NEW PANDAS MOM UPDATE AND QUESTION

[jacobsmom]

Since my last post about my son who has PANDAS we have had a HUGE development. I decided to test the entire family for strep throat regardless of the fact that we have NO symptoms and the whole family, mom, dad, and sister are positive!!! My PANDAS son remains negative!!! I am very confused. Have all of your PANDAS kids had numerous strep infections? Or have there been any of you who have had a hard time finding the strep? We did decide to test his nose and also analy and are awaiting the results. A question I have is if we can't find an active strep infection then does he really have PANDAS or is it Tourettes? His titers are high, his tics came on suddenly but we haven't found strep in his body. Maybe he has Tourettes and not PANDAS and his titers are high because there is a strep carrier in the family and his body is fighting it off and that is why the high titers. Any comments?

 

We are now all on antibiotics as of yesterday and will re-test after about three weeks off the antibiotic. Great news!!! His physician agreed to profolaxis antibiotics! I don't think doctors are used to seeing joy when someone has a positive strep culture... but we are so perplexed by this PANDAS thing and having strep in the house helped his doc finally agree to long term antibiotics and I am hoping to see an approvement in his behavior and tics.

 

Has anyone tried straight penecilin for thier PANDAS kids. He is on 250 mg twice a day. It seems like a lot of PANDAS kids here on this message board are on the azith. and I asked for that instead but the doc. referenced the study I sent to him from the NIMH and said that there seemed to be better results on penecilin. But 500 mg of azith. a week seems so much better for his body than 500 a day of the penecilin. Any suggestions would help so much!

 

Would anyone consider e-mailing me directly? I have so many questions. Thank you!

Amy

[Chemar]

Hi Amy

what a journey you are on! But as you say, at least now you know about the rest of the family being carriers and can treat accordingly

 

I know one of our PANDAS experienced moms will be able to answer you in detail here, but I just wanted to comment on something, from my limited knowledge on the subject

 

A strep culture is NOT always going to reveal the presence of strep. So just because your child's cultures show neg doesn not mean that he doesnt have strep in his system. The fact that his titres are up means his body is forming those strep antibodies. Strep throat is caused by one of the MANY strains of streptococcus and so that is why, in PANDAS dx, it is the strep titres, not just the cultures, that are the main diagnostic criteria

 

The sudden onset of tics and or OCD symptoms is another very relevant pointer toward a PANDAS dx

[Pandamom]

Hi Amy,

My daughter was diagnosed with Pandas in July. Her symptoms flaired up in February and she has never in her life had a positive strep test - however her titers were 680 in July. She has alot of symptoms other than the tics that are the subject of this discussion board, panic disorder, fear of dying, bedwetting vocal cord disorder and chronic sinus infections. She is beginnng to get depressed as well and I don't know if its a side effect of being ill so long (7months) and losing control of her life or if its something else. She is having such a hard time she has been pulled out of school.

 

Originally in July the doctor started penicillin shots once every three weeks. We would see breakthrough improvements but nothing lasting because the penicillin did not stay in her system. The pediatrician was inclined to go with daily penicillin but I asked for azithromycin to try and save her body from some of the side effects. The pediatrician agreed to start her on azithromicin and began with a 250 mg daily for 10 days which will be followed with 500 mg once a week after that. We are on day six and she still has all her symptoms. I'm still hopeful but I do wonder if it is Pandas since so many other stories here tell of results that were almost immediate.

 

She is also on pexeva for panic disorder, valium for vocal cord disorder and risperdal for tics. I'm hoping to stop the risperdal this week to see how the antibiotic is working.

