Is this normal

[mrigsby]

My son finished a 5 day steroid burst on Jan. 4th. He is also on Augmentin, 1500mg a day, for 10 days, which he will finish on the 9th. As most of you know he just finished a 10 day round of Augmentin, 1500 mg, on the 27th. I took him back on the 31st because I had seen no improvement if anything he only got worse and he tested positive for strep again.

Within a day or so after finishing first round of antibiotics, he was so hyper we couldn't hardly stand to be in the room with him, and he started ticking, which he hadn't done since the beginning of summer. Emotional lability and OCD was off the charts.

So, in essence, after a round of antibiotics that didn't work, his symptoms actually became much worse.

The only difference I've noticed through taking the steroid burst was that the ticks are gone for now, and everything else is milder. Thank goodness. Not gone, just milder.

I can only assume that since the first 10day round of Augmentin 1500mg did not rid him of the strep, this round of the same type dosing will probably not do much either. I was hoping that at least during the 5 days of steroids, his symptoms would completely go away. I have read where others have posted that their children where completely symptom free during steroid burst. Is this true for everyone? Is what we have expereinced so far normal to Pandas kids?

We just started down the right path for Pandas in Dec., although the doctor doesn't agree with me. I know in my heart and have known for years that Harley had Pandas. I did catch a little break, the Ear, nose, and throat doctor, (that our pediatrician refered us too) has been able to move the appointment up to Jan. 12th instead of Feb. 17th.

Harley had his tonsils and adnoids removed in Oct. of 2004. He also had his sinus cavaties enlarged and skin grafted from behind his ear to fill a hole where he had had a tube in his ear. All of this was due to chronic sinus infections and strep. The same ENT doctor that done all of these things and treated for sinus infection is the doctor that we have been refered back to.

On one hand I'm thinking since this is where and when our road to PANDAS truely began (almost 6 years ago, as he had sinus infection and recurrent strep for almost a year before these procedures where performed) maybe this doctor will be more willing to except PANDAS as a diagnosis. I am hoping and praying that this doctor will listen to me, especially since he should have the records of the infections. Any advice as to how to approach this doctor to convence him of PANDAS is greatly needed!

I do not understand why doctors are so unwilling to give our children prolonged antibiotics. His psychiatrist has been more than willing over the years to give him medication hand over fist that has never truely helped him. So why is it that its so hard to get an antibiotic? The last week of November, I tried to talk to his psychiatrist about how I did not fill that Harley had the diagnosis's he had been given and she basically brushed me off. So, I took it upon myself to research how to wean him off of his medications. In December I managed to get him off of everything except I am still giving him 10mg of Prozac which I will be taking this weekend. Harley's behaviors are the same with or without those medications just like I told her they would be, and I saw no reason to keep giving my child all of that when it was not helping him.

In Jan. 09, he was on Concerta 54 mg, once a day. Tenex, twice a day. Focalin 10mg, once a day, Prozac 30mg, once a day. And Trazodone 200mg once a day. (Anybody else been through this much medication at once)

Presently Jan. 2010 I am proud to say his is taking 10mg of Prozac (until this weekend) and his anitbiotic. Of cours I'm sure when his psychiatrist finds out, its gonna hit the fan.LOL

We met with his therapist yesterday and I told her about taking him off medications, and showed her research about PANDAS and she is behind us 100%. She says she doesn't know why doctors have such a problem excepting this. She said that now that she knows about PANDAS it explains alot to her, where Harley is concerned. She said his case had always been unusal to her. How he can go from off the charts to milder and then he will be off the charts in a totally different direction. She said she has always wondered what was truely going on with him. Sorry to have wrote a book, but Tuesday will be here before we know it and I would really like to be prepared. So, again please, anyone with advise or comments they are greatly needed!!

[Buster]

There's a lot in your post. I guess the first thing I should say is that we didn't see the impact of the prednisone until 10 days after the burst (i.e. the 14th day from the start). It was a very significant remission of symptoms.

 

You mentioned that you had shifted from 30mg Prozac (2009) down to 10mg (2010). I was wondering when you got down to 10mg. Prozac has a very long half-life and while it is self-weaning the withdrawl can be clouding some things. An item to consider is that it is possible you were getting activation from the Prozac when you were essentially removing the interference with dopamine by treating the PANDAS. I can write more here, but the short question is when were you doing the Prozac withdrawl relative to the Augmentin trial.

 

Buster

[Worried_Dad]

Our son improved significantly on the steroid burst, but not to 100%. And, unfortunately, the burst was 5 days and the improvement only lasted 4-5 days.

[thereishope]

I'll address the steroid question...

 

My son went on a 5 day steroid burst during one of his exacerbations. He did not fully get back to himself while on the steroid. What I say is he finally plateaued, stopped spirraling down, and gave a jump start in recovery.

