Sabrina's Update

[Lacy]

It's been a really long time since I last updated everyone, and I feel kind of like a traitor because mentally I think we abandoned the idea of Sabrina's 'issues' as being PANDAS. I also feel a little guilty because I've been AWOL from the forum for so long, and now here I am looking for shoulders to cry on.

 

Let me try my best to quickly update everyone...

 

Sabrina had the typical symptoms with no tics. Her most pronounced symptom were the severe rages that she would blow into. When witnessed, people looked into her eyes and it was as if Sabrina was gone, and nobody was home. Her eyes were blank and it was extremely frightening to witness. Sabrina has seen numerous specialists, doctors, psychologists, psychiatrists...

 

The last ray of hope we had was when Sabrina's Infectious Disease specialist prescribed her a long term course of antibiotics. She was on them for nine months before we decided to take her off. After taking her off the antibiotics she was great and everything was "Normal" until about 4 months later when her moods starting going South.

 

We called the Infectious Disease specialist and after seeing her again he prescribed another round of the pink stuff. This time after a month or so, we saw no changes and if anything, her behavior was getting more unpredictible and more violent. She was telling the assistant principal she wished he would die, and that she wanted to cut his arm off. She started hitting other children... her meltdowns were becoming more calculated and angry.

 

This is about when we started getting desperate and veered off course from the PANDAS.

 

During this time, Sabrina began to get inconsistent but frequent belly aches, headaches and joint aches.

 

We had Sabrina see a Developemental Pediatrician a couple hours up the road from us. During the appointment Sabrina experienced a severe case of nausea that seemed legit, but the staff at the office seemed unmoved and were determined to evaluate her. We felt conflicted over the evaluation continuing because she really looked sick, but we did drive a couple hours up the road. Money is tight.

 

The evaluation came back focused on the emotions they felt were a problem: anxiety, anger, depression, bi-polar, and OCD. They even suggested that some of her tests seemed to indicate Asperger's. Of course they didn't really have any answers on how to 'fix her'.

 

In the past couple of weeks she's seen a psychiatrist who put her first on Zoloft... ((sigh)) I felt like the worlds worst mother. My gut says this is medical, not mental health issues. But I can scream it from the highest mountain top and nobody - NOBODY is listening. Well, you guys are. ((sniffle))

 

The Zoloft caused Sabrina's emotions to tank even further. The final straw was when she was so upset I witnessed her bite herself in the car. That was it. I emotionally broke down with her. My poor baby girl was hurting herself for reasons I'm sure she couldn't even figure out. I called the psychiatrist who told me to immediately stop the Zoloft. She wanted to put her on Lamictal - a medication for epilepsy and for maintenance treatment of bipolar I disorder.

 

While the Lamictal started to stabilize the crazy mood rages at school, we were still dealing with her bellyaches and joint aches that seemed to be getting worse.

 

We took her to see her pediatrician who ran a huge panel of blood tests (10 of them... the few I recognized were Celiac disease, arthritist and basic food allergies). So our baby girl got stuck with another needle. I wouldn't mind so much if I knew it was going to show us something, but they never do. They just always leave more questions.

 

She saw her psychiatrist again yesterday and they want to increase her dose to 50 (she's on 25 now).. mg I think. She felt encouraged that Sabrina seemed to be more in control of her moods at school (there was one incident where she ran outside of the building, but never melted down... the principal was encouraged that she seemed to be holding it together).

 

Today started off a little worrisome. She was grouchier than usual, and she was being hateful to me. I was able to calm her down and get lots of kisses before I left her with the sitter. I just got a call about 30 minutes ago from Sabrina's teacher at school. She was raging and melting down. She hit a boy in the head with her shoe. She was tearing apart the in school suspension room (they call it "PAR" - positive attitude room), and they just couldn't calm her down. The school refuses to put Sabrina on the bus when she's in the middle of a fit - so I got the phone call that we needed to come pick her up from school. We live out in the country - her school is an hour away from my work. DH was at home in the middle of a flooring project, but he was my only option. I called him to pick her up and he finally popped his lid. We're both at our wits end and we keep saying how this has got to stop, but we know it never will. Or at least it feels that way.

