I would be highly suspicious of an active or recent mycoplasma infection. The only way to really know if it is active is to track the IgG over time (if IgM is negative..which if common in people that have chronic mycoplasma).

 

I don't know how much research you've done since your are new to this, but, pandas is a condition that happens AFTER an infection. The infection does not need to be active. Of course, you must do everything possible to investigate all infections and immune disorders (that lead to infection) to make sure they aren't in a constant state of infection in order to break the cycle, but it is possible to have no chronic infections - and to have pandas. Its an immune response. And for many (most) it will flair with illness (any illness).

 

I've heard that some kids that catch it early and get on antibiotics early can recover that way alone. Many of us here had to get IVIG after the antibitocs stopped working for us. They work in the beginning, but somehow after a period of a few months the immune system figures out what's going on.. for us (and many here) getting a cold after a couple months of improvement (because of antibitocs) caused an exacerbation. This cycle usually continues and the child needs IVIG to "reboot" the immune system.

 

be sure to take plenty of probiotics...good luck...and do everything you can to get to a pandas doctor. i know the money situation is tough, but they really are the only ones that know what this is and how to treat it. You can start with some emails to them and a phone conference (that may cost you a few hundred dollars) and if you decided to do that - send them copies of all your records ahead of time and have your list of question ready to go. They may also recommend some tests prior to the conference if your doc hasn't done them, or be willing to consult with you local doc too..

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MCV 82

WB 4.1

Hemo 12.5

Red 4.58

Hematocrit 27.2

MCHC 33.2

RDW 11.9

Platelet count 230

MPV 7.3

Neotrophils 37

Lymphocytes 47

Monocytes 12

Eosinophils 4

Basophils 0

Absolute neutrophils 1.5

Absolute lymphocytes 1.9

Absolute monocytes .2

Absolute basophils 0

RBC - normals

 

Strep radpid - negative

Strep culture- negative

 

Sedimentation rate 11

Antistreptolysin <25

mycoplasma pneumoniae (sp?) .37, .47 IBM, IGM

 

Waiting for heavy metal screen results

 

C reactive protein .1

 

Lyme negative

 

Dnase strep 92

Edited by Helpmyson78
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Aren't monocytes supposed to be between 3-7 and his are 12

 

Eosinophils are 4 and are supposed to be less than 3.1

 

 

I've read about helminths ...which is caused my roundworms, and our cat had roundworms

 

We had to get rid of our sandbox because the stray cats used it to poop in, and pee

 

And my son got an eye infection last year because of it !

 

Or it could be mono

 

Emailed our doctor, this is confusing me more each day!

Edited by Helpmyson78
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