Dark Times Again

[Lacy]

I'm completely depressed. Without going into full details (because I have in various other places on the PANDAS forum already), our DD has PANDAS, however until just recently she appeared to be in remission with the aide of a 9 month course of antibiotics. After 5 months she started showing signs of behavioral issues, and just recently we restarted the "Child Studies" meetings at school.

 

Over the weekend DD had what in the beginning we dubbed, a "grand mal meltdown". The "lights went out" in her eyes, and she threw an ever-loving rager in the middle of a store. I stayed calm (thank goodness for my Lexapro keeping me even-keeled) and ushed DD to the closest bathroom. Of course everyone stared at what I'm certain they thought was a "special needs" child. I also couldn't help but wonder if they thought I was kidnapping some poor helpless child. It took me and my DH to get her to the bathroom - she was thrashing around so hard and screaming "NO! NO! NOOOOO!!". It was terrible.

 

Once in the bathroom I gave her a hard swat to the behind - it used to be the only thing that would jolt her back to reality. The light slowly came back in her eyes - just enough for me to soothingly tell her to look me in the eyes. Her eyes almost appeared dialated - seizure like as I've told many doctors. I kept coaxing her and finally she looked me in the eyes. I asked her if she wanted me to 'kiss the button' (the middle of her forehead - kisses seem to calm her down more), and she sort of nodded - still coming down. Finally I got her to calm down enough to kiss her, and she just grasped onto me in a huge hug. Of course this made me feel like breaking down myself, but I kept control.

 

We cooled down her face with a wet paper towel and exited the bathroom after 10 minutes from entering.

 

Today I'm just feeling so down. I called her Infectious Disease specialist to see if he can tell me how her ASO/Titers blood work came back. About a week and a half ago we took her to see him and he ran the blood work and put her back on her antibiotics.

 

I know I'm just preaching to the choir, but I really wish there was a magic solution to everything. I'm so tired of my poor DD being a pin cushion for all of these blood tests that I feel tell us something, but nobody can interpret it. I hate that she's not able to have a smoother time in school. I hate that she is going through this nightmare... us too.

 

Ok.. sorry. Just had to release some tension and throw a pity-party for me.

[myrose]

Lacy I am sorry to hear about this. I hope all takes a turn for the better. I was though just curious if you have ever had an EEG on her?

If so was it a 20 minute or the 24 hour w/video monitoring.

[Lacy]

Lacy I am sorry to hear about this. I hope all takes a turn for the better. I was though just curious if you have ever had an EEG on her?

If so was it a 20 minute or the 24 hour w/video monitoring.

 

Thank you for the well wishes!

 

In the beginning of all of the nightmare - about a year and a half ago, we did have two EEGs done on her. The first one was the 20 minute one and they discovered some questionable patterns that would be indicitive of seizures surrounding her sleep areas of the brain. They then did a 24 hour one (minus the video)... that still gave them reason to want to do a MRI. The MRI results were clear and the pediatric neurologist explained to us that there wasn't much more he could do.

 

Historically on her blood tests for ASO/Titers levels, they've been off the charts. I can't recall the levels of where the different tests should've been but they were always astronomical... they never wanted to go down. Finally after the 9 month course of antibiotics they lowered a little bit, but nothing near 'normal'.

 

I'm waiting on her Infectious Disease specialist to call me back - hopefully today. Not that knowing what her ASO/Titers levels were is really going to help me, but I am curious if they're back up to the astronomical numbers again.

[myrose]

My daughter showed discharges and spikes to the right side of her brain. It looked like seizure activity but she has never had a seizure.

They concluded that it could mean a predisposition for seizures to come. They suggested Topamax when the violent head bob started and in all our amazement the tics went completely away on this medicine. Its still puzzling to me why a seizure med would take it all away. Anyhow we have since learned that she has a heavy metal load in which is concentrated on the right side of her brain as well. (Same place as the discharges/spikes were) Not sure of the connection here but it seems suspicious to me. We are detoxing the metals now and then we are going to wean off the topamax and see what happens.....

 

About the titers (I may be WRONG on this but) from what I have come to understand....everyone has a different baseline and so its hard to tell what is elevated and what is just normal for one paticular child. So maybe when you got the lower titer reading it is just his normal level???? Just a thought.....

Please keep me posted as I am curious to what steps we will take next if there is no improvement after we detox and come off topamax.

[amy s]

(((hugs)))) I don't know what to say. I hope all these kids get better and fast.

[Dedee]

Lacy,

 

Gosh I am so sorry to hear what your daughter is going through. You said she had been on antibiotics for nine months, is she still on them? My son gets some symptoms when my other kids get strep, even though he is on antibiotics and doesn't culture out himself. It usually passes in a couple of weeks. It sounds as if this is more serious. I am interested to see what you find out about her titers. I know you feel really bad for your daughter. It does sometimes seem so unfair. But I am telling you that your little girl is very lucky to have a mother who loves her so much that she is willing to do anything to get her help. Many parents will blindly accept whatever the first doctor tells them and their poor kids are misdiagnosed their entire childhood with horrible consequences. Yes, it is terrible that she must endure these dark times. But you are her light, and you will see her through. She couldn't ask for more.

 

Dedee

[amy s]

DeDee, what a nice thing to write. I almost felt like it was meant for me personally. I guess it is meant for all of us. Thanks for the reminder.

