PANDAS?

[Brenda]

Stephanie has had strep throat 3 times in the past 2 months.She just started the tics a month ago.Could it be PANDAS?How do you diagnose PANDAS?What kind of doctor should I ask?She has an appointment next month with an ENT.

[mommy007]

I was just going to post a question in reference to PANDAS.

My son saw a behavioral pediatrician, who tested him for PANDAS - although his strep test was clear his titer count was 480 - HIGH.

I do believe he has pandas - he was put on antibiotics for 10 days- it made no difference in his symptoms.

What I was going to post:

My son (11) had the flu two weeks ago - he has not been so sick in years - he is medicated on Adderal XR 15mgs - he suffers from tic on meds - he had a few minor and managable tics.

After having the flu - his tics have exploded. He is picking at his face and it looks like he has the chicken pox it is so bad.

I believe it is connected with his recent illness.

Does anybody else notice an increase in symptoms after being ill?

[Dad2Brooke]

brendamccraw2 and mommy007, you both threw me for a loop.

I did some research and found this page:

intramural.nimh.nih.gov/research/pdn/web.htm

it states the following:

General PANDAS Information
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. This term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms typically worsen following strep infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

________

Me again, please follow the above link for more info, and keep us posted.

[eaccae]

dad2brooke

thanks for the info. I had read about that as well and am actually going to speak with DD's (not adhd) pediatrician. We have been putting off having her tested for OCD (she just turned 4 and I wanted to wait another year to see how it goes) - but we have been watching her for a couple of years. Funny thing is she was hospitalized two years ago for scarlet fever, had an inflammed lymph node the size of plumb that had to be drained, etc. and I have been wondering if the OCD could have been caused by this since it seemed to start around that time period. Not long after she came home from the hospital she declared that "Isabella was gone" and she was to be called "Superman Buzz Lighyear". She would completely FREAK out if anyone EVER called her Isabella - this went on for 9 months. (it was actually quite humorous - when she saw a picture of Buzz she would say, "look, that's me" and if you showed her a picture of her she would say "look, it's Buzz" - and in case you were wondering - the superman was added so that Buzz could fly - he was a toy afterall.) Anyway at this same time is when all the rituals started. (There is a certain way to go downstairs, to open the door, to get out of the car . . . there are certain phrases that must be said correctly . . .) So I am curious if the strep might have anything to do with the OCD.

[Brenda]

Eaccae,How many times did you daughter have Strep?Stephanie has had it 3 times in the last 2 months.I think she has it again because she was complaining of a headache yesterday and I looked in her throat and it is getting a little red.She finished her antibiotics 3 days ago.I am worried that she might get scarlet fever.What are the symptoms of scarlet fever?

[eaccae]

brendamcraw2

DD had just turned 2 when she got it - she only got it once but that was enough with this thing. Actually my son and I got the scarlet fever as well (it was brutal on me - I couldn't shake it - even with antibiotics - for weeks). There is a rash that appears usually on the tummy area possibly branching out to the rest of the body for about 24 hours and then it disappears. (I had no idea about this but in adults - the rash can appear in certain areas and seem like a yeast infection). It has the same symptoms as strep. I can only tell you from my experience that I thought I was going to die I was so miserable-my throat was on fire, my head was pounding . . . !! DS had cold like symptoms with it but his throat wasn't very sore if at all. I think it hit him hard with a fever and cold - he had the rash and because of his sister we did a culture on him. I think he was just starting to get a sore throat when we got him the antibiotics. As far as I know DD didn't have a sore throat either. There are different strains for strep - B & A - A is the more dangerous and A is the one associated with scarlet fever. But it is that rash that is the big give away!

