Improvement with combo....

[kleek3]

Morning,

 

DS4 started on Penicillin 2xdaily in June. Dr.T switched him to Zith in October due to Myco P in labs. Zith was NOT the answer at all. Dr. T then added Augmentin 400/2xdaily to the Zith. We difinitely see progress. Does anyone understand when I say he is talking again? He has been so quiet and indecisive for 6 months now. All of the sudden....he has a voice and lots to say (in a good way). I would say the biggest change with the combo is behavior. However...the tics are still there, maybe 50%. The throat clearing which was our FIRST tic is still strong. His inability to sit still is still present. We are doing the probiotic as well as meds and have weaned him off of yogurt (this was a favorite of his). Trying not to change too many things at once.

 

Question is: The combo helps, do I ask for a higher dose? I am so graeful for the small progress we have had. Should that be enough? It has been so helpful to hear teachers and friends saying I notice a change. Whats next ladies? Thoughts PlEaSe:)))

 

KK

[mdmom]

Don't settle for anything less than 100%. I know that seems like a tall order. But your son is young and you caught PANDAS early in the game, unlike many of us here. He has a fighting chance of recovery considering his age. Continue to advocate and trust your mama-bear instinct. If you think he needs higher doses and you think he could improve more, advocate, advocate, advocate. You are your son's best defense against this.

Edited November 30, 2012 by mdmom

[colleenrn]

My daughter responded very well when we added Augmentin to the zithromax.

 

Colleen

[rowingmom]

We are really finding that ticcing is a result of toxin buildup. I would try to increase detox with epsom salt baths, and magnesium supplements. I would investigate supplementing to help the methylation/detox cycle along. I would support liver function with herbs like milk thistle, and address inflammation with supplements like fish oil/cod liver oil and curcumin.

 

DD11 is pulsing combo abx on the weekends right now. She is now handling the pulse well (during the first three we really saw a tic/symptom flare right away), but mid-week some tics and emotional lability are resurfacing. These are resolved with increased detox - beyond her normal daily detox routine - for a day.

 

Check out the search function for detox, methylation, inflammation. There is a lot of great information on these forums. Definately keep up the probiotics.

Edited November 30, 2012 by rowingmom

[airial95]

I agree, you can get him back to 100%. My son was 2 when he had his onset, he's 5 now. We still struggle with chronic strep, but have found a combo that works for us. He was on azith for 11 months after onset, then switched to cefdinir after he got strep several times on the azith. He was on that also for about 11 months. We swtiched to Augmentin at the time of his T&A - partly b/c the cefdinir also started to fail (got strep several times on that too.) The best we got was about 80% on the zith/cefdinir. We used CBT to help with the OCD (our most lingering symptom) and it worked when he was improveing. We got to 100% on the Augmentin post-op, but 6 weeks post-op he got strep again. This spring, the ID doc gave him a 10 day boost of rifampin with the Augmentin, and that cleared his tics completely (the only thing so far to do so.) We saw Dr. B this summer and he put him on azith/augmentin combo and he didn't seem to improve too much, but there was progress. Then the unlikely happened - he tested positive for strep on the 500 mg Augmentin 2x/250 mg Azith 1z daily regimen.

 

The ped put him on rifampin for 10 days again, and within 48 hours the flare stopped. Dr. B gave him a 30 extension of the rifampin (he was on all 3 for 30 days) and for the first time since the T&A we were close to 100%. He was at about 95% or so. Within 5 days of coming off the rifampin he was back in a full blown episode. Although he tested negative for strep, the pediatrician put him back on the rifampin for 30 days. We're on day 2 of adding it back and are waiting to see if we get the same results.

 

My son had improved so much on the rifampin combo that on Tuesday at the Dr.'s office he said to our pediatrician "When I was on the RYNO (what he calls the rifampin), Harvey (name for his OCD) was gone, now that I stopped taking it, he's back. I don't like it. Could you give me more RYNO to take so he'll go away again?" He's never been this verbal about his OCD or what's going on with him. It was nice to see him self-advocating at 5 too.

[rowingmom]

We also had good luck with a rifampin/biaxin combo. Ticcing disappeared almost completely as did OCD. DD11 was taking it for bartonella.

[T_Mom]

Morning,

 

DS4 started on Penicillin 2xdaily in June. Dr.T switched him to Zith in October due to Myco P in labs. Zith was NOT the answer at all. Dr. T then added Augmentin 400/2xdaily to the Zith. We difinitely see progress. Does anyone understand when I say he is talking again? He has been so quiet and indecisive for 6 months now. All of the sudden....he has a voice and lots to say (in a good way). I would say the biggest change with the combo is behavior. However...the tics are still there, maybe 50%. The throat clearing which was our FIRST tic is still strong. His inability to sit still is still present. We are doing the probiotic as well as meds and have weaned him off of yogurt (this was a favorite of his). Trying not to change too many things at once.

 

Question is: The combo helps, do I ask for a higher dose? I am so graeful for the small progress we have had. Should that be enough? It has been so helpful to hear teachers and friends saying I notice a change. Whats next ladies? Thoughts PlEaSe:)))

 

KK

 

 

hi--Can you please tell me the weight and dosage of Augmentin and of Azithro that your son was/is on???

 

We are considering changing up our d's abx, thank you very much.

[dut]

Hi - are you keeping him off yoghurt cos of strep thermophillus.. if so and he really misses it, maybe he would happily eat kefir instead which is usually made with different bacteria. You can check the brands to see what they use (and double check with Dr T maybe) but it may be a battle you can avoid while also getting good probiotics into him.

