Two steps forward 1 step back

[simplygina]

My son is on day 16 of Biaxin. The first 10 days were nothing short of miraculous. We were off for 2 days waiting for a refill with noticeable backsliding. He started again last Tuesday. I realized on Wednesday I had forgotten to add the 25 mg of Zoloft he is still taking to his morning meds/supps. I figured he was doing so well we would just go with it and see if we can finally get off of it for good. The drug has done nothing to improve is OCD and has caused weight gain. We realized it was the cause of some of his symptoms (non-stop wiggling/writhing, manic behavior with worsening of some tics) so we have slowly been tapering him off with the only noticeable differences being positive. With each 25 mg I've tapered he has had a few days of minor withdrawal symptoms (headache, tired, a little more emotional) which I was prepared for. However, every time we try to cut out the last 25 mg he goes through major withdrawal. This is our 3rd try. I was going to wait until summer but figured since we'd already forgotten a few days, we should just go with it. Not sure that was the best idea. The past 4 days he has been VERY emotional and exhausted. He has no coping skills or patience. Finally, after a long hard weekend with my husband out of town and 6 more days until his return, I cut the 25mg in half and gave it to him this afternoon. He called me earlier this evening from karate in tears because he didn't like the way an older girl talked to him. He just isn't handling life at all. He's got a karate tournament this weekend and I'm really worried that he isn't going to be able to handle it.

 

I am so frustrated! I want him off! He asked me on the 3rd day if he was off the Zoloft and was glad when I said yes. I hate the idea of him taking a mind altering drug that doesn't help him. I hate that he is addicted to something we thought would help and no one told me how hard it would be to get off of it. It's tempting to keep him on it indefinitely if the withdrawal is so difficult, but I know that doesn't really make any sense! I'm going to continue with the 12.5 mg because we obviously need to take this last taper more slowly but I don't want to go back up to the full 25 mg. It's been 4 hard days already, we may as well push through. When I handed him the little bit today, I could tell he was disappointed but a little relieved at the same time. Poor kid.

 

And to top it off, I'm only assuming it is the Zoloft withdrawal. It could be the Biaxin just isn't working anymore. It could be the old sawtooth progress thing. He could be getting sick again. Maybe one of the rest of us is harboring something. I don't really know! I'm just assuming that it is this because it is similar to before and it is the only changed variable (that I know of and have control over).

 

It's so hard to see your child behaving so normally and feeling so much happier for a time only to see it slip away. I have to believe it is better for him overall to get off a drug he doesn't need, I'm just kicking myself for inadvertently changing anything because things were going so well, though the 2 days off didn't help either. I'm really so tired of dealing with the years of emotional ups and downs tonight. I just want him better.

[kcdc3]

Boy, that Zoloft taper is tough. I remember weaning my dd off of it last summer. It definitely wasn't helping, either. The withdrawals are very tough. My dd went through a lot of emotional things and even had a lot of dizziness and what she called zapping sounds in her head. She was extremely fatigued while withdrawing, also. She was not on an antibiotic at the time, so I don't have that experience to relate. I do know that once she was off the Zoloft, she improved. That's when we really realized how much the Zoloft had been making things worse.

We are also on the Biaxin. We had to stop taking it for about 4 days on about day 22 due to stomach upset. Those 4 days she spiraled downward tremendously. We had her to about 80% and when she went off of it she went down to about 10 or 20 %. Needless to say, we put her back on it this past Saturday and today I am starting to see the positives creep slowly back. It is so obvious that it helps her. Biaxin does for her what I think Zoloft should do for someone that didn't have PANDAS. The Biaxin makes her the way Zoloft should have, but didn't. Weird!!!

Hang in there. Even on the Biaxin, we still have those sawtooth days, but the sawtooth days are better than her best day off of the Biaxin.

[MomWithOCDSon]

Hang tough, Gina! You guys can get through this!

 

You know, at least twice we experienced a plateauing or even some backsliding around Day 10 or 12 of the antibiotics, so it wouldn't be unusual; yes, "saw-toothed" it is! As for the Zoloft, I know how you feel there, too; our DS has been on Luvox since before his PANDAS diagnosis, and though it is a low dose and we have declined the psych's suggestion that we increase it at points in time, we've been too wary of trimming it back because he's doing so well right now. I don't think it's helped him at all, but it doesn't seem to be hurting at this point, either, so, for the time being anyway, we're leaving it in place.

