Saw results w/Keflex

[LindaMW]

So we finally found a doctor that heard of PANDAS and was willing to try antibiotic. Great right?

 

Around 12th day on Keflex started seeing a big change in our son. Went back to school after being off 2 months and did not seem as anxious or have any rages for 2 weeks. Even the therapist at the OCD clinic we take him too saw an improvement. They even commented that it must be the antibiotics. OCD still there, but the others changes were great improvement.

So we go back to this pedi after three weeks and tell him the changes and he said it was the placebo effect. Like my 9 year old is playing games with us after 5 months of this and waits until the 12th day in and decides to change. My husband and I could not beleive this. We finally found a doctor willing to see this and that was how it was left.

 

Now what do we do? He still seems okay but not as relaxed as he was on the antibiotics. I guess as long as he is not raging and goes to school and seems okay we let it go. The problem is if he gets sick again and this all flares up again, what do we do? I do not want to go back to this pedi, I don't feel confident in him now.

 

I feel like we are all living in the Twilight Zone.

 

Does anybody know of doctor willing to admit there is PANDAS in the Pittsburgh area? This city is supposed to be one of the best for it's medical facilities, but I am not experiencing that now.

 

Thanks,

Linda

[JAG10]

Linda- try PMing PMom; she lives out that way. I'm outside Phila. -way too far.

 

Sounds like your ped got cold feet, sorry!

 

Do you know how to PM and search PMom under members?

[thereishope]

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Edited September 30, 2019 by Vickie

[LindaMW]

Vicki,

No anti-inflammatories. Right now he is getting nothing.

 

I went to GNC and found an herbal spray that is supposed to help with anxiety and was trying that.

 

Right, at least we saw something w/Abx and hopefully in the future we can try again or explain that to a different doctor.

 

 

Jag10,

I tried searching PMom but did not find anything matches.

 

Thanks,

Linda

[JAG10]

Here is a topic she posted

 

http://www.latitudes.org/forums/index.php?showtopic=16415

 

Click on P. Mom and her profile will come up. Then click on Send a message on the left side.

 

Sorry, there is a minimum character restriction on searches. This should work though.

[LindaMW]

Jag10,

 

Thanks. I didn't use the period between the P and Mom.

 

 

Linda

[Missmom]

So we finally found a doctor that heard of PANDAS and was willing to try antibiotic. Great right?

 

Around 12th day on Keflex started seeing a big change in our son. Went back to school after being off 2 months and did not seem as anxious or have any rages for 2 weeks. Even the therapist at the OCD clinic we take him too saw an improvement. They even commented that it must be the antibiotics. OCD still there, but the others changes were great improvement.

So we go back to this pedi after three weeks and tell him the changes and he said it was the placebo effect. Like my 9 year old is playing games with us after 5 months of this and waits until the 12th day in and decides to change. My husband and I could not beleive this. We finally found a doctor willing to see this and that was how it was left.

 

Now what do we do? He still seems okay but not as relaxed as he was on the antibiotics. I guess as long as he is not raging and goes to school and seems okay we let it go. The problem is if he gets sick again and this all flares up again, what do we do? I do not want to go back to this pedi, I don't feel confident in him now.

 

I feel like we are all living in the Twilight Zone.

 

Does anybody know of doctor willing to admit there is PANDAS in the Pittsburgh area? This city is supposed to be one of the best for it's medical facilities, but I am not experiencing that now.

 

Thanks,

Linda

 

Just curious what dose of keflex was your ds taking. My ds was given a prophylactic dose of 500mg daily for 6 months. He weighs about 95 lbs. just wondering if the treatment dose is double that.

[LindaMW]

MissMom,

 

He was getting 5ml, 3 times a day for 20 days. He is 9 and weighs about 70-75 lbs. My husband and I think, from reading other peoples cases, that it may not have been for long enough or a high enough dosage. The frustration is now we have no help because the doctor basically dismissed the whole thing.

 

Linda

[thereishope]

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Edited September 30, 2019 by Vickie

[colleenrn]

Did the bottle of keflex say 250mg/5ml or 125mg/5ml? The treatment dose is 25-50mg/kg/day (in divided doses).

 

Colleen