PANDAS syndrome | Imamother

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PANDAS syndrome

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View latest: 24h 48h 72h

ange

Tue, Jul 27 2010, 4:00 pm

Thanks again! I am all out of questions for now but I am sure I'll think of more as we delve into this...

I'm thinking that the windex wouldn't be such an issue for me (I can probably count on my hands the amount of times I use it to clean windows or mirrors). Maybe I need to think about getting my house in shape Smile

It does feel so much more reassuring to know that someone who has gone through it can understand the emotions I am going through now. You just can't really explain to someone how awful it is - they would have no idea still what it means to be walking on eggshells around your own kid, feeling on most days that you have to work hard at actually liking your kid, and the fear that you will be dealing with this forever and ever and ever, etc......

Thanks again!

ange

Tue, Jul 27 2010, 4:03 pm

You see, I thought of another Q already - can you get me contact info for these professionals that you mentioned in your most recent post?

Thanks.

amother

Tue, Jul 27 2010, 6:46 pm

I'm the one with the son who has the titers for pandas. where is this dr shulman located?

so he also has the crying for any little thing that is new since right before the pandas came out but he was ALWAYS a behavior issue. we actually started with the psychologist a couple months before the OCD bec he is a behavior issue in school for a couple years. so we are workign with the shrink for the OCD and she totally believes in this pandas thing but she thinks cognitive behavior therapy can work. its interesting that someone said it won't. when I ask him to stop crying etc he says he can't stop...so he def acknowledges that but he is seriously a mess btwn all the behavior issues he had and now with the OCD on top of it.

the thing is if you ask him if it bothers him that he has to tap things a few times etc he says no. and he wouldnt' lie about it. I really don't think he realizes how odd it is. he is young so he really may not. are all kids with pandas ocd bothered by it?

also the zithromycan didn't work for the 10 days, I understand it can take longer to get rid of all the antibodies, but shoudln't we have seen results right away? we didn't notice any difference, he just had the standard 5 day course.

I'm at a loss at what to do with him. he has so much going on I really feel bad for him. the ocd bothers me but that doesnt' seem to bother him much. the fact that he loses control of his emotions bothers him I think.

ange

Wed, Jul 28 2010, 6:25 am

My son "pre-whatever this is going on" was also a challenging kid - needed a lot of attention, not a great self starter, always bored unless you were engaged 1:1 with him, annoying his younger siblings. But he used to be a happy, if not mischievous kid.

Now something has shifted - all those behaviors are more extreme. I would no longer categorize him as a happy person. He wakes up mad at everything, sulks, walks around picking fights, pushing, shoving, elbowing, complaining just in the normal course of the day. And then if he goes into a rage from there (all he has to do is escalate this permanent bad mood Smile

) the all-out kicking, hitting, banging, punching holes through screen doors, etc, etc. etc. starts. I know it got better during the winter and flared up again pre-summer, but the turn on-off that they speak about with PANDAS does not seem so clear to me. Even when he's not being miserable he's still the type of kid you are always walking on eggshells around. Did anyone else experience this where there was not such a clear on-off of exacerbations?

I am torn between not knowing if I am barking up the wrong tree with possible PANDAS, or just good old Oppositional Defiant Disorder/low frustration tolerance.

If it's medically based, I don't want to waste a year (and $$$$) in the psychologist's office dealing with his behavioral issues if they won't get much better anyway until the medical issue is addressed. On the other hand, I don't want to waste my time (and $$$) and subject him to unneccessary antibiotics, etc. if it's all behaviorally based.

It's like, how much weight do you give to moderatley elevated strep titres (ASO AB 285). Also, I think my doctor is missing another strep indicator - the dnase. Maybe if I get that done then we will have a better idea where we are holding?

amother

Wed, Jul 28 2010, 7:53 pm

I'm the one with the OCD (pandas?) son. from what I understand antibiotics don't always help the disorder. even though my sons escalated OC behaviors are very possibly from pandas it is still treated with a psychologist. its possible your child can be helped with antibiotics if it is pandas, but not all pandas are helped with antibiotics. so either way it helps to see a psychologist ithink. you will need a behavior plan. there are also a million other reasons a kid will act out other than oppositional defiance, many times it stems from something, like ADD, ASD, sensory, aspergers, learning disorders, neurological issues, etc etc the list can go on and on. a psychologist that specializes in childrens behavior shoudl be able to help. and even if it caused by pandas you may still need the behavior plan etc to help your child. the antibiotics alone may not do it.

the problem is there is no clear answer, there is not enough info and studies abt it and it seems each person is different.

pina colada

Thu, Jul 29 2010, 7:14 am

amother wrote:

you dont really have to cook a special way. I just always have fish when not making fleishig supper. I try not to make too many milchig suppers. omitting orange juice/lemon aid is okay, there is so much more to drink. and as far as chocolate. I just make sure to have other nosh in the house and have learned to use carob powder instead of cocoa for brownie cakes, icing etc.
I use basic h from shaklee instead of mr. clean anyways because it bothers my daughter with exzema.
I use windex just not the blue one because that contains amonia but I can use the white, yellow or red.
Dr. schullman does believe that it will eventually go away but the reason to not just ignore it is because tics or behavior can become habit forming that even if the pandas goes away they can still stay with the tics.
chiropracter: Raphael Harbator
Neuropath: Chaya Tilla Brachfeld
and dont feel bad. ask all you want. Been there done that and I know the frustration and anxiety you are going through. I remember at one point being so obsessed with it that I could not focus on anything else!!

which was the one who told you what to take your child off of, which foods and cleaners to avoid?

amother

Thu, Jul 29 2010, 7:20 am

ange wrote:

Thanks for the replies. I have heard of Dr. Schulman and may condier consulting with her if my own ped doesn't know what to do (which I have a feeling of).