My sister was very sensitive to strep and used to get it - sometimes - a few times a year - like you were saying with your daughter. Hopefully she will get over it soon - poor her. But for her to get scarlet fever - she would need the type of A strain. Just keep your eye out for the rash. Your doctor should know the strain when he took the culture. It sounds like she needs to be on the antibiotics longer! That is what happened to me - I took them for the amount of time I was supposed to but within a week of finishing up I would get the strep back!! - No matter what the doctor says! They told me it wouldn't make a difference but I know that it did for me. Pediatricians also tend to say that children my DD age couldn't get strep. If I had a penny for all the children I know under 3 (and yes under 2) who have had strep - I would be a rich girl!

[Brenda]

Stephanie will be having a tonsillectomy on 1-26.She had strep again saturday and they gave her a shot.She saw the ENT yesterday and the strep was still there.I am sooo scared for her.She has never had surgery before.She cried last night because she said that it would hurt.I tried to make her feel better but I can't lie to her and tell her that it want hurt.I told her that she will be asleep while they take them out and when she woke up it will hurt a little bit but she can eat all the icecream that she wants.That made her feel better.

[eaccae]

Oh - poor baby! Watching surgery on your child is so very hard! But the silver lining is that hopefully - she will be much better after this!!! Good luck!

[kim]

You can also go to Harvard neurology braintalk forums where you cn go to PANDAs and find out alot of inf. from others. My sons doc. thinks my son is pandas.But the only thing to do is ivig treatments or plasma exchange adn they are very involved and still experimental.... sorry I wish there were more too...my son got very sick about 2 mos. ago with a hgh fever virus (104) for about 10 days.. after he got better his tics exploded. His tics first started when he was 6 and got strep..... Now he has full blown tourettes, and the tics gets worse with bad illnesses..
kim

[Brenda]

Stephanie had her tonsillectomy yesterday and did fine.Today she is in more pain and I'm having a hard time getting her to take her pain medicine.It is so hard watching her hurt.I just wanted to let everyone know that the surgery went well.I need to go check on her now.

[finnmom]

Brendamccraw2
I´am pleace to know you got through your dd´s surgery, it shurely is much harder for parent´s.

I bet she is doing much better already. In here they use tonsillectomy to prevent ear-inf. and also throuth-imf. good new´s is , ti usually help´s dramaticly

You asked about scarlet fever; there is very shore throuth, fever, face get´s little reddish, overall aeching etc. I´am not so familiar with those symptoms because most kid´s in here get shot´s against it at age of 1½ and 6 year´s, so it´s VERY random in here.

I hope you both feel better now.
Marja

p.s. thank´s for the info of PANDAS, i´ve been scrathing my head to figure out what it´ll be. ;D

[Honeysmom]

I don't know anything about PANDAS so I may be way off here, but my BIL had a chronic strep infection. He could not shake it no matter what. The poor kid was on anti-biocits for 2 years.

Finally what to do for him anymore, but he was building up a resistance to everything they gave him to treat it so the suggested taking the tonsils out. Afterwards the hospital did all their testing on the tonsils they foudn out he did not have true strep throat. He had a mutated form that conventional cultures didn't catch. He has been fine since. He never had scarlet fever.

I had scarlet fever and so did my sister. Made me feel like garbage, on top of the fact that I was 8 1/2 months pregnant when I got it. There was some major whining going on for a few weeks there!!

[mommy007]

I took my DS to A.I. Dupont yesterday to see a neurologist - he is on Adderal XR and has tics - he is currently picking at his face and having night terrors.

The doc and taking him off all meds but adding antibiotics, the prescription has 5 refills - it is long term antibiotic treatment.

blood work was done both ASO titer and Anti Dnase titer to check his levels - he is suspected of having PANDAS. We have a family history and the doc believes it's a genetic connection.

I had rhamatic fever, chorea and OCD as a child -

My DS was sick with the flu around Dec 22nd - since they what was a couple of spots on his face has turned into 22!! I believe the fever and flu cause the reaction. however he has been known to have tics for the last 4 years on medication. Off meds he is fine. Sometime the side effects are worse than the issue your trying to treat