Please! Need some advice!

[greenmommy]

About 2 years ago my son was diagnosed with PANDAS. Out of nowhere he started acting totally different, major OCD, separation anxiety, frequent urination, counting...Had him tested for strep and it was positive. Took trying different antibiotics and being on the last one for two rounds to beat the strep.

 

We have had a beautiful 2 years since. He is a joy...so happy. He does have anxiety around his nut allergy. He does not do well in high pressure situations. He is happy though. Enjoys being a child. A treasure!

 

In May we were all sick. My husband and both sons (including PANDAS child) developed white bumps in their mouth that took forever to go away. School got out the first week of June...my son started complaining of a stomach ache. Then he complained of a headache. Then he developed a very sore throat. I took him to pediatrician and she looked at his throat and remarked that it looked "like classic strep throat." The quick test was negative. She went ahead and prescribed penicillin just because of his history and she was so sure it was strep. He did not show any change in behavior (anxiety at that point) but his throat did start to feel better. Then I went back in and asked for a blood test. He had lots of anxiety...reassurance questions at this point. She gave me another prescription for Omniceft and did the blood test. The blood test was negative and the Omniceft (1 round) did not make much a difference like it did last time.

 

Now it is August and we have seen everything get worse. He has horrible anxiety, ocd and rage episodes. He has horrible separation anxiety. It is crazy...in May he was so happy and confident. We have been seeing a psychologist and doing CBT/ERP and we also have seen a pyschiatrist that put him on zoloft. He has been on the zoloft for 2 weeks. He is so pale in the face.

 

What should I do? Right now I think that I am going to call the pediatrician and go through all of this with her. Who is the right Dr here? The negative strep tests threw me off but now I have been reading that especially with the 2nd episode that the test can be negative and that longer durations of antibiotics are needed to see improvement.

 

Please -- any advice you have. I am so worried about him.

 

In peace, Alicia

[thereishope]

My son had a bad setback w/ negative strep test and I was very confused. In hindsight, I think it was caused by an onset of seasonal allergies. A couple weeks after the neg strep test, his eyes were blood shot from allergies. I started dye free Benadryl and an uncanny timliness his behvaior improved as the redness from allergies disappeared. The behaviors can come back even w/ a virus. When he had a simple cold, the OCD and anxiety kicked up a little bit. When I gave him Ibruprofen it subsided. It was like a clock. At the 5 hour mark after giving Ibruprofen, the behavior would start to resurafced. Once the cold went away, the increase in OCD went away.

 

One other thing to mention is my son has residual OCD from having so many episodes of PANDAS in such a short amount of time. He's seen a psychiatrist and psychologist. He is not on any meds.Since he's 5, the psychologist, after 2 parent mtgs and 2 mtgs w/ my osn, decided to hold off on CBT and go with the "program" I had set up on my own. Each week I tackle a new problem. It is working amazing. As his cuts out more OCD the anxiety and mood swings seem to dying down too. The psychiatrist said the ODD we saw was probably a result of the OCD. I htink she was right. He's is sooooo close to baseline, not there yet, but I can see it on the horizon. In my son's case, I think Zoloft (the med she would prescribe him if we didn't see progress) would have made thiings worse. Have you tried various supplements that are suppose to help? I found them on the OC Foundationw ebsite and listed them under "bag of tricks" thread.

 

I also think soemone else on a thread said some SSRI's may react different in PANDAS kids.

[pandas2boys]

About 2 years ago my son was diagnosed with PANDAS. Out of nowhere he started acting totally different, major OCD, separation anxiety, frequent urination, counting...Had him tested for strep and it was positive. Took trying different antibiotics and being on the last one for two rounds to beat the strep.

 

We have had a beautiful 2 years since. He is a joy...so happy. He does have anxiety around his nut allergy. He does not do well in high pressure situations. He is happy though. Enjoys being a child. A treasure!

 

In May we were all sick. My husband and both sons (including PANDAS child) developed white bumps in their mouth that took forever to go away. School got out the first week of June...my son started complaining of a stomach ache. Then he complained of a headache. Then he developed a very sore throat. I took him to pediatrician and she looked at his throat and remarked that it looked "like classic strep throat." The quick test was negative. She went ahead and prescribed penicillin just because of his history and she was so sure it was strep. He did not show any change in behavior (anxiety at that point) but his throat did start to feel better. Then I went back in and asked for a blood test. He had lots of anxiety...reassurance questions at this point. She gave me another prescription for Omniceft and did the blood test. The blood test was negative and the Omniceft (1 round) did not make much a difference like it did last time.

