Familiar Hopelessness

[Dedee]

Lacy,

 

You have gotten great advice here. I just want to say how sorry I am for your daughter and your family. I can feel your anguish and know so many here can relate to what you are going through. I pray that things improve quickly. I also hope that you are able to find a knowledgable supportive physician soon. That will ease your burden tremendously. I agree with the others regarding the azith and advil. I believe it would be very beneficial in this situation. I know you must be exhausted. What your family is going through is horrible. There is no easy way to get through this, so don't be hard on yourself. You are doing a great job. I am so proud of all the parents here who are such persistant advocates for their children. I am praying for your family.

 

Dedee

[colleenrn]

Lacy,

I wish you the best of luck today! Let us know what happens. I am hopeful that my NP will give you Zith. Let me know how it goes.

Colleen

[nojo]

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!

Hi Lacy. Are you in Richmond, Virginia? I suspect my daughter has PANDAS, and I am at a loss as to who to see to help us. We are beyond our pediatrician, I would love to get the name of the NP from you or Colleen. Thanks for any help. Noelle

[Lacy]

Hi Lacy. Are you in Richmond, Virginia? I suspect my daughter has PANDAS, and I am at a loss as to who to see to help us. We are beyond our pediatrician, I would love to get the name of the NP from you or Colleen. Thanks for any help. Noelle

 

Hi Noelle! I'm loving your name - it's DD's middle name - spelled the same exact way.

 

Yep, we live about 40 minutes West of Richmond (we live in the "sticks") but when we "go to town" and work, it's all in the Short Pump area. Colleen's NP office just received my paperwork (they need that before they can make an appointment) and called me today. They're SO pleasant to speak with and I can't say as much about the many doctor offices and staff we speak to on almost a weekly basis.

 

I'm with you - this PANDAS stuff is completely over our Ped's expertise. In fact, I'm quickly learning that there doesn't appear to be anyone capable in the Richmond area to handle this. The one doctor who sounded like she'd be the right ticket doesn't accept insurance - so it's out of pocket expenses ($650 for the initial visit and $225 for subsequent visits... oh and if you want to talk to her on the phone for a consult, it's $7.50 a minute).

 

Today we saw an Immunologist at the MCV Children's Pavilion. Her name was Dr. Anne-Marie Irani, and while extremely polite she was definitely not a PANDAS believer. She kept to her opinion that we needed to seek help from psychiatrists. ((sigh)) Tomorrow I'm calling Cole's NP to schedule DD's appointment. I'm hoping for better results. At this point, I'm just desperate to find a willing ear ... someone who will go the extra mile with us instead of shrugging this off and looking at us as if we're poor unfortunate souls who need to get over their angst of getting their daughter psychiatric help.

 

I wonder if perhaps it would be ethical and appropriate to gather a combined list of people we've seen that haven't been able to help us... or sort of help us. I certainly wouldn't want to upset the doctors (except for that one - Grrrrr), but I don't know about anyone else but I am getting tired of paying these Specialist co-pays for visits that turn up nada.

[nojo]

Hi Lacy. Are you in Richmond, Virginia? I suspect my daughter has PANDAS, and I am at a loss as to who to see to help us. We are beyond our pediatrician, I would love to get the name of the NP from you or Colleen. Thanks for any help. Noelle

 

Hi Noelle! I'm loving your name - it's DD's middle name - spelled the same exact way.

 

Yep, we live about 40 minutes West of Richmond (we live in the "sticks") but when we "go to town" and work, it's all in the Short Pump area. Colleen's NP office just received my paperwork (they need that before they can make an appointment) and called me today. They're SO pleasant to speak with and I can't say as much about the many doctor offices and staff we speak to on almost a weekly basis.

 

I'm with you - this PANDAS stuff is completely over our Ped's expertise. In fact, I'm quickly learning that there doesn't appear to be anyone capable in the Richmond area to handle this. The one doctor who sounded like she'd be the right ticket doesn't accept insurance - so it's out of pocket expenses ($650 for the initial visit and $225 for subsequent visits... oh and if you want to talk to her on the phone for a consult, it's $7.50 a minute).

