thereishope

So, is your daugher on any antibiotics right now?Have you asked the ped for a refill based on PITAND/PANDAS symptoms alone? As for your son, has he been to the doctor for that cough? If not, I suggest taking him in. My non-PANDAS son only symptom was a cough. Remind the doctor that Myco P is contagious with a lag in between catching it and symptoms surfacing. If they give you a speech about why they think he doesn't have it, ask them if you can just rule it out with a script of Zith. That cleared my non-PANDAS son of it. He did cough for about a week after finishing the meds but the ped said that is expected.

Here is the link to the FACEBOOK page. We do not have a link a Pepsi page yet. Consider the facebook page our "homebase" for now. This is where we will continue to post info on PANDAS and be the main form of communicationg with voters. We will update on ACN/lattitudes as well as well. http://www.facebook.com/pages/Pepsi-Refres...82.309749594..1

The Benadryl thing wouldn't cause damage right now so don't spend time worrying about it tonight. But if you end up getting a list of questions for the doctor or you checking with hm at some point, it may be worth asking. You just don't want the Benadryl to slow down recovery but stopping the congestion from coming out of her chest. Shoot, I don't know! I did mention to the doc that I was giving her benadryl (along with zyrtec and her nasal sprays too) and he did not mention anything. I just looked up the side effects of augmentin and diffiucultiy breathing and confusion were two of the symptoms. Maybe her breathing got worse as a reaction (maybe) but the confusion I'm sure is what the doc was worried about. That describes her strange staring responses. It was like she did not hear or understand me. Susan

My son takes the generic dye free Benadryl too. Like your son, once when he wakes up and some time between dinner and bed. It is hard to remember.

I really don't know anything about this so someone please chime in.... Benadryl. Is that okay to take with near pneumonia? When my son had the sinus infection, I was told no Benadryl. I never had pneumonia. Do they want you to continue to cough in hopes of breaking it up? I would think a decongestant would be better than an antihistimine?

About refills and Dr T....When you want a refill, can you have the pharmacy try to call the doctor to refill it? Do pharmacies do that? Perhaps if all he had to do was "okay" it directly with the pharmacist it would be easier? Simplygina...what allergy meds does your child take?

I agree to test it. Fixit's son is sensitive to salicylates as well.

Oh no! When was her last allergy shot in relation to this? So he thinks it's the beginning of pneumonia? Did he say to give her a decongestant, Mucinex, or anything else? Poor baby! As for the steroid, I would just say to keep her at home for now. Not that you were really going to take her anywhere like this anyway. She's in my prayers. She'll be okay. Believe that.

My son does get red in the cheeks and flaming ears but it is because he is VERY fair skinned. So... I am "stuck" with this problem.

Some people have said that their child will experience an increase in PANDAS symptoms whenever someone in the house is sick, not only with strep. So, just because you see an increase in symptoms doesn't mean he has 5th's, but......be very watchful. Sometimes the PANDAS child's PANDAS symptoms will surface before you see the physical symptoms of viruses and other infections. I hate saying it, but you just may be in wait and see mode right now. Try to keep them away from each for now if you can.

I'm just brainstorming here....was he tested for Myco P? Some kids who have tested + for that, have cited a ramp up in symptoms before improving due to die off. Also, I know some parents who tried Zith and ended up going with something else since it didn't help their kids. Unfortunately, what works for one, doesn't work for another. It's trial and error. Maybe it's a different strain of strep than the first time. Where do you live?

We were just talking about this on another thread. My son is 6 years old. He stopped wetting his bed well before his first PANDAS exacerbation. His first PANDAS exacerbation was at 5 yrs old. He stopped bed wetting (as a part of potty training) probably around 2 yrs old. Just so you know the re-emergence of bed wetting wasn't due to age.For him, what I have noticed is he will wet his bed at night when he is getting sick. It is uncontrollable for him and he does not get reprimanded for this. During his last strep triggered exacerbation, he wet his bed every night for over a month. He may have even wet for multiple months. I can't remember. Then, out of now here, it stopped. It has been explained to me before just how and why it is a symptom of PANDAS, but I don't know if I can remember the explanation exactly rigth now. But, for some, it definitely a symptom of PANDAS (or illness) coming on. Something to remember is that any PANDAS symptom can resurface once the wheels of PANDAS are in motion. So I don't see why bed wetting couldn't be one as well. So, there is a chance it can be strep related or perhaps another illness is surfacing. I say make note of this and track his other behavior and health over the next couple of weeks.

