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Hello again,

I put my few cents in here and there but mostly I just read the posts and it has helped me not to feel so alone and crazy. So thank you all!

 

I need some advice... My children are on azithromycin 250mg 1 tsp 2x a day. My son 71/2 has been complaining of not feeling well and stomach hurting. I give probiotics too. He began with a little cough a few days ago , has been complaining his throat hurts and didn't look good. Yesterday his cough got worse and he is a bit horse . Today I kept him home from school and he is alot worse.

I added a dose of omnicef, he sounds awful. He went to bed and woke up 3 times already in a daze, not feeling well and making the motion to vomit. Well the third time he vomited a bit.

I wonder if its possible that he has strep, he used to gag when he had step.

What I am asking here is do I take him to a doctor to check him im worried that it can be croup or pneumonia. I read that o mnicef treats pneumonia too. I am just worried. I know the doctors will look at me like I'm nuts anyway. Especially since he i s on antibiotics they will just say its viral.

Also can anyone tell me if they have used bicillin injection in treatment for Pandas?

Thank you for any suggestions.

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It could also be that antibiotic is simply not effective for him and he needs a different one. If you do not see improvement by morning, I would take him back in to the doctor. At the very least, it will help set your mind at ease.

 

Aw, I know it's no fun when they look at us like we have three heads, but really... at some point, they are going to have to open their minds a crack and look into it, yes? ;)

 

If croup and he wakes having trouble breathing... you probably already know this, but either bring him into a small bathroom, shut the door, turn on the shower and steam up the room while you comfort him on your lap OR take him out into the cold night air - EITHER will help open up his airway and ease his breathing.

 

I hope you all get some good rest this evening and things look better tomorrow... please update when you can. :)

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Thank you for your response...I have been reading that you too have your hands full. How is your daughter doing?

I don't know which doctor to go to.lol pediatrician won't do anything, Dr. B is in ct and we already did ivig 2x, was supposed to continue every 2 months but our well has run dry. Still in appeal with insurance and I was billed over11,000 dollars. I just feel like there its no where to turn. Every doctor specialist wants an insane amount of money. I called a lyme specialist 1,100.00 for first visit. I have 3 pandas children.

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Thank you for your response...I have been reading that you too have your hands full. How is your daughter doing?

I don't know which doctor to go to.lol pediatrician won't do anything, Dr. B is in ct and we already did ivig 2x, was supposed to continue every 2 months but our well has run dry. Still in appeal with insurance and I was billed over11,000 dollars. I just feel like there its no where to turn. Every doctor specialist wants an insane amount of money. I called a lyme specialist 1,100.00 for first visit. I have 3 pandas children.

 

Gosh that makes me mad. I am so sorry.

 

Go with your gut, and take them to the doctor. Promise yourself a square of chocolate for every time someone looks at you with condessendingly or rolls their eyes :wacko: . It doesn't really matter. Maybe it is viral - I certainly hope so. But worth asking to be tested.

 

How is behavior? Everyone ok so far? If so, then you are probably ok. We usually see the behavior issues 3-5 days in advance of illness, so when the illness comes, we are like "ohhhhh, she is sick!" But some people don't see any issue at all with viruses.

 

Keeping my fingers crossed for you - let us know how it goes. If not good, just think of the amusing or enraged post you can write :). Might help you get through it.

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I have to say my daughters behavior is out of control. I can't reason with her, all she does its whine and cry meltdowns for no reason. She its defiant and wow so fresh. Never learning from her mistakes. My son surprisingly has been pretty decent.I read some of my previous p osts and see he was far worse. And my little one who hasn't been taking antibiotics because he spits it out, has been so cranky and irritable and demanding, hitting with toys.oy so unlike him(sigh)

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My daughter is about the same... much improved from before the Christmas hospitalization, but a long way to go still. We see Dr. B for first visit this coming Wednesday.

 

I choose pediatrician... if you are not getting satisfaction there with that one, find a new one who will work with you. Three PANDAS children is just too hard to even think about doing without the support of a pediatrician on board with this. I hope things improve quickly.

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I have to say my daughters behavior is out of control. I can't reason with her, all she does its whine and cry meltdowns for no reason. She its defiant and wow so fresh. Never learning from her mistakes.

Three! That just sounds overwhelming & I am not in your house. So sorry.

 

Have you read aboot all the "signs of OCD" in a young child? What seems like it has no reason, is irrational or defiant or even fresh, may very well be because she is "listening to the urgency of OCD" rather than to you. Here is an old post where parents put together some examples: http://www.latitudes.org/forums/index.php?showtopic=6153&st=0&p=47369&fromsearch=1entry47369.

