Please take a minute to help me.

[LovingMJ]

Hi Everyone....I am new, just found this site last night. I am very scared....my thoughts are all over the place....please bare with me. I don't even know where to begin....

 

My son MJ will be 4 this January. He was always a runny nose and coughy kind of kid...the kid who was always sick. Every time I took him to the pediatrician he had a sinus infection. Always treated with antibiotics (NEVER was tested for strep). The ped recommends we go see an ENT...which we did last January. He suggested we go for a sweat test to see if he has cystic fibrosis (which was negative). He also suggested we go to an allergist to get tested for allergies. This is where things start to go down hill. He tested negative for all allergens, but he was SCARED to DEATH of the test. He cried like never before when the little needles went in to his back. Now, his fear of doctors begins. We begin to see the ENT regularly for his chronic sinus infections and each time we go he puts the scope in his nose...and he HATED IT!. Added to his fear or doctors. The ENT prescribed Singular on January 20th, 2008. From that date on....my little boy changed.

 

MJ had a very bad reaction to the Singular. He was only it for about 2 weeks when he became so fearful (to the point of trembling) and his blinking tic began. He also began to have frequent urination. The frequent peeing was the worst...broke my heart to see my baby like this. After we stopped the Singular...he slowly began to get better. The fearfulness/bad dreams stopped as soon as he stopped taking it. We went to urologists and eye doctors...all confirmed that he was fine. Just nervous tics that most boys have...he will grow out them. He ended up having his adenoids removed in April....and has been well in the sinus department since. All tics...peeing and blinking were gone at this point.

 

Everyone told me the fear of doctors made him so scared that is why the blinking started.

 

Flash forward to August....my husband and I are very excited for a family vacation at the beach. We talked about it every day to MJ and how much fun we were going to have (he is our only one so far). 2 days before we leave he is crying in raging pain that his ear hurts. Take him to the ped and he has an ear infection. Put on antibiotics. We left 2 days later and all is good until the drive there...I notice while MJ is watching his DVD in the back seat the blinking has returned. My heart instantly goes in to my stomach. When we reach the hotel and unpack he starts getting upset...saying that he misses his toys and is misses his house. He ends up having fun...but his behavior was off...acted up a lot and wasn't listening at all. The blinking continued for about a week two after we returned home and then life was back to normal.

 

Again...was told that the fear of going back to dr and the pain in his ear made him scared and stressed the blinking started again.

 

From August up until last week life was good for us all. My husband and I even commented how good his behavior has been and he has started to "grow up". Then BAM the eyes start blinking, he starts getting scared ALL THE TIME...will not go in his bedroom alone, will not go in any room with out a light on, will not sleep alone and will not sleep with a light on even with me. The frequent peeing has appeared at night too when he has bad dreams. Over the weekend he barely slept because he kept waking up crying about a hand hanging in a tree!! He also has been acting up again and doing things that he knows better not to. He also started a new tic...itching his butt! He does it constantly...I have made sure many times it was clean. It is just something he does and we try our best to ignore it.

 

As I was searching the net last night and came across some posts from this board...it HIT ME....MJ was just at the ped last week complaining his ear hurt. The doctor said he has swollen glands because when she felt his throat...he said OUCH! We left there with nothing...she said his ears were fine just some fluid in his ears it was just the start of a cold. At this point he was fine tic wise...no blinking or butt scratching.

 

Last night was a good night sleep wise. I have him Tylenol before bed and he only woke up once to pee. I asked him this morning..."Did you have a good sleep?" He said, "Yes Mommy...I didn't have any bad dreams". I think he was too tired of not sleeping the past few night it finally caught up to him. It breaks my heart.

 

All of you have been going through this longer than me and have experience. Do you think I am in the right place...or does he just have OCD? His ped just feels his some nervous tics that will come and go and he will outgrow them.

 

I appreciate any and all feedback and I apologize that this is so long.

[sf_mom]

You are in the right place and there is help. OCD/TICs are symptoms of PANDAs. The first thing you should do is read, read, read, read Pandasnetwork.org and all related information. Its a lot of information to take in with one pass. You should also test you son's CaM Kinase level... a protein in the blood that is activated by cross reactive antibodies only available through Madeleine Cunningham.

