please need help again......

[Kimflow]

Hi,

It is 239 am and all heck is breaking lose again.

strep throat 4 weeks ago that presented only with verbal triggers, sensory/motor defensiveness, etc.

they gave me z pack 5 days. Then they gave me amoxicillin 250 mg BID 10 days.

THings improved but day 8 based on return of verbal triggers, waking at night, I knew strep was back.

Saw specialist in New York. She gave me zithromycin daily 250 mg and was not going to prescribe additional strep antibiotics but looked at his throat and then prescrbied keflex.

Yesterrday much improvement. This morning day 8 of keflex, once again noted that he refused to wipe his own nose when I gave him kleenex. Also had a verbal trigger where he thinks I need to help him put his foot down. Went on to have good day at school.

Bedtime......many verbal triggers (foot down, there you go, sit down)....all while he was screaming in panic almost for me to repeat and do this for him. Finally got him to sleep. 130 am.....woke, scratching at outside of throat (usual sign of sore throat), needed nebulizer. (this is third time in 3 weeks he has needed a nebulizer out of hte blue). I gave him one but as he went back to sleep, had several more HELP ME< THERE YOU GO....verbal triggers screaming in panic. He is now back to sleep.

Is this the strep once again beating another antibiotic. I am so scared. We can't get past Day 9 without relapse.

I have Augmenting that another provider gave me the day before I went to Dr. Schulman in New York personally. I will email in the morning but thinkign I need to move on to Augmentin. I am so scared at setting up resistance. This will be our 4th antibiotic in that many weeks to try adn kill strep.

Just this afternoon, my husband said how he has improved so much. The choreiform movements have decreased on the daily zithromax. Now why is he having return of strep throat. This could not be that the strep are coming out of biofilm......I doubt it as he doesn't seem to have die off from the start of any of these antibiotics.

Please advise. This is a horrible rollercoaster.

Kim

[PowPow]

I do not think you need to worry excessively about causing resistance, maybe resistance is already the problem?

Why don't you stay on keflex (or is it zithro) and add augmentin? They are not exactly interchangeable. not telling you to play doc, but.sometimes you have to. Any idea what is triggering his respiratory issues? could he have myco p? zithro works on that, allegedly;) that could cause an acute throat and resp response. Just an idea.

I hope today is better and you get an email response quick .

Hugs to you!

Edited April 26, 2012 by PowPow

[Tamistwins]

Hi have you tested for mycoplasma pneumonia? Maybe you need to change to something like biaxin. Your son sounds so similar to mine:( he also makes me take such part in his OCD. I need to repeat I love you too frequently maybe 5 times and if not the right way do it all over again. Have you checked for Lyme, the walking back and forth at night seems to be related to thy as well. I hope things improve soon!

[Kimflow]

all of those tests have been drawn. No results yet.

 

I am off to get augmentin prescription although ti scares me to death as in the past, augmentin was implicated in autism for causing ammonia to rise in the brain......my son already has autism already.

 

No email response yet from doc in NY.....I hope she is agreeable to the Augmentin. I am going to get it this morning to start it.

[Kimflow]

labs are back...lyme 2 bands only--- indeterminate, mycoplasma, babesia, bartonella all negative. has been exposed to PARVO but it is now possibly inactive.

 

No one can tell me what to do.....assistant in DC office says if you go to Augmentin, have to stop the zithromax but that has been the one thing that stopped the choreiform movements for the most part.

 

The Augmentin dose is 875 mg once a day. He is only 50 pounds. I have to worry about his kidneys or whatever detoxes antibiotics.

 

I will wait to see what DR. S says.....maybe she will have some wisdom for me. She was a kind soul.

 

DC office said maybe gut bugs growing causing verbal triggers. I say why would the return of symptoms be exactly the same pattern that we had prior to diagnosing strep throat.

 

I have no idea what to do. Finish the keflex and pray and keep taking the zithromax daily as it is the one thing that seems to be working. Maybe through the immunomodulation daily, the body will kick the rest of the strep.

 

Right now he is much better than he is at night....why would that be? Thanks for listeing to me ramble to sort this out. Need that crystal ball.

 

Kim

[fightingmom]

Kimflow, which lyme bands were indeterminate?

My son is currently on Augmentin and Zithromax and it's been the best 2 weeks we've ever had (with exception of the 10 days after doing the steroid burst). Is it because of the autism that they don't want you to do both together?

[PowPow]

my (non-autistic) 12 yo is on both zithro 500 mg QD (pos active myco p infections) and Augmentin XR(strep).. from PANDAS doc

[Kimflow]

The bands were P41 and P66. I have to go research what this means.

 

The DC doc. deferred to NY doc who is experienced with PANDAS. Waiting on her reply.

[fightingmom]

The bands were P41 and P66. I have to go research what this means.

 

The DC doc. deferred to NY doc who is experienced with PANDAS. Waiting on her reply.

