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Possible PANDAS-Need Advice


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Hi. I have a 6 year daughter who is has been chronically ill for at least the last year and half. We are visiting a Ped. Rheum. next week to see if she has RF.

 

Her health history is as follows:

 

11/07 Postitive Strep Test

12/07 back at Dr still complaining of sore throat-nothing done

1/08 Separation Anxiety shortly after returning from xmas break. Anxiety had never been an issue before.

1/08 Back at Dr-Mom complains of changes in her behavior. Put on Septra for UTI. Immediate change in behavior

4/08 Back at Dr-Mom complains of changes in behavior-moody, grumpy & aggressive. Put on Septra again--behavior improves

refuses to ride her bike or scooter because it hurts her legs. Doesn't like to walk far.

Constantly complains of sore throat but the dr never sees anything to warrant a strep test.

5/08 Brother positive for strep given antiboitic

6/08 Brother back at dr-given amoxicillian

8/5 Back at dr-Mom complaining of behavior changes, sore throat

12/08 Back at dr again-checked for UTI given Septra again - behavior improves

xmas 08 Classmate positive for strep

1/09 constant complaints of sore throat and tummy ache. Starts refusing to go to activities.

2/09 Behavior gets worse- anxiety sets in, starts lashing out, doesn't want to be away from, moody, grumpy, lethargic, won't play with brother or friends

3/09 Separation anxiety has increased to a level 10. Panic and fear are evident when it is time to go to school. Physically shaking, seems desperate. won't leave parents side, starts sleeping in our bed, clingy, constantly telling us she loves us. Starts complaining it feels like something is in her eye-daily. Exhaustion is normal even after 11 hours of sleep. Looks pale & sick. Power struggles, starts going through the terrible twos again.

 

3/09 Back to doctor--they find nothing wrong with her. Mom insisting something is wrong--she always improves for a short period when on antibiotics and then symptoms reappear a few weeks later.

Rapid strep test negative-- to my knowledge it was not sent to a lab.

Notice handwriting is becoming very sloppy & hard to read. Refuses to play--only sits on the couch. Never wants to leave my side. Will no longer go to the neighbors house.

 

4/09 Back at dr-insist on blood work. ASO titers are 1,100. Started on amox--behavior improves in 12 hours. Anxiety still exsists but is to a level 1-2.

 

 

I have never noticed any tics and i don't know a lot about OCD behaviors. I do know I have spent the last 1 1/2 taking her to dr only because her behavior changes set me off thinking something is wrong. She nevers complains of anything other than the constant sore throat but the dr never sees anything. Actually, she also complains of her legs hurting all the time but we just put it off to growing pains (we didn't know any better). I have told me husband this whole time that I believe she has an infection in her body and the antib. make her feel better for awhile.

 

I feel like I may be onto something with the PANDAS but wonder about her lack of tics & OCD behavior.

 

1) Do any of your children also have RF?

 

2) Has separation anxiety been a major factor?

 

3) Does this sound like PANDAS to you?

 

4) Can anyone give me the name of a Doctor in the Omaha, Nebraska area who believes in PANDAS?

 

5) What type of specialist should I take her too?

 

I would appreciate any help and advice. My husband and I don't know where to turn to at this point.

 

Sam

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My son NEVER had symptoms of strep. We bring him to the dr because of the behavior changes. My dr will do a strep if we ask., regardless of what his throat looks like. It's standard procedure at my peds office to run cultures on neg strep tests. Once, my son's rapid came back neg but the culture was positive. Same with my husband. The two other times, the rapids did come back positive. He's had it 3 times. I would have never suspected the strep if his behavior didn't change.

 

My son has separation anxiety from me, not my husband. So far, all I have ever dealt with was me pediatrician and pediatric neurologist. The neurologist was the one who officially diagnosed him with PANDAS. A lot of Children's Hospitals have websites where you can read the bios of the doctors to try to find a decent match. That's how I found out ours was in PANDAS studies.

 

There are a variety of symptoms with PANDAS. My son never had tics. He had OCD (this time only slight), oppositon to authority, and other things. Many other people would not pick upon his OCD. Even at 5 years old, he's learn to lie and hide it. But I know him and I can see when he's thinking it. Like I can tell he's counting to a certain number in his head but not out loud so I don't say anything.

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Hi Sam,

 

I think your dd sounds exactly like PANDAS.

 

Were abs rx'd in 11/07? (postive strep test) which one?

 

1/08 Back at Dr-Mom complains of changes in her behavior. Put on Septra for UTI. Immediate change in behavior

 

Was a urinalysis or urine culture done when your dd was treated for a UTI? I ask b/c PANDAS kids can present with urinary frequency (acting just like they have a UTI) but urine cultures will be negative. A throat culture (if done) may be positive. From http://www.neurologyreviews.com/apr02/pandas.html

 

“For many of the children, it was an obsessive need to urinate, and they had this elaborate cleaning ritual afterwards. It would seem to peak if they were going to leave the house. These are continent children who had no issues with that before.”