 

(Geez, I'm tearing up here at work... I feel like an idiot)

 

Back in December we got Sabrina an appointment with a different pediatric neurologist (she's already seen one, and this was our chance to get a second opinion). The soonest they could see her (despite the waiting list) was 2/23. I've been calling almost every day to get that bumped up - no luck. I'm not sure what I expect to happen this go around. All of these false starts.

 

I'm so lost guys. I don't even know if this is PANDAS anymore. I hate to keep subjecting my baby girl to all of these stupid @#&^! random tests and pulling up ZIP! ZILCH!! NADA!!!

Even if we couldn't "cure" her of these horrid meltdowns, it sure would be a nice relieving step to at least be able to say... we know what this is.

 

Alrighty.. I'm stepping down off my pitty party soapbox for now. Thanks for your shoulders to lean on.

[amy s]

It's been a really long time since I last updated everyone, and I feel kind of like a traitor because mentally I think we abandoned the idea of Sabrina's 'issues' as being PANDAS. I also feel a little guilty because I've been AWOL from the forum for so long, and now here I am looking for shoulders to cry on.

 

Let me try my best to quickly update everyone...

 

Sabrina had the typical symptoms with no tics. Her most pronounced symptom were the severe rages that she would blow into. When witnessed, people looked into her eyes and it was as if Sabrina was gone, and nobody was home. Her eyes were blank and it was extremely frightening to witness. Sabrina has seen numerous specialists, doctors, psychologists, psychiatrists...

 

The last ray of hope we had was when Sabrina's Infectious Disease specialist prescribed her a long term course of antibiotics. She was on them for nine months before we decided to take her off. After taking her off the antibiotics she was great and everything was "Normal" until about 4 months later when her moods starting going South.

 

We called the Infectious Disease specialist and after seeing her again he prescribed another round of the pink stuff. This time after a month or so, we saw no changes and if anything, her behavior was getting more unpredictible and more violent. She was telling the assistant principal she wished he would die, and that she wanted to cut his arm off. She started hitting other children... her meltdowns were becoming more calculated and angry.

 

This is about when we started getting desperate and veered off course from the PANDAS.

 

During this time, Sabrina began to get inconsistent but frequent belly aches, headaches and joint aches.

 

We had Sabrina see a Developemental Pediatrician a couple hours up the road from us. During the appointment Sabrina experienced a severe case of nausea that seemed legit, but the staff at the office seemed unmoved and were determined to evaluate her. We felt conflicted over the evaluation continuing because she really looked sick, but we did drive a couple hours up the road. Money is tight.

 

The evaluation came back focused on the emotions they felt were a problem: anxiety, anger, depression, bi-polar, and OCD. They even suggested that some of her tests seemed to indicate Asperger's. Of course they didn't really have any answers on how to 'fix her'.

 

In the past couple of weeks she's seen a psychiatrist who put her first on Zoloft... ((sigh)) I felt like the worlds worst mother. My gut says this is medical, not mental health issues. But I can scream it from the highest mountain top and nobody - NOBODY is listening. Well, you guys are. ((sniffle))

 

The Zoloft caused Sabrina's emotions to tank even further. The final straw was when she was so upset I witnessed her bite herself in the car. That was it. I emotionally broke down with her. My poor baby girl was hurting herself for reasons I'm sure she couldn't even figure out. I called the psychiatrist who told me to immediately stop the Zoloft. She wanted to put her on Lamictal - a medication for epilepsy and for maintenance treatment of bipolar I disorder.

 

While the Lamictal started to stabilize the crazy mood rages at school, we were still dealing with her bellyaches and joint aches that seemed to be getting worse.

 

We took her to see her pediatrician who ran a huge panel of blood tests (10 of them... the few I recognized were Celiac disease, arthritist and basic food allergies). So our baby girl got stuck with another needle. I wouldn't mind so much if I knew it was going to show us something, but they never do. They just always leave more questions.

