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a little of my story SFmom and i need help PLEASE!


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Yes, definitely run the Cunningham tests!

 

Also, Beth Maloney has her own list of docs...so you might consider contacting her to see if there is someone nearby http://www.savingsammy.net/contact.html.

 

Advil/Motrin/Ibuprofen you can give a 75 pounder 300mg 3-4 times daily short term. Give it with food. This is the dose you would give if your child had a fever/flu. Colleenrn might have more info. on dosing specifics.

 

Our 54 pound dd is on 200mg every day long term (months/years).

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checked there are 2 chapel hills...i doubt it would be the close one4 hrs away madision county/orange

 

closest city is Atlanta

next i guess woud be Birmingham AL

 

 

Fixit, go to Dr. Susan Tanner at Spherios in Roswell Ga. She is knowledgeable about tics and PANDAS and will help you. Insist on seeing her.

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My son continues to recover w/o antibiotics. Right now, our pattern, if he has strep, is he gets 10 days of amoxicillan. Usually by the time the script is done, I see some improvement. Maybe not great strides, but I can tell something is going on. After the script, he will continue to slowly improve over the course of months and eventually get back to himself. During that time he doesn't usually have dramatic setbacks. If he does, there is an underlying reason. It may be a cold, allergies, high stress, or another strep infection. When he had back to back strep infections and we didn't get improvement during the course of antibiotics, we needed a steroid to help jumpstart recovery.

 

Some the kids continue to see an elimination of symptoms after antibiotics,
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For Vicke (and others)

regarding the steroid, for those that have did it, ... apparently it helps with symptoms, but I'm under impression it is temporary? so does it help, and that's it? OR, I'm wondering if it really helps and then because of the sudden improvement, then inevitably the symptoms return, and I fear...worse for it? just wondering if that's how it goes? is this a temp fix, but then this could trigger more problems if you don't continue with any other treatment? .... Vickie, when you did the steroid treatment for your child, did it get better and stay that way, or go back to his baseline, or did symptoms eventually worsen a little (or alot). just wondering what this steroid burst is about.

 

(Hey bmom.....you and me, at a really DEEP movie this weekend??..... :lol: ...................

 

 

:blink:

Faith

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It seems like kids have different experiences w/ a steroid. Some have only temp relief. Some go back to 100% themself and stay that way. Also, the timeline in which the steroid begins to helps varies child to child.

 

For my son, he got it rather shortly after contracting strep. He started prednisone 5 days after starting antibiotics. Since it was his second PANDAS episode, we recognized the behavior changes quickly and took him for a strep test. For him, I noticed it helped him plateau and stop spiraling down. Then he began to recover. He only had the steroid for 5 days. It did not bring him back to 100% himself, but it helped hault him from getting worse. He did not backslide after going off the steroid.

 

Overall recovery for that PANDAS episode was 2 1/2 months. He did eventually go back to 100% himself. I then compare that to his 3rd PANDAS episode where he did not get a streoid at all. With that one, it took him 5 months to recover and his behvaiors weren't as bad as the one in which he received a steroid. That shows me, for my son, a streroid given early on is beneficial. I am hoping if he ever gets strep again, they will automatically give him a steroid. If they won't, I will religious about giving Ibruprofen for a few weeks.

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