9 year old son with PANDAS on Cefdinir

[Alex]

Hi all, I am a new member here. I have been reading the posts for a couple of weeks and have learned at great deal about PANDAS and felt that it was not fair to gain so much from the discussions without adding our own story.

 

My son was 9 years, 8 months old in early April when he developed a fever/sore throat that persisted for five days. Did the quick strep test and it came up negative. On the fifth day of the fever, my son, who up to that point would maybe urinated three times a day, began going approx twice per hour and would wake frequently at night to go. He also began having a frequent dry cough, that a psychiatrist later identified as a TIC. Additionally he started having extreme reactions to minor issues. An example was a half hour crying and screaming fit over being asked to put his book down while at the dinner table. These behaviors continued for over a month with no other symptoms that we were aware of.

 

About a month later, on the weekend of May 9, 10 we noticed a few odd checking behaviors but didn't think much. On the night of May 11 he went into the bathroom before bed and spent the next twenty minutes lifting the toilet lid and staring into the toilet over and over, looking down drains, behind shower curtain, looking up and down the trim on the doors, etc. Also got out of bed repeatedly to rub his bedpost, look behind bed, etc. He did this four more times that night when he woke to urinate.

 

We brought him to our pediatrician the next day. To what we realize now is her great credit, she took note of the fever/sore throat the previous month and said she suspected PANDAS. She had blood drawn for the ASO test which when it came back a few days later, showed elevated antibodies indicating a recent strep infection. She also put him on a five day course of Zithromax.

 

My son showed marked improvement after three days but still had some symptoms. On the 8th day after starting Zith, three days after stopping, the behaviors returned full force. The Pediatrician put him on Cefdinir, 7ml once per day of the 250mg/5ml solution. So he is getting about 350 mg of the Cefdinr per day. He has shown improvement but still doing some checking before bed and when he wakes up at night, and is still urinating and coughing at the same level.

 

While this was going on we had an appt with a Pediatric Psychiatrist who believes in PANDAS and used to have an office next to Dr. Sweedo. Although she believes in PANDAS, she follows the NIMH guidelines, a course of antibiotics if the child tests positive for strep along with Cognitive Behavior Therapy, and possible psych meds if things don't improve.

 

We had a great conversation with Beth Maloney, the women who wrote a book called "Saving Sammy", which is coming out this fall ,about her sons battle with PANDAS. Her website is www.savingsammy.net if interested. Sounds like he went undiagnosed for several years. When diagnosed he was prescribed a high dose of Augmentin for a month with a continuing lower dose after that. I believe he was post puberty when he took the Augmentin. I believe he had a few ups and downs after, but is now, according to Beth, 100% recovered, no OCD or TICS and is starting college in the Fall.

 

We made an appt with the psychiatrist who treated her son, an OCD specialist out of Mass General named Dr. Geller, who also has endorsed her book, which makes me assume that he agrees with the treatment Beth describes in the book. He is only excepting patients in his private practice which isn't cheap and doesn't do insurance. You do get a receipt for payment which shows the diagnosis codes and we believe our insurance, military, is going to cover. So far all we have done is a phone interview with one of his assistants. He is supposed to get back to us soon to schedule an appt.

 

I have also touched base with Dr. K out of Web Pediatrics in Illinois. In our correspondence he said he believes that antibiotics are a short term fix at best and that if it is PANDAS than IVIG is the way to go. Going to set up a phone consultation with him ASAP.

 

That's all I can think of right now. My questions to you all going forward are these. Has anybody had any luck with Cefdinir? I here a lot about Zithromax but not much about Cefdinir. Also, with IVIG, Dr. K's website claims that it is a cure for many/most but in reading the posts here I see a lot of mixed results. Anybody know the statistics?

 

Thank you all in advance. Alex

[Alex]

Hi all. I mistated the antibiotic dose for Beth Maloney's son. Worried Dad had it in one of his posts. It was 2000mg of Augmentin a day for a year and then 1000mg a day for the next three years. Alex

[Lisa1971]

Hi Alex,

 

My son Alex has been on Cefdinir (Omnicef) prophalactically for about 6 weeks now with tremendous results...he's on 1/2 tsp 2x per day as he was diagnosed with PANDAS but on the very low end of the spectrum. It took about 3 weeks but his tics have pretty much completely disappeared...once in a while I see something (finger wiggle or elbow bump)...but it is really really really rare in the past two weeks...

