Tried ABX, cleared up, regression while still taking them

[faith]

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

 

When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

 

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17.

 

 

What is her weight and what dose is she on of Zith?

 

That seems like a low dose compared to what many doctors prescribe for PANDAS. My dd is on both 2000mg of Augmentin XR AND 500mg of Zithromax. She weighs about 92 lbs. The idea, I believe is, if it has gone intracellular, you need to really have some strong antibiotics to wipe it out. So far, she has improved again since adding the Zith. She is hardly ticing at all these last few days and her reassurance questions have gone from every few seconds to about 30 minutes apart.

 

What I am wondering is, are these cases where people are giving up on a particular antibiotic done before a high enough dose is maintained for some time, (including waiting out the saw tooth recovery pattern) or are they seeing a back slide (which could be due to anything that stresses the immune system) and giving up too quickly.

 

Angela

 

Angela,

just to reiterate, you say since you put the zith on top of the augmentin, she improved again? how many days on tis? she had tics before on just the augmentin? now, they seem to be none? that's kind of a whopping dose.

 

I understand what you say about the abx trials, but right now I took my son off the zith, because it looked to me like he had a big increase in vocals. I had given about 10 days worth and didn't really see much improvement in anything, then missed two days due to not having the script refilled, and I actually thought he did better while NOT getting the pill, and then the third day I gave it to him and wow, his vocal went off pretty bad. I stopped it and he calmed down the next day and after that. It was pretty clear that the increase was the azith, or rather the wane was from coming off, because it was twice of going off and seeing better symptoms. (I don't like to report something just for a one time or one day upswing) he's been off the zith for about a week now, and yes, he still has vocal, but not the big increase every second that was going on, it was pretty unbelievable, he wouldn't stop and it was loud. I don't want to continue with the zith, but I still have a script for augmentin, and just wondering if I should give it another shot.

 

Faith

[smartyjones]

faith - i do apologize b/c i can't remember your son's recent history with abx and other meds - just wanted to quickly chime in if you haven't seen me write it before - the first abx my son was on was azith and it was terrible. i know many others have great results. for us, even some pandas behaviors that had left returned with a vengenance and i don't believe it to be a turning back the pages situation, i think it was exacerbation. we then switched drs and the new one put him on 30 days of keflex. in about 3 days, all symptoms left.

 

could it be not that abx isn't helpful but you need the right one?

[T_Mom]

Hi All-- I can't help but add that there is a long-term perspective that is essential here--It takes time to heal.

Our daughter had ups and downs through out the year long process of full-strength antibiotics...and two steroid bursts along the way. A year later and she is essentially 100%, but it was one looonnnggg year.

 

I think it was really important for us to hear, and hear again, that a month of antibiotics was a "trial" essentially and not to "prevent" but to treat. There is some type of anti-inflammatory effect, which with some "Ps" kids makes OCD and tics go away--

 

We found it very important to set the sail and then keep steady to give it TIME to have an effect.

Best to All--

[smartyjones]

t. mom - so are you saying a full year from when you knew it was pandas and went on full-strength abx to when you thought you could rate her at 100% recovery?

[Suzan]

Hi All-- I can't help but add that there is a long-term perspective that is essential here--It takes time to heal.

Our daughter had ups and downs through out the year long process of full-strength antibiotics...and two steroid bursts along the way. A year later and she is essentially 100%, but it was one looonnnggg year.

 

I think it was really important for us to hear, and hear again, that a month of antibiotics was a "trial" essentially and not to "prevent" but to treat. There is some type of anti-inflammatory effect, which with some "Ps" kids makes OCD and tics go away--

 

We found it very important to set the sail and then keep steady to give it TIME to have an effect.

Best to All--

 

After a month or so on the higher dose, I tried to reduce my dd's antibiotics and she started failing within a week. This will be important for me to remember too, that it takes time and that she is hopefully healing while on these meds.

 

Susan

[T_Mom]

Hi Smartyjones--

I would say that after her worst exacerbation she then had three moderate "episodes" all illness triggered, within 6 months...Once we started full strength antibiotics she showed improvements for about 3 months until her "progress" noticeably plateaued and we then tried a steroid burst. Steroid use was really key and brought a huge essentially immediate improvement. However, there were minor issues every now and then, maybe 3 compulsions a day at times that she'd tell me about (had to spin around three times, that type of thing.) There were little ups and downs -- though fewer each month. It took about 10 months until the compulsions essentially stopped completely. Holding steady.