 

I've got to run this morning but I'm sure others will chime in with help.

 

So sorry MJ is sick.

 

-Wendy

[faith]

loving,

yes, you are on the right track and you should go to the ped and tell them he has a sore throat and to have a strep test, at least you will see where you stand. I wish I had been "in the know" when my son was 4, but I had no idea about all this till he was 6 or 7 (he is 10 now) and the info at that time was just about titers testing and positive strep tests. he was negative to those, but at least I would have known to track illness and tics and behaviors like you are now. I may have been able to avoid all the years of the ups and downs of tics and some behavioral issues (his tics started at 3 1/2). if it is as you describe that he starts blinking and showing fears and anxiety after these sinus and ear infections, then that is a big clue.

 

the others here who are more experienced will give you advice on what to do.

 

Faith

[thereishope]

Welcome to our group. I want to start this by saying if your son's tics and behaviors have resurfaced, take him to the dr for a strep test asap. If the rapid comes back negative, make sure they do a culture. Call today for an appt. Also rule out all family members have strep. You can have strep w/o a fever, sore throat, etc. That's actually pretty common in this forum (inc my family).

 

As for the Singular experience, certain allergy meds do not go over well with PANDAS kids. I can't remember if singular was one of the frequently mentioned ones. I want to say it was, but not completely sure. Certain allegy meds have caused hyperness, increase in PANDAS symptoms, etc. Some go over well with PANDAs kids. So if he is in need of an allergy med, just ask for others' experiences.

 

As for the picking his butt. Well, that could be a tic or it could be OCD. picking is an OCD spectrum disorder. I know a at least two kids whose parents are in this forum have mentioned it as a problem. To rule out snything is causing irritaion, you could even have his anal area swabbed for strep and you could start giving him a probiotic to rule out an overgrowth of yeast.

 

Also, fyi, other viruses and infections could cause problems to resurface. My son's PANDAS symptoms come back full force with srep, but also come through when he has had a cold, allergies, and H1N1.

 

Some parents here have found that Ibruprofen (Motrin, Advil, etc) may help with PANDAS symptoms. They do sell a dye free liquid Motrin he could take. It does not solve the problem completely, but may help ease some symptoms. It's something to try.

 

Finally, where do you live? Ther are some threads (posts) that have been pinned at the top of this forum. A list of some docs who treat PANDAS are listed. See if anyone is near you. If not, post where you live and perhaps someone can make a suggestion.

[smartyjones]

so sorry you are here but you will find much info, support and help here.

when i first read these posts, i found it difficult and depressing b/c i just didn't want to be on this road. however, there is so much info and help, practical and emotional, you can get from these other parents it's invaluable!

 

i would add to check our webpediatrics.com information on pandas.

 

~Kathy

[Debbie1]

Hi LovingMJ,

 

Welcome to the forum. I'm sorry you find yourself here. I would definitely take him back to the pediatrician and get a throat culture (rapid and 72 hour). If he is positive, he can get antibiotics and it sounds like he has had a good response when on them before. If the culture is negative, get a blood test (ask for ASO and AntiDNAse B titers to be run). If elevated, they would indicate a recent strep infection. Keep in mind though that not everyone here has elevated titers. If they are normal, it does not necessaily rule out PANDAS.

 

My son had the urinary frequency with a few episodes. It is a symptom that many PANDAS children have at some point in time. We also went to urologists, eye doctors etc. with no one ever putting together a complete picture of my child who in hindsight was a clear cut PANDAS case. In our case, it was extremely elevated strep titers that got the attention of our doctors who then began to consider the possibility that he may have PANDAS. I think any parent with a child with tics and/or OCD should explore a PANDAS diagnosis, if nothing other than to rule it out before considering other diagnoses and treatments.

 

This is a great forum and you will learn a lot by reading the posts here. It is solely because of this forum that we got a correct diagnosis and treatment. (Thanks everyone! )

 

Debbie

[peglem]

I can't tell if your son has PANDAS or not. But it sounds like he has some characteristics that may indicate PANDAS, its a good idea to check out the possibility. When you see the strange behaviors occurring again, take him in for a strep test...if the rapid is negative, have it cultured. The bum itching: possible to have rectal strep- if that comes back as a symptom-have that checked as well.

