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My daughter is due to come off from Topamax on June 4th.

If things take a turn for the worse I have deceided to try the antibiotic route just to see if they help. This will help me feel better in knowing I am seeking the proper treatment for her.

If I see a change with the antibiotics I will for sure pursue the Pandas route and have the titers re-checked and then find a doctor who is willing to help. (This will surely be a long journey not to mention a frustrating one)

 

If I see no change in antibiotics I will accept her diagnosis as a tic disorder or even possibly TS and pursue a completly different path.

 

My trouble is getting any doctor to try this with me. No one will prescribe antibiotics unless she has a confirmed bacterial infection and her neuro's want elevated titers....

 

I just now was searching on line and see that the one antibiotic talked about alot here (zithromax) is available on line without prescriptions. There is also a generic one available.

There are tons of places offereing this.......has anyone tried this. I feel kind of leary ordering a drug on line not knowiong for sure that it is exactly what it says it is. I am sure alot of you will know what I am talking about.

 

So....anyone order on line and has anyone been using on line zithromax????

 

Just curious I guess....

 

The time is coming so quickly for us to ditch the topamax! I am a nervous wreck and I am trying to be fully prepared over here and ready to try other things that we have not done yet before resorting back to Topamax (if we have to anyhow)

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I can't answer your question, but, I was just curious, My Rose, why you would prefer to use zithromax over Topamax. Both are drugs. You already know that the Topamax works well for her with no side effects. Antibiotics have side effects too. My son had walking pneumonia last year and was prescribed Azithromicin (sp?). I read the warning on it, and it terrified me.

 

I know you're scared and don't want to see the tics return, but if you are looking to confirm her diagnosis by which drug she responds to, I think you have already done that. I can't imagine that if she were going to have a neurological flare in the presence of strep that the Topamax would have stopped it.

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I understand your point but the symptoms of Pandas are so similar its hard to know and it troubles me wondering about Pandas.

I guess understanding that the swelling over long periods of time is unreversible sis what bothers me the most.

Its just strange with the sudden onset of the OCD and tics. The frequent urination, the confessing etc....

All confirmed Pandas seemed to have these.

In response to the topamax, someone pointed out that maybe the topamax is actually a good symptomatic treatment for PANDAS and somehow stabilizing inflamed neurons???

 

I am not thinking long term anitbitioics. I would look at all options if she responded well to them. Even IVIG or possibly other supplements. I just do not know but I have to have some validation to fight at the doctors. Its a losing battle right now.

 

ISo I guess maybe I really cannot answer your question but can just say that Pandas scares me more than Tics/TS and I would feel better knowing what I am dealing with. Hope that makes sense.

 

As my daughter gets older and her weight increases I wonder if the low dose of Topamax would still do it. And so the increase in Topamax dose would then bring side effects I am sure. I do not know but again I am just thinking ahead and trying to somewhat prepare myself. I just fell apart when this all started and to be honest I am not sure if I could handle all that again. Not to mention my daughter.

 

The higher doses of Topamax have one side effect in paticular that I worry most about and that is the over heating. We live in Florida so its scary to think about that.

 

I truly guess I am in agony over what might be to come....maybe I am worrying about nothing, but its hard to stay on that positive road of thinking after all we went through here and still do not have a confirmed diagnosis of any kind.

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MyRose-

 

I think it is crucial to rule out PANDAS 100% before concluding it is a non-PANDAS tic disorder, b/c if you don't, the child may be living with untreated strep.

 

My suggestion about Zithromax, if you decide to try it, would be do most definitely do it for at least 10 days. My kids are doing well on daily Zith. I have not bought ity online and I would be leary of doing so b/c of not knowing if it is exactly the same as the pharmacists. I have heard stories about people making lots of $$ selling fake pills.

 

One way to try to get it if you can't get a physician to prescribe it is to try to get it from a walk-in clinic. Tell them you get ear infections or strep or sinus infections and do not usually test positive, but always respond well to Zithromax. You may be able to get it that way. I think it is such a shame that any parent would have to go through this to just get a short term medication that is proven successful just b/c the physicina doesn't think it may work.

 

I think trying every avenue is the best for your child, to make sure 100% that you know what you are dealing with.

 

Good luck!

 

Colleen

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MyRose-

 

I think it is crucial to rule out PANDAS 100% before concluding it is a non-PANDAS tic disorder, b/c if you don't, the child may be living with untreated strep.

 

My suggestion about Zithromax, if you decide to try it, would be do most definitely do it for at least 10 days. My kids are doing well on daily Zith. I have not bought ity online and I would be leary of doing so b/c of not knowing if it is exactly the same as the pharmacists. I have heard stories about people making lots of $$ selling fake pills.

 

One way to try to get it if you can't get a physician to prescribe it is to try to get it from a walk-in clinic. Tell them you get ear infections or strep or sinus infections and do not usually test positive, but always respond well to Zithromax. You may be able to get it that way. I think it is such a shame that any parent would have to go through this to just get a short term medication that is proven successful just b/c the physicina doesn't think it may work.

 

I think trying every avenue is the best for your child, to make sure 100% that you know what you are dealing with.