[nicm930]

Lacy, I am sorry that your daughter is going through this again. My daughter's eyes get that same look when she is in a rage. It looks like her eyes are black. It is scary. I hope you get some answers from the ID Doc. This PANDAS thing just really stinks. I feel for all these kids.

[Indigo]

Hugs...we're at a very similar place right now.

[faith]

My daughter showed discharges and spikes to the right side of her brain. It looked like seizure activity but she has never had a seizure.

They concluded that it could mean a predisposition for seizures to come. They suggested Topamax when the violent head bob started and in all our amazement the tics went completely away on this medicine. Its still puzzling to me why a seizure med would take it all away. Anyhow we have since learned that she has a heavy metal load in which is concentrated on the right side of her brain as well. (Same place as the discharges/spikes were) Not sure of the connection here but it seems suspicious to me. We are detoxing the metals now and then we are going to wean off the topamax and see what happens.....

 

About the titers (I may be WRONG on this but) from what I have come to understand....everyone has a different baseline and so its hard to tell what is elevated and what is just normal for one paticular child. So maybe when you got the lower titer reading it is just his normal level???? Just a thought.....

Please keep me posted as I am curious to what steps we will take next if there is no improvement after we detox and come off topamax.

 

 

 

hi myrose,

how can they tell she has metals, and how what type test did they do to find that out? Also, how are you detoxing metals right now, what method?

 

Faith

[Lacy]

Hello all!

 

Thank you so much for the well wishes, and kind words. I'm sorry for the long hiatus, but I was internet-less for a few days - how awful!

 

The ID specialist came back with some interesting results. He said that the last time we ran these blood panels, the levels were off the charts. While they're still not in the "normal" range, they've come down considerably. ::sigh:: Yes, this is good news... but what does it tell us?!

 

The antibiotics don't appear to be helping like they did last time which is really frustrating and leaves us feeling hopeless. DD has had two grand mal meltdowns in the past two weeks and I only see things getting worse - not better. Today she had a completely meltdown at school... she was hissing and clawing at her teachers, she was trying to spit, hit and kick. It was terrible. She hid under desks, and cried uncontrollably. I tried talking to her from under the principal's desk on her speaker phone and I couldn't coax her out. Finally we gave up and DH went to pick her up. ::sigh::

 

When I talked to her ID specialist a week ago about her test results, he said that if nothing changes in her behavior in the next 4 to 6 weeks (max), then the antiobitics probably aren't helping like they did last time, and we are basically starting at square one. He's told us that he doesn't believe he'll be able to further assist. ::BIG SIGH:: So we're starting all over. I called her pediatrician this afternoon and left a message asking that she call me back. I'm just waiting on that call now.

 

I also called the pediatric sleep doctor's office and they're saying that they're only taking sleep apnea (sp?) patients - I don't think DD is having that problem. I did a Google search and called an office that specializes in Pediatric Mood Disorders, but I still don't feel like I'm on the right path. Where's my sobbing smiley face when I need it??

 

I'll keep you all posted as updates come up. No child or family should have to go through this nightmare alone. I feel so blessed that you all are here with me, and I feel so sad that you all are here experiencing the same/similar problems. Hugs to everyone...

[Lacy]

Update...

 

I talked to the pediatrician late yesterday afternoon, and while she still pushed the psychiatrist again (and I pushed against that), she gave me some other options. This time we're bringing out the cavelry (ahem.. again), and we're getting DD set up with appointments with a

 

Pediatric Neurologist (take two)

Pediatric Sleep/Neurologist

Pediatric Psychiatrist who has had experience with PANDAS children

 

DD was able to get an appointment for next week with the Pediatric Sleep/Neurologist - so that was good. The regular Pediatric Neurologist is scheduled for February (yuck), but she'll be on a waiting list for cancellations - usually something comes up sooner. And the Pediatric Psychiatrist's office is forwarding me the necessary paperwork that I need to fill out before making an appointment.

 

So I'm going through all the motions - hoping something new will come of this. My Mommy-radar-gut-feelings tell me that we can do something for DD... I just need to find someone who can help. The antibiotics aren't working this time, but she's still on them... for now.

 

I'll keep everyone posted.

[EAMom]

Lacy, what antibiotic is your dd on? Have you tried Azithromycin? That was what worked for our dd (the 4th antibiotic we tried!). We found our OCD specialist child psychiatrist (PANDAS experience) to be more helpful that all our other docs...she was a true believer in the PANDAS diagnosis.

[Lacy]

Lacy, what antibiotic is your dd on? Have you tried Azithromycin? That was what worked for our dd (the 4th antibiotic we tried!). We found our OCD specialist child psychiatrist (PANDAS experience) to be more helpful that all our other docs...she was a true believer in the PANDAS diagnosis.

 

Oops! Sorry, I didn't notice that you had asked me a question. I'm in another world today.

 

DD is allergic to penicillan and the doctor had the best luck with Cephlax (sp)? The doctor was a little wary about putting her on the "z packs"... isn't that what Azithromycin is? I could be totally wrong. So much to remember.

[EAMom]

Hi Lacy,

Several people on this forum have found Azithromycin (yes, I think that's the z Pack) to work well for PANDAS. It is immune modulating and it gets intracelllular strep (which Keflex doesn't do a very good job at). We tried Augmentin, Amoxicillin, and a stronger version of Keflex ...Azithromycin was the 4th antiibiotic we tried and the only one that resulted in a remission of symptoms.

IMO, if all "heck" is breaking loose and you are feeling hopeless it would be worth a try...