Also, if your child is sick that often, get him in to an immunologist to check for immune deficiency.

And yes, do some reading on pandasnetwork.org .

[dee45]

Hi,

WELCOME!! you have found the right place for help. I agree with all the previous posts. You need to get that strept . keep us posted.

 

Dea

[bubbasmom]

Here's my deal, my son NEVER shows symptoms of strep. We always have him at the doctor for 'something else'. But here's the deal, if your rapid test is negative, move onto a culture, if the CULTURE is negative MAKE SURE you do the titers. There are a couple of diffent kinds and your doctor will know which one to do. One shows is there has been strep within the past 3 weeks, one shows like past 6 weeks, then another mayber shows further back. My son's last strep test was negative, culture was negative, after the PANDAS symptoms started we did the titers and sure enough it traces right back to those negative cultures. He had strep and the cultures were WRONG.

What area do you live in? There are people from all over on here, but if we know where you are we can tell you about doctors close to you and also you might run into someone close by you.

I'm in St. Louis.

By the way, you'll be okay, it's a tough road but you're a mom! You are strong enough and DO NOT TAKE NO FOR AN ANSWER FROM ANYONE! You're in charge here, get used to it because if it is PANDAS (sounds to me like it is) you are going to get a lot of people that are very uneducated on this. Also buy the book SAVING SAMMY its good.

If you need someone to talk to just to hear a voice email me at dkriese@sbcglobal.net and I will give you my cell phone number. I stay home and can talk during the day.

Denna

Hi Everyone....I am new, just found this site last night. I am very scared....my thoughts are all over the place....please bare with me. I don't even know where to begin....

 

My son MJ will be 4 this January. He was always a runny nose and coughy kind of kid...the kid who was always sick. Every time I took him to the pediatrician he had a sinus infection. Always treated with antibiotics (NEVER was tested for strep). The ped recommends we go see an ENT...which we did last January. He suggested we go for a sweat test to see if he has cystic fibrosis (which was negative). He also suggested we go to an allergist to get tested for allergies. This is where things start to go down hill. He tested negative for all allergens, but he was SCARED to DEATH of the test. He cried like never before when the little needles went in to his back. Now, his fear of doctors begins. We begin to see the ENT regularly for his chronic sinus infections and each time we go he puts the scope in his nose...and he HATED IT!. Added to his fear or doctors. The ENT prescribed Singular on January 20th, 2008. From that date on....my little boy changed.

 

MJ had a very bad reaction to the Singular. He was only it for about 2 weeks when he became so fearful (to the point of trembling) and his blinking tic began. He also began to have frequent urination. The frequent peeing was the worst...broke my heart to see my baby like this. After we stopped the Singular...he slowly began to get better. The fearfulness/bad dreams stopped as soon as he stopped taking it. We went to urologists and eye doctors...all confirmed that he was fine. Just nervous tics that most boys have...he will grow out them. He ended up having his adenoids removed in April....and has been well in the sinus department since. All tics...peeing and blinking were gone at this point.

 

Everyone told me the fear of doctors made him so scared that is why the blinking started.

 

Flash forward to August....my husband and I are very excited for a family vacation at the beach. We talked about it every day to MJ and how much fun we were going to have (he is our only one so far). 2 days before we leave he is crying in raging pain that his ear hurts. Take him to the ped and he has an ear infection. Put on antibiotics. We left 2 days later and all is good until the drive there...I notice while MJ is watching his DVD in the back seat the blinking has returned. My heart instantly goes in to my stomach. When we reach the hotel and unpack he starts getting upset...saying that he misses his toys and is misses his house. He ends up having fun...but his behavior was off...acted up a lot and wasn't listening at all. The blinking continued for about a week two after we returned home and then life was back to normal.

 

Again...was told that the fear of going back to dr and the pain in his ear made him scared and stressed the blinking started again.

