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ds16 is on day 6 of augmentin 2000mg XR and azith 750mg. He's tolerating the abx along with other supps and probiotics well. The first two days I saw some improvement and lessening in severity of symptoms but I've seen no more improvement since then. In my desperate quest to maintain some hope, are my expectations for a big turn around in just a few days unrealistic. This is our 3rd major exacerbation in 7 years but the first one that's being treated correctly. Subsequent episodes took about a year to resolve on their own. His separation anxiety is at an all time high and now he doesn't even shut the door when in the bathroom (180 degrees his normal). I have't left the house in days, haven't worked in 1.5 wks. Like all of us, I spend every spare moment praying for a miracle for him (and I) but in doing so am I simply overlooking the fact that he's been sick for many weeks and unwinding takes time?

 

Sorry for the needy plea but I really need some legitimate, realistic expectations to pin my most intelligent hopes to while I continue to pray for a miracle for us all.

 

Many thanks,

Gat's mom

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Hi Gat's Mom- I am sorry you are going through this, again. Just wanted to offer you some hope. It took my dd 30 days on zithromax before we really saw improvement. It then took another month of sawtoothed progress. At that point, she was at about 90%. Unfortunately, it does take time. I really think you need to be prepared to give it 30-60 days before making any judgements. It is SO hard to be patient, I know. If you don't see a big improvement, will you consider a steroid burst?

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My son will still worsen for the first 3-5 days on abs.Then it seems like he will plateau or start to improve. This is an ongoing process that has lasted anywhere from 6 weeks to 5 months depending on which exacerbation I refer to. Along the way, he had improvement, setbacks, and more plateaus. For some reason it seemed like if he was experiencing abump in the road, it would last for a couple days then he would be better than what he was prior to the bump. That happened more than once so I saw it as a pattern for him. I followed a lot on instinct. If I saw all behaviors that had been ridden resurface, I just knew strep was back. If I saw some setbacks, I'd give him a few days and see if it was soemthing to be really concerned about.

 

Stress during the recovery period would definitely make things worse. I kept family get togethes to a minimum and I would be very aware of how he was acting in public. if I saw him getting more fussy or irritable, we'd stop errands and go home. With school, he actually did well most days. When I say well, I mean for the most part he got to school. Took a long time getting ready but went. He didn't necessarily interact or was himself, but he didn't have meltdowns. After school, I knew to just leave him be for about an hour and let him deprogram himself otherwise he'd go into overload.

 

I do think it is very beneficial to jot down how days go. This helped me see patterns in his recovery and kept me from many of my own panic attacks. I know Buster has shared his rating system as well. If you see a rise then make sure to note what was going on at that time, including taking a hard look if he may have a virus, allergies, etc at that time.Hopefully, you will earn you own child's patterns too.

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Hi Gat's Mom- I am sorry you are going through this, again. Just wanted to offer you some hope. It took my dd 30 days on zithromax before we really saw improvement. It then took another month of sawtoothed progress. At that point, she was at about 90%. Unfortunately, it does take time. I really think you need to be prepared to give it 30-60 days before making any judgements. It is SO hard to be patient, I know. If you don't see a big improvement, will you consider a steroid burst?

 

I would absolutely consider a steroid burst because he responds well to Advil all provided his lyme tests come back negative. We just had a bundle of labs done a few days ago. I would sever a limb to get to 90% improvement right now. Thanks so much for the support, I can't tell you how much easier it makes the "wait and see" period. Everytime I read that a child improves on abx I feel relief in my own gut. This kid has recovered himself through the last two exacerbations, I just can't help but think that with some pharmacological intervention, he could be a recovery success story.

 

Thanks again, dcmom, so much!

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My son will still worsen for the first 3-5 days on abs.Then it seems like he will plateau or start to improve. This is an ongoing process that has lasted anywhere from 6 weeks to 5 months depending on which exacerbation I refer to. Along the way, he had improvement, setbacks, and more plateaus. For some reason it seemed like if he was experiencing abump in the road, it would last for a couple days then he would be better than what he was prior to the bump. That happened more than once so I saw it as a pattern for him. I followed a lot on instinct. If I saw all behaviors that had been ridden resurface, I just knew strep was back. If I saw some setbacks, I'd give him a few days and see if it was soemthing to be really concerned about.

 

Stress during the recovery period would definitely make things worse. I kept family get togethes to a minimum and I would be very aware of how he was acting in public. if I saw him getting more fussy or irritable, we'd stop errands and go home. With school, he actually did well most days. When I say well, I mean for the most part he got to school. Took a long time getting ready but went. He didn't necessarily interact or was himself, but he didn't have meltdowns. After school, I knew to just leave him be for about an hour and let him deprogram himself otherwise he'd go into overload.