 

I am pasting a previous post of answers to your questions about our history from another thread, which I am not sure you ever saw--just in case you didn't --All the best, TMom

 

Hi Smartyjones--

Forgive the length of this, but you have such good questions. I have bolded my replies below--All the best, TMom

so you believe that the abx quell the brain inflammation?

Yes, I do think that one result of Amoxicillan treatment is an anti-inflammatory effect. As I have noted before, an original Ps doctor who saw our d told us Amox. had anti-inflammatory effects (as well as other effects of course!)

are there only certain abx that have anti-inflammatory properties or all?

is it that the abx reduce the inflammation, or that they calm other factors that are causing the inflammation?

Good questions--I don't know:) There may also be anti-inflammatory effects from some SSRIs, I was told that by a Hopkins Dr.

 

would this be the same effect from ibuprofen? is there anything else that would have this same effect?

Again, good questions, I do not know--

 

are you saying that you'd increase abx due to behavior regardless of evidence of bacterial infection? i think i'm having trouble understanding what the abx would do if not going after a bacterial problem. or is it that we can't be sure there is not a bacterial problem? does no one really know and you're stating what you've observed as cause and effect with your treatments?

 

Good questions, let me try to explain--Our d was hit by what OCD expert Dr. Judy Rapoport called an OCD "storm". She had sudden-onset severe, regressive, OCD -- and had it show up more than once. Accompanying this she has had mild tics (face-stretching, etc.)

 

Our d was entirely incapacitated by OCD within the span of 4 weeks in the summer of 08. She told us along the way that, "OCD told me to..." time and again. We have seen more than 16 doctors within the ensuing year, including OCD experts, CBT therapists, etc.

 

At the worst she was step-stepping, touching things, holding spit in her mouth until it over flowed, holding her eyes closed, holding "painful" positions, or arching her back in the car until she cried from pain, she became frighteningly unpredictable, she had bathroom accidents, and stopped speaking (literally no words) for almost 4 weeks. She presented as a naughty 4 year old (she was 10)--I thought our d (talented and gifted) was gone. She would throw food and spit at us, etc. Nightmare. MRI, bloodwork, etc. showed nothing--

Around this time, I contacted Diana who reminded me on the phone that encephalitis (ie, brain inflammation) was of course treated with anti-inflammatory agents--(thank you D.!) The ONLY thing that showed up medically at this time was sinusitis on the MRI...as a result my h suggested we put her on antibiotics (given his reading on Ps) and at the same time we consulted with Dr K (by phone) and he suggested a steroid burst--which we did.

 

8pm one evening in late August she came downstairs walking and talking--not 100%, but talking, eyes open, etc. Almost 100% --healing took time. However, I can attest that the results were remarkable, one doctor used the word miraculous.

 

Do I think it was the steroids and/or antibiotics that cleared her that time, YES. Though we did not fully "get it" yet...

 

After the REALLY bad episode, and her subsequent good reaction to abx and steroids, we only did the regular 10 days of abx. She went on to do "OK" until she caught a cold within about a month, and then another one, and another. 3 times she had obvious cold-like issues that fall-winter and the OCD/ticcing came back, and we gave her a 10 day abx treatment each time, and she got better--OCD/ticcing subsided. Until last December.

 

She had another cold, high fever, congestion, etc. After 10 days of abx she was "better" but then we went to half-strength abx as a prophylactic measure, and her OCD exploded. I suspect the illness had not been eradicated by the abx. She quickly became incapacitated again--did not speak for 10 days over Christmas, etc. We increased her abx to full-strength , and she was better within 4 days and able to go to school.

 

She has been on full-strength abx ever since, almost a year now. She had another steroid burst around March as after 3 months of abx she was still only about 85% herself, and the steroids brought her back to 125% herself--

 

So that is where we are--I would start abx full-strength again in a hearbeat for at least a month, to see if they worked. For us it certainly was a relatively benign treatment and with the additional steroid treatment our d is back.

t-mom, can you remind me what your daughter is on now?

 

Amoxicillan 1000 mg a day, 20 mg of Prozac (afraid to change a thing), vit D, multi-vitamin, and various probiotics.

[faith]

faith - i do apologize b/c i can't remember your son's recent history with abx and other meds - just wanted to quickly chime in if you haven't seen me write it before - the first abx my son was on was azith and it was terrible. i know many others have great results. for us, even some pandas behaviors that had left returned with a vengenance and i don't believe it to be a turning back the pages situation, i think it was exacerbation. we then switched drs and the new one put him on 30 days of keflex. in about 3 days, all symptoms left.