 

So, the steroid did help us.

 

However, many children in this forum have different stories with steroids. The results are not "one size fits all". Some went back to 100% themself, some saw improvemnt after being on it for awhile, some backslid after going off of them, some did not, some did not really see benefits and actually had a bad reaction to them. The experiences really is all over the place.

 

So, how is he doing right now? What are his symptoms? I do know a PANDAS child who was put on Prozac and it probably coincided with improvement from abx. So, all thought it was the Prozac helping. However, then other odd behaviors surfaced and the parents realized it was the Prozac causing the new problems. Like you, the parent went against the docs recommendations and pulled the child off of Prozac. the child stabilized soon after. Now I am not saying this would be the case with your child as well. I know other people whose PANDAS children remain on Prozac and do not believe it is doing any harm to their child. It's a hard call to make and hard to weed through what is helping and what is hindering. It's also a hard decision to make since if take your child off the Prozac, realize it actually was helping them, then you have to wait for it to get in their sytsem all over again. My son never did SSRI's so Idon't have personal experience with them.

[matis_mom]

I think you are on the right track in thinking your child's behavioral problems are related to PANDAS. Now you need to figure out how to get him the right treatment, and BE PATIENT. When we first discovered PANDAS, we thought, "Oh, great, we'll give him antibiotics and he'll be back to normal", but that is not always the case, especially if the strep as been there for a long time, it will take a long time to erradicate strep and heal the brain.

I am glad to see your therapist is behind you, there is something in PANDAS kids that cannot be helped by therapy or psychiatric drugs. The brain is swollen, and that's why steroids help, but sometimes it takes a whole month of steroids (that's what we did, and he was back to almost normal). There are different post about how different children react to steroids, for some the change is total and immediate, for others it takes longer and is more gradual.

But in any case, the child needs to STAY on antibiotics in order to keep whatever improvement you've seen. And it needs to be the right abx, at the right dose. Even when you find that, being exposed to strep again can set the whole immune reaction going again, and it will feel like you are back to square one (that's what people are talking about when they mentioned "exacerbations"). It's not that the antibiotics are not working, it's just that when exposed, the child will react. So in that arena, it is very important to make sure everyone in the house gets checked for strep and to try to reduce exposure to anything (as many kids react not only to strep but colds, flus, allergies, etc)

So, if I where in your shoes, I would device a plan to

A. See a PANDAS expert and get him aggresively treated for PANDAS. You might be able to find a sympathetic pediatrician or ENT, but they will tend to do things more slowly and unless they really know the nature of the beast, you will be wasting precious time.

B. Slowly wean him of all psychiatric meds (that's where working with a neurologist like Dr. Latimer would be most helpful, I would think)

C. Keep working with your therapist and focus on Cognitive Behavioral Therapy / Exposure and Ritual Prevention to work on OCD, but I would do this after the strep and inflammation are under control.

 

This forum is a treasure of information, so keep asking questions at every step. Not all PANDAS kids fit the same profile, but you'll always find helpful advice here

[matis_mom]

Following up on Buster's post, it is important when trying to figure out what works not to change too many things at the same time, or you'll never be sure what worked...

When we switched to Dr. Latimer, she only changed the main antibiotic and added the steroid burst, leaving other things constant, so we can tell which is making a difference.

[mrigsby]

Buster,

I hate to admit, I researched about weaning him off of the Prozac. But it never dawned on me that some of what I am seeing could be related to the fact that I am doing that. Can you please explain more to me? Are you saying that because he is still on 10mg of Prozac that it may be interfering with treating the Pandas? I know I read that the Prozac could actually make behaviors worse, that has been my main focus in getting him off of it. And yes he was on 20mg of Prozac during the beginning of first round of antibiotics and I took him down to 10mg. When he finished he still tested positive for strep. We are currently on second round of antibiotics.He has been on 10mg since Dec. 27th.

 

 

There's a lot in your post. I guess the first thing I should say is that we didn't see the impact of the prednisone until 10 days after the burst (i.e. the 14th day from the start). It was a very significant remission of symptoms.

 

You mentioned that you had shifted from 30mg Prozac (2009) down to 10mg (2010). I was wondering when you got down to 10mg. Prozac has a very long half-life and while it is self-weaning the withdrawl can be clouding some things. An item to consider is that it is possible you were getting activation from the Prozac when you were essentially removing the interference with dopamine by treating the PANDAS. I can write more here, but the short question is when were you doing the Prozac withdrawl relative to the Augmentin trial.

