[CAM scores in today]

Hey - another N Carolinian! There are quite a few of us here. What part of the state do you live in? We are in the Charlotte area. We are losing our Neurologist here, but a few of us are exploring another office - and there is a good immunologist here. Dr. L is also asking a Cary Neurologist if he is willing to work with us, so that may be another option. Let us know approx where you are. We love Dr. Latimer, so I can't recommend her enough.

 

We live in the Raleigh area - specifically the sandhills....right between Raleigh and Pinehurst. Please let me know about the Cary Neurologist. That would be great to be able to only have to go 30 minutes for treatment. When you say that she is asking if he is willing to work with you - work with you to do what? Medication management? I would be happy to just find someone who believes me and puts weight on the Cunningham scores.!!

[CAM scores in today]

I received my dd(10)'s CAM scores today - 163. I am happy to have confirmation that I have not been imagining this for the past 4 years, however, am sad to know the road that is ahead of me.

This past week dd was exposed to the flu via my son. I called her pediatrician to beg for Tamiflu so she would not have to go through full blown flu, because we all know what viruses like this do to our PANDAS kids. He said "No, only if she has an underlying medical condition." Excuse me? SHE DOES!!!! We were not able to get the Tamiflu for her, and she ended up with full blown flu. Even now that she is recovered, her grunting tics have increased from occasional to CONSTANT. There is not a waking moment that she is not grunting.

I have read on this forum about Dr. L and Dr. K......I live in NC and will have to make a drive no matter what. Do any of you have any profound opinions one way or the other? I don't necessarily want to go right for the PEX, as we have not even tried a full course of antibiotics or steriods yet (I've been to so many doctors here - none of which will give me anything).

I also have not gotten the other results back from Cunningham yet. Only the Cam scores. Does anyone know if the Cam score is the most important score out of the whole batch?

Another scary thing is that dd is going through puberty - has not had her period yet, but other things are happening. I feel like I'm in a race against time.

Kim

[Why would you have a setback 20 d post IVIG?]

Please explain the dog issue to me - can dogs be a strep carrier??? My dd's issues started the year we got our dog......explain what you mean so I can make sure I'm covering all my bases.

 

 

 

I completely agree about the loss of your own brain. Mine isn't functioning as well either.

 

 

I do understnad your question and yes, she is definitely better even though her symptoms have returned. The rages are very short and the behaviors are manageable, they are all just there. And they take so much effort and energy to manage.

 

We do have a dog and did have him tested. He was negative. I also had some abx that I never used on DD that I gave to the dog just in case. I'm wondering if when we were at the ped's for our regular consultation if she was exposed to strep.

[Pandas exacerbated by Viruses?]

Good idea - I think I'll ask her teacher to let me know when someone is out sick - I can then compare it to see if she is worse during those times.

 

Hi all-

 

My dd Julia, has had three mini pandas recurrences when exposed to strep at school.

 

I say mini, because they have been short-lived (from 4 days to two weeks) and not as bad as original (mostly anxiety, irritability, fatigue, less of an appetite, and a small increase in ocd issues).

 

I have politely asked all families in her and her sister's class to let me know if they are diagnosed with strep.

 

This is one thing that makes pandas so rough. There have already been 3 cases of strep (that I know of) in her class this year!

[Pandas exacerbated by Viruses?]

Does anyone here experience intense exacerbation of PANDAS symptoms when their PANDAS child comes into contact with a person in the household with a VIRUS - but the PANDAS child never catches the virus? Anyone have any comments on this or any research?

 

We have yet to be diagnosed with Pandas, but I am certain my dd has it. She developed tics about 3 months ago and right now (as of today) that is the only thing that she is experiencing. She had horrible OCD for the past year, on and off. When she was diagnosed with Strep a few months ago, tics started and my ped. prescribed Amox. for 30 days. We saw major change in her after 3 days on antibiotics, but she went down again - we have 3 children and all of them were sick for most of the 30 days. After they got better so did she. Tics are still present when there is no sickness in the house. Last week my other daughter had a virus (not strep) and my Pandas/OCD daughter went into unbelievable rages - I videotaped one so that I can show her ped. She had a great increase in OCD symptoms and her tics increased. I wish doctors would put more weight on the Pandas issue - it is REAL!!!!

 

My dd7 has exacerbations whenever she is around someone else who is sick and it doesn't have to be with a strep infection. I had bronchitis in June and she had severe Pandas symptoms for three days while I was sick. Her brother had strep two weeks ago and she was fine when she was not around him but anytime she was near him-within 15 minutes she would start having anger issues that would last the rest of the day. I'm not kidding--she spent the entire day with me and was happy, laughing, having a great time and then brother came home around 5 pm and she went down the tube immediately. Last weekend she was playing with all the neighbor kids and kept having some anger issues & emotional meltdowns. I was ready to go outside and ask if anyone had a sore throat but never did. On the following Monday, one of the little boys was absent from school for three days. She never picked up any of these infections.

[Pandas exacerbated by Viruses?]

Does anyone here experience intense exacerbation of PANDAS symptoms when their PANDAS child comes into contact with a person in the household with a VIRUS - but the PANDAS child never catches the virus? Anyone have any comments on this or any research?

