Familiar Hopelessness

[Lacy]

Edited (again) to let everyone know that I have an update posted on the 2nd page regarding our visit to the immunologist. It's anti-climatic to say the least. Bummer.

 

Edited to say: Our family has never been as brave as Nicole and her family (NBC news story her and her family did was beautiful...and sad). However after contacting a couple doctors today and getting nowhere, I finally took a deep breath and contacted my one and only contact with a NBC12 news reporter here in Richmond. I sent her Nicole's link and explained that we too were desperate for help. I don't know that my contact can or will do anything, but it was the only other step I knew to take.

 

DD is still taking her 2 pills (50mg) of Lamictal a day as well as 250mg of the Cefalexin antibiotic. She was having decent days (not great mind you, but not horrid), and then today she tanked... again.

 

This time I was told that she was crawling around on the floor in her class unplugging the computers. The teacher convinced her to come out and sent her onto her reading class (she needs it to catch up in her reading - thank you PANDAS ). In her reading class she chucked a book at one of the assistants, and then started to be hateful and disrespectful to the teacher. That warranted a moment in the "Cool Down" room that the school made just for her. When the assistant principal went to get her, she darted out of the class and ran away from him. After some chasing, they were able to get her to the Cool Down room where she proceeded to kick the assistant principal. Then she kicked off her shoes and started throwing them at the assist. principal. When she ran out of shoes to chuck at him, she proceeded to spit in his face (mind you, not raspberries... flat out spitting). God bless the assistant principal, that man sure is patient.

 

This is where things went to a new avenue of PANDAS adventure....

 

They said that she calmed down enough to give the guidance counselor a hug, and then DD just lost it. She cried her little eyes out and then reverted to a strange infantile behavior (that she's never in her lifetime done)... sucking her thumb. ((sigh)) They said she seemed so down, and so depressed. She told them she missed her Mommy and Daddy and wanted us to come get her.

 

The assistant principal (who called me at work to tell me all of this) said they felt pretty confident that they could get her onto the bus... you know.. the "small bus". Poor kid. If we can't get this under control she'll be going to middle school on the small bus. We may as well toss in the towel at that point because if we thought we were in h ell now...

 

Next week DD has an appointment with her psychiatrist, dentist (poor kid - this will be the first normal appointment she's had with a dr in too long) and then the first time visit with the new Immunologist.

 

I'm going to just stick my head in the sand. Let me know when I can come back out.

[melanie]

DD is still taking her 2 pills (50mg) of Lamictal a day as well as 250mg of the Cefalexin antibiotic. She was having decent days (not great mind you, but not horrid), and then today she tanked... again.

 

This time I was told that she was crawling around on the floor in her class unplugging the computers. The teacher convinced her to come out and sent her onto her reading class (she needs it to catch up in her reading - thank you PANDAS). In her reading class she chucked a book at one of the assistants, and then started to be hateful and disrespectful to the teacher. That warranted a moment in the "Cool Down" room that the school made just for her. When the assistant principal went to get her, she darted out of the class and ran away from him. After some chasing, they were able to get her to the Cool Down room where she proceeded to kick the assistant principal. Then she kicked off her shoes and started throwing them at the assist. principal. When she ran out of shoes to chuck at him, she proceeded to spit in his face (mind you, not raspberries... flat out spitting). God bless the assistant principal, that man sure is patient.

 

This is where things went to a new avenue of PANDAS adventure....

 

They said that she calmed down enough to give the guidance counselor a hug, and then DD just lost it. She cried her little eyes out and then reverted to a strange infantile behavior (that she's never in her lifetime done)... sucking her thumb. ((sigh)) They said she seemed so down, and so depressed. She told them she missed her Mommy and Daddy and wanted us to come get her.

 

The assistant principal (who called me at work to tell me all of this) said they felt pretty confident that they could get her onto the bus... you know.. the "small bus". Poor kid. If we can't get this under control she'll be going to middle school on the small bus. We may as well toss in the towel at that point because if we thought we were in h ell now...

 

Next week DD has an appointment with her psychiatrist, dentist (poor kid - this will be the first normal appointment she's had with a dr in too long) and then the first time visit with the new Immunologist.

 

I'm going to just stick my head in the sand. Let me know when I can come back out.

 

 

Oh my I get this its my exact story and I feel for you and your daughter Im so sorry shes going throuh this its soooo hard to watch this happen to our children ...oh wait I have to go take my so to another psychologist now will watch and see how things go with you

[bronxmom2]

Hi Lacy, I just wanted to say... how awful, I'm sorry you're going through this.