 

Today we saw an Immunologist at the MCV Children's Pavilion. Her name was Dr. Anne-Marie Irani, and while extremely polite she was definitely not a PANDAS believer. She kept to her opinion that we needed to seek help from psychiatrists. ((sigh)) Tomorrow I'm calling Cole's NP to schedule DD's appointment. I'm hoping for better results. At this point, I'm just desperate to find a willing ear ... someone who will go the extra mile with us instead of shrugging this off and looking at us as if we're poor unfortunate souls who need to get over their angst of getting their daughter psychiatric help.

 

I wonder if perhaps it would be ethical and appropriate to gather a combined list of people we've seen that haven't been able to help us... or sort of help us. I certainly wouldn't want to upset the doctors (except for that one - Grrrrr), but I don't know about anyone else but I am getting tired of paying these Specialist co-pays for visits that turn up nada.

 

 

We live in Short Pump, maybe we can meet for coffee sometime. I spoke with Irani's nurse, and she pretty much said to not waste our time. I'd love to compare dr. notes, I'm sorry you had to go in for that. It can be an all day experience going to MCV. I think she would change her mind after a flare up with us! The change is so dramatic, it really is hard to ignore, or say that this is in my daughters mind. I don't see how it would be unethical to help each other. I'll send you my info so we can catch up. It is nice to know there is someone who understands nearby.

 

Noelle

[dcmom]

Doctors can be so frustrating.

 

I wouldn't totally rule out psychiatrists. We recieved our original diagnosis from a great psychiatrist, who gave us a prescription for prophylactic antibiotics. Also, my daughter's psychologist called me today with the phone # of a colleague (psychiatrist) who would speak to me about plasma pheresis. I am sure they are rare, and I would ask them up front (before you pay the big $) if they believe in pandas and would help you treat with antibiotics if necessary.

[michele]

I am so confused as to the"right "treatment for the PANDAS OCD. Right now the psychiatrist keeps trying different meds on him or upping the dosages. Next month we see a new psychiatrist who specializes in Aspergers and TS/ OCD. It is so hard to know who to listen to. Neurologist says change one med. Psychiatrist says switch another med. My head is spinning. Nothing seems to cure the symptoms anyways. I can't find a Dr. to try the azith but they will all give out psych meds. Wouldn't it be nice if NIMH gave a clear cut way to treat so all Dr's weren't guessing and doubting if it is real? Our psych won't write antibiotics. Mentally exhausting.

Doctors can be so frustrating.

 

I wouldn't totally rule out psychiatrists. We recieved our original diagnosis from a great psychiatrist, who gave us a prescription for prophylactic antibiotics. Also, my daughter's psychologist called me today with the phone # of a colleague (psychiatrist) who would speak to me about plasma pheresis. I am sure they are rare, and I would ask them up front (before you pay the big $) if they believe in pandas and would help you treat with antibiotics if necessary.

[melanie]

I am so confused as to the"right "treatment for the PANDAS OCD. Right now the psychiatrist keeps trying different meds on him or upping the dosages. Next month we see a new psychiatrist who specializes in Aspergers and TS/ OCD. It is so hard to know who to listen to. Neurologist says change one med. Psychiatrist says switch another med. My head is spinning. Nothing seems to cure the symptoms anyways. I can't find a Dr. to try the azith but they will all give out psych meds. Wouldn't it be nice if NIMH gave a clear cut way to treat so all Dr's weren't guessing and doubting if it is real? Our psych won't write antibiotics. Mentally exhausting.

Doctors can be so frustrating.

 

I wouldn't totally rule out psychiatrists. We recieved our original diagnosis from a great psychiatrist, who gave us a prescription for prophylactic antibiotics. Also, my daughter's psychologist called me today with the phone # of a colleague (psmed but no antibiotics ychiatrist) who would speak to me about plasma pheresis. I am sure they are rare, and I would ask them up front (before you pay the big $) if they believe in pandas and would help you treat with antibiotics if necessary.

 

 

OMG your story is the same as mine we just stoppes some meds and things did get better Hes on tenex,buspar and lexapro5mg

I think the buspar was soooo helpful but it takes a while to work maybe ask the PSY to try that its redic that they will perscribe so much and not an antibiotic unreal how old is your child mine is 15

[michele]

I feel your frustration!

