augmentin

[dee45]

Hi,

I also wanted to everyone that Dr. Latimer swithced Anthony from pen-v-k to augumentin. She says that augmentin is probably the most effective drug and has been using it more. she says it gets to the strept that may be hiding out in the gut or in the anal area as well. Anthony is also on Topamax she did not prescribe that but went to a conference and said she will be prescribing it more. those with elevated cam-kinase scores also have elevated glutamine levels they go hand in hand . the reason topamax works so well is that it decreases this in the brain which then causes less tics. hope I am explaining this right. hope everyone has good weekend.

 

Deanna

[faith]

dee,

was this your first visit? how much augmentin did she give? then what? remind me what your son's symptoms are presently and what was cam kinase number?

 

than

[dee45]

Hi Faith,

this our second time seeing her we saw her in August. Anthony has had head tics and eye rolling tics of that nature. cam-kinase score 146. he is 10 and weighs 68.5 pounds and she wrote a script for Augmentin 500mg twice a day.

 

Deanna

[mk8898]

Hi,

I also wanted to everyone that Dr. Latimer swithced Anthony from pen-v-k to augumentin. She says that augmentin is probably the most effective drug and has been using it more. she says it gets to the strept that may be hiding out in the gut or in the anal area as well. Anthony is also on Topamax she did not prescribe that but went to a conference and said she will be prescribing it more. those with elevated cam-kinase scores also have elevated glutamine levels they go hand in hand . the reason topamax works so well is that it decreases this in the brain which then causes less tics. hope I am explaining this right. hope everyone has good weekend.

 

Deanna

[mk8898]

Hi Faith,

this our second time seeing her we saw her in August. Anthony has had head tics and eye rolling tics of that nature. cam-kinase score 146. he is 10 and weighs 68.5 pounds and she wrote a script for Augmentin 500mg twice a day.

 

Deanna

 

We also seen Dr. Latimer in August (1st visit) and last Friday we had a telephone conference. We also were switched from pen vk to augmentin 600 mg twice a day (our son is 10 and weighs 85 pounds).

I read alot, but have never told our story. Long story short, our son is 10 and was diagnosed at the end of May by our ped with PANDAS. Very sudden onset after a strep infection but looking back now there are little things that we thought was just him. He had is t&a removed in June and we say Dr. L in August. We are one of the very lucky and blessed families that was able to move through this quickly. During the time in July we did a 5 day steriod burst that helped and then Dr. L prescribed a 30 day in August. We did the Cunningham test in the beginning of August, which showed numbers right at the PANDAS level. Also did immunology testing, which came back normal except for the strep pneuomoccall titers (of course). He has always been very healthy except for strep that he would normally get in Aug and in the spring.

Currently, he is doing very good considering. We decided to home school for this semester to allow him time to heal (which I have no regrets doing).

[EAMom]

I'm glad Dr. Latimer is starting to get more aggressive with the abs. IMO that really makes a difference.

[peglem]

I'm glad Dr. Latimer is starting to get more aggressive with the abs. IMO that really makes a difference.

In a similar vein....Its really great that she is not static, is humble enough to know she doesn't know it all, and is willing to adjust treatment when she learns more. THAT, I think is the difference between a butthead doctor and a real one!

[Worried_Dad]

I'm glad Dr. Latimer is starting to get more aggressive with the abs. IMO that really makes a difference.

In a similar vein....Its really great that she is not static, is humble enough to know she doesn't know it all, and is willing to adjust treatment when she learns more. THAT, I think is the difference between a butthead doctor and a real one!

 

God, I LOVE that phrase!!! I've got a very clear picture of our own rogue's gallery of "Doctors Derriere"....

[faith]

mk8898,

so do you feel you have "caught" this at the beginning? what were your son's symptoms? and right now the steroid burst and augmentin seems to be working for now? any other plans, or this is the present protocol that might arrest this?

 

Faith

[KeithandElizabeth]

It seems that Augmentin in Saving Sammy doses seems to have curative powers for many children. Does Zith in such high doses have the same curative powers?

 

Elizabeth

[momofgirls]

I just want to add that my daughter has been on 1200mg augmentin for six weeks now and is doing excellent. She only weighs 40 lbs. Her tics were pretty bad and had moderate OCD and she is almost symptom free. If you guys are not seeing results with other abx then push for the high dose augmentin.

 

 

 

 

 

 

 

It seems that Augmentin in Saving Sammy doses seems to have curative powers for many children. Does Zith in such high doses have the same curative powers?

 

Elizabeth

[faith]

momofgirls,

is augmentin abx the only thing you've done so far? you mention an immunologist, is that your doctor guiding you on this? you've mentioned the first few weeks you didn't see any improvement and than you saw more dramatic improvement? do you mean all of a sudden things were gone and stayed gone? how do you know its not just a waning? has your child had waning periods before in the past year where she'd be symptom free?

 

Faith

[mk8898]

mk8898,

so do you feel you have "caught" this at the beginning? what were your son's symptoms? and right now the steroid burst and augmentin seems to be working for now? any other plans, or this is the present protocol that might arrest this?