My son has always been active, high maintenance...but in the last year we have had several episodes of uncontrollable rages, violent temper tantrums, destructive actions, etc. These times come and go...may last a week of high intensity (an outburst every other day), or he may be his regular challenging self for a while and them boom - he starts to go crazy again. This usually only happens with his parent,s not at school. As for the tics, he has had a persistent cough that lasted a few months, and another annoying habit that also seems to have gone away (I guess it was a tic but almost appears to be something he would do just to annoy). But in terms of classic Pandas symptoms, I see that OCD symptoms are required and I do not notice that in him.

It is mostly the terrible moods, rages...Also, it's hard to remember what he was like before it got extreme, because he is generally a malcontent kid nowadays, even when not in a rage. Always complaining about things not being fair, etc.

Anyway, his blood test came back with mildly elevated strep antibody levels, which may be an indicator of Pandas. His throat culture cam back negative though. And I cannot recall him having had strep in the past year, or more recently when things flared up again.

So I am confused what the anitbody elevation can mean, but the absence of clear pandas symptoms like ocd or being able to pinpoint the triggers.

Thanks for any info you can help me with.

I have treated this very successfully in NY with a homeopath for my daughter. We did it drug free, and with reasonable diet alterations (like removing food coloring and preservatives and reasonably limiting sugary processed foods). We had a problem stemming from antibiotics triggering the episode and the pediatrician telling us to take her off antibiotics asap. A lot of her problem is sensory related, which is also being treated homeopathically. I am also considering occupational therapy to help her and us process things better. We have needed to be very patient but the success of eliminating and transforming the root cause is so rewarding. It's nice to see my daughter conquer this in a real way.

amother

Thu, Jul 29 2010, 7:24 am

amother wrote:

WHo gave u the diet the homiopath?

what do they say the connection is with this stuff and diet? I'm very interested in this. thanks.

amother

Thu, Jul 29 2010, 12:18 pm

all the restrictions were from the neuropath.

amother

Thu, Jul 29 2010, 2:18 pm

amother wrote:

all the restrictions were from the neuropath.

naturopath?
can you provide info?
I actually took this child to dr harbater but she screamed everytime and refused to go back after a short while, bribes and all

capetown

Thu, Jul 29 2010, 4:44 pm

Discovery Health just did a whole hour on PANDA. It was fascinating. The specialist that they interviewed is in the Tristate area. check it out!

amother

Thu, Jul 29 2010, 5:17 pm

CORRECTION sorry the person I went to was a homiopath.
how can I see the discovery health? do you have a link?
thanks

amother

Sat, Aug 07 2010, 9:26 pm

I was one of the above mothers. I am wondering if my dd might have it, I went to doc and got prescr. for blood test. it does NOT say dnase. how do I know its for the right test you are referring to?

amother

Sat, Aug 07 2010, 11:28 pm

your dr should know which antibodies and stuff to test for...

ange

Mon, Aug 09 2010, 9:27 am

amother wrote:

your dr should know which antibodies and stuff to test for...

They should, but very few are actually well-informed about it.

My son had the ASO titers tested, but not the dnaseB...which I think is an omission on the doctor's part.
I am taking him to another doctor for a consult though, so I guess they'll decide if I should have his levels retested.

amother

Tue, Aug 10 2010, 8:56 am

ange wrote:

amother wrote:

your dr should know which antibodies and stuff to test for...

I kn ow this sounds silly but do you think I should call my pedi and ask him to add the dnaseB to the rx?

ange

Wed, Aug 11 2010, 7:03 am

I had the same question myself. But I decided that since I am scheduling a consult with Dr. Schulman (Bklyn) anyway, who seems to be very well-informed and experienced with Pandas, I'll leave it to her to see if it's necessary to have the bloods redrawn.

Good luck

amother

Tue, Nov 16 2010, 7:07 pm

is pandas the same thing as tourrettes? The symptoms sound very similar. I'm wondering if the course of treatment is the same.

ra_mom

Tue, Nov 16 2010, 7:31 pm

amother wrote:

is pandas the same thing as tourrettes? The symptoms sound very similar. I'm wondering if the course of treatment is the same.

They are not the same syndrome.

ChossidMom

Thu, Jan 05 2012, 12:45 am

Hi ladies.
I found this thread when I did a search on PANDAS. There is a little boy whose parents we know, who suddenly stopped talking. This was months ago. PANDAS is suspected but we are in Israel and I think that not too many doctors know about this here. Have you ever heard of a child losing his ability to speak from PANDAS? He is about 4 years old.

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