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Doctor won't renew augmentin-so terrified


Rlz
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My son has been on augmentin for 4 weeks per Dr. K in Chicago. He is doing better a little better, reading again, less urinery frequency. We are scheduled to go back to Chicago for IVIG(first time) in a month. Dr. K won't let my son stay on augmentin until the IVIG. He says we need to stop it for 3 weeks and then go back on it a week before IVIG. I am so scared because I told Dr. K that any little change, even the time of medicine sets us back. I know if we stop augmentin we will go back to full blown pandas!! My son doesn't want to live then! I am so confused. Dr. K says he won't allow us to stay on augmentin due to long term side effects of it. My son has only been on it for 4 weeks and I was only asking for 3 more until we come for IVIG! Now i am trying to brace myself for full blown pandas. I will need to cancel IVIG in Chicago cause i won't be able to get my son on the plane. We were seeing a little light at the end of the tunnel. I don't understand! Some doctors say you need a few months to see progress. I am now told to stop augmentin. When i even gave my son the medicine a half hour later one day we escalated for 3 weeks. Tonight is the last dose i have and i know in a few days we will be back to ! I begged dr. K for just a few more weeks. Stopping the augmentin will set us back and then starting it again in 3 weeks doesn't make sense to me!! I am so scared and terrified!!! Full blown pandas for us included basically every symptom!! Any advice!!!

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What other calming strategies are you using or aware of?

Other parents on this board or other boards please chime in.

 

My immediate suggestion would be to ask Dr, K to prescribe calming sedation for the plane or your travel will be in jeopardy.The airline may ask you to get off the plane if he is not under control. Perhaps contact your airline for strategies such as a pre visit. As bad pre visit to the airline certainly justifies calming medication. If the doctor can not prescribe can a colleague of his prescribe?. A raging teen on a plane is very serious as is driving for that matter. You need help.

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The minute your son starts worsening, call Dr. K and describe the changes. Keep detailed notes so you can convey exactly what's happening. It's one thing to tell him what you think will happen, but a completely different matter when it's actually happening and your son is back in crisis. I don't see how he could refuse to help at that point.

 

Otherwise, I would look into an integrative/functional medicine doctor. We made the switch after two IVIGs did not bring our son back, and are so glad we did!

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Mama2alex has a great idea; I know you want to be proactive (rightly so), rather than reactive, but be prepared if you have no other options and are left to report upon your DS's returning PANDAS behaviors to Dr. K. I would also ask him, specifically, what negative side effects is he referring to with respect to renewing the abx?

 

I would, however, seek out another doctor who might extend your abx for you during the 3-week lag until IVIG. An integrative doctor, as Mama2alex suggested, might be your best bet.

 

I am aware that this is generally Dr. K.'s protocol; he is not a believer in extended abx use. In a couple of speaker panels that I've attended over the years, he, Dr. Swedo, Dr. Latimer and Dr. Murphy have all noted that prolonged abx use is not ideal primarily due to the increased risk of developing c-difficile.

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While I respect the risks, there are risks of NOT using abx too. You can get stephen buhner's book "Natural Antibiotics". He likes three herbs - cryptolepis, sida acuta and alchornea. I don't feel comfortable recommending the first two because they have the same method of action as ciprofloxacin and my dd had serious side effects from ciprofloxacin. But she's had good response to alchornea. You can get it from www.woodlandessence.com. it tastes horrible but I put a dropper full into any empty gelcap (from Amazon) and she takes it quickly before the liquid dissolves the capsule, so there's no taste. If Dr k won't budge and you can't find an integrative Dr to help, consider herbs. Having a nervous breakdown in the cvs minute clinic has also worked once or twice for me.

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Turmeric will help with inflammation.

Benedrill will help calm him down. It will also help with some of the reactions that can come with ivig. Dr. k gives benedrill right before ivig..

The fact that he stated 3 weeks of no abx before ivig causes a pause in me. I have a feeling that there is a good reason behind this

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I want to second what Dasu suggested. You can get anything online, including augmentin.

What are the long term sideeffects of augmentin? Our immunologist suggested that they are minimal bc the dose our ds takes is prophylactic, i.e. small.

if K doesn't want to prescribe it, would he change to another abx? it's a good idea to try others

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While I respect the risks, there are risks of NOT using abx too. You can get stephen buhner's book "Natural Antibiotics". He likes three herbs - cryptolepis, sida acuta and alchornea. I don't feel comfortable recommending the first two because they have the same method of action as ciprofloxacin and my dd had serious side effects from ciprofloxacin. But she's had good response to alchornea. You can get it from www.woodlandessence.com. it tastes horrible but I put a dropper full into any empty gelcap (from Amazon) and she takes it quickly before the liquid dissolves the capsule, so there's no taste. If Dr k won't budge and you can't find an integrative Dr to help, consider herbs. Having a nervous breakdown in the cvs minute clinic has also worked once or twice for me.

 

I'm getting a mental picture of your "nervous breakdown" in the CVS Minute Clinic, LLM! :lol: Once the laughter subsided, though, I realized that is a BRILLIANT idea! Those nurse practitioners are generally stacked up with folks waiting, and, in our experience, they'd prefer to err on the side of "give 'em a prescription and they'll get out of my hair" than argue with you about it and eat up more time. That one's going in my back pocket, should I ever need it! Thanks!

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I would try and get the pediatrician to fill a script for Augmentin. My son took Augmentin, prophylactic dose for about 1.5 yrs. He took Augmentin, treatment dose, for 2.5 years. Dr. K will prescribe a prophylactic dose after the IVIG. I would move mountains to get a script for the three weeks.

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