 

From August up until last week life was good for us all. My husband and I even commented how good his behavior has been and he has started to "grow up". Then BAM the eyes start blinking, he starts getting scared ALL THE TIME...will not go in his bedroom alone, will not go in any room with out a light on, will not sleep alone and will not sleep with a light on even with me. The frequent peeing has appeared at night too when he has bad dreams. Over the weekend he barely slept because he kept waking up crying about a hand hanging in a tree!! He also has been acting up again and doing things that he knows better not to. He also started a new tic...itching his butt! He does it constantly...I have made sure many times it was clean. It is just something he does and we try our best to ignore it.

 

As I was searching the net last night and came across some posts from this board...it HIT ME....MJ was just at the ped last week complaining his ear hurt. The doctor said he has swollen glands because when she felt his throat...he said OUCH! We left there with nothing...she said his ears were fine just some fluid in his ears it was just the start of a cold. At this point he was fine tic wise...no blinking or butt scratching.

 

Last night was a good night sleep wise. I have him Tylenol before bed and he only woke up once to pee. I asked him this morning..."Did you have a good sleep?" He said, "Yes Mommy...I didn't have any bad dreams". I think he was too tired of not sleeping the past few night it finally caught up to him. It breaks my heart.

 

All of you have been going through this longer than me and have experience. Do you think I am in the right place...or does he just have OCD? His ped just feels his some nervous tics that will come and go and he will outgrow them.

 

I appreciate any and all feedback and I apologize that this is so long.

[ajcire]

Big hugs!

 

In hindsight.. gotta love that 20/20 hindsight.... I had taken my ds to the dr at the age of 2 over eye blinking.... yep, normal childhood tic he said.. it will come and go.. don't worry about it. I seriously wish I knew then what I know now because I would never have accepted that a tic is just normal without ruling out every possibility.

[bubbasmom]

ONE MORE SUGGESTION, here's some websites.....e-pandas.com/id2.html is Nicco's story I thought was interesting, there is pandasfoundation.org the mother that wrote Saving Sammy is on there, and pandasnetwork.org the gal on there called me on the phone personally and meant so much to me.

 

 

 

 

Hi Everyone....I am new, just found this site last night. I am very scared....my thoughts are all over the place....please bare with me. I don't even know where to begin....

 

My son MJ will be 4 this January. He was always a runny nose and coughy kind of kid...the kid who was always sick. Every time I took him to the pediatrician he had a sinus infection. Always treated with antibiotics (NEVER was tested for strep). The ped recommends we go see an ENT...which we did last January. He suggested we go for a sweat test to see if he has cystic fibrosis (which was negative). He also suggested we go to an allergist to get tested for allergies. This is where things start to go down hill. He tested negative for all allergens, but he was SCARED to DEATH of the test. He cried like never before when the little needles went in to his back. Now, his fear of doctors begins. We begin to see the ENT regularly for his chronic sinus infections and each time we go he puts the scope in his nose...and he HATED IT!. Added to his fear or doctors. The ENT prescribed Singular on January 20th, 2008. From that date on....my little boy changed.

 

MJ had a very bad reaction to the Singular. He was only it for about 2 weeks when he became so fearful (to the point of trembling) and his blinking tic began. He also began to have frequent urination. The frequent peeing was the worst...broke my heart to see my baby like this. After we stopped the Singular...he slowly began to get better. The fearfulness/bad dreams stopped as soon as he stopped taking it. We went to urologists and eye doctors...all confirmed that he was fine. Just nervous tics that most boys have...he will grow out them. He ended up having his adenoids removed in April....and has been well in the sinus department since. All tics...peeing and blinking were gone at this point.

 

Everyone told me the fear of doctors made him so scared that is why the blinking started.

 

Flash forward to August....my husband and I are very excited for a family vacation at the beach. We talked about it every day to MJ and how much fun we were going to have (he is our only one so far). 2 days before we leave he is crying in raging pain that his ear hurts. Take him to the ped and he has an ear infection. Put on antibiotics. We left 2 days later and all is good until the drive there...I notice while MJ is watching his DVD in the back seat the blinking has returned. My heart instantly goes in to my stomach. When we reach the hotel and unpack he starts getting upset...saying that he misses his toys and is misses his house. He ends up having fun...but his behavior was off...acted up a lot and wasn't listening at all. The blinking continued for about a week two after we returned home and then life was back to normal.