 

Now it is August and we have seen everything get worse. He has horrible anxiety, ocd and rage episodes. He has horrible separation anxiety. It is crazy...in May he was so happy and confident. We have been seeing a psychologist and doing CBT/ERP and we also have seen a pyschiatrist that put him on zoloft. He has been on the zoloft for 2 weeks. He is so pale in the face.

 

What should I do? Right now I think that I am going to call the pediatrician and go through all of this with her. Who is the right Dr here? The negative strep tests threw me off but now I have been reading that especially with the 2nd episode that the test can be negative and that longer durations of antibiotics are needed to see improvement.

 

Please -- any advice you have. I am so worried about him.

 

In peace, Alicia

 

What type of blood test did you do?

[ShaesMom]

Not all kids have elevated titers. However if I were you, I would ask to have them redo the ASO titers and Anti Dnase tests. You can then compare them and see if there are any changes. It sounds like classic Pandas symptoms. Does your doctor believe in Pandas are do they think you are crazy? Many have had success with Azith and some with Augmentin. Can you get your doctor to try a steroid burst?

[greenmommy]

Thank you so much for your responses. I printed out your emails and printed some from the PANDAS network and went to the pediatrician today. We left with a prescription for Cephalexin - 2 tsp 2 times a day for 20 days and Prednisolone 2 tsp 2 times a day for 5 days. She took blood work again. She gave us a recommendation for a neurologist. She also said to continue the zoloft for now because we should not make 2 many changes.

 

Does this sound good???

 

Alicia

 

 

 

 

About 2 years ago my son was diagnosed with PANDAS. Out of nowhere he started acting totally different, major OCD, separation anxiety, frequent urination, counting...Had him tested for strep and it was positive. Took trying different antibiotics and being on the last one for two rounds to beat the strep.

 

We have had a beautiful 2 years since. He is a joy...so happy. He does have anxiety around his nut allergy. He does not do well in high pressure situations. He is happy though. Enjoys being a child. A treasure!

 

In May we were all sick. My husband and both sons (including PANDAS child) developed white bumps in their mouth that took forever to go away. School got out the first week of June...my son started complaining of a stomach ache. Then he complained of a headache. Then he developed a very sore throat. I took him to pediatrician and she looked at his throat and remarked that it looked "like classic strep throat." The quick test was negative. She went ahead and prescribed penicillin just because of his history and she was so sure it was strep. He did not show any change in behavior (anxiety at that point) but his throat did start to feel better. Then I went back in and asked for a blood test. He had lots of anxiety...reassurance questions at this point. She gave me another prescription for Omniceft and did the blood test. The blood test was negative and the Omniceft (1 round) did not make much a difference like it did last time.

 

Now it is August and we have seen everything get worse. He has horrible anxiety, ocd and rage episodes. He has horrible separation anxiety. It is crazy...in May he was so happy and confident. We have been seeing a psychologist and doing CBT/ERP and we also have seen a pyschiatrist that put him on zoloft. He has been on the zoloft for 2 weeks. He is so pale in the face.

 

What should I do? Right now I think that I am going to call the pediatrician and go through all of this with her. Who is the right Dr here? The negative strep tests threw me off but now I have been reading that especially with the 2nd episode that the test can be negative and that longer durations of antibiotics are needed to see improvement.

 

Please -- any advice you have. I am so worried about him.

 

In peace, Alicia

[thereishope]

I understand the stance on the Zoloft. It does take I think 4 weeks (?) to take full effect.So, the psychiatrist will probably tell you the same. As for the steroid burst, it will take a few days for you to see any improvement. A neurologist is a good idea. I don't know much about antibiotics, so I'm never much help with that.Please let us know how he's doing later.

[Guest asaxon]

Thank you so much for your responses. I printed out your emails and printed some from the PANDAS network and went to the pediatrician today. We left with a prescription for Cephalexin - 2 tsp 2 times a day for 20 days and Prednisolone 2 tsp 2 times a day for 5 days. She took blood work again. She gave us a recommendation for a neurologist. She also said to continue the zoloft for now because we should not make 2 many changes.

 

Does this sound good???

 

Alicia

 

Prednisone can take longer than 5 days to begin to help. One pediatric neurologist mentioned on this forum does a 3-4 wk burst. I believe that she feels that the improvement has a better chance of sticking with the longer course. When you think about it, that approach is consistent with how prednisone is used to treat other autoimmune/inflammatory disorders like severe asthma and eczema, and colitis--a steady dose until the symptoms are under control, and then taper down. But more importantly, that is how prednisone is used effectively to treat acute Sydenham's Chorea, whose disease mechanism is considered to be very similar to that of PANDAS.