This is exactly one of the reasons why a correct and early diagnosis is so important! Once they are on SSRI's and such, the lines become blurred as to what is helping and docs start assuming the meds don't work, change then meds, increase them, it becomes a vicious cycle. Also, about the bipolar comment. Just so you know, some on here have been told that about their kids..."Maybe he's just bipolar". I was told that about my son. He's not. Doctors just start grasping at straws when they don't have answers.

My son showed signs of Oppositional Defiance Disorder (ODD), but his bed wetting wasn't part of it. I never reprimanded him for the bed wetting. It is a symptom with PANDAS. Not saying, ether can't be other causes for it, but it is definitely a symptom. As for strep in the gut, I think they do a stool a sample. Does your son take PROBIOTICS? If not, I suggest starting those too. They should be spaced out from the antibiotics.

Do they suspect that he is a strep carrier? Some people do go on to be strep free after t and a, but we all know that is not always the case. You can get strep even after having tonsils removed. I think it is a personal decision. I had my son's removed, he even got strep a month afterwards, but I still don't regret surgery.

I'm so glad you are seeing moments of improvement! As for the diarrhea, I really have no suggestions, but isn't it crazy how you just can't catch a break sometimes!

Welcome. So, did they find he had strep in his gut? As for PANDAS symptoms, my son did not have tics. He also had many of the problems you listed. I have also learned that when he wets his bed (he's now 6) it means he's probably getting sick. My heart stops every time I hear "Mommmmmmmy!" in the middle of the night when it's wet. Doesn't happen often, but when he was in his last strep triggered exacerbation, it happened every night for probably over a month. So, you are now on Omnicef. How long is that prescription for?

First I'll post a link to your other thread.... http://www.latitudes.org/forums/index.php?showtopic=7580 First,I'll admit I just scanned your other post. There are a few on here from the UK, so hopefully they will check here today and maybe they can give you some advise how to "work the system" over there. I know some have had problems getting strep tests even overseas. If you want a strep test, it may be in your best interest to say that a playmate has strep and your child has been complaining of a sore throat. I don't have a full grasp of the UK system to start suggesting what antibiotics they might give. All I can say is if a child has strep and they are suspected of having PANDAS (even if only by the parent) try to get get something stronger than amoxicillin or penicillin. The most mentioned antibiotics on here are Augmentin and Zithromax. But I want to say Zith is hard to get in the UK? Just so you know, you do not have to have symptoms of strep in order to have strep. Many kids on here never get sore throats or fevers.

If the test results come back and shows she had/has Mycoplasma P, are you going to ask your doctor about switching her to a dif med (like possibly Biaxin or Biaxin XL-I think that's what the suffix is)? If it is Myco, Augmentin wouldn't touch that. When do expect the results back by?

I have a feeling that if she got tested on Monday, but cough didn't develop until Thurs, you can still get results that may indicate infection (if that's what she has). If you are doubtful or nervous about the blood test results, you can do them again in 2 weeks. I believe with Mycoplasma, I read that little hair like things paralyze causing the cough. So, I would think that takes at least a few days to happen. I have nothing medical to back up what I just said. So, was she already on Zith , and at that doasge, when the coughing started or was the Zith added or increased when the cough started?

I would probably switch now. Will they fill the 30 days? Is the preauthorization for continuing it and in order for them to pay for it?

Here's the "lowdown" on this Pepsi thing again. The first of every month, you try to submit your idea to their website (Pepsi). They only accept 1000 a month. As expected, there is a frenzy of everyone trying to get their submissions in. Last month, we didn't get ours submitted since all spots filled quickly April 1 at midnight, we will try to get it in again. If we get our submission in, I believe around mid month, we would get notification that Pepsi legal has "okayed" the submission. Then on May 1 voting will start. Does that make sense? So, right now we are in the mode of trying to people in place so they are ready to vote when we get our submission in. That facebook page will be linked to our submission so anyone viewing our submission on the Pepsi page can view the facebook page. That is also why we are doing blurbs about PANDAS on the facebook page. It gives up the opportunity to get more info out there. For the Pepsi application, there is limited amount of space. The facebook page is where more info is obtained. It has taken us a month to get to that number of fans. So it's good we started that when we did. When you vote on the Pepsi page, you get to vote every day. It's great we have that many people ready to go when we need it. If you have any other questions, let us know!

You tried. At least there is some hope that the changes she is making will help Danny. Please keep us updated.

I am so sorry! This is when depression and anxiety sets in for the parents as well. Let's all pray that the near year of no strep has healed her enough that she will not have a major setback If she can take Ibuprofen, I would probably start giving that for the next week to fend off any inflammation that may occur. You and your family will be in my thoughts and prayers.

Did you get your results from the myco testing? I read that bronchitis can be caused by Mycoplasma.