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Fingers crossed..... think we are finally seeing progress!


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My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy.

 

Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise :) and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!!

He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep.

This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!!

We have our phone consult with Dr K this week- very excited!!!!

Brandy

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Keeping my fingers crossed for you! What Zith dose did you start out with? We are about to start zith to treat PANDAS. Dr. prescribed 1-1/4 tsp 100mg 1x/day for 20 days, then weekly dose for 3 months. My son is 7, weighing just under 48 pounds. Anyone have any dosing advice? DS was also constantly on abx from birth through several years for ears and upper respiratory infections - never seemed to clear up well.

 

My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy.

 

Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise :) and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!!

He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep.

This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!!

We have our phone consult with Dr K this week- very excited!!!!

Brandy

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My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy.

 

Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise :) and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!!

He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep.

This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!!

We have our phone consult with Dr K this week- very excited!!!!

Brandy

 

That is great news......its the little things...as parents we keep these under a microscope...so i am sure something is happening...

HOw long ago did you do ivig....??

and what was the abx dose till you upped it last week?

 

thanks for sharing!!!

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Fixit & Data girl-We were on 250mg for about 3 1/2 weeks (were given a month prescription) previously we had been on several different 10 doses of Omnicef but there was always space in between and the behaviors came back. After we got our titers, Cunningham and Mycoplasma lab results (high) is when he he prescribed a month of 250 mg zith however I was not seeing the progress I thought we should be, I called the Dr asked for an increase or a steroid burst and the Doctor agreed to up it to 500mg instead of a steroid burst (he does not like them). He is 8 and weighs about 70 lbs.

We have not done IVIG yet....

Brandy

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My son is doing really really well on 15 mg/kg of zithromax. It took about 18 days to kick in.

 

Keeping my fingers crossed for you! What Zith dose did you start out with? We are about to start zith to treat PANDAS. Dr. prescribed 1-1/4 tsp 100mg 1x/day for 20 days, then weekly dose for 3 months. My son is 7, weighing just under 48 pounds. Anyone have any dosing advice? DS was also constantly on abx from birth through several years for ears and upper respiratory infections - never seemed to clear up well.

 

My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy.

 

Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise :( and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!!

He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep.

This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!!

We have our phone consult with Dr K this week- very excited!!!!

Brandy

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My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy.

 

Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise :( and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!!

He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep.

This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!!

We have our phone consult with Dr K this week- very excited!!!!

Brandy

 

Great news Brandy!!!! I hope he continues to improve. Sending positive thoughts your way. Our boys sound so much alike. I have never been able to use the word subdued with my son either! Can't wait to hear about your consult with Dr. K. We are thinking that might be next now that we know IVIG is in the very near future!

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