 

Again...was told that the fear of going back to dr and the pain in his ear made him scared and stressed the blinking started again.

 

From August up until last week life was good for us all. My husband and I even commented how good his behavior has been and he has started to "grow up". Then BAM the eyes start blinking, he starts getting scared ALL THE TIME...will not go in his bedroom alone, will not go in any room with out a light on, will not sleep alone and will not sleep with a light on even with me. The frequent peeing has appeared at night too when he has bad dreams. Over the weekend he barely slept because he kept waking up crying about a hand hanging in a tree!! He also has been acting up again and doing things that he knows better not to. He also started a new tic...itching his butt! He does it constantly...I have made sure many times it was clean. It is just something he does and we try our best to ignore it.

 

As I was searching the net last night and came across some posts from this board...it HIT ME....MJ was just at the ped last week complaining his ear hurt. The doctor said he has swollen glands because when she felt his throat...he said OUCH! We left there with nothing...she said his ears were fine just some fluid in his ears it was just the start of a cold. At this point he was fine tic wise...no blinking or butt scratching.

 

Last night was a good night sleep wise. I have him Tylenol before bed and he only woke up once to pee. I asked him this morning..."Did you have a good sleep?" He said, "Yes Mommy...I didn't have any bad dreams". I think he was too tired of not sleeping the past few night it finally caught up to him. It breaks my heart.

 

All of you have been going through this longer than me and have experience. Do you think I am in the right place...or does he just have OCD? His ped just feels his some nervous tics that will come and go and he will outgrow them.

 

I appreciate any and all feedback and I apologize that this is so long.

[LovingMJ]

Thanks Everyone.

 

I am in NJ....any one have any DR recs for me?

[Kayanne]

I'm really sorry that you are here, but you have found the BEST place for support and info on PANDAS.

 

Dr. Beth Latimer is right outside of DC. She is a Pediatric Neurologist who treats a lot of PANDAS children, also Dr. Rosario Triffileti is a Pediatric Neurologist in Middletown, NY.

 

~Karen

[EAMom]

Has your son had a workup by an immunologist?

 

You've already received lost of good suggestions by others. Definitely do the throat cultures (and aso/anti-dnase b if the cultures are neg.)

 

Here's a thread on docs http://www.latitudes.org/forums/index.php?showtopic=5023.

 

Here are the most obvious docs that come to mind:

Darien, CT one hour from NYC. His name in Dr. Denis Bouboulis (an excellent immunologist)...members on this board have seen him recently.

Rosario Trifiletti (a few here have seen him), NJ neurologist

Beth Latimer (neurologist in DC), probably the most well used doc by parents on this forum

 

 

 

Also, Beth Maloney has a list of docs on her Facebook page (under "discussions"). Her doc was Catherine Nicolaides. (I understand a consult with her is pricey and she'll likely just do augmentin....she's not well versed in other aspects of pandas.) This is what she has under NJ:

NEW JERSEY

 

Dr. Catherine Nicolaides, MD

975 Tuckerton Road

Marlton, NJ 08053

856-983-6675

 

Dr. Rosario Trifiletti, MD

Goryeb Children’s Hospital

100 Madison Avenue

Morristown, NJ

(973) 971-5700

 

 

Dr. Lara Morse (pediatric neurologist), MD

Pediatric Neurologist

Program Director

Pediatric Developmental Center

Saint Barnabas Medical Center

Livingston, NJ

Phone: (973) 322-7570 (ask for Carla)

Fax: (973) 322-7685

 

Dr. Max April

173 Froehlich Farm Blvd

New York Otolaryngology Associates

Woodbury, NY 11797

[dcmom]

lovingmj- I would go straight to Dr Rosario Triffileti. He is very compassionate, and probably one of the most knowledgeable pandas docs there is. He just opened his own practice. Find his info on www.neurokidsr.us. I have seen him a couple times with my daughter and he is wonderful! He opened his own practice to specialize in pandas and other hard to diagnose issues. Call him today- he will help your child...

Eileen