 

I don't know if that's the right answer, especially if the longer we leave it in place, the harder it might be to wean off of it. But with him doing so well and getting more and more consistently level emotionally and happy, it seems a small price to pay after months of tears, frustration and depression.

 

My son is on day 16 of Biaxin. The first 10 days were nothing short of miraculous. We were off for 2 days waiting for a refill with noticeable backsliding. He started again last Tuesday. I realized on Wednesday I had forgotten to add the 25 mg of Zoloft he is still taking to his morning meds/supps. I figured he was doing so well we would just go with it and see if we can finally get off of it for good. The drug has done nothing to improve is OCD and has caused weight gain. We realized it was the cause of some of his symptoms (non-stop wiggling/writhing, manic behavior with worsening of some tics) so we have slowly been tapering him off with the only noticeable differences being positive. With each 25 mg I've tapered he has had a few days of minor withdrawal symptoms (headache, tired, a little more emotional) which I was prepared for. However, every time we try to cut out the last 25 mg he goes through major withdrawal. This is our 3rd try. I was going to wait until summer but figured since we'd already forgotten a few days, we should just go with it. Not sure that was the best idea. The past 4 days he has been VERY emotional and exhausted. He has no coping skills or patience. Finally, after a long hard weekend with my husband out of town and 6 more days until his return, I cut the 25mg in half and gave it to him this afternoon. He called me earlier this evening from karate in tears because he didn't like the way an older girl talked to him. He just isn't handling life at all. He's got a karate tournament this weekend and I'm really worried that he isn't going to be able to handle it.

 

I am so frustrated! I want him off! He asked me on the 3rd day if he was off the Zoloft and was glad when I said yes. I hate the idea of him taking a mind altering drug that doesn't help him. I hate that he is addicted to something we thought would help and no one told me how hard it would be to get off of it. It's tempting to keep him on it indefinitely if the withdrawal is so difficult, but I know that doesn't really make any sense! I'm going to continue with the 12.5 mg because we obviously need to take this last taper more slowly but I don't want to go back up to the full 25 mg. It's been 4 hard days already, we may as well push through. When I handed him the little bit today, I could tell he was disappointed but a little relieved at the same time. Poor kid.

 

And to top it off, I'm only assuming it is the Zoloft withdrawal. It could be the Biaxin just isn't working anymore. It could be the old sawtooth progress thing. He could be getting sick again. Maybe one of the rest of us is harboring something. I don't really know! I'm just assuming that it is this because it is similar to before and it is the only changed variable (that I know of and have control over).

 

It's so hard to see your child behaving so normally and feeling so much happier for a time only to see it slip away. I have to believe it is better for him overall to get off a drug he doesn't need, I'm just kicking myself for inadvertently changing anything because things were going so well, though the 2 days off didn't help either. I'm really so tired of dealing with the years of emotional ups and downs tonight. I just want him better.

[simplygina]

Thanks guys!

 

I have had the same thought, that the Biaxin is what I thought Zoloft was going to be. So far his stomach is OK, and we are giving lots of probiotics. Hope it stays that way. After 2 full strength courses with improvement, I'm wondering if we should start a prophylactic dose, especially since we are headed into spring and summer, which are always better for him.

 

When I picked him up from karate this evening, the 12.5 mg seems to have kicked in and he was in a much better place than he has been the last few days, so I'm sure it is withdrawal we are dealing with. He even told me he's been thinking that he really wants to improve his diet so his body is healthier and can heal faster. Up to this point he has been going along very grudgingly and eating the junk whenever he could get away with it. He asked me put restrictions on his tab at the snack bar at his karate school and wants to start packing a lunch. That really surprised me.

 

I think we are just going to have to take this last little bit really slowly. Right now we have 100 mg pills I've been quartering. Cutting them down to 1/8 is getting hard so I may have to have his doctor call in a prescription for 25 mg pills that we can halve to make it simpler. Especially because we may end up having to taper even further depending on how things go.

 

He also had the zapping in his head when we did the first taper. Because my sister had gone off it a few years earlier, I knew what it was, but it was still scary. It only happened one day though. I wish someone had explained to me just how hard it is really to get off. I only vaguely remembered my sister saying she went through withdrawal. She didn't really elaborate until I told her I was going to taper him off. Then she told me it was the two worst weeks of her entire life and she truly thought she'd have to take it forever because she couldn't imagine going on feeling that horrible. That made me even more sure that we had to get him off. I wish she would have told me that when I mentioned we were going to start taking it! She thought it was just her experience though. Now I've read enough to realize how common it is. I've taken Wellbutrin two different times and tapered off so easily. I guess it works a little differently though.