[New to Pandas]

If I order the kit and have the test done - do they send the results to me? What should I be looking for? I guess my main question is what is the test looking for? Also - is there any way to tell if there is swelling in the brain by using an MRI or CT scan to definitely confirm a diagnosis??

 

 

 

I am so sorry.

 

I can tell you that, to me, it seems 5 or 6 is a huge time of onset for these kids.

 

My daughter had a ton of clothing issues. It got to the point where she would only wear pajamas to school. She wet the bed at night. She also restricted her eating. Many similairities to your daughter.

 

There are a few other parents on this board from NC- maybe they can help you with doctors. You may (if it is at all possible) end up coming to DC to see Dr Latimer. She definately likes the Cunningham test, so my advice would be to get that done immediately. If you email them today for a kit, you could get a blood draw early next week from a local lab or doc, and have the results a couple of weeks after that.

 

In the meantime, maybe someone can recommend a local doc to get you started on antibiotics....

[New to Pandas]

My story- well it spans a period of 4 years, so I'll try to make it brief ..... My dd - now 10, started showing signs of OCD in 1st grade after an episode of a very bad sore throat. I did not piece these pieces together until recently. I pulled her medical records and was astonished to see that the onset of this bizarre behavior started around the time of this sore throat incident. The ped. was so sure it was strep that he administered antibiotics despite a negative throat culture being sure that it was going to culture positive overnight. It never did culture positive - therein lies my struggle with getting a Dr. to diagnose this. She has been bedwetting consistently overnight - every night. She has never been potty trained at night. She has been clinically diagnosed (last year) with OCD. Her OCD symptoms started in 1st grade and waxed and waned to the point that we did not get them checked out -thought they were stages in development as they were not too severe. Just last year her OCD became debilitating and we had to go to psych. to have her seen and diagnosed. She has an extreme sensitivity to her pants and how they touch her stomach. She has been diagnosed with "borderline ADHD" due to some focusing issues and impulsivity. She was put on SSRI's which did absolutely NO good - they made her WORSE. She failed the 4th grade and is having to repeat it this year because of the OCD. She has developed Tics - she grunts and performs movements with her wrists that I'm not sure she is always aware that she is doing. She has frequent rages - one of which I got on videotape just yesterday. When she is in a rage, she speaks without any coherence. She is afraid of getting fat and is experiencing some food obsessions. She has only had one instance of separation anxiety that I remember last year and it lasted for several weeks. She currently is afraid of the dark and has to have the light on to go to sleep. Her psyh. totally dismissed PANDAS. I took her to her ped. who believes that PANDAS exists but will not treat her without something concrete, such as a positive strep blood test or throat culture. She did go to him a couple of months ago and she DID test positive for strep. He was able to give her a 30 day course of Amoxicillan, which helped for about 3 or 4 days -all symptoms gone, but then it returned, although less in severity. Right now, we mainly experience rages, bedwetting, tics, movements, sensitivity and some OCD. Not as bad, but still there. I live in the Raleigh /Durham triangle area of N.C. - any help would be appreciated!!!! I feel like no one is listening!!!!

 

 

 

 

 

 

Hi, welcome, and I am sorry you are struggling with pandas. There are many helpful parents on this board, that I am sure will respond to your post.

 

I can tell you what I know.

 

There, unfortunately, is no standard test to determine pandas. Titers definately do not give you the answer, they have no relation to pandas, actually. Strep titers are done to indicate if there has been a strep infection in the past. They are high in some, and low in other pandas patients.

 

Pandas is really a clinical diagnosis. It is based on a child's symptoms, typically looking at a sudden onset of psychiatric and physical issues. These are not limited to, but include: urinary frequency, bedwetting, tics, choreatic movements, ocd, sensory issues, rages, restrictive eating and/or anorexia, anxiety and separation anxiety. In a simple, straightforward pandas case (like my child), there is a sudden onset, with gradual worsening of some (not all) of these issues, coupled with a strep infection at some point. Unfortunately, there are many cases where the onset is slower, less "overnight", and where there is not a documented case of strep. Many/most of our kids manifest strep without the typical sore throat, fever, etc. I think what happens is, at some point they have strep- but that infection may resolve before they are tested, or it is missed with the swab.

 

That is the bad news. Here is the good news:

 

To really figure out what is going on there are some simple things you can do. First (the hardest), is find a decent doctor who will work with you. Tell us where you live... Second, get your child on daily dose antibiotics for at least a month. Many of us on the forum prefer zithromax. This is the only med that will get to the strep if it has gone intracellular. It is very important to completely eradicate the infection. Third, you can give your child a steroid burst (2 weeks of treatment, 2 weeks of tapering off). This will address the brain inflammation. It can be a great diagnostic tool for some, and for others it can jumpstart healing.

 

The last thing, is to have a blood test done by Dr Madeleine Cunningham. She is a researching Dr who has developed a test for anti neuronal antibodies. You can email her for a kit, have blood drawn locally, and send it to her. This should be done in an exacerbation, before steroids.

 

I know it is hard, but the faster you get all of this done, the faster your child can heal.

 

Oh- and please share your story....

[New to Pandas]

Please forgive me if this info is already posted, but we have been struggling with a possible PANDAS diagnosis for several months now. Can someone please tell me - what is the absolute standard for measuring a PANDAS diagnosis? Does my child absolutely HAVE to have elevated AntiBNase Titers and/or a positive throat culture?