7th Day of Biaxin-An Update on my Son

[simplygina]

As many of you know, we switched to Biaxin last week. Our test results have been very uninformative but we know that illness causes an exacerbation so we decided to see what happened with a switch of abx.

 

As with Augmentin, but even more so, we saw an initial improvements within a few days. His head cleared up immediately which confirms my hypothesis that he is getting bacterial sinus infections. His mood went from extremely turbulent to wonderful. His moods are stable, he has reasoning ability back, he has patience and flexibility. The things that normally frustrate him still do, but he just handles it soooooo much better! Even with a bit of stomach upset and headache the first two days, his mood was OK. His sleep was erratic and he seemed really hyper though. Still worth the improvements.

 

By day 5 some of his main tics and his evening up rituals were showing again. The frequency is much less and the intensity is much much less. He says that it is still so much less than before and that he almost doesn't even notice it right now. Things get worse, like they always have, when he stressed or tired or has eaten something that makes things worse. But he is so calm about it. I noticed last night he was shaking his head and shrugging a bit and mentioned it seemed worse and he answered, so matter of factly, "well i'm tired mom. of course it's worse. i need to get some sleep." all of a sudden he sounds like a 10 year old instead of a 6 year old again. he is getting up early, getting all of his morning chores done so that he can read and enjoy the morning. he plays with his brother, helps around the house and gets his homework done without complaint. it's pretty amazing how nice it has been. His gut has been fine and the hyperness has gone. He still is waking at night, but he just goes back to sleep, in his own bed.

 

At this point, I think both of us could handle the amount of tics and ocd if his moods would remain this stable. The Biaxin seems to have done what the Zoloft didn't even come close to doing. I'm sure it helps that Spring is finally here and the sunshine and warmer temps are part of the improvement as well. We always see an improvement in the Spring.

 

I'm hoping Dr. T will keep us on the abx for awhile. We also plan to do the cunningham test just to see where that comes in at. I've been reading a ton about inflammation recently and even though we have been moderately strict with his diet, I think it is time for an overhaul for the whole family. No more crap. We all tend to be hypoglycemic so I'm going to try to switch us over to a Zone type diet. I'm also thinking about upping the fish oil he takes. I'm also going to set up an appointment with an allergic doc. He has "allergic shiners" and I'm curious about what he's allergic to. I'd like to know if he has any food allergies as well. It would be so much easier to cut some stuff out of his diet if I had a doctor backing me up.

 

I'm feeling optimistic but apprehensive as well. It seems like every time things start going well, he gets sick and we start all over. But I'm trying to take it day by day and enjoy the good periods.

 

I'm wondering how others who have recently switched abx are doing?

[peglem]

Amazing update! Thanks!

[7upMom]

Just posted update on us switching to augmentin, but that was a switch from only 250mg penicillin. We were told he had allergy shiners too ( the purple shiny below both his eyes) but when the allergist did allergy testing it came up negative on everything. So where does that look of the allergy shiner come into play - idk- I would have him allergy tested so you knew for sure- we treated him for 2plus years for allergies come to find out he never had.

[simplygina]

Just posted update on us switching to augmentin, but that was a switch from only 250mg penicillin. We were told he had allergy shiners too ( the purple shiny below both his eyes) but when the allergist did allergy testing it came up negative on everything. So where does that look of the allergy shiner come into play - idk- I would have him allergy tested so you knew for sure- we treated him for 2plus years for allergies come to find out he never had.

 

Wow!! I thought the shiners were pretty indicative of severe allergies! Maybe other sinus issues? Did you do both environmental and food?

 

What is interesting with my son is that he's always had puffy bags under his eyes (not ALWAYS, but more often than not) and those are gone right now but he woke up a few days ago with the shiners. My other son, who displays seasonal allergies both spring and fall also has them going on. Zyrtec seems to help but I'd like to know what it is they are each allergic to.

[Megs_Mom]

What a wonderful update! I'm so happy for you!!! I love that phase when you can stop panicing and start trying to explore underlying issues on a more relaxed pace. So glad you were such a successful advocate for your son!!!!

[thereishope]

Thank you for the update! Glad to hear things are going well! When a child begins to recover, it takes awhile. You see setbacks, you see plateaus, but hopefully over time things will improve overall. There were times I would reread journal posts and realize my son had overcome issues that I forgot he had.