 

I also can't help but wonder... and I know if might not be feasible for your family, but... do you think it would be easier for her if she took a break from school?

[lss]

 

Lacy,

 

Sorry to hear that your child is having such a hard time now. I'm wondering why she is on the lamictal since this is for bi-polar? Was this given by a neurologist? I've been told that the best type of doctor to use for Pandas would be a infectious disease or rheumatology doctor by a microbiology/immunology doctor. IMO most of these Panda children do not do well on these psych-drugs, and perhaps this is causing a issue with your child.

 

Linda

[pmoreno]

Edited to say: Our family has never been as brave as Nicole and her family (NBC news story her and her family did was beautiful...and sad). However after contacting a couple doctors today and getting nowhere, I finally took a deep breath and contacted my one and only contact with a NBC12 news reporter here in Richmond. I sent her Nicole's link and explained that we too were desperate for help. I don't know that my contact can or will do anything, but it was the only other step I knew to take.

 

DD is still taking her 2 pills (50mg) of Lamictal a day as well as 250mg of the Cefalexin antibiotic. She was having decent days (not great mind you, but not horrid), and then today she tanked... again.

 

This time I was told that she was crawling around on the floor in her class unplugging the computers. The teacher convinced her to come out and sent her onto her reading class (she needs it to catch up in her reading - thank you PANDAS ). In her reading class she chucked a book at one of the assistants, and then started to be hateful and disrespectful to the teacher. That warranted a moment in the "Cool Down" room that the school made just for her. When the assistant principal went to get her, she darted out of the class and ran away from him. After some chasing, they were able to get her to the Cool Down room where she proceeded to kick the assistant principal. Then she kicked off her shoes and started throwing them at the assist. principal. When she ran out of shoes to chuck at him, she proceeded to spit in his face (mind you, not raspberries... flat out spitting). God bless the assistant principal, that man sure is patient.

 

This is where things went to a new avenue of PANDAS adventure....

 

They said that she calmed down enough to give the guidance counselor a hug, and then DD just lost it. She cried her little eyes out and then reverted to a strange infantile behavior (that she's never in her lifetime done)... sucking her thumb. ((sigh)) They said she seemed so down, and so depressed. She told them she missed her Mommy and Daddy and wanted us to come get her.

 

The assistant principal (who called me at work to tell me all of this) said they felt pretty confident that they could get her onto the bus... you know.. the "small bus". Poor kid. If we can't get this under control she'll be going to middle school on the small bus. We may as well toss in the towel at that point because if we thought we were in h ell now...

 

Next week DD has an appointment with her psychiatrist, dentist (poor kid - this will be the first normal appointment she's had with a dr in too long) and then the first time visit with the new Immunologist.

 

I'm going to just stick my head in the sand. Let me know when I can come back out.

 

I feel for you and I know just what you are going through. I had recently posted that my daughter, Gaby, was doing better (and she was for a short time). Then she got another herpes lesion on her lip. I gave her valtrex for a week (first time ever for this med) and I don't know if it was from this med or just the virus itself, but she has become extremely irritable & aggressive & sounds exactly like your daughter in this post - she, too, has been hitting the teachers, running out of the school, yelling at everyone, took her shoes & socks off on the bus (they won't let her ride it right now - I have to drive her). Even though some people at school are understanding, I know that people just look at us and think that we should do something to control her.It's an up and down thing - good for a week or two to get your hopes up - then back down.

[peglem]

 

Lacy,

 

Sorry to hear that your child is having such a hard time now. I'm wondering why she is on the lamictal since this is for bi-polar? Was this given by a neurologist? I've been told that the best type of doctor to use for Pandas would be a infectious disease or rheumatology doctor by a microbiology/immunology doctor. IMO most of these Panda children do not do well on these psych-drugs, and perhaps this is causing a issue with your child.

 

Linda

 

You're right that lamictal is sometimes prescribed for bipolar, but it is technically an antiseizure med. My daughter has been on lamictal for nearly 2 years now and it has really helped...we had tried many ssri's and antipsychotics in the past. All of those either made her worse or had no effect at all. She was put on lamictal by a neurologist for suspected seizures (or possible migraine). It has really reduced some pretty severe ragey behaviors and she just seems to feel better overall. While I hate the idea of her being on it, things had gotten very, very bad before we tried it and my daughter was absolutely miserable. Now I'm kinda afraid to try taking her off it.