 

You may find ERP tools helpful in your home, while you continue to search for the right medical answers to get to remission. Maybe start with the book "what to do if your brain gets stuck". It's not a cure, just a tool to help keep things under control as much as possible.

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How long has your child been on the Zith? Has your child been tested for Myco P? I ask because I know some kids who tested + for Myco P w/ no symptoms went on to take an antibiotic for it then developed the cough. Like the antibiotic drew out the symptoms.

 

I know for awhile Biaxin was being given to Myco P kids...is that still happening?

Edited by Vickie
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If it is pneumonia you will see your child having high fevers and soaking night sweats. There may or may not be a cough. You may also see vomiting.

 

My son had bacterial pneumonia in November. Usually, they treat bacterial pneumonia with azithromax.

 

My son was on Augmentin when he got the pneumonia. My pediatrician gave me a little remark "See, this is what happens when on long term antibiotics. Antibiotic resistant pneumonia."

 

I didn't say anything back but augmentin would not kill the pneumonia anyway. Pneumonia is treated with azith.

Edited by PhillyPA
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Nothing like a caring, supportive doctor..... <_<

 

 

My son was on Augmentin when he got the pneumonia. My pediatrician gave me a little remark "See, this is what happens when on long term antibiotics. Antibiotic resistant pneumonia."

 

OMG!! I would switch doctors. Wow, that makes me mad. I am usually kind of a calm person, and just hearing that makes me want to slug him. Let's at least keep the debate factual, not abusive and fear based, condescending, and just plain mean. Like we don't already worry in our hearts every day.

 

Vickie, I still hear biaxin for myco, just short term use. Would love to hear an update from someone using?

Edited by Meg's Mom
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Omnicef can cover pneumonia too. Can go to drugs.com and read about it. also rxlist.com

 

some strep pneumonia strains are zith resistant esp out east.

 

If you have omnicef and can give at least 10 days you could cover for both strep and pneumonia. It does sound like it could viral or strep.

 

In my prayers

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Hi - I am wondering if you went to the pediatrician. It does seem that would be the first place to go. I'll put my 2 cents in too that it could be a sinus infection - I can't hear your son's cough - if it is more gaggy than lung-ish then it could be post nasal drip.

 

If your pediatrician is not supportive of the PANDAS diagnosis - especially after 2 IVIGs- then you need another pediatrician. I know that may sound overwhelming, but I finally took the plunge and changed pediatricians in September. I found another Mom with a child with PANDAS that lived nearby and found out where she took her kids. She had just recently changed because she found another family with PANDAS. Now we have at least 3 of us going to the same pediatrician. The pediatrician is not a PANDAS expert, but is familiar with the research and is supportive of what the PANDAS docs say. It has made world of difference.

 

Also - even if you cannot afford another IVIG for your child, I would still recommend contacting Dr. B if you were happy with him as a doctor. We did phone consults with him for 6 months (every 2 months or so). I don't remember the exact cost of the phone consults (maybe $150?). Whatever it was, it was cheaper than driving to his office and getting a hotel room (long distance for us). He asked lots of questions about illness in the rest of the family and we talked about illnesses my son's friends had been experiencing so he had some ideas of germs he had been facing. He was able to isolate out the potential causes and give us direction that we shared with the pediatrician and the ENT and my son was feeling better in a matter of days rather than months.

 

Keep us posted on how you are all doing!

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I'm sorry I gave such a short reply last night. I didn't mean to sound so heartless :unsure: Anyhow, it's easy with this disorder to assume everything is from strep, or pneumonia, but I truly believe that these kids, or at least a group of them, while perhaps initially started with strep, may react to viruses. And some of these kids might ONLY react to strep. But they are kids, nonetheless, and not every illness is strep or pneumonia, whether the child is having an episode or not. Not sure if that makes sense, but my point is that dosing up abx every time the kids get sick might not be effective, as sometimes a kid can get sick, have an episode or not, but just be sick--with a simple childhood virus. Don't get me wrong, it always drove me nuts when I would take a child to the doctor and all I would hear was "it must be a virus"--but after having 4 kids, I really think, sometimes, its just a virus.

Not sure if this helps or not....I know we all are in battle mode, and want to take on every slight illness with a full army---abx, supps, etc. Just not sure any of it helps in some of these situations where the kids are "just sick."

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