 

So, how long was your script for Biaxin? Will you be going for another blood test to see if anything changed?

[wornoutmom]

So glad for you - hope this progress continues. Wish I could say Biaxin has been as helpful for us. We're on day 7 today as well. Like you, the first few days were an amazing shift in mood - played with a friend for the first time in months, seemed happy, handled a very stressful day at school just wonderfully. I was so excited. But day 5 he was so anxious in the am he could barely get out the door to school, called home with a splitting headache worse "exorcist episode" in several weeks. Did not go to school the next day and slept until 1 oclock in the afternoon! He was back to being whiny and agitated. I left him this morning in the same state to go to school conferences, and when I got back he had spent time on the treadmill, showered and was playin gon the ocmputer. So go figure!! That brings up the question: what is the definition of "sawtooth"?

[Fixit]

That brings up the question: what is the definition of "sawtooth"?

 

yah...can you have sawtooth w/i periods of the day?

[simplygina]

So glad for you - hope this progress continues. Wish I could say Biaxin has been as helpful for us. We're on day 7 today as well. Like you, the first few days were an amazing shift in mood - played with a friend for the first time in months, seemed happy, handled a very stressful day at school just wonderfully. I was so excited. But day 5 he was so anxious in the am he could barely get out the door to school, called home with a splitting headache worse "exorcist episode" in several weeks. Did not go to school the next day and slept until 1 oclock in the afternoon! He was back to being whiny and agitated. I left him this morning in the same state to go to school conferences, and when I got back he had spent time on the treadmill, showered and was playin gon the ocmputer. So go figure!! That brings up the question: what is the definition of "sawtooth"?

 

I keep wondering if it means some things improve while others are getting worse! He definitely slept better on the Augmentin, but even that is beginning to improve as well.

 

Your experience sounds somewhat like what we experienced on Omnicef. He'd be fine, then so angry, then laughing and silly, then crying because life was hard, then hugging me and loving me. It was crazy. It is the first time I was truly worried about his mental state. He was so up and down it was bizarre. I was extremely apprehensive about the Biaxin. Then I made the mistake of reading a website where people could post their comments and soooo many people HATED Biaxin because it made them feel crazy. I was convinced it was going to send him right over the edge, but thankfully it has brought him back to the best I've seen his moods since school started. He's funny but not super silly like he was for awhile. I've really missed his sense of humor.

 

What other abx have you tried? Are you on a 10 day? I wonder if there is much difference between Azith and Biaxin. I'm assuming you are on Biaxin for mycoplasma? Or do you think it is intracellular strep? I had read so many times that switching around until you find the right one was key, but his pediatrician was so unwilling to try a macrolide because we don't exactly know what it is we are fighting here and he doesn't know much about PANDAS and had never heard of strep going inside the cell. I'm so grateful Dr. T. offered to talk with me. I have to laugh now to think our doc told me a month and a half ago that an abx wouldn't affect his mood, so switching around didn't make sense. He wondered if we should try a new SSRI since the only thing Zoloft did was make my son manic. I see where he is coming from, but boy howdy is he WRONG on that one.

 

I hope it continues to work for us. I would be heartbroken if we backslide now. I'm am trying so hard not to let his progress or lack thereof affect me so much because he knows it does and it gives him the guilts. On the Omnicef, he'd flip out, I'd flip out and then we'd both be sobbing. He told me he thought I'd be happier if he ran away, which of course tore me to shreds. We talked about it again last night and he said he doesn't feel that way at all anymore.

 

I hope things start to improve again for you. It is so hard to watching and wondering what is going on. I feel like I'm constantly rating his behaviors. I look forward to the day we can just BE.

[trggirl]

I am so happy for you.

 

I know it has been said on here many times, but just keep an eye on the fish oil. It caused terrible tics for my daughter.

[momaine]

Thank you for the update. I hope things continue to improve.

 

My dd is on day 20 of Biaxin. Though it wasn't a perfectly easy 20 days, they were the best 20 days in a long time. A few days were very difficult (interspersed here and there) and she is still very frustrated with this disorder, but overall, she has improved. We start a another 5 day course of prednisone tomorrow and I'm hoping for continued improvement with that.

