Just got back from seeing Dr. B for the first time

[lmkmip67]

And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.

 

So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.

 

This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.

 

Lisa

[michele]

How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it?

 

Michele

 

And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.

 

So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.

 

This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.

 

Lisa

[KaraM]

We give our dd8 Zithro every morning after breakfast. We also give her ibuprofin in the morning and sometimes in the afternoon (we've played around with that and found that when we don't give it to her, she starts to question lots of things). We try to have her eat some yogurt/drink a yogurt smoothie a few hours after the abx every day. That forumla seems to be enough for us right now...

 

Does th soy yogurt have live active cultures in it. That's the important thing. Can your child have Kefir? There are lots of probiotics available at Whole Foods - from chocolate bars to powders. Some people have reported that those with active strep cultures (anything that begins with "S." in them cause exacerbations in their kids. If you search past posts for "probiotics" you will find a lot of discussion around this.

 

Kara

[lmkmip67]

It is a liquid I would assume. I have to pick it up. It is once a day and 200mg.

 

How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it?

 

Michele

 

And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.

 

So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.

 

This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.

 

Lisa

[michele]

How old is the child and how much does he weigh? I am going to take this back to our ped. Does Dr. B phone consult? Maybe he could talk to our ped.

It is a liquid I would assume. I have to pick it up. It is once a day and 200mg.

 

How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it?

 

Michele

 

And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.

 

So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.

 

This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.

 

Lisa

[lmkmip67]

My son is around 47 pounds. He is 7. I do think Dr. B may do phone consults. But I think it costs something, though not sure. I just met him yesterday so don't know. Good luck!

 

How old is the child and how much does he weigh? I am going to take this back to our ped. Does Dr. B phone consult? Maybe he could talk to our ped.

It is a liquid I would assume. I have to pick it up. It is once a day and 200mg.

 

How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it?

 

Michele

 

And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered.

 

So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already.

 

This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such.

 

Lisa

[mom love]

Michelle - Call Dr. B's office to find out about the phone consults.

 

Imkimi - My dd 55 lbs is on 7.5 ml of zithromax (strep dose for a normal 5 day course) every day for 30 days. It is the liquid from the 200mg bottle. It comes out to be a 300mg dose I think. You will have to either keep going back to the pharmacy to have them fill the bottles with water for you, or you can take the bottles home with the powder medicine in them and fill them with distilled water yourself and shake it really well. I chose to take the bottles home so I don't have to keep going back. It brought my dd back to 90 % by day 5 and we continue to waffle between 80 and 90% on it.

[lmkmip67]

Oh, ok. that is very helpful, thank you. I will have them just send it home and mix it myself. How bad was your daughter? That really gives me some hope.

 

Michelle - Call Dr. B's office to find out about the phone consults.

 

Imkimi - My dd 55 lbs is on 7.5 ml of zithromax (strep dose for a normal 5 day course) every day for 30 days. It is the liquid from the 200mg bottle. It comes out to be a 300mg dose I think. You will have to either keep going back to the pharmacy to have them fill the bottles with water for you, or you can take the bottles home with the powder medicine in them and fill them with distilled water yourself and shake it really well. I chose to take the bottles home so I don't have to keep going back. It brought my dd back to 90 % by day 5 and we continue to waffle between 80 and 90% on it.

[michele]

Is anyone on the zith pill form? My son is 70 lbs. I just want a Dr. to work with our local Dr. We have traveled and we never had that consult happen before and then we were left to nowhere but to guess. He is on Pen vk 250 x 2 day. During flair ups he did Amoxicillin Clav 400mg x 2 day. He still has a head shake but his feet movements are better, not gine but less.

 

Oh, ok. that is very helpful, thank you. I will have them just send it home and mix it myself. How bad was your daughter? That really gives me some hope.

 

Michelle - Call Dr. B's office to find out about the phone consults.

 

Imkimi - My dd 55 lbs is on 7.5 ml of zithromax (strep dose for a normal 5 day course) every day for 30 days. It is the liquid from the 200mg bottle. It comes out to be a 300mg dose I think. You will have to either keep going back to the pharmacy to have them fill the bottles with water for you, or you can take the bottles home with the powder medicine in them and fill them with distilled water yourself and shake it really well. I chose to take the bottles home so I don't have to keep going back. It brought my dd back to 90 % by day 5 and we continue to waffle between 80 and 90% on it.

[fuelforall]

Try to find coconut milk yogurt, it's good. There is rice milk yogurt out there, but it's hard to find.

DON'T give a child soy unless it's fermented.

Michael

[philamom]

Is anyone on the zith pill form? My son is 70 lbs. I just want a Dr. to work with our local Dr. We have traveled and we never had that consult happen before and then we were left to nowhere but to guess. He is on Pen vk 250 x 2 day. During flair ups he did Amoxicillin Clav 400mg x 2 day. He still has a head shake but his feet movements are better, not gine but less.

 

Oh, ok. that is very helpful, thank you. I will have them just send it home and mix it myself. How bad was your daughter? That really gives me some hope.

 

Michelle - Call Dr. B's office to find out about the phone consults.

 

Imkimi - My dd 55 lbs is on 7.5 ml of zithromax (strep dose for a normal 5 day course) every day for 30 days. It is the liquid from the 200mg bottle. It comes out to be a 300mg dose I think. You will have to either keep going back to the pharmacy to have them fill the bottles with water for you, or you can take the bottles home with the powder medicine in them and fill them with distilled water yourself and shake it really well. I chose to take the bottles home so I don't have to keep going back. It brought my dd back to 90 % by day 5 and we continue to waffle between 80 and 90% on it.

My daughter is on Zith 250mg daily. It's a white pill (manufacturer-Sandoz) we get from Rite Aid.

[EAMom]

Michele,

lots on this forum use the pill form of Azith. It comes in 250mg and 500mg sizes. Usually the smaller kids are on 250mg/day, the bigger kids (or more severe cases) might be on 500mg/day. (You can also half the pills if needed.)

 

My dd learned to swallow pills when she was 7, so she was started on 250mg/day (43 pounds). She's still on that dose (64 pounds now)...but some kids in the 60 and up range are on 500mg/day, at least initially.

 

Have you thought about repeating the Cunningham test and then making a road trip to see Dr. B. in person?