 

Good luck!

 

Colleen

 

 

 

Try a DO a doctor of ostopath(sp) sometimes they understand different treatments and the walk in clinics are a great idea I go for myself sometimes when I need more zith for danny Ill do whatever

Good luck why are you going off of the topamax? Dannys taking 25 mg the tics arent going away but he seems much less aggravated hes also on 500mg 2x per week of azith and buspar 15mg 2x per day tics alot but not ANGRY

Melanie

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My daughter is due to come off from Topamax on June 4th.

If things take a turn for the worse I have deceided to try the antibiotic route just to see if they help. This will help me feel better in knowing I am seeking the proper treatment for her.

If I see a change with the antibiotics I will for sure pursue the Pandas route and have the titers re-checked and then find a doctor who is willing to help. (This will surely be a long journey not to mention a frustrating one)

 

If I see no change in antibiotics I will accept her diagnosis as a tic disorder or even possibly TS and pursue a completly different path.

 

My trouble is getting any doctor to try this with me. No one will prescribe antibiotics unless she has a confirmed bacterial infection and her neuro's want elevated titers....

 

I just now was searching on line and see that the one antibiotic talked about alot here (zithromax) is available on line without prescriptions. There is also a generic one available.

There are tons of places offereing this.......has anyone tried this. I feel kind of leary ordering a drug on line not knowiong for sure that it is exactly what it says it is. I am sure alot of you will know what I am talking about.

 

So....anyone order on line and has anyone been using on line zithromax????

 

Just curious I guess....

 

The time is coming so quickly for us to ditch the topamax! I am a nervous wreck and I am trying to be fully prepared over here and ready to try other things that we have not done yet before resorting back to Topamax (if we have to anyhow)

 

 

myrose, I would be very careful of medications, especially generic ones, purchased off the internet.

 

you have no idea what is in them and a lot of generics contain Chinese ingredients. sadly we have seen how some products made there have been filled with harmful ingredients.

 

have you asked Dr Franz if she would be willing to do a trial run on zith? she seemed very open minded when we saw her.

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Thanks for all your advice. Both the generic and brand name Zith is available on line so I thought maybe that was where some of you get it.

I didn't order it because of the exact same things Cheri mentioned.

Our old Pediatrician (Dr. Franz) will not do it. Two neuros will not do it either. I have also done exactly what you have mentioned which is go to the clinics inside Walgreens but they only give you a 3-day supply.

She cannot take penicilin (had a reactin to it) and so Zith would be great for her.

 

I am stumped for now but will keep trying to somehow figure this out. Its seems I took a break from it all but I have put this long journey aside too long now and I just want a correct diagnosis.

 

This really is just sad that everyone looks at me like I am crazy when I mention "Pandas" Our first pediatrician never even heard of it.

 

What puzzles me the most is why the Doctors are so leary of a trial period of antibiotics but have no problem prescribing drugs????

 

I will have to think of my next step here soon..... :(

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one of the reasons antibiotics are by rx only is that they sure can have bad side effects....some research even suggesting possible mitochondrial damage with over exposure

 

what about an appt with Dr Murphy in Tampa? you dont have to accept any rx for other drugs if that is suggested but perhaps she may rx the zith? I really dont know where she is at with her current protocol for PANDAS dx and treatment since we last saw her in 2001

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Hi Myrose

I understand your concern that if you dd is PANDAS you don't want to just mask the symptoms with topomax...but would like to address the underlying cause (strep/auto-immune dz).

 

Is your dd pretty much symptom free on topamax? were you going to (plan a) go off the topamax and start the azith right away? or (plan b ) go off topamax and wait for tics and then try the azith? One problem with (plan a) is that if you go off the topamax and do the azith right away and your dd doesn't tic you don't know if is actually the azith doing anything or if she's outgrown the tics for some reason and she would have been fine without either drug.

 

I think if your dd is currently assymptomatic I would go off the topamax and see how things go. If she starts to tic wait a few days and then definitely get a throat culture. (I say to wait a few days b/c if you culture right away I believe you may have more of a chance of getting a false neg. b/c the strep numbers may be low early on). What you want to do, if possible (as "evidence") is correlate your dd's symptoms with strep. :( You may have trouble getting more than 5 days of Azith at this point...so then you might need to re-negotiate with your doc at that point (or try colleen's sneaky plan).

 

I wouldn't necessarily bother with strep titers (ASO, anti-dnase B ), since lots of PANDAS kids will have neg. aso/anti-dnase b titers (see buster's Jan 12, aug 24 posts on ASO titers under pandas essential threads) and these titers aren't actually the source/cause of the problem in PANDAS. What actually would be useful (diagnostically) if your dd has an excerbation would be to draw anti-neural antibody titers and CaM II kinase levels...unfortunately these tests aren't commercially available (that I know of). Buster has a post on this http://www.latitudes.org/forums/index.php?showtopic=4785

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Yes she is symptom free, some slight OCD but nothing different than what I do myself. Her biggest thing here is that she will not use a utensil for two foods. She has to have a new one for each different food.

I am not worrying about, it was though worse and involved many other issues beforee we began Topamax.