 

She saw her psychiatrist again yesterday and they want to increase her dose to 50 (she's on 25 now).. mg I think. She felt encouraged that Sabrina seemed to be more in control of her moods at school (there was one incident where she ran outside of the building, but never melted down... the principal was encouraged that she seemed to be holding it together).

 

Today started off a little worrisome. She was grouchier than usual, and she was being hateful to me. I was able to calm her down and get lots of kisses before I left her with the sitter. I just got a call about 30 minutes ago from Sabrina's teacher at school. She was raging and melting down. She hit a boy in the head with her shoe. She was tearing apart the in school suspension room (they call it "PAR" - positive attitude room), and they just couldn't calm her down. The school refuses to put Sabrina on the bus when she's in the middle of a fit - so I got the phone call that we needed to come pick her up from school. We live out in the country - her school is an hour away from my work. DH was at home in the middle of a flooring project, but he was my only option. I called him to pick her up and he finally popped his lid. We're both at our wits end and we keep saying how this has got to stop, but we know it never will. Or at least it feels that way.

 

(Geez, I'm tearing up here at work... I feel like an idiot)

 

Back in December we got Sabrina an appointment with a different pediatric neurologist (she's already seen one, and this was our chance to get a second opinion). The soonest they could see her (despite the waiting list) was 2/23. I've been calling almost every day to get that bumped up - no luck. I'm not sure what I expect to happen this go around. All of these false starts.

 

I'm so lost guys. I don't even know if this is PANDAS anymore. I hate to keep subjecting my baby girl to all of these stupid @#&^! random tests and pulling up ZIP! ZILCH!! NADA!!!

Even if we couldn't "cure" her of these horrid meltdowns, it sure would be a nice relieving step to at least be able to say... we know what this is.

 

Alrighty.. I'm stepping down off my pitty party soapbox for now. Thanks for your shoulders to lean on.

 

 

OMG Lacy this sounds EXACTLY like PANDAS to me!!! Have you done a steroid burst??? That, for us, was the big diagnostic tool that made us realize it was PANDAS. This is the perfect time to try one because you have to do it during a symptom exacerbation to see any results. Do you have a doc to prescribe? Dr. K recommended to us to do the steroid burst 2 weeks after all antipsychotics and SSRI were discontinued. This sounds so much like my dd but things with my dd kept worsening until school wasn't possible and I couldn't work. What antibiotic is your dd on? Maybe it needs to be changed? Maybe it needs to be increased? I am so SO sorry you are going through this. It just breaks my heart to read this board sometimes. Please hang in there...deep breaths. Take care and let us know how it goes. (((hugs)))

[Lacy]

She was on Cephlexin (sp?) during that 9 month period. I think it was 250mg and the ID specialist didn't feel comfortable at the time giving her a higher dosage (too much for her weight). She's not on antibiotics now - just the Lamictal

 

We haven't tried the steroid burst... can you give me the skinny on what it's all about?

 

It's funny (not haha funny), but I feel like I've lost control of the situation altogether. I told DH that I'm ready to just stick her in the best children's hospital on the East Coast and tell them I'm not leaving until they figure out what's wrong with my baby! Oh man... I'm a mess today - I keep feeling the tears trying to let go even as I type.

 

What type of doctor is the best to discuss the steroid bursts with? Honestly I'm losing faith in Sabrina's pediatrician. I think she'd blow it off.

 

Almost as if it were a sign that I was right about the pediatrician (and her grumpy office worker bees)... I tracked down Sabrina's blood test results with the lab that took the blood... they couldn't fax me the results, but they offered to fax them to the doctor - apparently one test was holding everything up and I said to just send what they had. Well, I called the doctor's office and they grumpily informed me that they gave them to the doctor and that she'd call me when she was ready. Unsympathetic [enter a slew of explatives here].

 

GAH!