 

Overall, I get the sense that prednisone bursts are under-utilized as a possible PANDAS treatment. I think that a month-long course of prednisone is probably worth a try before resorting to more invasive therapies like IVIG or plasma exchange. Long-term (months & years) prednisone has bad side effects, but side-effects of short term prednisone use (less than a month) are usually short-lived and not serious.

[michele]

We are doing the three week burst with the taper down method. However, after 12 days my son is still an emotional wreck. He is edgy, cries easily, screams mean things at us, and loses his temper in a huge meltdown at least once a day. Do you think continuing through the three weeks is the right way to go? The Dr. has not responded back to me after she told me to let her know about his progress. It is very hard to take him out of the house because his rage is unpredictable. Then he is on other meds and it makes me wonder if they could be the culprit also. I am at a loss. Of course none of the psychiatrist got back to me either.

 

Also he is having BM issues again where he can't get it out and is soiling himself again multiple times a day. Could the predisone cause constipation? When he goes it is soft but tiny and he can't get the rest out. He goes like 7 times a day and doesn't always make it in time or pieces fall out. He had started smearing his bottom across the carpet and register trying to get it out but I really got after him.

How much of this is behavioral versus not able to control the bowels and the moods? Possible encopresis? I am really confused about diciplining this stuff because I am so irritated by it all. If he does have Aspergers is his typical behaviors?

 

I could give him Mirolax again

Thank you so much for your responses. I printed out your emails and printed some from the PANDAS network and went to the pediatrician today. We left with a prescription for Cephalexin - 2 tsp 2 times a day for 20 days and Prednisolone 2 tsp 2 times a day for 5 days. She took blood work again. She gave us a recommendation for a neurologist. She also said to continue the zoloft for now because we should not make 2 many changes.

 

Does this sound good???

 

Alicia

 

Prednisone can take longer than 5 days to begin to help. One pediatric neurologist mentioned on this forum does a 3-4 wk burst. I believe that she feels that the improvement has a better chance of sticking with the longer course. When you think about it, that approach is consistent with how prednisone is used to treat other autoimmune/inflammatory disorders like severe asthma and eczema, and colitis--a steady dose until the symptoms are under control, and then taper down. But more importantly, that is how prednisone is used effectively to treat acute Sydenham's Chorea, whose disease mechanism is considered to be very similar to that of PANDAS.

 

Overall, I get the sense that prednisone bursts are under-utilized as a possible PANDAS treatment. I think that a month-long course of prednisone is probably worth a try before resorting to more invasive therapies like IVIG or plasma exchange. Long-term (months & years) prednisone has bad side effects, but side-effects of short term prednisone use (less than a month) are usually short-lived and not serious.

[Kayanne]

Prednisone can take longer than 5 days to begin to help. One pediatric neurologist mentioned on this forum does a 3-4 wk burst. I believe that she feels that the improvement has a better chance of sticking with the longer course. When you think about it, that approach is consistent with how prednisone is used to treat other autoimmune/inflammatory disorders like severe asthma and eczema, and colitis--a steady dose until the symptoms are under control, and then taper down. But more importantly, that is how prednisone is used effectively to treat acute Sydenham's Chorea, whose disease mechanism is considered to be very similar to that of PANDAS.

 

Overall, I get the sense that prednisone bursts are under-utilized as a possible PANDAS treatment. I think that a month-long course of prednisone is probably worth a try before resorting to more invasive therapies like IVIG or plasma exchange. Long-term (months & years) prednisone has bad side effects, but side-effects of short term prednisone use (less than a month) are usually short-lived and not serious.

 

I completely agree with you....we used it for six weeks...and the last four weeks it was only 5mg daily...DD6 is almost completely recovered...just some really minor issues now...

 

~Karen

[Guest asaxon]

We are doing the three week burst with the taper down method. However, after 12 days my son is still an emotional wreck. He is edgy, cries easily, screams mean things at us, and loses his temper in a huge meltdown at least once a day. Do you think continuing through the three weeks is the right way to go? ... I am really confused about disciplining this stuff because I am so irritated by it all. If he does have Aspergers is his typical behaviors?

 

I would continue with the burst as directed. The anecdotes vary widely on how long it takes before prednisone takes effect.

