pandas episodes

[bmom]

I still am working on seeing if my son is PANDAS. I am having his titers tested every few weeks, but I was just wondering what the time frame of episodes last. We are now on week 11 with still quite a few symptoms. They go away for a week and then return with vengance. Does 11 weeks seem too long for a Pandas episode that was treated with antibiotics. He tested negative, me positive, but he was treated anyway to be safe.

[michele]

I have been trying to figure out these PANDAS episodes too for some time now. I don't get titers done very often so I don't know if they are elevated. I just know that around the time someone is sick or has strep throat he seems to get moody and gets symptoms. The symptoms seem to wax and wane. When he would get bad episodes they seemed to last eight to 12 weeks. He always is negative to strep but is on an antibiotic daily. However when on pen vk or amoxil he would get episodes now on omnicef he seems better. I have seen him get minor vocal tics or more emotional at times though and it is weird that it usually the same time someone in his class has strep or we are sick at home. I always think of it as a residual effect after his exposure to strep. 11 weeks seems right to me.

 

Michele

I still am working on seeing if my son is PANDAS. I am having his titers tested every few weeks, but I was just wondering what the time frame of episodes last. We are now on week 11 with still quite a few symptoms. They go away for a week and then return with vengance. Does 11 weeks seem too long for a Pandas episode that was treated with antibiotics. He tested negative, me positive, but he was treated anyway to be safe.

[bmom]

Thanks Michelle. Any info is helpful and I am hoping they go soon!! Has your sons titers ever been elevated? My sons have not yet I had them tested 9 weeks ago when the symptom were in the beginning stages and about a week ago and they were down from where they were before-although both in the normal range. I once had him tested when he had no symptoms and they were half the amount from what they were during symptoms. Did Dr. Murphy base her treatment of him on titer levels?

[faith]

bmom,

11 weeks on antibiotics? or you just did the course of antibiotics and you think his symptoms are still there in spite of taking the course of antibiotics? How are you getting a doc to give this testing so often?

 

Do you moms feel your kids have these flairs in the summer months as well, becaus I would think if it is the PANDAS related then iyou would see this mostly be in the colder months when sore throats and strep is more prevalent? I would think the exposure is way down after winter and not being with classmates?

 

 

Faith

[peglem]

Its my understanding that PANDAS is just a temporal relationship between strep exposure/infections and symptom exacerbations. The reason for checking titers is just to determine if there has been a recent strep infection when the labs come up negative.

 

My daughter has only once had high ASO titers, but never way high (just slightly out of range). But, she's had lots of positive step tests. Her symptoms are immediate (almost) with exsposure to strep and it never seems to go away. Before she was on actual prophilactic antibiotics, she'd do a course of antibiotics and 3-4 days later she'd start with the "streppy" behaviors, test positive, and then get another course of antibiotics. This went on for @ 18 months until we decided to do a tonsillectomy. After that no strep tests were done for awhile, because her throat needed to heal and we thought that would take care of it. The behaviors came back @ a month after the tonsillectomy (maybe sooner, but we thought she was just healing), and continually increased...got really, really bad and finally, she was tested again @ 3months post surgery...and I cried when she was positive again. Now that she's on prophilactic zithromax, (5days on, 7 days off), the streppy behaviors come back around the 5th day off and go away within about 2 hours of her first zith dose. Without antibiotics, it never goes away. But, back before we knew she had this problem with strep, her problems were always worse in the fall and spring....and I think exposure at school is the reason why.

[michele]

Yes he had positive strep tests the first four years before we took daily antibiotics, and his titers were elevated. My other daughter had chronic strep before we removed her tonsils so I think he was exposed to strep alot at home over the years. He seemed to really get worse last year after his kindergarten immunizations. Before that his episodes were about three a year and they each lasted for eight to twelve weeks. In between he really improved. After the immunizations he started in with the tics, OCD, and ADD and it didn't improve and the episodes seem to be getting worse and lasting longer and coming on closer together. Then it seemed he was never symptom free. After the daily antibiotics he improved for awhile. Although after the pen vk he did have episodes. Since the omnicef he has had behaviors but never a full blown episode. Dr. Murphy based his treatment on the patterning of symptoms over time. The peaks and valleys in the episodes, the labs and positive strep tests he did have, all the Dr's reports,her observations of him on the day we were together. She has very extensive questions she asks on her sheets. I agree the winter, spring are worse because of strep at school. However last year he had a bad summer. I don't know if it was the treatments we were trying were causing the immune system to go into overdrive,or the shots. My kids still would get strep in the summer maybe from the public pool. Have others seem their kids get worse after immunizations?

 

Michele

 

 

Michele

Thanks Michelle. Any info is helpful and I am hoping they go soon!! Has your sons titers ever been elevated? My sons have not yet I had them tested 9 weeks ago when the symptom were in the beginning stages and about a week ago and they were down from where they were before-although both in the normal range. I once had him tested when he had no symptoms and they were half the amount from what they were during symptoms. Did Dr. Murphy base her treatment of him on titer levels?

[curiousmom]

We are bringing our daughter in tonight for a follow up visit after she was on the 10 days of zithromax and the 5htp. I'm not sure if I see a real difference in her symptoms. I see she has stopped the blinking (very glad about that!), but she still obsessively worries about things she shouldn't be worrying about, and still clears her throat a lot. She also still has her ritual of checking her toes for lint the minute she comes home from being outside (she's done this since she was about 3). I'm not exactly sure what I should be looking for, is it gradual, or do the symptoms, just stop all at once? Thanks!