[EAMom]

I'm so sorry you are going through this Lacy.

 

I would ditto what Amy S. said...it sounds just like PANDAS. Eventually antibiotics can stop working with PANDAS. Azithromycin might work if the Cephalexin isn't cutting it...but actually I would agree with Amy that a steroid burst is the best idea. It is a good diagnostic tool, help you get to the bottom of this PANDAS question once and for all...and then hopefully you can proceed with IVIG and take care of this once and for all. If your dd improves during (or after, I don't remember the exact time frame) the steroid burst then that confirms the PANDAS diagnosis (eg, someone with bi-polar or autism shouldn't get better on steroids!) and the IVIG should also work.

 

If your doc needs info on the steroid burst you (or him/her) should contact Dr. K or Dr. Leckman (Yale).

[Pudgeo]

In my opinion...(because I went through this with my son) anti-psychotics/anti-depressants don't really do the job with our kids because this is an anti-body problem...My shrink even said that to me...If she showed improvement with the anti-biotics I would try that first..

lamictal is a pretty low-side effect med and would probably help all of us with our moods!!so it is good it may help a little! Sarah

[Desperate Mom]

Lacy,

You mentionsed East Coast..What state are you in...I am in NJ and looking for a DR too.. Let me know if you find one.

[EAMom]

Hi Desparate Mom,

Dr. Trifiletti (pediatric neurologist) in NJ is PANDAS knowledgeable. http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

[amy s]

She was on Cephlexin (sp?) during that 9 month period. I think it was 250mg and the ID specialist didn't feel comfortable at the time giving her a higher dosage (too much for her weight). She's not on antibiotics now - just the Lamictal

 

We haven't tried the steroid burst... can you give me the skinny on what it's all about?

 

It's funny (not haha funny), but I feel like I've lost control of the situation altogether. I told DH that I'm ready to just stick her in the best children's hospital on the East Coast and tell them I'm not leaving until they figure out what's wrong with my baby! Oh man... I'm a mess today - I keep feeling the tears trying to let go even as I type.

 

What type of doctor is the best to discuss the steroid bursts with? Honestly I'm losing faith in Sabrina's pediatrician. I think she'd blow it off.

 

Almost as if it were a sign that I was right about the pediatrician (and her grumpy office worker bees)... I tracked down Sabrina's blood test results with the lab that took the blood... they couldn't fax me the results, but they offered to fax them to the doctor - apparently one test was holding everything up and I said to just send what they had. Well, I called the doctor's office and they grumpily informed me that they gave them to the doctor and that she'd call me when she was ready. Unsympathetic [enter a slew of explatives here].

 

GAH!

 

 

 

Ok, did Dr. K recommend a steroid burst? I would take that email from Dr. K , along with printed pages of his website and printed peer reviewed research articles...take those to your pediatricians office in an envelope and drop them off for the doctor to review. Then make an appointment to go over the recommendations. Just you, not your child. Let the doctor know how things are going and how difficult this is and how big of a change this is in your daughter. Let her know how serious you think this situation is....that your family is in a crisis situation. Talk to the pediatrician about RISKS VS POSSIBLE BENEFITS of just trying to see if the steroid burst works. I mean, I would literally say, "What are the risks of just trying a 5 day steroid burst?" If your pediatrician is not comfortable prescribing the steroid burst, ask if a referral to a rheumatologist would be out of the question and try to see if that doctor will verify that something like that might work in this case. Maybe that will make your doc more comfortable prescribing a steroid burst.

 

What a steroid burst is supposed to do is show whether or not IVIg might be effective. Meaning you should see improvement (Dr. K said between days 3 and 10) in behavior and pandas issues in that time period. For us it was noticed on day 2. The steroid burst cleared up almost all pandas symptoms in my child and for us, cleared up all confusion as to whether or not this was pandas. Then we knew we had to pursue IVIg. For us, we reached the point that there was no choice.