 

Our pediactric neurologist is keeping him on this until August at which time we will switch to something else simply to stave off any resistance issues...

 

Hope this helps

-Lisa

[michele]

Hey Alex thanks for posting your information here. It sounds like you found out alot about PANDAS in a quick period of time. Lucky for you you were able to find some good Dr's who were knowledgeable and willing to help out your son. Many of us are not so lucky. Ohio is one of those states where the Dr's are still not beleieving in PANDAS being a seperate disorder then tourettes and ocd and aspergers. I have already went to Florida for a PANDAS Dr. and probably will be going to Dr. latimer in MD this summer with my son.

 

Yes we use Omnicef /cefdinir. My son has been on it for two years. We started with pen vk and the augmentin but only omnicef stopped the compulsion urination and rituals you are describing. However sorry to tell you my son is having alot of bowel issues right now which I don't know what is causing it the antibiotic 300 mg a day, the other psych meds abilify and celexa or the PANDAS. He messes his pants daily and grabs at his bottom alot. My son's been pretty stable on the Omnicef. He has never had a major exacerbation while using it but some minor ones with the short fuse, and obsessive thoughts and tics verbal and motor tics. I have not gotten the Azith many post as being so wonderful because Dr's in OH don't want to use it. I have considered buying it from Canada though.

 

Please post what you make out at the new Dr's. We have seen many and had good luck with few. Right now my guy is stable on the celexa and abilify and much less agitated then before and less obsessive. His symptoms have been going on for six years which seems like a lifetime and is since he is only seven. Each episode seems to last about eight weeks and he is less back to baseline with reoccuring episodes. The sooner you get the treatment the better results you should see. We went for many years with nothing not even antibiotics unless he was positive for strep or ear infections.

 

Glad to hear your story,

Michele

Hi all. I mistated the antibiotic dose for Beth Maloney's son. Worried Dad had it in one of his posts. It was 2000mg of Augmentin a day for a year and then 1000mg a day for the next three years. Alex

[bronxmom2]

Hi, welcome to the board! It's been REALLY REALLY useful for me.

 

My son also takes Cefdinir-- this is the antibiotic that first resulted in dramatically improved behavior and caused my discovery of PANDAS. He has taken a treatment dose of Cefdinir since Dec. 1... with a few breaks when the pediatrician insisted that I switch him to Amoxicillin, and I had to watch him fall apart again. Cefdinir seems to keep him stable, so I am sticking with it for now... I am tempted to try Zithromax, but, like I said, Cefdinir works for us... I figure I can try Zithromax if Cefdinir stops working-- though my reasoning might be all off on that one.

[EAMom]

Hi Alex,

welcome! It's great that you got a diagnosis so quickly! That is a great start. What part of the country are you from? apparently not Ohio if you were able to get Azith. (sorry Michele!)

 

I'm curious, did your doc do a throat culture on May 12 or just the titers? If he didn't, I bet it would have been positive. Also, lots of times the 48-72 hour culture will be positive if the rapid is negative.

 

Also, if you want to learn about some of the newer science surrounding PANDAS check out this post by Buster. http://www.latitudes.org/forums/index.php?showtopic=4785

 

How long has your son been on the omicef? Is you ped willing to keep him on it longer term?

 

Now for a brief vent on the NIMH website:

 

The NIMH guidelines are not based on science. They are based on politics. There are no studies to show that CBT or psych. drugs are effective in PANDAS kids (ocd tics etc) yet this is what they recommend. They recommend against prophylactic antibiotics and IVIG yet their own studies have shown that these treatments are helpful. They say we should wait for more studies to back up the first studies, yet they have no plans on running future studies. NIMH recommends treating PANDAS ocd/tics like any other case of ocd/tics. Unfortunately, our experience (of those on this forum) and Dr. Cunningham's research (on CaM kinase II, anti-neural anti-bodies) really show that these are 2 distinct entities (PANDAS ocd/tics vs. non-PANDAS ocd/tics). I truly believe the NIMH website is doing more harm than good. Even Sue Swedo said (in her DAN! talk) that prophylactic antibiotics are very useful in PANDAS.

[Alex]

EAMom, thanks for all the great info you have provided on the board.