 

Buster

[mrigsby]

Vickie,

Today Harley was not as hyper as he had been being. No ticks, thank goodness. However, OCD is still present. Some new behaviors we have noticed here lately are he talks loudly all the time. It's like he wants to be center of attention constantly. He's been constantly poking and aggrivating his brother, he can't walk by him without touching him. Also, he has been sticking his tongue out non stop. If you say anything to him, he sticks his tongue out and does this annoying laugh. This is very frustrating! He is 5ft,3 and ways 160 ponds, will be 13 in March and sticks his tongue out and makes faces constantly like you would expect a toddler to do.

 

 

 

 

 

I'll address the steroid question...

 

My son went on a 5 day steroid burst during one of his exacerbations. He did not fully get back to himself while on the steroid. What I say is he finally plateaued, stopped spirraling down, and gave a jump start in recovery.

 

So, the steroid did help us.

 

However, many children in this forum have different stories with steroids. The results are not "one size fits all". Some went back to 100% themself, some saw improvemnt after being on it for awhile, some backslid after going off of them, some did not, some did not really see benefits and actually had a bad reaction to them. The experiences really is all over the place.

 

So, how is he doing right now? What are his symptoms? I do know a PANDAS child who was put on Prozac and it probably coincided with improvement from abx. So, all thought it was the Prozac helping. However, then other odd behaviors surfaced and the parents realized it was the Prozac causing the new problems. Like you, the parent went against the docs recommendations and pulled the child off of Prozac. the child stabilized soon after. Now I am not saying this would be the case with your child as well. I know other people whose PANDAS children remain on Prozac and do not believe it is doing any harm to their child. It's a hard call to make and hard to weed through what is helping and what is hindering. It's also a hard decision to make since if take your child off the Prozac, realize it actually was helping them, then you have to wait for it to get in their sytsem all over again. My son never did SSRI's so Idon't have personal experience with them.

[Buster]

Repost if this doesn't quite explain it...

 

PANDAS is thought to be caused by an antibody that interferes with the dopamine receptors in the brain. I think of PANDAS like setting the volume on your TV for your favorite show and then a commercial hits and the volume is suddenly ear splitting loud, you reset for the commercial and now it is too soft for your show. Think of that happening all the time, it's really hard to keep the volume just right. Again it isn't that the volume is too loud or too soft -- it's sort of both -- it's not equalized or regulated. Maybe not the best analogy -- but I hate commercials .

 

Weaning off Prozac is sort of like that commercial interuption on its own. It takes about 3 weeks to reduce 30 mg of Prozac to 10 mg. NorFluoxetine has a half-life of ~14days. This means at 14 days the effect is like taking 15 mg. At 28 days, the effect is like taking 7mg, etc. In general, your child will stabilize to the new dosage level in 30 days from when you dropped the dose.

 

During the weaning, it is fairly common to have aggitation, irritation and motor difficulties. This is essentially from the body trying to re-regulate the changing amount of dopamine needed to transmit a signal. Yes, it is changing slowly but it still takes time to adjust.

 

Bottom line is that weaning can be a complicating factor with PANDAS because both are messing with the perceived amount of dopamine. If it has been < 30 days since your child has been on a stable dose of Prozac, you'll have to wait it out to see what the new baseline is.

 

Prozac doesn't exactly interfere with treating PANDAS, but rather Prozac and PANDAS are both messing with the same neurotransmitters.

 

Buster

 

Buster,

I hate to admit, I researched about weaning him off of the Prozac. But it never dawned on me that some of what I am seeing could be related to the fact that I am doing that. Can you please explain more to me? Are you saying that because he is still on 10mg of Prozac that it may be interfering with treating the Pandas? I know I read that the Prozac could actually make behaviors worse, that has been my main focus in getting him off of it. And yes he was on 20mg of Prozac during the beginning of first round of antibiotics and I took him down to 10mg. When he finished he still tested positive for strep. We are currently on second round of antibiotics.He has been on 10mg since Dec. 27th.

 

 

There's a lot in your post. I guess the first thing I should say is that we didn't see the impact of the prednisone until 10 days after the burst (i.e. the 14th day from the start). It was a very significant remission of symptoms.

 

You mentioned that you had shifted from 30mg Prozac (2009) down to 10mg (2010). I was wondering when you got down to 10mg. Prozac has a very long half-life and while it is self-weaning the withdrawl can be clouding some things. An item to consider is that it is possible you were getting activation from the Prozac when you were essentially removing the interference with dopamine by treating the PANDAS. I can write more here, but the short question is when were you doing the Prozac withdrawl relative to the Augmentin trial.

 

Buster

[mrigsby]

Buster,

Thank you very much. Great analogy, this makes much more sense to me now. I was wondering if you had any advice as to how I should approach the ENT doctor we are going to see Tuesday? I'm afraid if I take too much information with me that he will be hesitant to listen to me, but at the same time I want to be prepared enough that maybe I can make him understand that my son does have PANDAS and needs to be on long term antibiotics. This doctor, ironically is the same doctor we seen back in 2004, which is actually when our road to PANDAS began. What would you suggest that I take to present to the doctor about PANDAS? I value your opinion.