 

could it be not that abx isn't helpful but you need the right one?

 

 

I think I did read about your experience with azith, thank you. We tried a month of augmentin with nothing remarkable happening, so we switched to the azith. my son is 10 and has tics/ocd and other issues for about 7 years, altho just beginning treatment recently.

 

could I ask how long your child had symptoms before you first used the azith and then the keflex?

 

thanks

Faith

[thereishope]

Good reminder. Even though meds play an essential, important role in healing, once the infection is under control (which takes longer than that 10 day script docs like to prescribe) , one then has to give the child and brain time to heal. Unfortunately, for most of us , the negative change in our children happened in an instant, but take awhile to recover. For my son, the first 2 strep triggered exacebations took approx 2 months to recover. The third took about 5 months.

 

 

 

 

Hi All-- I can't help but add that there is a long-term perspective that is essential here--It takes time to heal.

Our daughter had ups and downs through out the year long process of full-strength antibiotics...and two steroid bursts along the way. A year later and she is essentially 100%, but it was one looonnnggg year.

 

I think it was really important for us to hear, and hear again, that a month of antibiotics was a "trial" essentially and not to "prevent" but to treat. There is some type of anti-inflammatory effect, which with some "Ps" kids makes OCD and tics go away--

 

We found it very important to set the sail and then keep steady to give it TIME to have an effect.

Best to All--

[smartyjones]

thanks t-mom - i always feel i learn so much from you!

[smartyjones]

I think I did read about your experience with azith, thank you. We tried a month of augmentin with nothing remarkable happening, so we switched to the azith. my son is 10 and has tics/ocd and other issues for about 7 years, altho just beginning treatment recently.

 

could I ask how long your child had symptoms before you first used the azith and then the keflex?

 

thanks

Faith

 

 

yes - that length of time may play into much! my son hasn't really had appreciable tics - at first i thought he'd had none. a few months ago, you and i discussed that issue and i think he may have had some transient ones but nothing really even noticeable to others. he mostly presents with very obnoxious behavior, impulsiveness, repeating and silly rhyming, fear, need for certainty, difficult decisions.

 

he had strep at 22 months. i now think he may have shown slight symptoms but were easily written off as 2 and 3 years old behavior. he was a bit of a quick temperment but totally manageable. last Oct/Nov, he went off the chart with obnoxious behavior and severe separation anxiety. late Dec titers were high and Jan he had a positive throat culture. Jan was the azith and he was clingy, obnoxious, tired, a little aggressive. he got on keflex in Feb. so really only 5 months from explosion of symptoms until keflex help. (4 months until we tried azith)

[momaine]

T Mom,

Thank you for writing that all out. It is things like this that I need to read to keep the faith. There are many similarities to my dd's case and I do believe right now she is slowly healing. It just isn't as quickly as I would like.

Angela

 

 

Hi Smartyjones--

I would say that after her worst exacerbation she then had three moderate "episodes" all illness triggered, within 6 months...Once we started full strength antibiotics she showed improvements for about 3 months until her "progress" noticeably plateaued and we then tried a steroid burst. Steroid use was really key and brought a huge essentially immediate improvement. However, there were minor issues every now and then, maybe 3 compulsions a day at times that she'd tell me about (had to spin around three times, that type of thing.) There were little ups and downs -- though fewer each month. It took about 10 months until the compulsions essentially stopped completely. Holding steady.

 

I am pasting a previous post of answers to your questions about our history from another thread, which I am not sure you ever saw--just in case you didn't --All the best, TMom

 

Hi Smartyjones--

Forgive the length of this, but you have such good questions. I have bolded my replies below--All the best, TMom

so you believe that the abx quell the brain inflammation?

Yes, I do think that one result of Amoxicillan treatment is an anti-inflammatory effect. As I have noted before, an original Ps doctor who saw our d told us Amox. had anti-inflammatory effects (as well as other effects of course!)

are there only certain abx that have anti-inflammatory properties or all?

is it that the abx reduce the inflammation, or that they calm other factors that are causing the inflammation?

Good questions--I don't know:) There may also be anti-inflammatory effects from some SSRIs, I was told that by a Hopkins Dr.

 

would this be the same effect from ibuprofen? is there anything else that would have this same effect?

Again, good questions, I do not know--

 

are you saying that you'd increase abx due to behavior regardless of evidence of bacterial infection? i think i'm having trouble understanding what the abx would do if not going after a bacterial problem. or is it that we can't be sure there is not a bacterial problem? does no one really know and you're stating what you've observed as cause and effect with your treatments?