Good luck. ((((hugs))))

[Indigo]

She sounds so similar to my dd...and we went through the same dx process...asperger's maybe, bipolar maybe, social anxiety disorder, some OCD, we even heard schizophrenia at one point when a doctor put her on Concerta and she started hallucinating. Sigh...it's such a tough road!

 

Have you gotten titers taken lately? This will give you at least part of an answer if her titers are high...and the second answer we got was the steroid burst when our "bipolar, asperger, schizophrenic" child suddenly became typical! It was a huge eye opener for us! It is hard to know what to think and believe...I found PANDAS after reading Dr. Kenneth Bock's book--it's a good one.

[Lacy]

Good morning everyone!

 

I don't have an internet connection at home (the only fallback to living in the country) but this was the first place I went to when I got to work this morning. Thank you to everyone for your notes - I appreciate every single one of them!

 

Before I left work on Friday, I wrote Dr. K a thorough e-mail. He surprised me by writing back on Saturday saying it sounded like a clear cut case of PANDAS to him. He thought IVIG would be the way to go, but I need get in touch with his admin and let her know that we haven't tried the steroid bursts yet.

 

I'm trying to lay out in my mind which direction to go next. I'm frustrated still with Sabrina's pediatrician and I really don't think she's my source for reliable help. I'm thinking about the Infectious Disease specialist - maybe he might be the right one to go to. And then Sabrina has an appointment with a pediatric neurologist today... I'm asking myself whether we should be wasting time with that one. The only reason I'm moving forward is because the last PN found inconclusive results around her "sleep center" in Sabrina's brain - it seemed indicative of seizures around that part.

 

Oh! Desperate Mom... we live in central Virginia (about 20 minutes West of Richmond).

 

One last thought... I talked to DH about Dr. K's e-mail and he said we ought to try and consider taking Sabrina to Chicago to see him - if IVIG is what needs to be done. I'm wondering though... will Sabrina be in any kind of shape to be traveling after a procedure like that? I really don't know what's involved with IVIGs so I'm off to research for now.

 

I lied.. seriously, the last thought... Sabrina got her blood test results late last week and nothing came up for the basic food allergies, arthritis or celiac disease. I can't for the life of me remember what the other tests were, but I think one was another to look at strep. Her last titers test she got was in November '08. He said that her levels were considerably lower at that time, but they were still elevated considerably where they should've been.

 

I'm off to get some coffee to wake up. Thanks again all! I'll keep you posted.

[amy s]

She was on Cephlexin (sp?) during that 9 month period. I think it was 250mg and the ID specialist didn't feel comfortable at the time giving her a higher dosage (too much for her weight). She's not on antibiotics now - just the Lamictal

 

We haven't tried the steroid burst... can you give me the skinny on what it's all about?

 

It's funny (not haha funny), but I feel like I've lost control of the situation altogether. I told DH that I'm ready to just stick her in the best children's hospital on the East Coast and tell them I'm not leaving until they figure out what's wrong with my baby! Oh man... I'm a mess today - I keep feeling the tears trying to let go even as I type.

 

What type of doctor is the best to discuss the steroid bursts with? Honestly I'm losing faith in Sabrina's pediatrician. I think she'd blow it off.

 

Almost as if it were a sign that I was right about the pediatrician (and her grumpy office worker bees)... I tracked down Sabrina's blood test results with the lab that took the blood... they couldn't fax me the results, but they offered to fax them to the doctor - apparently one test was holding everything up and I said to just send what they had. Well, I called the doctor's office and they grumpily informed me that they gave them to the doctor and that she'd call me when she was ready. Unsympathetic [enter a slew of explatives here].

 

GAH!

