what should I do?

[butterflymom]

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Edited October 5, 2015 by tampicc

[Tamistwins]

Honestly....at a wrestling tournament....but I jave to say.....it could just be viral

Lol of course that's what the doc said after we waited an hour in a waiting room full of pple. They swabbed him and rapid was negative, waiting to hear from 48 hour culture. Now my daughter i s coughing and complaining of throat and ear ache and today I have a cough and my throat is killing me. My babies behavior went downhill. Oy hoping for better times.

[Tamistwins]

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.

I have to say I don't like the pediatrician's office. They know we are being treated for pandas yet they don't make an effort to read up on it o r give any support. I asked if maybe his cough is new mycoplasma infection because hard for Him to get rid of it, what did they say.... Whose treating him for pandas... She thinks I should give him a call to discuss... Hello ur the pediatrician why don't u know what to do if they'd an active infection? I was pissed to say the least especially since dr.b is not easy to get a hold o f.

[Tamistwins]

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.

Thank s for the advice.. But really she its so nasty lol I know she does have some ocd like she lines up all her dolls she also hoards, won't throw out tags from clothing...I pray I won't find her on that tv show where people are buried under their junk. She has fits if I throw out any thing. She puts things in the corner on the floor in her room. She saves everything, menus from restaurants. Sigh.. With all that said..I still think part of it must be just being fresh. She talks back..I think she picked up on things because her brothers issues were more apparent, seems like she wants the negative attention. I don't know anymore I'm just rambling. Uch my throat hurts.

[Tamistwins]

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?

Hi Vickie,

My son had been on and off on zithromax for over a yr. In between we tried augxr, biaxin and others. He shows in bloodwork mycoplasma that we treated with biaxin, even cipro but very hard to get rid of I'm wondering if he has it again. So I added on my own omnicef to his zithro, dr.b once gave me a script for it to try with zitgro. At that time I didn't see a positive change so he told us to stop.

[Tamistwins]

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.

Hi I think mycoplasma doesn't always have those symptoms. Had we not run bloodwork i would have never known he had it. He did have a cough but nothing to alarm me that it would be pneumonia. When my daughter was younger she was very ill up until then she never had fever except for low grade. But one yr she had a cough and a high fever. Doc said was bronchitis gave needs. That night we were in we her neck hurt and she was so lethargic. She had pneumonia, wheezing. It was awful. But mycoplasma no similar alarming symptoms.

[Tamistwins]

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

Thank you already started it. His fever us down today, still bad cough but I hope it helps. Ped sent me away saying vitsl and giving me nothing. Not even steroid or nebulizer if croup.

[Tamistwins]

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!

Hmmm if I were to change pediatrician's I would have no clue where to go. I don't think anyone around here is a believer, no support. Because I gave been to pandas specialists I don't need ped for antibiotic script but because I have a 19 month old who also has pandas or pitands I want a ped to be in touch with specialist and be aware of what we are going through. I don't get it, there are so many articles on the subject now... Why are these doctors not learning about the condition? why would a ped who knows they have a patient with pandas not show more interest in learning.

[Tamistwins]

I'm sorry I gave such a short reply last night. I didn't mean to sound so heartless 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."

My children have positive strep diagnoses too many to count throughout their childhood. Then we have the times I was certain it was strep and told viral..I would go to ped 3-4 times before they finally saw something. What if they treated ask those times that they thought was vital and was really infection maybe my kid s wouldn't be where they r now. The only bacteria they test for its strep. Doesn't mean if not step that its not bacteria. What if rapid was negative and they didn't test48 hours...i didn't know to ask then. Anyway my son i s not strictly strep he has mycoplasma and last yr ebv

[Tamistwins]

I'm not sure what state you live in, but this is the time of year that tummy bugs go around. Kids are throwing up at my kids's elementary school here in Indiana daily right now. It is probably a virus here, and I think it went through our family mildly with just some tummy aches. . . (we escaped vomiting and diarrhea this time, thanks maybe to the high dose probiotics we take). My PANDAS son reacted with some behaviors this week, but it seems to be diminishing within a few days. I hope this happens for you. Good luck!

Thank you! I don't think its a tummy virus. My so n usually gags when strep he hasn't vomited ask that much for me to think its that. And all of our throats hurt. I hope we all get well soon and threat your family stays healthy. My sons ocd which was improved to an extent uss really acting up again.