[colleenrn]

Lacy,

I am so sorry to hear what you are going through. PANDAS is ######, but don't give up hope b/c things can and will get better.

 

If she was doing pretty well until recently, my opinion is that she needs a much higher dose of Cephalexin OR another antibiotic asap. I think I remember you having trouble getting antibiotics??- have you ever had her on Azithromycin? 250mg of cephalexin is a really low dose and it is very possible that she has strep somewhere. I live in Charlottesville which is only about an hour from Richmond. I take my children to a family practice with nurse practitioners, one MD and one DO, who are all great. The NP that we see agreed back in October to put 3 of my children on daily Zithromax. I have bombarded her with every PANDAS article out there and have shared a lot of other PANDAS children's stories with her and she is most definitely a "believer". If you can't get any doc in Richmond to switch her to Zith or increase the cephalexin, I know my NP would be helpful if you could travel up to C'ville.

 

Hang in there!!

Colleen

[melanie]

Lacy,

I am so sorry to hear what you are going through. PANDAS is ######, but don't give up hope b/c things can and will get better.

 

If she was doing pretty well until recently, my opinion is that she needs a much higher dose of Cephalexin OR another antibiotic asap. I think I remember you having trouble getting antibiotics??- have you ever had her on Azithromycin? 250mg of cephalexin is a really low dose and it is very possible that she has strep somewhere. I live in Charlottesville which is only about an hour from Richmond. I take my children to a family practice with nurse practitioners, one MD and one DO, who are all great. The NP that we see agreed back in October to put 3 of my children on daily Zithromax. I have bombarded her with every PANDAS article out there and have shared a lot of other PANDAS children's stories with her and she is most definitely a "believer". If you can't get any doc in Richmond to switch her to Zith or increase the cephalexin, I know my NP would be helpful if you could travel up to C'ville.

 

Hang in there!!

Colleen

 

 

My son was acting the same way !!!he is on aztith 250 daily also buspar and tenex he seems much better He was taking depakote and abilify when things were really really REALLY bad dec jan I tried so many meds Lamictial, Trileptial hes allergic to those 2 Everyone is talking about topamax its the same kind of med (I think) but he just got worse anyway our kids do good for a while on some meds and then bam ! they seem to get symptoms bad bad symptoms again and believe me hes nowhere where I would like him to be But I did get him on Home instruction for 2 months (anxiety )he went back and things are better hes 15 (April 30th) so hes older the bus oh yea Iget it my son goes to a se private school special bus and still has crap I have to take my 13 yr old to the md at 10 shes complaining of sore throat here we go again!! Good luck

[Lacy]

[Colleen - If you don't mind, would you PM me the name of the practice and doctor/nurses you're dealing with? We have travelled up to Charlottesville on a couple of occassions - pediatric geneticist appt and developmental pediatrician - no luck on either visit. We're definitely interested in DD seeing a believer!]

 

Wow, you all are great listeners - thank you so much for the kind words! It's a nice morale booster when you've got such a wonderful group of people to lean on.

 

After talking to various people last night (non-believers and belivers alike), I had a huge question mark weighing me down. Does DD have more control over her meltdowns & rages than we give her credit for. She has never thrown a fit at home, she rarely rages in public with us, she's really defiant for the sitter, but the sitter doesn't let her get away with it... but at school - that's where we have the biggest problem.

 

We'd tossed around the idea of homeschooling her, but folks I'll be the first to admit that I am NOT teacher material. I can handle homework - barely. If we could financially afford for me to go part time or stay at home - just so I could hover over her at school, we would, but it's not an option. We just have too much debt that will take us (at our best) a few years to erase.

 

I just wonder why is she reserving the majority of her meltdowns & rages for school. Is it over stimulation? With the right motivation (last week she had to earn the right to attend a friend's birthday party), she seems a little more capable of reeling herself in before it gets too out of control. So does that mean she truly can control all episodes?

 

And then another frustration... how, as a parent, do we punish her for her bad days? Grounding her from toys/movies/tv, etc doesn't work. Spankings... don't work (plus at her age they're not really effective - she's tough). I'm at a loss. Sometimes I wonder if she had been raised by my Mom (who was worse than a Nun), would she have had the same problems.

 

Ok, I better get back to work... for now anyways.

[dcmom]

Hi Lacey,

 

I am so sorry for what you and your daughter are going through. This really sucks (sorry only word I could think of) for these kids; it must be so confusing and horrifying for them.