 

Angela

[thereishope]

have you read Chemar's posts about he son and Omega 3's deriving from fish oil in pill form? I believe he can eat fish and he also gets his Omega 3's from flax oil. She said she knows otherkids who have the same problem with it.

 

Does your child have a fish allergy? If that's it, they also make vegan Omega 3's.

 

 

I am so happy for you.

 

I know it has been said on here many times, but just keep an eye on the fish oil. It caused terrible tics for my daughter.

[wornoutmom]

I look forward to the day we can just BE.

 

Wow don't I agree with THAT statement! I wanted to ask - were your son's moods worse (all over the place)on the Omnicef that on NO abx? Yes, we are on the Biaxin for Myco, though we have no positive IgM so its kind of a shot in the dark. The rx is only for 10 days, but we have 2 refills - not sure what we'll do next. We havent tried Zithro or Augmentin - don't know if that would be indicated or not. Psych doc still wants to put him on Lamictal. We have an appt with local neurologist Tues to discuss IVIG, but we just read our insurance policy last night and it doesn't look like we'll get coverage even with the PET scan result. Sigh...I want off this boat!!!

 

 

 

V

So glad for you - hope this progress continues. Wish I could say Biaxin has been as helpful for us. We're on day 7 today as well. Like you, the first few days were an amazing shift in mood - played with a friend for the first time in months, seemed happy, handled a very stressful day at school just wonderfully. I was so excited. But day 5 he was so anxious in the am he could barely get out the door to school, called home with a splitting headache worse "exorcist episode" in several weeks. Did not go to school the next day and slept until 1 oclock in the afternoon! He was back to being whiny and agitated. I left him this morning in the same state to go to school conferences, and when I got back he had spent time on the treadmill, showered and was playin gon the ocmputer. So go figure!! That brings up the question: what is the definition of "sawtooth"?

 

I keep wondering if it means some things improve while others are getting worse! He definitely slept better on the Augmentin, but even that is beginning to improve as well.

 

Your experience sounds somewhat like what we experienced on Omnicef. He'd be fine, then so angry, then laughing and silly, then crying because life was hard, then hugging me and loving me. It was crazy. It is the first time I was truly worried about his mental state. He was so up and down it was bizarre. I was extremely apprehensive about the Biaxin. Then I made the mistake of reading a website where people could post their comments and soooo many people HATED Biaxin because it made them feel crazy. I was convinced it was going to send him right over the edge, but thankfully it has brought him back to the best I've seen his moods since school started. He's funny but not super silly like he was for awhile. I've really missed his sense of humor.

 

What other abx have you tried? Are you on a 10 day? I wonder if there is much difference between Azith and Biaxin. I'm assuming you are on Biaxin for mycoplasma? Or do you think it is intracellular strep? I had read so many times that switching around until you find the right one was key, but his pediatrician was so unwilling to try a macrolide because we don't exactly know what it is we are fighting here and he doesn't know much about PANDAS and had never heard of strep going inside the cell. I'm so grateful Dr. T. offered to talk with me. I have to laugh now to think our doc told me a month and a half ago that an abx wouldn't affect his mood, so switching around didn't make sense. He wondered if we should try a new SSRI since the only thing Zoloft did was make my son manic. I see where he is coming from, but boy howdy is he WRONG on that one.

 

I hope it continues to work for us. I would be heartbroken if we backslide now. I'm am trying so hard not to let his progress or lack thereof affect me so much because he knows it does and it gives him the guilts. On the Omnicef, he'd flip out, I'd flip out and then we'd both be sobbing. He told me he thought I'd be happier if he ran away, which of course tore me to shreds. We talked about it again last night and he said he doesn't feel that way at all anymore.

 

I hope things start to improve again for you. It is so hard to watching and wondering what is going on. I feel like I'm constantly rating his behaviors. I look forward to the day we can just BE.

[EAMom]

The only thing about flax oil is that it doesn't have DHA.

 

However, there are some omega 3 products with DHA that are from algae, not fish. Just google "vegetarian DHA."

[simplygina]

Emotions all over the place would be an understatement. I don't think I'll ever do Omnicef again for him. He just couldn't handle anything and was going from rages to crying to hyper and silly and back again within hours. The 10 days on Omnicef will go down as one of our all time worst times thus far.