Misty

 

Repost if this doesn't quite explain it...

 

PANDAS is thought to be caused by an antibody that interferes with the dopamine receptors in the brain. I think of PANDAS like setting the volume on your TV for your favorite show and then a commercial hits and the volume is suddenly ear splitting loud, you reset for the commercial and now it is too soft for your show. Think of that happening all the time, it's really hard to keep the volume just right. Again it isn't that the volume is too loud or too soft -- it's sort of both -- it's not equalized or regulated. Maybe not the best analogy -- but I hate commercials .

 

Weaning off Prozac is sort of like that commercial interuption on its own. It takes about 3 weeks to reduce 30 mg of Proza to reduce to 10 mg. NorFluoxetine has a half-life of ~14days. This means at 14 days the effect is like taking 15 mg. At 28 days, the effect is like taking 7mg, etc. In general, your child will stabilize to the new dosage level in 30 days from when you dropped the dose.

 

During the weaning, it is fairly common to have aggitation, irritation and motor difficulties. This is essentially from the body trying to re-regulate the changing amount of dopamine needed to transmit a signal. Yes, it is changing slowly but it still takes time to adjust.

 

Bottom line is that weaning can be a complicating factor with PANDAS because both are messing with the perceived amount of dopamine. If it has been < 30 days since your child has been on a stable dose of Prozac, you'll have to wait it out to see what the new baseline is.

 

Prozac doesn't exactly interfere with treating PANDAS, but rather Prozac and PANDAS are both messing with the same neurotransmitters.

 

Buster

 

Buster,

I hate to admit, I researched about weaning him off of the Prozac. But it never dawned on me that some of what I am seeing could be related to the fact that I am doing that. Can you please explain more to me? Are you saying that because he is still on 10mg of Prozac that it may be interfering with treating the Pandas? I know I read that the Prozac could actually make behaviors worse, that has been my main focus in getting him off of it. And yes he was on 20mg of Prozac during the beginning of first round of antibiotics and I took him down to 10mg. When he finished he still tested positive for strep. We are currently on second round of antibiotics.He has been on 10mg since Dec. 27th.

 

 

There's a lot in your post. I guess the first thing I should say is that we didn't see the impact of the prednisone until 10 days after the burst (i.e. the 14th day from the start). It was a very significant remission of symptoms.

 

You mentioned that you had shifted from 30mg Prozac (2009) down to 10mg (2010). I was wondering when you got down to 10mg. Prozac has a very long half-life and while it is self-weaning the withdrawl can be clouding some things. An item to consider is that it is possible you were getting activation from the Prozac when you were essentially removing the interference with dopamine by treating the PANDAS. I can write more here, but the short question is when were you doing the Prozac withdrawl relative to the Augmentin trial.

 

Buster

[Buster]

Hi Misty,

 

Wow, a lot going on... Let me see if I got it straight...

• at 6, he was diagnosed with everything from ADHD to Tourettes to OCD
  
• at 7, you discovered that he had chronic sinusitus. He had strep throat 5 times. He was hospitalized 3 times (including having tubes added)
  
• at 9, he developed significant ticcing and odd movement disorders
  
• at 12, he has significant fine motor impairment (handwriting), defiant behavioral issues, odd laughter, and is walking on edge of shoes
  

Have you asked him about his walking on edge of shoes? Many kids with OCD do this to avoid too much contact with the floor. It's actually a contamination fear manifesting as a compulsion.

 

Another explanation might be a form of chorea. Another might be a form of dystonia. If he does a pushup against a wall, is his body twisted or symmetric? Can he do a regular pushup?

 

Some of the defiance could be activation from Prozac. The dilated pupils could also be akathesia. Hard to tell from the description. What psych meds is he on now?

 

Of course all the symptoms may just be manifestations of PANDAS.

 

I guess the real question is what do you want your ENT to do? It sounds like you got the prescription for prednisone. You have some concern that the strep may not be gone. You also may also be seeking a longer supply of antibiotics or have a concern that the chronic strep is due to the strep going intracellular.

 

If you really feel the augmentin didn't do anything, I'd suggest switching to azithromycin and seeing if the strep is intracellular. You could always hand him the Kaplan paper http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 that shows how strep can go intracellular and that macrolides can help.

 

Usually doctors don't much like being handed papers... however, you could read through http://www.latitudes.org/forums/index.php?showtopic=6265 and offer to send him any information/papers if he'd like. For ENT folks, they tend to like the strep papers. For immunologists, they tend to like the Kirvan papers.

 

Wishing you the very best and let us know how your visit goes.

 

Buster

 

 

What would you suggest that I take to present to the doctor about PANDAS?