 

 

 

Ok, did Dr. K recommend a steroid burst? I would take that email from Dr. K , along with printed pages of his website and printed peer reviewed research articles...take those to your pediatricians office in an envelope and drop them off for the doctor to review. Then make an appointment to go over the recommendations. Just you, not your child. Let the doctor know how things are going and how difficult this is and how big of a change this is in your daughter. Let her know how serious you think this situation is....that your family is in a crisis situation. Talk to the pediatrician about RISKS VS POSSIBLE BENEFITS of just trying to see if the steroid burst works. I mean, I would literally say, "What are the risks of just trying a 5 day steroid burst?" If your pediatrician is not comfortable prescribing the steroid burst, ask if a referral to a rheumatologist would be out of the question and try to see if that doctor will verify that something like that might work in this case. Maybe that will make your doc more comfortable prescribing a steroid burst.

 

What a steroid burst is supposed to do is show whether or not IVIg might be effective. Meaning you should see improvement (Dr. K said between days 3 and 10) in behavior and pandas issues in that time period. For us it was noticed on day 2. The steroid burst cleared up almost all pandas symptoms in my child ( EDIT: for about 4-5 days only)....and for us, cleared up all confusion as to whether or not this was pandas. Then we knew we had to pursue IVIg. For us, we reached the point that there was no choice.

Good luck. ((((hugs))))

[Lacy]

Went to the pediatric neurologist yesterday and was completely appauled. This guy was so inconsiderate, callus and seemed to take joy in talking over my head. He spent most of our appointment time downing Dr. K (a doctor he didn't even know, but actually dismissed himself from the room so he could research Dr. K), and then he spent the other time acting openly taken aback that our psychiatrist was going the route she was with the Lamictal. This guy was horrible. He wanted to subject Sabrina to another 24hr EEG (ok, no big deal for her - just another bad hair day), and then he wanted to put her out for another MRI - which was by far the worst day of my life. He asked why and I told him what happened with the Verset (sp?) they dosed her with and how it affected her - she couldn't walk for nearly 4 hours after the MRI and was tripping and was sky high - it was AWFUL). He seemed unmoved and shrugged it off saying it was necessary and he would recommend Verset again. It was like this man was purposely trying to send me over the edge. Even the student shadow that sat there looked mortified. Everyone who is sensitive to swearing - cover your eyes, but this guy was flat out a pr!ck!

 

ARRRRGGGHHHH!

 

Ok, I feel better now. I did call Sabrina's pediatrician to tell her I've had it. I'm done playing medical repository for Sabrina and subjecting my baby girl to all of these tests - most have been unnecessary. The pediatrician wanted to know what I wished we could do... and I freely told her if I had my choice - we would have diagnosed this issue when it started years ago, and we would be focusing on how to subdue the meltdowns so she could live a normal child's life. I also told her that of all these tests she's had - the one that keeps coming back with alarming results (the titers tests) - everyone keeps flipping ignoring them. Grrrrrrrr

 

So I'm waiting on Dr. K's secretary to contact me back - I don't think she will though (that's another story). Meanwhile I'm making an appointment with another new doctor who is in the area and supposedly has experience with PANDAS children.

 

Just one more "Argh" for the road - AAAAAAAAAAAAAAAAAAAARRRRRRGGGGHHHHH!

 

Ok, I feel much better now.

[Dedee]

Lacy,

 

The unfortunate experience you had with that awful physician is so similiar to what MANY here have experienced in some form before. So hang in there, finding the right doctor is often one of the most challenging parts of fighting the illness. I can't believe how arrogant some are and how they talk to the parents. Many times they imply that it is some parenting issue and not a physicial issue at all. That is when I want to come un-glued. I can tell you this, when you do find the right doctor, you will feel great relief and validation. That's when you realize that all the frustration and fighting and crying are going to pay off in the end. Keep up the fight. It will all pay off in the end. God bless.

 

Dedee

[Debbie1]

For those of you looking for a doctor in the NY/New Jersey area, we are having a very good experience with a doctor at Columbia (Morgan Stanley Children's Hospital/NY Presbeterian). If anyone would like more specific info on the doctor, please PM me.

[Lacy]

Thanks Dedee for the kind words!

 

I should be grateful that this was my first extremely negative experience with a doctor - so blantant. Arrogant was a perfect adjective to describe this neurologist.

 

I'll keep everyone posted!

Lacy