PANDAS and personality change

[blake]

On the day of onset of Pandas 14 months ago, my son also had a personality change and took on the complete opposite personaility. His tics/involuntary movements and ocd seem typical pandas (except his need for feeding tube and being wheelchair were extreme) and now he has severe OCD but few tics. What doesn't seem typical and what no other doctor understands is his personality change. He used to be a perfectionist, and now he doesn't want to anything right. He used to be upset to lose games and now he plays to lose and very upset to win. He used to be upset to see children cry and would go ask them if they are ok. Now, he steals their toys and laughs when they cry. He laughs when other children get hurt. He won't talk normally now but tells me "My brain won't let me talk". It's not exactly oppositional defiance, but similar in some ways that he'll break house rules and laugh. Ask him the color of the sky and he'll say any color but blue. There are millions of similar instances of answering the opposite/incorrect way. He is a different child.

 

Has ANYONE seen this type of personality change? He does say "My brain is backward" sometimes and he's upset about it. I don't know if that is related. When a steroid burst cured him temporarily last year, his ocd/involuntary movements/opposite personality all disappeared and eventually came back but not so much the involuntary movements.

 

He is completely opposite and it's awful. It seems this new personality has been embedded in him. Anybody seen this at all? I try to google it and I have never read any other child doing this. I assume it pandas related since it all came on together.

 

I know this is a forum for tics, but it is the most active forum for Pandas so I sure hope no one minds me asking this question. I won't ask any more that aren't tics related. We're still trying to get IVIG and I hope it will change his personality back. Is it a form of OCD to be opposite than he was?

 

Thanks so much

[P_Mom]

I wouldn't worry about asking questions that aren't tic related... we all here have many concerns and this is a great place to express them all! Well, to answer your main question, YES! I saw MAJOR personality changes with PANDAS, which is indeed very common in the disorder.

[faith]

Hello Blake,

I think you said they had him on pen for a bit last year, but that did not seem to help? Why havn't they experimented with different types of antibiotics? Was it only the pen? Is your DAN doctor the only expert you have consulted on this? Have you ever contacted Dr. Susan Swedo or Dr. Murphy about your case?

 

Faith

[blake]

When he had a double ear infection last year, I stopped the pen and they put him on zythromax. There was no change in the pandas. Then he went back on the pen. This year, my other son was diagnosed with strep, so they put my pandas son on keflex (might be spelled wrong) as a precaution and his ocd got worse. They switched it after a few days to zythromax and he remained worse until he stopped it. Also, two weeks ago he had bronchitis and they treated it with amoxocillin which didn't have any effect on the pandas. His DAN doctor mentioned IV antibiotics, but didn't think they would work since they have had no effects orally (I think that's his line of thinking). i had never heard of IV antibiotics for pandas, though I think my son had it in the hospital last year to treat his aspiration pneumonia and he went downhill. It's hard to know what has an effect and what is just the "nature of the beast".

 

I think I have read on here that omnicef was the most helpful and he hasn't tried that. Is that right? What is the best antibiotic to knock out some symptoms? I just have that experience with what he has been on.

 

My son's pediatrician did contact Dr. Swedo last year at my request (she wouldn't talk to me) and sent requested info for her review. But her office responded quite rudely that they don't help pandas kids anymore because their research was finished. I haven't tried Dr. Murphy yet.

 

Thanks

[michele]

Try to contact Tanya Murphy. She is a very helpful individual because she does alot of research on tics and tourettes and ADHD plus she still sees patients. I even have emailed her before. Also Dr. K has been suggested in alot of places as being very helpful to kids with PANDAS.

 

Sorry to say but the emotional changes that come over the children after the initial strep attack/episode are more damaging then the tics. Alot of it is the OCD causing them mental confusion. We are ready to try a drug called Abilify for the symptoms of tics, ADHD, and OCD. It has been recommended by the TSA website. Please check out that website because alot of PANDAS is very similar to tourettes. Our neurologist has prescribed the drug. Also we get Omnicef from the immunologist to keep the strep away. It has helped us alot with the tics, and the OCD symptoms. There are so many factors here. The healthy diet also is so important. Also remember to take omega 3's and vitamins or something like monolaurin to help the immune system stay healthy. Let me know if you have questions about Dr. Murphy we flew to see her and she helped us alot.

 

Michele

 

quote name='blake' date='Mar 8 2008, 11:44 AM' post='21207']

When he had a double ear infection last year, I stopped the pen and they put him on zythromax. There was no change in the pandas. Then he went back on the pen. This year, my other son was diagnosed with strep, so they put my pandas son on keflex (might be spelled wrong) as a precaution and his ocd got worse. They switched it after a few days to zythromax and he remained worse until he stopped it. Also, two weeks ago he had bronchitis and they treated it with amoxocillin which didn't have any effect on the pandas. His DAN doctor mentioned IV antibiotics, but didn't think they would work since they have had no effects orally (I think that's his line of thinking). i had never heard of IV antibiotics for pandas, though I think my son had it in the hospital last year to treat his aspiration pneumonia and he went downhill. It's hard to know what has an effect and what is just the "nature of the beast".

 

I think I have read on here that omnicef was the most helpful and he hasn't tried that. Is that right? What is the best antibiotic to knock out some symptoms? I just have that experience with what he has been on.

 

My son's pediatrician did contact Dr. Swedo last year at my request (she wouldn't talk to me) and sent requested info for her review. But her office responded quite rudely that they don't help pandas kids anymore because their research was finished. I haven't tried Dr. Murphy yet.

 

Thanks