 

Before I found this website I felt so completely alone with this problem. These discussions have been so beneficial. Feel free to email me if you like tracyl.williams@comcast.net

 

Good luck with your child, Tracy

[ad_ccl]

Hi Jacobsmom,

 

I have read quite a few times that people have had good results with the penicillin. We used amoxycillin once a day for almost 2 years with quite good results, we went off the antibiotics as a trial, our son deteriorated significantly and amoxicillin no longer worked for him when we put him back on it, we tried several other antibotics with limited success and then tried azithromycin with wonderful amazing results. I think doctors prefer the pen/amox - to azithromycin, as I had asked my doctor about azith. quite a few times over the years, it was only used in the end as a last resort.

I just wanted to mention that I have read that strep can remain on toothbrushes and tubes of toothpaste for several days - we now have toothpaste for each member of the family with their name on it, and toothbrushes are cleaned regularly and replaced more often than I used to. When we swabbed the whole family my youngest was positive for strep with no symtpoms - so I am trying to be extra cautious around spreading germs.

 

Good Luck

 

Pandamom - Sorry you have not seen significant changes by day 6 - how are things now?

[jacobsmom]

I am very confused about one thing...does PANDAS ever go away or does it stay with them forever, do the antibiotics get rid of it sometimes? It sounds like from what I have read that the kids who try antibiotics eventually grow immune to them and once they are off they are much worse off than before the antibiotics. This is such a difficult thing to understand. I had read that Dr. Swedo was hopeful that there would be a cure for PANDAS but that was about 1996 since then the info I have been reading isn't so hopeful. I am really confused. Thanks for any info. Is your son still on the azith? If not how did he do once off of it? Thank you so much!!!

Amy

[ad_ccl]

Hi there,

 

He is still on azith - we started in late August so it has not been too long but the results are amazing. I think kids DO outgrow PANDAS, when their immune systems develop - in hindsight we now think my older brother had PANDAS, and he outgrew it during his teenage years, my aunt had rheumatic fever, which is something that is outgrown as well. My thoughts on azithromycin are that the drug is not just preventing further strep infections but is acting as an immuno-modulator as well, dampening the immune response perhaps in terms of the strep titers acting up. Also I have read it has anti-inflamatory abilities so I wonder if that is also playing a part. I think there is still so much to learn, and the research is not there yet - in light of the small population affected.

Remember this is an auto-immune disorder so I feel the key is working on the immune system to help it manage, I think our kids immune bucket is overflowing, so we need to remove some of the things they could normally manage - for my son going off milk made such a difference, although he had been drinking piles of milk for years with no symptoms of allergy, once the strep filled up his bucket so to speak so that it was overflowing we had to try to remove all the things that were contributing to his bucket but had not resulted in any symptoms all these years.

 

Remembers also, PANDAS starts with the work pediatric, meaning childhood, so the title alone indicates it is something that affects kids - I 100% believe our kids will outgrow this and our job is to minimize symptoms as best we can while there immune systems are working themselves out.

 

Good Luck - and try to stay positive - I know it is hard at times.

[Pandamom]

Good morning,

 

We just finished day 10 of the azithromycin and still no positive changes. My daughters tics are still there, but very light and over the last week her ocd seems to have gotten alot worse, prompting the psychiatrist to change her meds to address ocd and depression. I holding out hope that once we start the 500 mg azith on Sundays we will see some improvement.

 

keep you posted Tracy

[ad_ccl]

are you using probiotics along with the antibiotics? My son's tics increase early on after a long run of antibiotics and we realized it was due to yeast - once we battled the yeast the tics went away. We religiously use probiotics now to keep everything in check.

[jacobsmom]

I am sorry to hear that her OCD has gotten worse. Hopefully with the 500 mg once a week on a regular basis things will improve. We are ending our first week on theraputic penicilin and things are basically the same as when we started. Last night he had a rage attack and threw two marbles hard at me because a friend couldn't come over to play then he went into a 15 minute crying and screaming attack and his ticcing hasn't changed a bit. Sigh. This time last year and all of his life before that he wouldn't have so much as shrugged his shoulders at that little change in his plans. I hope that next week is much different for both of our kids.