 

Good questions, let me try to explain--Our d was hit by what OCD expert Dr. Judy Rapoport called an OCD "storm". She had sudden-onset severe, regressive, OCD -- and had it show up more than once. Accompanying this she has had mild tics (face-stretching, etc.)

 

Our d was entirely incapacitated by OCD within the span of 4 weeks in the summer of 08. She told us along the way that, "OCD told me to..." time and again. We have seen more than 16 doctors within the ensuing year, including OCD experts, CBT therapists, etc.

 

At the worst she was step-stepping, touching things, holding spit in her mouth until it over flowed, holding her eyes closed, holding "painful" positions, or arching her back in the car until she cried from pain, she became frighteningly unpredictable, she had bathroom accidents, and stopped speaking (literally no words) for almost 4 weeks. She presented as a naughty 4 year old (she was 10)--I thought our d (talented and gifted) was gone. She would throw food and spit at us, etc. Nightmare. MRI, bloodwork, etc. showed nothing--

Around this time, I contacted Diana who reminded me on the phone that encephalitis (ie, brain inflammation) was of course treated with anti-inflammatory agents--(thank you D.!) The ONLY thing that showed up medically at this time was sinusitis on the MRI...as a result my h suggested we put her on antibiotics (given his reading on Ps) and at the same time we consulted with Dr K (by phone) and he suggested a steroid burst--which we did.

 

8pm one evening in late August she came downstairs walking and talking--not 100%, but talking, eyes open, etc. Almost 100% --healing took time. However, I can attest that the results were remarkable, one doctor used the word miraculous.

 

Do I think it was the steroids and/or antibiotics that cleared her that time, YES. Though we did not fully "get it" yet...

 

After the REALLY bad episode, and her subsequent good reaction to abx and steroids, we only did the regular 10 days of abx. She went on to do "OK" until she caught a cold within about a month, and then another one, and another. 3 times she had obvious cold-like issues that fall-winter and the OCD/ticcing came back, and we gave her a 10 day abx treatment each time, and she got better--OCD/ticcing subsided. Until last December.

 

She had another cold, high fever, congestion, etc. After 10 days of abx she was "better" but then we went to half-strength abx as a prophylactic measure, and her OCD exploded. I suspect the illness had not been eradicated by the abx. She quickly became incapacitated again--did not speak for 10 days over Christmas, etc. We increased her abx to full-strength , and she was better within 4 days and able to go to school.

 

She has been on full-strength abx ever since, almost a year now. She had another steroid burst around March as after 3 months of abx she was still only about 85% herself, and the steroids brought her back to 125% herself--

 

So that is where we are--I would start abx full-strength again in a hearbeat for at least a month, to see if they worked. For us it certainly was a relatively benign treatment and with the additional steroid treatment our d is back.

t-mom, can you remind me what your daughter is on now?

 

Amoxicillan 1000 mg a day, 20 mg of Prozac (afraid to change a thing), vit D, multi-vitamin, and various probiotics.

[momaine]

Hi Faith,

Yes, its sort of complicated, but after adding Zith dd's symptoms began to improve dramatically within two days. However, you might want to know what lead up to that in order to see the big picture. 10 days into 2000mg augmentin xr, tics dissapeared for ten days till dd got a yeast infection. Then back worse than ever. after two days from ###### (really bad ocd and tics), the tics bega to lessen but were still quite prevalent. During those two days we also were treating the yeast infection. This setback prompted our trip to Dr. Trifiletti in NY and becasue we took a friend, issues were not bad at all while we were there. (typical for my dd, she can hold it together in front of friends for the most part)

 

Came home, two more days of total ######. (reassurance questions all day long only a couple seconds apart and moderate tics as well as other repeating issues- a big one is walking) filled the script for Zith, began on Friday. saturday was a better day...and each day has improved since then, for the most part. Reassurance questions that had been only seconds apart all day are half an hour apart and sometimes more. I haven't heard the vocal tic for several days now. The facial tic has lessened a lot.

 

She, however, is still frustrated at not being able to everything she wants to do without difficulty. She still battles yeast every two or three days she begins to get a rash on her bottom and she treats it and it goes away only to come back again in a couple days. But when it comes back there is no set back in her behaviors now, like the first time, which was before the Zith. So, I do think the Zith is playing a big part in how she is doing. Wish it were overnigth and miraculous like I've read about some kids but its not.