 

To answer your question, we live in Maine up the coast from Portland and go to what we think is a very good pediatric practice. When we brought my son in on May 12 the doc just tested the titers. At the time we knew nothing about PANDAS so weren't in a position to ask any informed questions. My son has been on the Cefdinir now for 13 days. His symptoms are greatly reduced. Very few tics. Still urinating fairly frequently during the day but less, and only once at night. Separation anxiety is much improved. Checking behaviors I would say are 90% reduced but is still doing a little checking in the bathroom, bedroom before bed and if he wakes during the night. The Cefdinir will last another seven days. I haven't spoken to the pediatrician recently. She was annoyed when I spoke to her about a week ago about what the follow on treatment should be. I don't think she believes there should be a follow on treatment. In her initial diagnosis she said he should be 50% better in a week and 100% better in two weeks, end of story. Not sure where that belief came from but it would be nice if it were true.

 

I am scheduled to do a phone conversation with Dr. K several days from now and we have an appt. to see the Pschyiatrist I mentioned in the middle of June. Not sure where to go from here. I imagine we will go through with both appts. and then pick one of the two's course of action.

 

Another question. I've read Dr. Sweedo has been following her PANDAS patients post treatment, some of them for over ten years now. Anybody know how they are doing?. Thanks, Alex

 

Hi Alex,

welcome! It's great that you got a diagnosis so quickly! That is a great start. What part of the country are you from? apparently not Ohio if you were able to get Azith. (sorry Michele!)

 

I'm curious, did your doc do a throat culture on May 12 or just the titers? If he didn't, I bet it would have been positive. Also, lots of times the 48-72 hour culture will be positive if the rapid is negative.

 

Also, if you want to learn about some of the newer science surrounding PANDAS check out this post by Buster. http://www.latitudes.org/forums/index.php?showtopic=4785

 

How long has your son been on the omicef? Is you ped willing to keep him on it longer term?

 

Now for a brief vent on the NIMH website:

 

The NIMH guidelines are not based on science. They are based on politics. There are no studies to show that CBT or psych. drugs are effective in PANDAS kids (ocd tics etc) yet this is what they recommend. They recommend against prophylactic antibiotics and IVIG yet their own studies have shown that these treatments are helpful. They say we should wait for more studies to back up the first studies, yet they have no plans on running future studies. NIMH recommends treating PANDAS ocd/tics like any other case of ocd/tics. Unfortunately, our experience (of those on this forum) and Dr. Cunningham's research (on CaM kinase II, anti-neural anti-bodies) really show that these are 2 distinct entities (PANDAS ocd/tics vs. non-PANDAS ocd/tics). I truly believe the NIMH website is doing more harm than good. Even Sue Swedo said (in her DAN! talk) that prophylactic antibiotics are very useful in PANDAS.

[T_Mom]

Hi Alex,

 

Welcome. I am sorry you have had to find this board but hope it will be helpful, as it has to us--

May I ask where you read that Dr Swedo was still following the PANDAS families? If she is, it would certainly be helpful to know if there is anything that might help us--

 

Take care,

TMom

[EAMom]

To answer your question, we live in Maine up the coast from Portland and go to what we think is a very good pediatric practice. When we brought my son in on May 12 the doc just tested the titers. At the time we knew nothing about PANDAS so weren't in a position to ask any informed questions. My son has been on the Cefdinir now for 13 days. His symptoms are greatly reduced. Very few tics. Still urinating fairly frequently during the day but less, and only once at night. Separation anxiety is much improved. Checking behaviors I would say are 90% reduced but is still doing a little checking in the bathroom, bedroom before bed and if he wakes during the night. The Cefdinir will last another seven days. I haven't spoken to the pediatrician recently. She was annoyed when I spoke to her about a week ago about what the follow on treatment should be. I don't think she believes there should be a follow on treatment. In her initial diagnosis she said he should be 50% better in a week and 100% better in two weeks, end of story. Not sure where that belief came from but it would be nice if it were true.

 

It's great that your son is doing better already. I think that is a good sign. Prophylactic antibiotics are really important for PANDAS kids, to help prevent subsequent episodes. Many find subsequent episodes to be more severe and more difficult to control so it is best to prevent them to the best of your ability. Most peds are very afraid of long term prophylactic abs. Ours was even though my dd's 1st diagnosed episode was so severe it required 6 days of hosp. (malnutrition, acute food refusal, secondary to anorexia nervosa/OCD....pretty scary stuff for a 7.5 year old!) and took 4 different abs (Azith. is what finally really helped us) and over 3 mo. to get under control (things were better once we discovered Azith/advil) once we learned about PANDAS.