 

I only wanted to add, my daughter is the opposite. She holds together beautifully at school, and crumbles at home. The main reason (I think), is that all of her OCD issues are related to things she has to do at home (get dressed, eat, use the bathroom), and when she has to do those is when the rages and/or anxiety begin. Does your daughter have OCD issues, and if so are they related to things at school?

 

Don't question yourself, and hang in there.

[Lacy]

Hi Lacey,

 

I am so sorry for what you and your daughter are going through. This really sucks (sorry only word I could think of) for these kids; it must be so confusing and horrifying for them.

 

I only wanted to add, my daughter is the opposite. She holds together beautifully at school, and crumbles at home. The main reason (I think), is that all of her OCD issues are related to things she has to do at home (get dressed, eat, use the bathroom), and when she has to do those is when the rages and/or anxiety begin. Does your daughter have OCD issues, and if so are they related to things at school?

 

Don't question yourself, and hang in there.

 

DD has been diagnosed as OCD, but I don't think it's as bad as most with OCD. Her OCD issues are more along the lines of over obsessing with the weather (specifically tornadoes), and obsessing about death - and crying about people that died that she has little to no memory of. God forbid the sky look a little too dark, or for there to be even a little bit of wind to set her off panicking. To my knowledge she's lightened up a little bit with the scrubbing the counters in her class. The first two tornadoes & death are the most prominent. It's funny (not haha funny) how the grass is always greener on the other side. Sometimes I wish it were opposite for us - great at school, not so great at home.

[dcmom]

Oh Lacy, I agree. It is easier to have her crumble at home. So far, if I can get her to school, she holds it together. That is a comfort to me. It must be such a worry for you during the day- wondering how her day is going. It is so hard to even focus on anything else.

 

There must be something at school that triggers this for her. Is there something that increases her anxiety level? Outside of her pandas, was she more anxious at school?

 

While we are out of the worst part of the pandas, I can see my dd is always kind of on the edge. If anything bothers her, it raises her anxiety level to where she is over the top crying or raging. I think it is very hard (if not impossible) for her to control at that point. Our child psychologist has been helpful with giving me strategies to handle some of the anxieties.

 

Best wishes to you and dd...

[EAMom]

Hi Lacy,

 

School (and homework) is so tough for PANDAS kids. Stress just makes PANDAS symptoms worse. I agree with Colleen about switching to Azith. I would also start giving her Advil (ibuprofen) every morning. How much does your dd weigh?

 

I wouldn't worry about punishing her for her behaviors (esp. if it doesn't work anyway!!). Her brain is too inflamed...she really isn't in control of herself. Poor thing! My dd was better at holding it together at school (vs. home). Every kid is a little different in that respect.

 

Colleen's NP sounds like a great resource.

[Indigo]

I think it's important to remember that anything can set the kids brains into the cycle of getting upset and then they just cannot calm themselves down. As hard as it is to take this, they have to rage it out and exaust themselves. PANDAS affects the brains ability to calm down when met with a stressor. I would not punish her for this--I'm sure it must be terrifying for her.

 

I would support the idea that others have mentioned of trying Azith. For us, dye free Azith is what helps the most.

[Lacy]

Today is little girl's day of doctor appointments. She starts her morning off with a much needed visit to the dentist... which brings a quick question to mind...

 

Between me and DH, we have fairly strong and healthy teeth. We've noticed DD's two front teeth are slightly discolored. I don't know if it's because we're on well water and/or a mix of the different medications she's been on. They're her adult teeth and I'm really interested to hear what the dentist has to say about it. I wondered if anyone else has noticed anything like this with their kids? And for the record, she's very limited to drinking any soda and when she does it's Sprite or the rare Root Beer (she loves the stuff but it upsets her belly)... and I help her brush her teeth everyday.

 

The second appointment is around 1pm this afternoon - a first time visit to the Immunologist specialist. I'm really crossing my fingers tight that she'll be interested in listening and helping us, but I think I need to realize that I'm probably getting my hopes up for nothing ... I mean, in reality, we've seen over 15 different types of doctors and specialist and only 1 of those doctors seemed slightly interested, but will readily admit that he doesn't feel comfortable upping her antibiotics or treating her via any different method.

 

Thanks so much to Colleen's NP suggestion I am hoping to hear from her office early this week to set up an appointment (paperwork already filled out and mailed yesterday).

 

I'll keep everyone posted. Thanks for your shoulders!