How long after starting Saving Sam dose should we see improvement.

[galien407]

MY 11y.o. son had IVIG in January over 2 days with Dr. K. Did one IVIG this month. Started increased augmentin two weeks ago. 875 mg. twice per day; he weighs 75 lbs.

His OCD is unchanged. Could that be because the strep is being killed with the augmentin, but the antibodies are still going to live for a while and wreak havoc with the basal ganglia?

 

Any thoughts on when we might see some awesome behaviors? His ASO was 200, and DNASE was 920 (had been 1920.)

Mary

[momtocole1]

Dear Mary,

 

Can you help me with the math on this, it is so late at night , with your son's dose. My son is also 11 years old. Heavier than your son though, he is 118 pounds.

He stared out at 600 mg. twice daily, a total of 1200 mg. per day. He had some improvement, he was not shedding OCD behaviors but it seemed the intensity of them was going down. Less rages. He had a big backslide at about day 12 so we upped the dose to 1000 mg. twice per day, a total of 2000 mg. per day.

 

So I think you are at 1750 right?

 

I noticed improvement right away after we started the higher dose. It was like a switch was flipped. Don't want to mislead... We have a road ahead. What changed is that he started to shed OCD behaviors. He went from almost total decompensation to going back to school. We are on modified days though and he seems to be in that "saw tooth" type of mode. Good days and bad, good moments and bad. But he is definitely is doing better. He went outside for the first time in many months to play and ride his bike. He has been outside playing in the backyard again.

 

But then as fast as the great things come, a storm will hit too. He had to have three teeth pulled today. Baby teeth that never would come out and new teeth were already in. It was such a tough day for him.

 

He is till really upset to go to school.

 

So I am wondering if there is a chance that 2000 mg. a day is a "high enough" dose? The reason I ask is that another Mom on this forum, Faith has been doing a dose lower than the 2000 mg. a day and she is not seeing as much improvement as she had hoped.

 

The saving sammy dose was 2000 mg. a day, sammy was 10 years old on that dose and he was overweight from what I hear from all the psychotropic medications he was on. I am not a doctor and I don't know if would help but it is just a thought.

 

There is a dad on this forum named worried dad that has seen amazing improvements with the 2000 mg. His son is a little older though. Maybe you have seen his posts.

 

Do you think it is worth a try to try the higher dose?

 

I am not knowledgeable enough about this to even have a "parent opinion". What if you talked to the doctor to make sure that it is safe to go that high with the size of your son?

 

It just keeps gnawing at me the possibility that there is something about the 2000 mg. a day being enough to kill off this strep strain regardless of the weight of the child. Because when you think of it your son and my son are already on a much higher dose than even an adult would get, it really does not correlate with their weights, it is a huge dose. Worried Dad took the Saving Sammy book to his doc. and that is how they got him to agree to go higher, to the 2000 mg. a day.

 

I'm sorry if I'm rambling, it is so late, but I really wanted to write you back before going to bed. My heart goes out to you. Please keep me posted.

 

Also, is there any chance you live in California? There has been discussion about a really strong strep strain in CA.

 

Good night, Judy...

 

MY 11y.o. son had IVIG in January over 2 days with Dr. K. Did one IVIG this month. Started increased augmentin two weeks ago. 875 mg. twice per day; he weighs 75 lbs.

His OCD is unchanged. Could that be because the strep is being killed with the augmentin, but the antibodies are still going to live for a while and wreak havoc with the basal ganglia?

 

Any thoughts on when we might see some awesome behaviors? His ASO was 200, and DNASE was 920 (had been 1920.)

Mary

[EAMom]

If the higher dose of Augmenting doesn't end up helping, lots of us in Northern CA (and elsewhere) are on Azith. My dd (54 pounds) has been 250mg/day since June 08. You might consider a higher dose (at least initially), say 375mg (1.5 250mg tabs) in a 75 pounder. Azith. is anti-inflammatory/immune modulating and may do a better job of getting intracellular strep than Augmentin.

[sf_mom]

This is taken from my e-mail correspondence with Madeleine Cunningham yesterday. When she is referencing OTHER THINGS she is talking about IVIG AND PEX.

 

'I hope this helps some of the confusion. Group A strep are sensitive to penicillins while the

pneumococcus is less so and should be treated with other drugs such as azithromycin and other

things that will take care of it.'

 

The pneumococcus strain carry the M1 and M18 strains of bacteria that were present in both Utah outbreaks of RF in 1986-1987 and 1998-1999 Which is a really difficult bacteria to eradicate from host.

 

http://www.genomenewsnetwork.org/articles/...c_bacterium.php

 

We had our son who is 43 pounds on 500 m.g. Azithromycin for 4 weeks post IVIG and have recently lowered him on the 23rd 375 m.g. and is remaining almost symptomless... I like to say 98% better because occasionally I notice a brief TIC. This last week he came home twice with his name written in a mirrored fashion (backwards and reads perfectly in the mirror) both his brother and sister had been sick last week and two days ago he had a bad bout of diarrhea similar to his brother and sister.

 

I agree with EAMom if Augmentin does help within the next month try Azithromycin.