 

I do think it is very beneficial to jot down how days go. This helped me see patterns in his recovery and kept me from many of my own panic attacks. I know Buster has shared his rating system as well. If you see a rise then make sure to note what was going on at that time, including taking a hard look if he may have a virus, allergies, etc at that time.Hopefully, you will earn you own child's patterns too.

 

Thanks Vickie,

 

I have adopted Buster's rating system though I still have a running journal by day that denote meds/meals/times/meltdowns. Kind of a day at a glance. He's out of school presently, there is no possible way that could happen. He pushed himself to go for weeks and everyday would end in failure (and he was keeping count of those failures which wasn't helping). Now we're home, he sleeps 12 hours at a time (very out of character) and progresses through days that are very stress contained. Once or twice a day, with little or no warning, there will be an episode of anxiety that normally spins to panic but sometimes he can contain to nervousness. The simplest things, like errands have to be done in the span of about an hour (if that). My musclebound 16 yr old boy is as fragile, in every sense of the word, as can be.

 

Thank you for your great insights, Vickie!

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I should probably add that my son was 5 years old and in part time preschool, so the school situation was very different than that of a high schooler.

 

And I actually would not be alarmed by the sleeping. Personally, I would see that as something good. His body needs the rest. It is also the time when healing may happen. Now if he becomes unable to function because he needs more than 12 hours, that is a different story and may need to be addressed. But right now, don't worry about the increase in sleep.

 

Those out of no where panic attacks could just be overload from the stress or sensory issues. What you think have no reason, may have plenty.

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I should probably add that my son was 5 years old and in part time preschool, so the school situation was very different than that of a high schooler.

 

And I actually would not be alarmed by the sleeping. Personally, I would see that as something good. His body needs the rest. It is also the time when healing may happen. Now if he becomes unable to function because he needs more than 12 hours, that is a different story and may need to be addressed. But right now, don't worry about the increase in sleep.

 

Those out of no where panic attacks could just be overload from the stress or sensory issues. What you think have no reason, may have plenty.

 

Very true. We've actually come to learn that the panic attack is a direct response to a thought that enters his mind that scares him. Those thoughts sometimes come through an obvious trigger (a friend telling him that she's been sick and throwing up) and sometimes a not-so-obvious trigger. He is so easily overloaded right now and his ability to filter incoming information is out of commission.

 

The hellish middle school exacerbation also carried 12 hour sleep cycles. As soon as he was well, he went right back to normal sleep patterns. Like you, I believe he is healing at his best at that point, unencumbered by intrusive thoughts. We all heal more effectively when relaxed.

 

Thanks, Vickie!

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My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress.

 

I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved.

 

Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on.

 

Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out.

 

Hang in there. It will come.

 

Angela

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My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress.

 

I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved.

 

Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on.

 

Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out.

 

Hang in there. It will come.

 

Angela

 

"Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.

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(((Gat'sMom))),

 

I'm soooo sorry to hear your frustration. Does your son suffer primarely from tics/ocd or both? I know with tics, they are the hardest to eliminate. Sometimes resulting in pulling out the "big guns"-IVIG! Have you considered IVIG? Do you see a PANDAS doc? I hope you find your answers/resolve, soon!

 

Thinking of you and wishing you success.

 

Lynn

 

My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress.

 

I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved.

 

Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on.

 

Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out.

 

Hang in there. It will come.

 

Angela

 

"Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.

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Hi Lynn,

 

During this exacerbation, tics are not our big issue...it's separation anxiety and some contamination fears thrown in for good measure. We have the please of being under Dr. T's service so for the first time ever, I'm not trying to convince someone of what's going on with my son. As frustrated/sad/scared to death as I am, we actually have it so much better now than ever before. Just having a great doc adds a layer of hope that we'd always lacked previously. If needed, I'd pull out every big gun in the arsenal to get him back to his life of a few weeks ago. Since he's a good responder to advil, I suspect if needed he might be a good responder to steroids but I want to know we're not dealing with lyme as well before even bringing that up with Dr. T. Historically we have ridiculously high titers during an exacerbation, so I'm really hoping oral abx will pull the trigger for him. He's been through enough...they all have.

 

Thanks so much for your support!

Gayle

 

(((Gat'sMom))),

 

I'm soooo sorry to hear your frustration. Does your son suffer primarely from tics/ocd or both? I know with tics, they are the hardest to eliminate. Sometimes resulting in pulling out the "big guns"-IVIG! Have you considered IVIG? Do you see a PANDAS doc? I hope you find your answers/resolve, soon!

 

Thinking of you and wishing you success.

 

Lynn

 

My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress.

 

I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved.

 

Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on.

 

Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out.

 

Hang in there. It will come.

 

Angela

 

"Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.

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