Mine is seven year old boy. Been dealing with PANDAS tics since he was one. Really got bad at age 5 after vaccines. Now as he ages the ADHD and moodiness and obsessive thoughts have increased and the tics change. Right now the psych wants his Abilify up to 15 mg which I think is alot. She said all matabolize things differently. Next week she told me to add Celexa for the OCD and anxiety 15 mg. We have stopped the ADHD meds for now since none seemed to help and he was getting a butt scratching compulsive thing from irritation from loose bowel movements on Strattera. Every med seems to have a side effect that has to be dealt with. It is all a guessing game. He seems better for awhile when we up the abilify but then it stops working. I just want the right diagnosis and the right treatment.

 

I am so confused as to the"right "treatment for the PANDAS OCD. Right now the psychiatrist keeps trying different meds on him or upping the dosages. Next month we see a new psychiatrist who specializes in Aspergers and TS/ OCD. It is so hard to know who to listen to. Neurologist says change one med. Psychiatrist says switch another med. My head is spinning. Nothing seems to cure the symptoms anyways. I can't find a Dr. to try the azith but they will all give out psych meds. Wouldn't it be nice if NIMH gave a clear cut way to treat so all Dr's weren't guessing and doubting if it is real? Our psych won't write antibiotics. Mentally exhausting.

Doctors can be so frustrating.

 

I wouldn't totally rule out psychiatrists. We recieved our original diagnosis from a great psychiatrist, who gave us a prescription for prophylactic antibiotics. Also, my daughter's psychologist called me today with the phone # of a colleague (psmed but no antibiotics ychiatrist) who would speak to me about plasma pheresis. I am sure they are rare, and I would ask them up front (before you pay the big $) if they believe in pandas and would help you treat with antibiotics if necessary.

 

 

OMG your story is the same as mine we just stoppes some meds and things did get better Hes on tenex,buspar and lexapro5mg

I think the buspar was soooo helpful but it takes a while to work maybe ask the PSY to try that its redic that they will perscribe so much and not an antibiotic unreal how old is your child mine is 15

[Lacy]

Update for everyone (I hated to open a new thread for this):

 

Sabrina was on Spring Break all last week and was in her 3rd/4th week of antibiotics. She was with us so there wasn't any major drama.

 

This week Sabrina has finished up week 4 of the pink stuff and will be starting her new bottle tomorrow for week 5. Now then, guess what? Every day this week she's had fantastic days at school! This hasn't happened since before November of last year - remember, she was on the long term antibiotics and then after 4 months of being off of them she went back to uncontrolled? I'm desperately crossing my fingers that the antibiotics are finally kicking in. They were giving her the lowest dosage possible (if you ask me), so no wonder it took forever.

 

I'm definitely not relaxing at all. Even if we get 1 straight month of fantastic behavior I'll probably still be experiencing post traumatic stress disorders. Tomorrow is another day and so I'll hold my breath and see. I'll keep you all posted.

 

Side note - Sabrina's next appointment is with a new doctor that *supposedly* has experience with PANDAS. It's scheduled for May 5th. If things continue to go well at school, I plan to talk to this doctor about what we've witnessed with the obvious success of the antibiotics and see what she says. Ultimately if we can slowly take Sabrina off the Lamictal, that'd be my preference. I still don't think it ever helped.

 

Extra side note - Yesterday was day 4 for good days in a row. She's so proud of herself. I called her teacher yesterday afternoon and her teacher said it was a beautiful side to Sabrina that she's missed. She said the change was as if someone flipped a switch. Apparently her reading picked up almost immediately and that she's been so sweet, caring and having a better time interacting with her friends. (They need to add the happy/crying smiley to cover exactly how I feel).

[T_Mom]

Lacy--That is GREAT news! Thanks for sharing this with us.

I hope and pray the antibiotics continue to "kick" this once and for all and there is significant improvement week to week--

 

We continue right now on antibiotics (therapeutic strength) for 4+ months. Recent steroid burst, and I am happy to say I see our child back to herself, essentially 100%, schoolwork as well as personality.

 

Best--

TMom

[mom2ty]

Your daughters great week sheds hopefullness to all who read. May she continue to recover. Healing wishes

[Lacy]

Last week was her first official fantastic week at school since going downhill this past November. Unfortunately today I've already gotten my first call from school saying she was having a rough morning. Her retort to the assistant principal was to say that her medicine wasn't working and that's why she was being bad. Hmm.. I'm thinking we talk too much in front of her sometimes. I don't want her to use that as an unecessary crutch.

 

Anyways, I'm trying not to get too down yet. I'll continue to give updates.