 

A child presenting with complaints of frequent urination might be worked up for a bladder infection or, in the absence of symptoms, urinary frequency. Instead, Dr. Murphy advised, the question that should be asked is whether the throat should be examined and cultured during a visit that doesn’t really seem to be a strep throat visit.

 

I should also warn your that OCD doesn't always present as the classic handwashing. It can be defiance or a child that insists on having things done a certain way. Also, my dd's tics (the last symptom to show up) would be pretty subtle, a throat sound, that wouldn't be obvious to the casual observer.

 

The handwriting decline, separation anxiety, moody, grumpy, stomach aches, not playing (this was a big one when my dd's pandas was severe!), all sound just like PANDAS.

 

Have you seen this website ? http://www.webpediatrics.com/pandas.html several on this forum have had IVIG with Dr. K. He will answer your e-mail (no charge). He also does phone consults (a charge).

 

Shame on your ped for not doing a throat culture when you ask for it. Lots of PANDAS kids have behavior change as their only symptom (no sore throat, no fever) when they get strep.

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I can tell you that my son has been dealing with fatigue and joint aches. He has some tics but more than that it is debilitating fatigue as you describe. I think he had strep back in Dec 08 and was never diagnosed. I have only seen improvement on antibiotics. They check everything with blood work and the only this that was off were his strep titers. Amoxicillan worked for five days and then stopped. Augmenten didn't work. Pushed pediatrician for Zithromax after reading from this site. This improved the pain somewhat and my son started to feel better and tics improved. Unfortunately this stopped when the zith had run its course. I asked for more, rec 2 weeks and we are in week 1 and for a couple a days it seemed like my son was back. But then last 2 days back down. I am trying to hang in there as is my son. This is crazy and confusing. I think PANDAS is much bigger than thought.

 

From what others have said it took some time for them to see improvement. I hope this is the case with us. Some of what you described sounds like us except the seperation anxiety.

 

We did go to a rheumatologist who wasn't to much help, except saying he probably has reactive arthritis due to infection.

 

I am in Buffalo NY. Still on the search for real answers. Kathy

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Hi Sam,

 

I think your dd sounds exactly like PANDAS.

 

Were abs rx'd in 11/07? (postive strep test) which one?

 

1/08 Back at Dr-Mom complains of changes in her behavior. Put on Septra for UTI. Immediate change in behavior

 

Was a urinalysis or urine culture done when your dd was treated for a UTI? I ask b/c PANDAS kids can present with urinary frequency (acting just like they have a UTI) but urine cultures will be negative. A throat culture (if done) may be positive. From http://www.neurologyreviews.com/apr02/pandas.html

 

“For many of the children, it was an obsessive need to urinate, and they had this elaborate cleaning ritual afterwards. It would seem to peak if they were going to leave the house. These are continent children who had no issues with that before.”

 

A child presenting with complaints of frequent urination might be worked up for a bladder infection or, in the absence of symptoms, urinary frequency. Instead, Dr. Murphy advised, the question that should be asked is whether the throat should be examined and cultured during a visit that doesn’t really seem to be a strep throat visit.

 

I should also warn your that OCD doesn't always present as the classic handwashing. It can be defiance or a child that insists on having things done a certain way. Also, my dd's tics (the last symptom to show up) would be pretty subtle, a throat sound, that wouldn't be obvious to the casual observer.

 

The handwriting decline, separation anxiety, moody, grumpy, stomach aches, not playing (this was a big one when my dd's pandas was severe!), all sound just like PANDAS.

 

Have you seen this website ? http://www.webpediatrics.com/pandas.html several on this forum have had IVIG with Dr. K. He will answer your e-mail (no charge). He also does phone consults (a charge).

 

Shame on your ped for not doing a throat culture when you ask for it. Lots of PANDAS kids have behavior change as their only symptom (no sore throat, no fever) when they get strep.

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Shae was put on Omnicef in November of '07.

 

She has a history of chronic UTI's due to impacted bowels. this goes back probably to the fall of 2006. Because of her history, we always test for UTI's. She never complains of usual UTI symptoms (burning, urine frequency, etc)> When I notice a change in her behavior I take her to the dr's office and we always do a urine test which shows traces in the office but comes back clean when they send it off to the lab. She is always put on Septra due to the trace and then I keep her on for the full course because I know her symptoms always seem to improve.

 

She has always complained of her throat feeling weird but never has a fever or other symptoms consist with strep. Our family has a long history of strep once my older son started school. Shae has had it several times before 11/07. We switched dr's in spring '07 and I believe that the other dr always sent the test off to the lab. I don't think my new dr does and I've never thought to insist that they do. We didn't have any idea what we were dealing with until her ASO's came back elevated.

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Good luck Kathy.

 

My house has been like a constant roller coaster ride because of the constant mood changes my dd has. The stress is overwhelming.