 

To be clear, you are saying you were referred to an LLMD? in NY that also has experience with PANDAS? If so, would you mind PM'ing me that Dr.? Or, are you saying you were referred back to the Dr. you already saw in NY?

Edited April 26, 2012 by fightingmom

[bulldog24]

I know its hard momma but try to breathe.

 

41 and 66 are nothing to worry too much about. They are not lyme specific.

 

Which were indeterminate?

 

Now as far as resistance goes, trust me on this. I have taken antibiotics for 5 years straight. Still not resistant. Not saying it will never happen. But you need to deal with whats happening now. I would worry about today, kwim???

 

my son takes 400mg augmentin 2x aday PLUS 200 mg zith.

 

I am not saying this is what your kiddo needs.

 

I feel so bad. I can hear the stress in your messages

[bulldog24]

If I had to decide based on the info you gave, I would do augmentin and zith. ###### with the keflex

[Mayzoo]

Is your Augmentin the Augmentin ES? You can dose higher with that one because of its structure. My DD was 50lbs and took 1050mg twice a day of the Augmentin ES.

 

If he is still positive for strep, you should consider getting a sensitivity panel done to see what abx his strep is sensitive to.

 

My DD was confirmed for strep by a rapid test on 1-5 (asymptomatic) and I am unsure how long she had it before that. Her history looked like this:

 

1-5 + rapid test. 10 days amox 500 twice a day.

 

1-15 + rapid test. 10 days augmentin 1050mg twice a day.

 

1-24 + rapid test. 6 days of zith 250mg per day.

 

1-30 + rapid test. We decided to go forward with PANDAS treatment protocol in hopes that the strep cleared along the way. 30 days zith 250mg per day.

 

2-29 - rapid and culture test. 30 days zith 250mg per day

 

3-22 - rapid test. 30 days zith 250mg per day then attempt titrating down.

 

I am not titrating down yet because I want to get some OLE on board first, and my first order was lost in shipping, so I just started it a few days ago.

[Kimflow]

Mayzoo,

 

I am going to give the Augmentin. It says Amox TR-K CL 875 mg. DC doc said give it one time a day. The part that makes me nervous is that the doc that prescribed stepped out of the room twice to consult/ask questions of the PA that I am to see end of May locally. That practitioner has experience in treating PANDAS and Lyme. She advised the dosing but did not actually see my son.

 

It seems more commonly dosed twice a day but I did find that high doses are bacteriacidal so maybe that is what she is going for .....he is only 50 pounds.

 

This is so nervewracking for me I suppose as I have already been fighting autism for 8 years....I guess I am a little worn out stress wise because I have fought autism like it was the first day of the battle every day for all those years already. Anyhow, I also never quit, so charge on.

 

Anyhow, I am going to give this and the zithromax.

[airial95]

My duaghter - who is normally my mild PANDAS case - just had a particularly nasty episode - her worst yet. She normally clears with 30 days of Cefdinir, our doc gave her 5 days of rifampin along with the cefdinir and it worked like a charm. (The infectious disease specialist recomended this for my chronic strep/severe PANDAS son)

 

The pediatrician said that shd likely had a resistant strain. He wouldn't put either of the kids on long term rifampin (aparently it's a doozy!) But it worked to clear that particularly stubborn/nasty strain. You might be dealing with something similar.

[Mayzoo]

Mayzoo,

 

I am going to give the Augmentin. It says Amox TR-K CL 875 mg. DC doc said give it one time a day. The part that makes me nervous is that the doc that prescribed stepped out of the room twice to consult/ask questions of the PA that I am to see end of May locally. That practitioner has experience in treating PANDAS and Lyme. She advised the dosing but did not actually see my son.

 

It seems more commonly dosed twice a day but I did find that high doses are bacteriacidal so maybe that is what she is going for .....he is only 50 pounds.

 

This is so nervewracking for me I suppose as I have already been fighting autism for 8 years....I guess I am a little worn out stress wise because I have fought autism like it was the first day of the battle every day for all those years already. Anyhow, I also never quit, so charge on.

 

Anyhow, I am going to give this and the zithromax.

 

My DD has autism too along with three brain neurological malformations. She is ten now, and is roughly 4 or more years delayed expressively, but her receptive language is normal. It is very frustrating for us all, but probably her most. I have difficulties extracting or interpreting her symptomology most the time.

 

I was beside myself when this all started in September last year with kiddo. I was getting ten to twenty minutes of sleep, then up for 2-3 hours (nightmares), then ten to twenty minutes sleep repeating all night long. She stopped talking all together for three months, and hollered almost non stop for that three months. Not screaming, not in pain, just a vocal tic of hollering. Then for two more months she began to speak minimally, but always in a whisper. She refused to go outside for four months (thankfully we home school so this was not a huge traumatic deal. I lost almost 15 pounds and she lost about 5 lbs due to food issues. There was a lot more we dealt with too.

 

The good news is we are about 98% back to her normal. We are able to do school work again. We are sleeping and eating again. She speaks in a normal tone again. There is hope to get back to your family's normal.