 

Angela

 

 

 

Angela,

just to reiterate, you say since you put the zith on top of the augmentin, she improved again? how many days on tis? she had tics before on just the augmentin? now, they seem to be none? that's kind of a whopping dose.

 

I understand what you say about the abx trials, but right now I took my son off the zith, because it looked to me like he had a big increase in vocals. I had given about 10 days worth and didn't really see much improvement in anything, then missed two days due to not having the script refilled, and I actually thought he did better while NOT getting the pill, and then the third day I gave it to him and wow, his vocal went off pretty bad. I stopped it and he calmed down the next day and after that. It was pretty clear that the increase was the azith, or rather the wane was from coming off, because it was twice of going off and seeing better symptoms. (I don't like to report something just for a one time or one day upswing) he's been off the zith for about a week now, and yes, he still has vocal, but not the big increase every second that was going on, it was pretty unbelievable, he wouldn't stop and it was loud. I don't want to continue with the zith, but I still have a script for augmentin, and just wondering if I should give it another shot.

 

Faith

[michele]

My son can hold it togeher also in front of teachers and Dr's but falls apart when we are in a family setting. We started on pen vk in 2006(the red liquid made him hyper)as recommened on NIH website then tried amoxcil when it really didn't help much. After another episode while on antibioics that involved compulsive urination and rituals we went on Omnicef 2007. It did help for a time. Then he had a set back on it too and started having encopresis. I didn't know if they were connected so we stopped it daily in Aug. 2009 When he recently had a relapse I used Augmentin and it helped calm things but it sill took the usual eight weeks to pass the episode even on the antibitoics. We are not on the antibiotics daily but only during exacerbations for now. His symptoms are very saw toothed and we have never been able to find antibiotics as a cure for the symptoms but as a way to help slow the symptoms. We also had to treat yeast while on them. Maybe Azith or high doses of Augmentin would be different but we were never prescribed either. If we see Dr. T or do a phone consult he said he would prescribe them. Dr. Latimer did not prescribe them nor did T Murphy. I am worried about paying for another Dr. and not getting results. Right now he is stable but is on medications for anxiety, moods and anger and tics.

Hi Faith,

Yes, its sort of complicated, but after adding Zith dd's symptoms began to improve dramatically within two days. However, you might want to know what lead up to that in order to see the big picture. 10 days into 2000mg augmentin xr, tics dissapeared for ten days till dd got a yeast infection. Then back worse than ever. after two days from ###### (really bad ocd and tics), the tics bega to lessen but were still quite prevalent. During those two days we also were treating the yeast infection. This setback prompted our trip to Dr. Trifiletti in NY and becasue we took a friend, issues were not bad at all while we were there. (typical for my dd, she can hold it together in front of friends for the most part)

 

Came home, two more days of total ######. (reassurance questions all day long only a couple seconds apart and moderate tics as well as other repeating issues- a big one is walking) filled the script for Zith, began on Friday. saturday was a better day...and each day has improved since then, for the most part. Reassurance questions that had been only seconds apart all day are half an hour apart and sometimes more. I haven't heard the vocal tic for several days now. The facial tic has lessened a lot.

 

She, however, is still frustrated at not being able to everything she wants to do without difficulty. She still battles yeast every two or three days she begins to get a rash on her bottom and she treats it and it goes away only to come back again in a couple days. But when it comes back there is no set back in her behaviors now, like the first time, which was before the Zith. So, I do think the Zith is playing a big part in how she is doing. Wish it were overnigth and miraculous like I've read about some kids but its not.

 

Angela

 

 

 

Angela,

just to reiterate, you say since you put the zith on top of the augmentin, she improved again? how many days on tis? she had tics before on just the augmentin? now, they seem to be none? that's kind of a whopping dose.

 

I understand what you say about the abx trials, but right now I took my son off the zith, because it looked to me like he had a big increase in vocals. I had given about 10 days worth and didn't really see much improvement in anything, then missed two days due to not having the script refilled, and I actually thought he did better while NOT getting the pill, and then the third day I gave it to him and wow, his vocal went off pretty bad. I stopped it and he calmed down the next day and after that. It was pretty clear that the increase was the azith, or rather the wane was from coming off, because it was twice of going off and seeing better symptoms. (I don't like to report something just for a one time or one day upswing) he's been off the zith for about a week now, and yes, he still has vocal, but not the big increase every second that was going on, it was pretty unbelievable, he wouldn't stop and it was loud. I don't want to continue with the zith, but I still have a script for augmentin, and just wondering if I should give it another shot.

 

Faith