 

You should also discipline your child--this is counterintuitive because we all want to cut our sick children as much slack as we can. However, you need to draw the line on his gross and disruptive behavior for the sake of your family. Moreover, in order for any child to feel safe, he needs to feel that there are rules and that his parents are in charge and in control. This is especially true for a child whose world is turned upside-down by his mental illness.

 

Both prednisone and PANDAS can cause rages and mood swings. I assume/hope you have/are getting a full, in-person neurological exam....?

[greenmommy]

Today is Day 5 of the prednisone and Keflex. He is off zoloft. We are seeing some improvement in the behavior.

 

We saw a neurologist yesterday...

 

He said he "sort of believes in PANDAS."

 

But after talking he did give my son a PANDAS diagnosis.

 

He was going to call the pediatrician today. He thinks we should continue with the antibiotic and finish prednisone. Going to look into doing another round.

 

He did a blood test to test titers again and look for Mono.

 

I told him we have seen a little improvement. My son has told me (today and yesterday) that he does not worry the whole day and there are blocks of time where he does not ask questions. And he said that he wants to go to school next week. He told me today that he does not feel like he has to ask me about every worry he has. This is huge compared to where we were last week.

 

I called pediatrician for another round and did not get a call back...will push harder tomorrow.

 

For those of you that had good results on the steroids...how did you start to notice the changes in behavior. Is it a gradual change? Gets a little better everyday??

 

Thanks so much...

 

 

 

 

 

 

 

 

 

 

 

 

 

Prednisone can take longer than 5 days to begin to help. One pediatric neurologist mentioned on this forum does a 3-4 wk burst. I believe that she feels that the improvement has a better chance of sticking with the longer course. When you think about it, that approach is consistent with how prednisone is used to treat other autoimmune/inflammatory disorders like severe asthma and eczema, and colitis--a steady dose until the symptoms are under control, and then taper down. But more importantly, that is how prednisone is used effectively to treat acute Sydenham's Chorea, whose disease mechanism is considered to be very similar to that of PANDAS.

 

Overall, I get the sense that prednisone bursts are under-utilized as a possible PANDAS treatment. I think that a month-long course of prednisone is probably worth a try before resorting to more invasive therapies like IVIG or plasma exchange. Long-term (months & years) prednisone has bad side effects, but side-effects of short term prednisone use (less than a month) are usually short-lived and not serious.

 

I completely agree with you....we used it for six weeks...and the last four weeks it was only 5mg daily...DD6 is almost completely recovered...just some really minor issues now...

 

~Karen

[Buster]

In terms of prednisone, in our case we did a 6 day burst and it wasn't until the 10th day post-pred that we saw a noticable difference. I suppose looking back, she had better mood, but on the 10th day, her basic symptoms disappeared and she was doing things (like talking to adults) that she hadn't done in years. This lasted 4 days and then back we went to before prednisone behavior.

 

Not sure what to tell you. 10 days is an awfully long time to think that it is causal, but we have no other explanation.

 

Regards,

 

Buster

 

Today is Day 5 of the prednisone and Keflex. He is off zoloft. We are seeing some improvement in the behavior.

 

We saw a neurologist yesterday...

 

He said he "sort of believes in PANDAS."

 

But after talking he did give my son a PANDAS diagnosis.

 

He was going to call the pediatrician today. He thinks we should continue with the antibiotic and finish prednisone. Going to look into doing another round.

 

He did a blood test to test titers again and look for Mono.

 

I told him we have seen a little improvement. My son has told me (today and yesterday) that he does not worry the whole day and there are blocks of time where he does not ask questions. And he said that he wants to go to school next week. He told me today that he does not feel like he has to ask me about every worry he has. This is huge compared to where we were last week.

 

I called pediatrician for another round and did not get a call back...will push harder tomorrow.

 

For those of you that had good results on the steroids...how did you start to notice the changes in behavior. Is it a gradual change? Gets a little better everyday??

 

Thanks so much...

 

 

 

 

 

 

 

 

 

 

 

 

 

Prednisone can take longer than 5 days to begin to help. One pediatric neurologist mentioned on this forum does a 3-4 wk burst. I believe that she feels that the improvement has a better chance of sticking with the longer course. When you think about it, that approach is consistent with how prednisone is used to treat other autoimmune/inflammatory disorders like severe asthma and eczema, and colitis--a steady dose until the symptoms are under control, and then taper down. But more importantly, that is how prednisone is used effectively to treat acute Sydenham's Chorea, whose disease mechanism is considered to be very similar to that of PANDAS.