 

The only real issue that pops in and out is some sensory issues with clothing. She is to start her therapy in June for this again. Its quiet at the moment but I want to stay on top of it. Its weird how it comes and then its like its not there????

 

She currently has nasal congestion in which we keep under control with benadryl sometimes before bed, but more so with SinuCleasne (the all natural sinus relief)

What is interesting this time is that although the nasal congestion usually does hit her in April/May it is usually gone by now.

We have had no rain in like forever here in Orlando so this may be a factor but she complained of a sore throat yesterday and today and I believe I am going to pop in to one of those Walgreen clinics today with her to check for strep. She has had a few friends over the past few days in the pool screaming their heads off and so this accompanied with the nasal drip would cause a sore throat but I am just curious.

Lastnight when I brushed her teeth her eyes seemed to do a little blinking and I have not seen that isince last year. It was also the last tic to go away completely.

It stopped as soon as the brushing was done and I have not seen it again. Although we have a salt filtration for the pool the chlorine is still there in low levels so two days in the pool could have bothered/irritated her eyes as well. She slso complained yesterday that her eyes were burning. I told her to take a break out of the pool for a bit. She never closes her eyes when in the pool even when she jumps in they are wide open so this has always been an issue.

TOO MUCH CONFUSION!!!!

We are though coming off from Topamx on June 4th (Day after her school lets out) so we will see what happens.

And yes I was wanting to try the antibiotics if things came back full blast before I resorted back to topamax...I was going to wait though for tics to return (if they did) wishful thinking here...

 

Lastly...I brought in all Busters posts to my Neuro about the titer levels not having to be elevated....still nothing.

 

I will see what the doc says. I am going to have us both checked for strep. I too had a sore throat here and there over the past week but the brush fire smoke we had was AWFUL and so I figured that was the culprit. We are going to have an issue with her letting them check so I am not sure what the outcome will be. If anything and it is strep....hopefully I will test positive and then they will just give her the anitbiotic without swabbing her. The screaming and crying may sway them as well. Just what I am looking forward to this afternoon.

 

On the bright side WE ARE GETTING RAIN!!! Cheri.....are you getting any over there? It looks like you are. Thank GOD for this! We have too many vacant wooded lots around us and I was starting to worry!

 

Thank everyone for all your input...I will let you know what the doc says!!!

 

PS) Cheri....I tried to get into Dr. Murphy when this all started and they told me she was moving and not seeing any patients. Then our neuro (Dr. Davis) had a nurse practioner who was supposed to call her and see if she could somehow get us in. But...as usual...NOTHING.

I even pointed out to the nurse practioner that if she could just chat with her (she apparently knew her) that she could get info on pandas and antibiotic treatment. Guess I got sick of calling every other day to get a voicemail and then no return reply.

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MyRose,

 

Stuffiness can sometimes be related to enlarged adenoids especially in children with a strep history.

 

Before my son had his tonsils and adenoids removed, our ENT put him on Nasonex b/c his adenoids were so large it was causing sleep apnea. The Nasonex must have shrunken his adenoids (temporarily) b/c his sleep apnea greatly improved. This could possibly be more "evidence" for you to use b/c a lot of times when you KNOW your child has strep BUT get a negative culture, it is very possible that the strep is in the adenoids. Just a thought.

 

I agree that doctors are very quick to use other medications, some with more side effects than antibiotics, rather than just TRY a trial of antibiotics. Perhaps you could address it that way with your doc. Ask him/her to give you a reason why it would be harmful to just do a trial of Zithromax. I think he would be hard pressed to come up with a legitimate reason why you could not do a trial, given your child's strep history and abrupt start of tics.

 

I read over most of your posts, back from last year also, and I am NOT trying to diagnose your child, but her history is extremely suspicious for PANDAS. Her history is very similiar to my daughter's when this all began right as she turned 5. Just another thought.

 

How did today at the clinic go?

 

Colleen

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Colleen,

We had x-rays on the abnoids when this all started, and they also put her on Nasonex (the nasonex was before the xrays)

We thought her abnoids would have been enlarged but I guess they were not.

 

I posted our outcome on my other started post by mistake.... Thank You for taking the time to also read my old posts and understand my concern about Pandas.

It seems though that all symptoms are basically the same for Pandas and Tics disorders.....is there any one thing that stood out for you?

as far as symptoms?? Just curious

 

If you do not have time to get to our outcome from today....a quick re-cap...I tested negative (must have been the brush fire smoke as I thought) They could not get he swab in correctly on my daughter although we tried really hard!

It was negative but without swabbing the correct way we could not be sure if it was an accurate negative.

It was noted that her throat was indeed red, no temp, but she felt a sinus infection is there after looking at her nose and ears.

 

To be safe, I guess she prescribed the azithromax. 3 tabs, taken 1x a day. 250 mg.

 

Because of the sinus infection I cannot save the azithromax for when we go off from topamax and not to mention it would not have been enough. She wouldn't treat me with anything LOL

TOO bad Azithromax wasn't also prescribed for crazy people....maybe then I would have been put on some LOL

 

Thanks again and have a nice night.

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