 

I don't think Swedo has done a great job (or anything official) of tracking these kids. My understanding (2nd hand, word of mouth) was that they do well if their PANDAS was treated. She didn't specify if "treatment" was IVIG/pex or prophylactic abs.

[michele]

It is just not fair that she and researchers aren't reporting what has worked best as far as long term treatment goes. I mean she has to know especially if she followed the kids. What are they trying to hide? It is like this whole diagnosis is looked at as "not real" in the medical community. What went wrong? Do they question SC or RF? I think Dr's are too wimpy to stand up and say what they see bacause they don't want to be associated with treating a questioned disorder. OH has bad medical malpractice laws and that maybe part of what I have run into with nobody wanting to treat PANDAS. I am really dosappointed in Dr's. especially our pediatrician who won't even step up to help us after six and a half years of dealing with this crap.

To answer your question, we live in Maine up the coast from Portland and go to what we think is a very good pediatric practice. When we brought my son in on May 12 the doc just tested the titers. At the time we knew nothing about PANDAS so weren't in a position to ask any informed questions. My son has been on the Cefdinir now for 13 days. His symptoms are greatly reduced. Very few tics. Still urinating fairly frequently during the day but less, and only once at night. Separation anxiety is much improved. Checking behaviors I would say are 90% reduced but is still doing a little checking in the bathroom, bedroom before bed and if he wakes during the night. The Cefdinir will last another seven days. I haven't spoken to the pediatrician recently. She was annoyed when I spoke to her about a week ago about what the follow on treatment should be. I don't think she believes there should be a follow on treatment. In her initial diagnosis she said he should be 50% better in a week and 100% better in two weeks, end of story. Not sure where that belief came from but it would be nice if it were true.

 

It's great that your son is doing better already. I think that is a good sign. Prophylactic antibiotics are really important for PANDAS kids, to help prevent subsequent episodes. Many find subsequent episodes to be more severe and more difficult to control so it is best to prevent them to the best of your ability. Most peds are very afraid of long term prophylactic abs. Ours was even though my dd's 1st diagnosed episode was so severe it required 6 days of hosp. (malnutrition, acute food refusal, secondary to anorexia nervosa/OCD....pretty scary stuff for a 7.5 year old!) and took 4 different abs (Azith. is what finally really helped us) and over 3 mo. to get under control (things were better once we discovered Azith/advil) once we learned about PANDAS.

 

I don't think Swedo has done a great job (or anything official) of tracking these kids. My understanding (2nd hand, word of mouth) was that they do well if their PANDAS was treated. She didn't specify if "treatment" was IVIG/pex or prophylactic abs.

[Diana]

Hi Alex - I think you're in excellent hands with Dr. K. I am also going to respond to you privately.

 

But for the record- the mixed reviews re: IVIG are really from parents jumping the gun. Most of us have gone not even one year ago. Some of us have some other autoimmune issues that are not clearly articulated here. This lengthens the process of healing.

 

It can take up to one year to get healing completely under control. The young girls generally seem to get resolved in about 3 to 4 months. Those parents are not on Latitudes anymore cuz they're doing very well.

 

Dr. K is now working directly with Swedo and with Beth Latimer at Georgetown Univ. You're in the top notch circle and if anyone can help your son - it'll be these folks. OK - my quick two cents from the peanut gallery.

 

MY SON - is 8 months post-ivig. Had one exacerbation that was quickly squelched in March due to REPEAT DAYS of exposure to strep - family friend, long story. He is fine now. The basic thing is - IVIG calms things down. Maybe, especially the boys, there will be mild reactivity from time to time.........but nothing major. Very manageable. My son's health, demeanor, attitude, etc. - is VASTLY improved post IVIG. At one year (end of August) - I think we'll be doing really really well. And he, compared to most, seems to have been very highly reactive to strep. Anyways, too much to say here. Hope this helps. diana

[EAMom]

Michele,

 

we have our friends Roger Kurlan http://www.latitudes.org/forums/index.php?...art=#entry26571 (see Buster's Oct 5, 2008 post), his pal Singer, and their fellow neurologists to thank for the confusion re PANDAS...and then the NIMH webiste doesn't help matters.

 

I do agree that Swedo really should do a more official long term follow up of these IVIG/Pex kids (vs. kids that didn't have this treatment).