 

I really hope tomorrow is a better day!

[momaine]

It tastes horrible, but you can get liquid zoloft that you can dose easier on the smaller doses. Dilute it in water. Be sure you know the diference on the syringe between 1mg and .1mg. I messed that up once.

 

We had a similar week to yours. Doing VERY well on the Biaxin (combined with monthly prednisone burst for 5 days) but then I cut back on the Celexa a small amount and everything fell apart. For her though, it wasn't the typical withdrawal symptoms but a worsening of her OCD/tics.

 

Makes me think that despite the fact that Biaxin is helping quite a bit, it isn't getting to the crux of the problem and if it were not for the Celexa she would be non-functioning, at this point. I'm not patient at this point and am pursueing IVIG. I just can't wait this out and see what happens over the course of months. My dd is suffering.

Angela

 

Thanks guys!

 

I have had the same thought, that the Biaxin is what I thought Zoloft was going to be. So far his stomach is OK, and we are giving lots of probiotics. Hope it stays that way. After 2 full strength courses with improvement, I'm wondering if we should start a prophylactic dose, especially since we are headed into spring and summer, which are always better for him.

 

When I picked him up from karate this evening, the 12.5 mg seems to have kicked in and he was in a much better place than he has been the last few days, so I'm sure it is withdrawal we are dealing with. He even told me he's been thinking that he really wants to improve his diet so his body is healthier and can heal faster. Up to this point he has been going along very grudgingly and eating the junk whenever he could get away with it. He asked me put restrictions on his tab at the snack bar at his karate school and wants to start packing a lunch. That really surprised me.

 

I think we are just going to have to take this last little bit really slowly. Right now we have 100 mg pills I've been quartering. Cutting them down to 1/8 is getting hard so I may have to have his doctor call in a prescription for 25 mg pills that we can halve to make it simpler. Especially because we may end up having to taper even further depending on how things go.

 

He also had the zapping in his head when we did the first taper. Because my sister had gone off it a few years earlier, I knew what it was, but it was still scary. It only happened one day though. I wish someone had explained to me just how hard it is really to get off. I only vaguely remembered my sister saying she went through withdrawal. She didn't really elaborate until I told her I was going to taper him off. Then she told me it was the two worst weeks of her entire life and she truly thought she'd have to take it forever because she couldn't imagine going on feeling that horrible. That made me even more sure that we had to get him off. I wish she would have told me that when I mentioned we were going to start taking it! She thought it was just her experience though. Now I've read enough to realize how common it is. I've taken Wellbutrin two different times and tapered off so easily. I guess it works a little differently though.

 

I really hope tomorrow is a better day!

[Doug]

Hi,

Hang in there!!

Have you talked to Dr.K?

or have done ivig??

We went to dr.K and had ivig done

about 6 weeks ago and have seen some good

sign's

Tracie& Doug

[simplygina]

Angela,

 

I've read that Celexa and Lexapro are the two with the worst withdrawals because their half life are so short. Most people have to taper very very slowly.

 

My son's tics do get a little worse with each withdrawal but then improve again, which is how I know it is due to the withdrawal as opposed to him actually needing the Zoloft. And the fact that when I return him to the former dose they and his mood and physical symptoms get better within a few hours. Since your daughter is really suffering, I'd keep her on the Celexa until she's in a better place. Dealing with PANDAS and withdrawal is just too darn much for anyone. Like I said, I had planned to wait until summer to go off completely, but I just forgot to cut up the Zoloft and add them to his pill case.

 

He woke up this morning happy as can be. He was tap dancing through the entry way this morning while waiting for his brother instead of growling about being late and then decided that he would take his camera outside to take some pictures of the birds. I completely credit the overall change to Biaxin. At any dose of Zoloft he hasn't been this happy in a long time. Spring always helps too. I think we are going to stick with the 12.5 mg of Zoloft until later this Spring or until school is out. I've read that often a very low dose is more effective than a higher dose. That may be the case for my son. As long as he isn't gaining weight and acting like he has worms in his pants I'm fine with him taking it. I just want to know that it is doing something positive for him.

 

I'm quite relieved to know that it IS the Zoloft and that the Biaxin is still working its wonders. He seems to be coming down with another URI. We'll see if the Biaxin keeps it from turning into an ear infection and/or sinus infection with the accompanying downward spiral. Then again, it could be allergies. I really need to get him into an allergist. I need more money to pay for all these tests and doctors visits!!!!