 

Faith

 

Faith,

After the our son's first PANDAS episode and diagnosis in May, my husband and I started looking back. His first strep infection was in Kindergarten (he is a 4th grader this year) and that was when he started having night terrors. They were off and on through the years but last school year they were much more frequent and May was when he had his melt down and the symptoms.

He was playing in a basketball tournament, called time out, went to the bench and looked at my husband started crying that he couldn't breath. He was having a panic attack. 2 days later he started on a high dose of Amox, after about 2 months on the Amox the panic attacks stopped but still had alot of anexity about eating and choking. And this is a boy that can out eat me!!!! The panic attacks were so severe in the beginning, it was awful. He has been on an antibiotic since May. He has been Amox (during the beginning), Keflex (had another strep infection in Aug, symptoms not nearly as bad and only lasted about 2 weeks but had also just started the 30 day steriod burst), Cleomycin(this was in July when we seen an infectious disease dr that knew nothing about PANDAS, but I was willing to take a stronger antibiotic if someone was offfering it), Pen VK (per Dr. L) and now Augmentin.

He is at about 95%. We were talking about it the other night and he told me that he feels much better now then when he was having a PANDAS episode; but still doesn't feel completely like himself.

Dr. L told us that it could take months for him to be completely healed.

 

I pray that we have caught this early enough and that the antibotics will be enough to heal him. My biggest fear is getting another strep infection. He ususally gets 2 a year.

 

Our plan is to continue watching for improvements. I am going to continue having phone consults with Dr. L every 2 months or so and also have videos of our son to send her. We live in Indiana. Our first visit to Dr. L took 10 hours!!!! Of course I would drive as many miles as needed to help our son.

 

As everyone knows, PANDAS will turn your world upside down. I've learned to take things one day at a time . . . so today we are taking Augmentin.

 

Michelle

[momofgirls]

Faith

My daughter has not been tic free in over a year. She did have good days but I have been cautiously optimistic. I haven't wanted to share this in case her was just wanning. She has been consistantly improving for the past 3 wks and now at 6 wks is almost symptom free. I am hardly seeing anything and I look closely for anythin! We are seeing an immunologist and pursuing IVIG because I fear she may relapse with illness however right now she has a cold and is still doing super. We started steroids (5 day course) at the same time as the antibiotics and at first her symptoms got a little worse but only briefly. I know the improvement is real because it has been saw tooth like and every few days I saw more improvement. She has not looked this good since this all started.

 

 

 

 

 

 

momofgirls,

is augmentin abx the only thing you've done so far? you mention an immunologist, is that your doctor guiding you on this? you've mentioned the first few weeks you didn't see any improvement and than you saw more dramatic improvement? do you mean all of a sudden things were gone and stayed gone? how do you know its not just a waning? has your child had waning periods before in the past year where she'd be symptom free?

 

Faith

[T_Mom]

mk8898,

so do you feel you have "caught" this at the beginning? what were your son's symptoms? and right now the steroid burst and augmentin seems to be working for now? any other plans, or this is the present protocol that might arrest this?

 

Faith

 

Faith,

After the our son's first PANDAS episode and diagnosis in May, my husband and I started looking back. His first strep infection was in Kindergarten (he is a 4th grader this year) and that was when he started having night terrors. They were off and on through the years but last school year they were much more frequent and May was when he had his melt down and the symptoms.

He was playing in a basketball tournament, called time out, went to the bench and looked at my husband started crying that he couldn't breath. He was having a panic attack. 2 days later he started on a high dose of Amox, after about 2 months on the Amox the panic attacks stopped but still had alot of anexity about eating and choking. And this is a boy that can out eat me!!!! The panic attacks were so severe in the beginning, it was awful. He has been on an antibiotic since May. He has been Amox (during the beginning), Keflex (had another strep infection in Aug, symptoms not nearly as bad and only lasted about 2 weeks but had also just started the 30 day steriod burst), Cleomycin(this was in July when we seen an infectious disease dr that knew nothing about PANDAS, but I was willing to take a stronger antibiotic if someone was offfering it), Pen VK (per Dr. L) and now Augmentin.

He is at about 95%. We were talking about it the other night and he told me that he feels much better now then when he was having a PANDAS episode; but still doesn't feel completely like himself.

Dr. L told us that it could take months for him to be completely healed.

 

I pray that we have caught this early enough and that the antibotics will be enough to heal him. My biggest fear is getting another strep infection. He ususally gets 2 a year.

 

Our plan is to continue watching for improvements. I am going to continue having phone consults with Dr. L every 2 months or so and also have videos of our son to send her. We live in Indiana. Our first visit to Dr. L took 10 hours!!!! Of course I would drive as many miles as needed to help our son.

 

As everyone knows, PANDAS will turn your world upside down. I've learned to take things one day at a time . . . so today we are taking Augmentin.

 

Michelle

 

Hi Michelle--When our d was at about 85%-90% after 3 months of full strength Amox. we tried a steroid burst and it brought her back 110% -- incredible boost for her. Her teacher even called from school to tell us there was a real turn in her abilities. You can follow our experience (or anyone's) by reading old posts (click on person's name, then member's profile option, then options box on the left-hand side, then pull down in the box to read the posts.) Best--