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Posted

I dont know what it is hopefully its the clindimicin kicking in.Were still awaiting blood work with Dr.T Ill take it for a while god knows we need it.Wehave been using some advil 400 mg in the am Not sure if thats it .Danny was pretty sick last week sore throat and fever.No strep but glands were swollen maybe mono?maybe not? Seems all better now .

 

Have a nice Thanksgiving

 

Melanie and danny

Posted
I dont know what it is hopefully its the clindimicin kicking in.Were still awaiting blood work with Dr.T Ill take it for a while god knows we need it.Wehave been using some advil 400 mg in the am Not sure if thats it .Danny was pretty sick last week sore throat and fever.No strep but glands were swollen maybe mono?maybe not? Seems all better now .

 

Have a nice Thanksgiving

 

Melanie and danny

Beautiful news!!

Posted

Ahhhh, 3 beautiful days! After our increased zith success, I want to believe it's the abx. Fingers crossed that it just keeps getting better.

 

With the blood draw with Dr. T, does he do it himself at the office? I'm worried he'll have blood to draw on my dd when we go and she is terrified of it since her blood seems to stop flowing mid draw.

 

Susan

Posted
Ahhhh, 3 beautiful days! After our increased zith success, I want to believe it's the abx. Fingers crossed that it just keeps getting better.

 

With the blood draw with Dr. T, does he do it himself at the office? I'm worried he'll have blood to draw on my dd when we go and she is terrified of it since her blood seems to stop flowing mid draw.

 

Susan

 

 

It wasnt that much blood for the test we did and no I go to lab corp.I dont know if Dr T does do blood.I cant get blood done there I have to go to LAb orp because my new insurance su--s!Oh Im a little mad about my insurance.How much zith r u on?Im going to ask Dr T to increase the clindimicin to see if that even can help more.Not sure if the behavioral change is even related Is there a way to find out?

 

Happy Turkey Day

 

Mines in the oven

Melanie

Posted
Ahhhh, 3 beautiful days! After our increased zith success, I want to believe it's the abx. Fingers crossed that it just keeps getting better.

 

With the blood draw with Dr. T, does he do it himself at the office? I'm worried he'll have blood to draw on my dd when we go and she is terrified of it since her blood seems to stop flowing mid draw.

 

Susan

 

 

It wasnt that much blood for the test we did and no I go to lab corp.I dont know if Dr T does do blood.I cant get blood done there I have to go to LAb orp because my new insurance su--s!Oh Im a little mad about my insurance.How much zith r u on?Im going to ask Dr T to increase the clindimicin to see if that even can help more.Not sure if the behavioral change is even related Is there a way to find out?

 

Happy Turkey Day

 

Mines in the oven

Melanie

 

Thanks for the info! We are on 500 mg of zith right now. We found out by trying it out of desperation. Next day, it was like a different girl. Dr. T spoke to me about possibly switching to clindimicin but that was before we got this success out of the zith so I'm not sure what will happen on our visit. I hope he will agree with a trial. Sorry about your insurance company. I can relate!

 

Susan

Posted
Awesome! 3 days of improvement is a great sign!

 

Today was pretty good too.I gave him the antibiotic this morning and 400n mg advil around 9am i didnt see any motor tics untill later this afternoon.Did start ticcing around 3-4 pm interesting he wasnt cursing nor angry at all.Im loiking this .How long does advil last?

Melanie

Posted
Awesome! 3 days of improvement is a great sign!

 

Today was pretty good too.I gave him the antibiotic this morning and 400n mg advil around 9am i didnt see any motor tics untill later this afternoon.Did start ticcing around 3-4 pm interesting he wasnt cursing nor angry at all.Im loiking this .How long does advil last?

Melanie

 

It's supposed to last 6-8 hours...so you could give it up to 3-4 x daily. Long term, it might be safer to give it less frequently (maybe 1-2x daily). How much does Danny weigh? Make sure Danny takes it with food.

Posted

With my son, I would start to notice behaviors kicking back up at the 5 hour mark. I was giving it every 6 hours . That one hour wait until I could give it again was so long. I gave it to him every 6 hours when it is bad . Then when he just seems on edge (but not sure if it's PANDAS or not yet) I'll give it once in the morning-timing it around school. I think it's more for my comfort knowing he has it in his system for school.I do not regularly give it to him on a daily basis.I just wanted to say that so you know I wasn't giving every 6 hours for real long term.

 

Yesterday, I was trying to look up info on Ibuprofen and I guess it also is used to help delay the start of Alzheimer's and dementia. But, like with PANDAS, naproxen does not seem to work as well. Then I was finding some other studies on IB and the BBB. So the connection has been made before. It will be interesting as the decades go on to see how all this different disoder will benefit frome each others research.

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