[michele]

It is great the tics are gone. Sounds like obsessive compulsive issues. I think the antibiotic reduces the inflammation from the attack on the basal ganglia because the antibodies are not at battle when on the antibiotic. However IMHO the obsessive compulsive stuff that accompanies the PANDAS and the attention and emotional issues will not be completely improved on the antibiotic. It might improve the compulsiveness somewhat but I think you will need more. If you see a naturalpath or biomedical Dr. talk to them about supplements to reduce the symptoms you are experiencing. I ended up with a medical drug Abilify that works well for all the symptoms but not everyone here wants to try that. SSRI drugs and cognitive behavioral therapy are what is recommended from the NIMH for PANDAS. I got tired of playing around with supplements and my son not getting better. We were giving so many supplements and it was very overwhelming trying to get him to take them and to guess what was or was not helping.

 

Michele

We are bringing our daughter in tonight for a follow up visit after she was on the 10 days of zithromax and the 5htp. I'm not sure if I see a real difference in her symptoms. I see she has stopped the blinking (very glad about that!), but she still obsessively worries about things she shouldn't be worrying about, and still clears her throat a lot. She also still has her ritual of checking her toes for lint the minute she comes home from being outside (she's done this since she was about 3). I'm not exactly sure what I should be looking for, is it gradual, or do the symptoms, just stop all at once? Thanks!

[emma1]

Michele, How has everything gone for you with the Abilify? I am confused with the supplements, especially the doses as I am giving to a teen. I would love to stay natural, but every time I think I've got it right, and everything is great, the boat tips! Our doctor is actually recommending Paxil for the OCD. Did anyone recommend that for you (or did they ever recommend another SRRI) -- or do they not do that with little ones.

[michele]

I have read about paxil or prozac helping with the emotional issues. For OCD with tics and sleep issues sometimes they give clonidine or tenex. I thought he'd give us tenex. He said the latest drug they have the best success on with the least side effects is Abilify. It helps ADD, OCD, tics and emotional. My son is doing fine now. He is on the lowest dose 2 mg. I have noticed he is more emotional at times especially before it kicks in. He has some minor vocal tics while watching TV. He is not stuck on fixed ideas anymore or having as many quirky behaviors. His school work is improved because he stays focused. His cracking tics are gone. If you want to private message me I can tell you more. I know they don't like alot of talk about meds here. I am afraid this may be the only alternative for our kids because they have alot of emotional/ neuropsychiatric issues. Check this link out.

http://www.adhd.com.au/PANDAS.htm

 

 

Michele

Michele, How has everything gone for you with the Abilify? I am confused with the supplements, especially the doses as I am giving to a teen. I would love to stay natural, but every time I think I've got it right, and everything is great, the boat tips! Our doctor is actually recommending Paxil for the OCD. Did anyone recommend that for you (or did they ever recommend another SRRI) -- or do they not do that with little ones.

[curiousmom]

Hi Michele - We had our meeting and he increased the 5htp to 50mg from the 25mg she was on. He wants to see her in 3 mos. and then he will do another blood test. If we see her symptoms getting stronger, then we need to bring her in for another strep test. Her ocd behavoir isn't getting in the way of anything as far as I can see. In the meantime, l will be watching closely to see if the increase in the 5htp is helping.

[michele]

What kind of Dr. did you see? I did not know MD's would prescribe 5HTP. I am glad he is watching her so closely. Are you continuing on antibiotics with the 5HTP? What is the 5HTP supposed to help? Please keep me posted on her progress.

 

Michele

Hi Michele - We had our meeting and he increased the 5htp to 50mg from the 25mg she was on. He wants to see her in 3 mos. and then he will do another blood test. If we see her symptoms getting stronger, then we need to bring her in for another strep test. Her ocd behavoir isn't getting in the way of anything as far as I can see. In the meantime, l will be watching closely to see if the increase in the 5htp is helping.

[curiousmom]

Hi Michele,

He is an MD. He has found good results with PANDAS and 5HTP. She isn't taking the antibiotics now, just the 5HTP. Since the increase to 50mg. I see a decrease in her throat clearing too. The 5HTP is taken at night, it has a calming effect. From what I've read it is used to lessen anxiety. What I am really happy about is that he is a Dr. "in the know" about these disorders, and we are really lucky he has been our Dr. for 7 years, way before this even developed. I am sure there are many Dr.s out there who won't go the more natural route and go for heavy prescribtions right off the bat.

[Pudgeo]

Hello, I was looking at all your posts..look at webpediatrics.com and there is a Dr in Chicago who specializes in Pandas Dr Kovacic ..He has some intersting info..Sarah

[bmom]

Thanks Sarah. I am not sure that your post was for me, but if it was, I have spoken with him before and Dr. K seems very knowledgeable on PANDAS and we are considering making the trip to Chicago. The problem is that my son seems to fit PANDAS- I think yet not sure. The titers are never elevated, he never tests positive or has signs of strep. He follows the course of no tics then extreme onset though. The cultures are also negative. I am just not sure he is PANDAS. Dr. K does not believe titers have to be elevated. He will probably be the next doctor we go to if my son keeps following the pattern.