 

My ds 5 loves kefir... bit more runny than yoghurt but tasty.... just a thought.

[Fixit]

Morning,

 

DS4 started on Penicillin 2xdaily in June. Dr.T switched him to Zith in October due to Myco P in labs. Zith was NOT the answer at all. Dr. T then added Augmentin 400/2xdaily to the Zith. We difinitely see progress. Does anyone understand when I say he is talking again? He has been so quiet and indecisive for 6 months now. All of the sudden....he has a voice and lots to say (in a good way). I would say the biggest change with the combo is behavior. However...the tics are still there, maybe 50%. The throat clearing which was our FIRST tic is still strong. His inability to sit still is still present. We are doing the probiotic as well as meds and have weaned him off of yogurt (this was a favorite of his). Trying not to change too many things at once.

 

Question is: The combo helps, do I ask for a higher dose? I am so graeful for the small progress we have had. Should that be enough? It has been so helpful to hear teachers and friends saying I notice a change. Whats next ladies? Thoughts PlEaSe:)))

 

KK

 

 

With my ds12 i was lucky to have complete remission w/i a month with only a 10day course of abx...this was when he was young and way before ANY acceptance of pandas.

however when ds10 had strep followed by mono w/i a month(i wonder if they actually came together?) it took 3 months for tics to remit.

So if you just saw this new improvement i would give it more time and see if you continue on the healing trend.

I too am seeking 100% for all of my children!!!!!!

[kleek3]

Hi there!

 

DS4 is 43lbs. the Azithromycin ia 200mg/1xs daily. The Augmentin is 400mg/2xs daily. We have noticed an improvement with the combo. I think I will reach out to Dr. T to se about a higher dose. This is our first bit of improvement since the onset in April 2012. I read about the yogurt and asked Dr. T how he felt about his LOVING yogurt. He suggested weaning him off. I love the idea of Kefir, we will look int it. Thank you so much for the great ideas. Keep you posted with positive reports we pray!

 

KK

[AmySLP]

 

The ped put him on rifampin for 10 days again, and within 48 hours the flare stopped. Dr. B gave him a 30 extension of the rifampin (he was on all 3 for 30 days) and for the first time since the T&A we were close to 100%. He was at about 95% or so. Within 5 days of coming off the rifampin he was back in a full blown episode. Although he tested negative for strep, the pediatrician put him back on the rifampin for 30 days. We're on day 2 of adding it back and are waiting to see if we get the same results.

 

My son had improved so much on the rifampin combo that on Tuesday at the Dr.'s office he said to our pediatrician "When I was on the RYNO (what he calls the rifampin), Harvey (name for his OCD) was gone, now that I stopped taking it, he's back. I don't like it. Could you give me more RYNO to take so he'll go away again?" He's never been this verbal about his OCD or what's going on with him. It was nice to see him self-advocating at 5 too.

 

 

Kristin,

Just had a conversation with my youngest 's local allergist and she recommended I ask for rifampin for my oldest if she's in a bad exacerbation. This is in addition to other abx. Also, Epsom salt baths are a great idea to try. So glad to hear things are still moving forward. Heading out your way to Corning today.

Edited December 1, 2012 by AmySLP

[kleek3]

I thank you all for the insight. I will use every bit of it!

[JuliaFaith]

However...the tics are still there, maybe 50%. The throat clearing which was our FIRST tic is still strong.

Your comment made me think of my son also getting a tick sound that comes from the top of his stomach during a flair (along with major stomach aches). He was recently put on Biaxin for a few weeks and started feeling better. His tics decreased and his nausea decreased. After returning to the dr., she kept him on Biaxin for now and started him on BEG nasal spray for MaRCONS (this is our MD). He also had pain in his sinuses and ear aches that did not go away except with Biaxin. His ears are improving, as well as, tics and nausea, and we have not even got the BEG spray in the mail yet!

 

Just read that a low MSH can cause MaRCONS (www.betterhealthguy.com physicians roundtable 2012). My son was treated about a year ago for these, but they seem to come back after a while, maybe because MSH is not up yet or immune system is still not working well.

 

Best wishes.

[kleek3]

Wow!!! Here I am searching the forum for Cefdinir and it's actually in my very own post. Hello friends! What a long January it has been for us. We have had Croup/Pneumonia, URI's and the Flu pass thru our house. The best part of this January was stumbling onto a Steroid Burst for 4 days as well as a med change from Augmentin to Cefdinir. We still continue to do the Azith 1xdaily. We have a new child in our home. The last five days I have sat and observed my old Mr. B. I can't tell you how grateful and how the tears well into my eyes when I speak of this. I am overjoyed and scared to death. First of all, we just had labs done 3 weeks ago and will be contacting Dr. T for the follow up with the results. He did say that DS4's labs explained the exacerbation and also said that we may want to really explore the IVIG for him.

 

My brain hears the marathon...not the race. My brain hears change one thing at a time. My brain says try this med combo...see if we continue to have the positive results that we are experiencing in this house TODAY. I have heard about Clendomyicin and we are even willing to try that before the IVIG. What a change it is from my first posts almost a year ago with my DH thinking I was crazy, not supporting , and wort of all accusing me of Dr shopping for the answer I wanted. I Thank God regularly that we are on the same team now. That WE together see the change and know that this is a thing called PANDAS and it IS real. I don't know what I want or need to hear. Maybe it was just a vent. I thank you all for being here...

 

KK