 

It is docs like yours in Ohio, giving parents the run-around, that keep Dr. K. busy. It takes a very determined parent to get their kids appropriately treated for PANDAS. That is the sad thing. We have enough on our hands fighting PANDAS, we shouldn't have to battle the medical community (and insurance companies) as well, begging for antibiotics and IVIG.

[michele]

Diana, Do you think we should be looking at IVIG as a treatment and not as a cure? I know one mom who is using it montly on her Autistic PANDAS child. She said if he misses a dose his symptoms return right away. That the IVIG has greatly improved the PANDAS though. In other diseases IVIG is used as a routine treatment plan like Lupus or RA. Is it too hopeful to think it will be a one time fix? What are the long term statistics on this? Has Sweedo and Dr. K tracked these kids over time and how are they today? Is Latimer doing the same treatment s Dr. K? Is NIMH no longer doing the IVIG and why? Is PEX a better long term solution then IVIG?

 

Just wondering since you are in touch with the "top notch circle".

 

Thanks,

Michele

call me if you'd rather speak off the record. 330-3050503 or private message me.

 

Hi Alex - I think you're in excellent hands with Dr. K. I am also going to respond to you privately.

 

But for the record- the mixed reviews re: IVIG are really from parents jumping the gun. Most of us have gone not even one year ago. Some of us have some other autoimmune issues that are not clearly articulated here. This lengthens the process of healing.

 

It can take up to one year to get healing completely under control. The young girls generally seem to get resolved in about 3 to 4 months. Those parents are not on Latitudes anymore cuz they're doing very well.

 

Dr. K is now working directly with Swedo and with Beth Latimer at Georgetown Univ. You're in the top notch circle and if anyone can help your son - it'll be these folks. OK - my quick two cents from the peanut gallery.

 

MY SON - is 8 months post-ivig. Had one exacerbation that was quickly squelched in March due to REPEAT DAYS of exposure to strep - family friend, long story. He is fine now. The basic thing is - IVIG calms things down. Maybe, especially the boys, there will be mild reactivity from time to time.........but nothing major. Very manageable. My son's health, demeanor, attitude, etc. - is VASTLY improved post IVIG. At one year (end of August) - I think we'll be doing really really well. And he, compared to most, seems to have been very highly reactive to strep. Anyways, too much to say here. Hope this helps. diana

[dcmom]

I just wanted to add a minor bit of info:

 

I have had contact with two of the patients in the original Swedo study. Both were young girls at the time (maybe around age 8). Both recieved PEX. The first mother I spoke to in detail, she felt her daughter was "cured". She never had another exacerbation. That parent kept her 4 children on prophylactic antibiotics untill the daughter went through puberty. The next mother I corresponded with via email. Her daughter had a much rougher journey. I didn't get all the details, but know she ended up having PEX a second time. She continuously had problems until she hit puberty. Now she is doing great!

 

Unfortunately, (which is very hard for me to accept) I think there is no answer. It seems if you can have pex or IVIG, and are lucky enough to keep away anything that might trigger an episode (with antibiotics)- that is your best bet. Maybe this resets your immune system for now, but you still may be genetically or immunolgically prone to a pandas reaction to certain triggers.

 

As a little bit of a control freak, I find not having answers to be SO difficult...

[fallonsholl]

Alex, I know this is a long shot and your son is grown. I hope he is doing well now. I stumbled upon this thread because I was searching if Cefdinir helps with PANDAS. My daughter is 9 and was prescribed this yesterday as they await strep results because she is sick. We did not have a conversation about PANDAS it just happened that she got sick as I was researching this. As I read more from your thread, I saw you live near Portland and I was shocked. That’s where I live. It would be incredible to hear advice from someone who lives in Maine and has walked through this. I have been suspecting PANDAS. She had a major strep infection in infancy and was hospitalized. Since, she has been my only child with horrible separation anxiety, OCD (esp at bed, building long routines that she wants me to participate in) rage and a lengthy struggle at school academically and with speech. I always thought, oh it’s anxiety and OCD but then I stumbled upon PANDAS and thought has she been struggling with this since infancy after that infection so there would be no “sudden onset”. The thing, is she fights it so hard at school and works so hard and is so kind by the time she gets home she is a wreck.

If you are still on here I would love to get some advice about navigating PANDAS, living in Maine. 
 

Thank you! 
Fallon