 

I have visited with the nurse of the ped. Rheum. we are going to see next week and mentioned PANDAS to her and from her response I have the impression that the dr is not really receptive to the idea.

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Shaesmom-

 

I am so sorry for what you are going through. It sounds exactly like what happened recently with my dd. My pediatrician missed it twice. First time I brought her for possible UTI because of urinary frequency and extreme irritability. After three more weeks of increasiny anxiety, rages, and some ocd-like issues, I brought her to the doctor a second time. I asked for a strep test, because I had read about pandas. The dr sent me home with vaginal cream and suggestion of "positive reinforcement" because of the negative quick strep. A few days later, the culture came back positive, and we started on this pandas journey. (That was in Feb '09).

 

DD immediately improved on a cephalosporin. But regressed a little when her sister had strep the following week. She then went on amoxicillin for two weeks. At that point she was much better, but still very anxious and ocd. A new doctor changed her to zithromax, full dose, and after 20 days it seems to have really helped. We are about to go on a prophylactic dose, and I am of course nervous. He felt pandas kids sometimes need zithromax, if the strep is resistant, is hiding out or has gone intracellular.

 

We did seek therapy from a child psychologist who works with ocd kids. She never worked with pandas before, but felt although it had some things in common with ocd, that it presented very differently.

 

We found a psychiatrist and two neurologists who are interested in pandas. Unfortunately, I live in DC- so I can't recommend someone for you. I would contact as many doctors as you can and ask the receptionist if they see pandas patients before you set an appt. I have been on a few appts that have been a total waste of time. Push for a few weeks of zithromax if you can, from any doctor that will listen. It will get better, and you will get wonderful, thoughtful, compassionate advice from the parents on this board.

 

Best wishes...

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The pediatric immunologist we saw didn't actually know a whole lot about PANDAS but was willing to listen and work with us (we're working on getting IVIG). That's actually been the case with pretty much all the specialists...neurologist (ordered MRI to r/o other problems), confirmed PANDAS, but didn't know much, agreed we should stay on abs (made ped feel better); rheumatologist didn't do much but confirmed that dd should be on Azith. prophylactically (which made our ped feel better). Our child psychiatrist was the most helpful (OCD specialist), in terms of believing in the PANDAS diagnosis and being supportive early on and encouraging the prophylactic abs.

 

It sounds like what you need is a doc that is willing to let you do a longer trial of antibiotics (perhaps something stronger than amoxcillin)...to see what happens to your dd's behavior, and then consider abs long term (and/or IVIG).

 

I would also find a ped who is willing to do throat cultures. It is very helpful if you can document an infection/correlate with behavior change, although your dd's response to abs is very telling.

 

I also recommend checking all family members for strep as well, to check for carriers. Have them do the 72 hour culture if the rapid is neg. It is possible that the Septra is getting the strep but your dd is being re-exposed. The other possiblity of course, is that the Septra isn't really getting the infection and you need a different anti-biotic/longer course of treatment.

 

Would your ped be willing to do a 1-2 mo. trial of antibiotics based on past response to antibiotics and the titers? (I would still do the cultures on everyone before hand, to get a better handle on the situation. A negative strep test doesn't entirely mean there's no strep however, it could be hiding out in the sinuses, for example.) Azith. was the ab that worked for us (the 4th one we tried). It gets intracellular strep and is anti-inflammatory/immune modulating...I think that is why it works well for so many PANDAS kids.

 

Also, have you tried Ibprofen (advil)? I think it helps by decreasing brain inflammation. Many pandas parents notice it helps, not completely, but a noticeable difference. Our immunologist recently had us re-start it and it does help (with hand-writing/mood etc).

 

This is a helpful post to read b-4 you see your doctor http://www.latitudes.org/forums/index.php?showtopic=3911 ....the better informed you are the better off you will be, even if your doc is not well-informed on PANDAS. I believe if you come in well-researched and with all your ducks in order he/she will be more willing to listen to your concerns (well one hopes!).

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I also have urinary symptoms along with strep when I get it, which has been 7 times in the past year. I never actually correlated the two until this past time. We have gotten help from our DAN doctor (defeat autism now). We have an excellent DO who takes insurance...check the DAN list online.

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Hi Shaesmom,

I would STRONGLY urge you to email Dr. K in Chicago. Eamom referred to him and his website in her post. Make sure that you look at the PANDAS case studies page. Your original post is perfect to include in an email to him. He will most likely give you an opinion as to if he thinks your child has PANDAS or not. He is an expert in PANDAS and my son just had IVIG from him a little over a week ago. So far it has been extremely effective. Your daughter's symptoms are VERY suspect for PANDAS. My son's symptoms practically mirror your daughter's. It is EXTREMELY important for your daughter to be on antibiotics prophylactically. The only antibiotic that seemed to help my son with the fatigue, pale appearance, lethargy, etc. was Azithromycin. I am SO SORRY you and dd are going through this. Also, may want to get the whole family cultured for strep carriers.

Christie

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