 

Overall, I get the sense that prednisone bursts are under-utilized as a possible PANDAS treatment. I think that a month-long course of prednisone is probably worth a try before resorting to more invasive therapies like IVIG or plasma exchange. Long-term (months & years) prednisone has bad side effects, but side-effects of short term prednisone use (less than a month) are usually short-lived and not serious.

 

I completely agree with you....we used it for six weeks...and the last four weeks it was only 5mg daily...DD6 is almost completely recovered...just some really minor issues now...

 

~Karen

[T_Mom]

In our case, the first time our d was in the midst of a severe episode she took Prednisone as a "burst" for a total of 7 days and then tapered it down over the next 4 days (40mg for 5 days, then 30mg for 2 days, then 10 for 2 days, and 5mg for 2 days to taper.) She had a sudden and dramatic response on day # 20 (counting from the first day of Prednisone) -- which was 10 days after the last Prednisone pill was given.

 

Dr. K. had told us that it could take up to 3 weeks to see the effects of Prednisone in an older child. He was right. He also said he had not seen the effects last more than 3 months. Our d was 10.

 

She was essentially "clear" of OCD and tics until she caught a cold about two months later.

 

Take care,

TMom

[greenmommy]

Hello everyone - Just wanted to send an update...

 

See my first post to this topic...

 

I went back to the pediatrician and she put him on prednisone (7 days) and Keflex (20 days).

 

On Day 4 we saw a drop in he rage...less reassurance questions...happier...some smiles...Day 5...better...Day 6...even better...now Day 19...Great! No rage in about 7 days. No questions in about 4 days. Also - HE WENT TO SCHOOL THIS WEEK!!!!!! He has not been out of the same room as me all summer!

 

The keflex ends tomorrow...Going to infectious disease on Monday. They told me last time that they would help me if he got PANDAS again - so I am hoping that they will. The neurologist this week said that his throat is red and his glands are still swolen. Not sure that we have beat the infection. Gonna have to be on my game on Monday at Infectious disease. I am nervous that this all going to come back once Keflex is done...

 

Any thoughts or anything??? Any info sheets I should take to infectious disease?

 

Thank you for all you share. It is so hard ....

 

In peace,

Alicia

 

 

 

 

 

 

 

 

 

 

 

 

About 2 years ago my son was diagnosed with PANDAS. Out of nowhere he started acting totally different, major OCD, separation anxiety, frequent urination, counting...Had him tested for strep and it was positive. Took trying different antibiotics and being on the last one for two rounds to beat the strep.

 

We have had a beautiful 2 years since. He is a joy...so happy. He does have anxiety around his nut allergy. He does not do well in high pressure situations. He is happy though. Enjoys being a child. A treasure!

 

In May we were all sick. My husband and both sons (including PANDAS child) developed white bumps in their mouth that took forever to go away. School got out the first week of June...my son started complaining of a stomach ache. Then he complained of a headache. Then he developed a very sore throat. I took him to pediatrician and she looked at his throat and remarked that it looked "like classic strep throat." The quick test was negative. She went ahead and prescribed penicillin just because of his history and she was so sure it was strep. He did not show any change in behavior (anxiety at that point) but his throat did start to feel better. Then I went back in and asked for a blood test. He had lots of anxiety...reassurance questions at this point. She gave me another prescription for Omniceft and did the blood test. The blood test was negative and the Omniceft (1 round) did not make much a difference like it did last time.

 

Now it is August and we have seen everything get worse. He has horrible anxiety, ocd and rage episodes. He has horrible separation anxiety. It is crazy...in May he was so happy and confident. We have been seeing a psychologist and doing CBT/ERP and we also have seen a pyschiatrist that put him on zoloft. He has been on the zoloft for 2 weeks. He is so pale in the face.

 

What should I do? Right now I think that I am going to call the pediatrician and go through all of this with her. Who is the right Dr here? The negative strep tests threw me off but now I have been reading that especially with the 2nd episode that the test can be negative and that longer durations of antibiotics are needed to see improvement.

 

Please -- any advice you have. I am so worried about him.

 

In peace, Alicia

[Kayanne]

I'm really glad your son is doing better!

 

I would try to push for a prophalactic antibiotic...as asaxon posted in this thread, PANDAS is considered to be very similar to Sydenham Chorea and RF---they call for prophalactics. It really seems as if your pediatrician is being very helpful if the ID specialist won't do that then, I would ask your pediatrician.