Psych Ward

[Buster]

Michael,

 

I am so sorry to hear your news. My heart dropped when I read it as I remember vividly our own challenge when we were scared for our daughter and for others in the family. I'm glad he and you are safe. Thinking of you and your whole family.

 

Buster

[Megs_Mom]

I am so very sorry - . I hope this will bring your family some answers. My heart is with your entire family.

[smartyjones]

Michael - so sorry to hear - i have to think this is going to lead you in a good direction, though!

[FallingApart]

Michael,

 

I am so sorry to hear about this. I can only imagine how hard this decision must have been. I think that we were probably in a similar situation this summer but never acted on it. Most likely because DH and I didn't logistically know how to go about doing it. If DD could have spoken, she would have said the same thing about not sleeping in the past year. I hope that the meds they use to try to help with sleep will work and not actually backfire. I'm glad there is a hospital staff there to tend to the fallout if they do indeed backfire.

 

I feel that DD has an extreme case of PANDAS. We have also done PEX. But for us it didn't work. Our family was so hopeful that it was going to be the golden ticket and were pretty devastated when it wasn't. I think we are the only ones on here that it flat out didn't work for. But I wanted to chime in about that. If you have a true PANDAS doc that is guiding you, I think you should trust it. Of course Dr. L guided us. But we only met with her one time. SHe wasn't an expert on DD, only PANDAS. It is a terribly stressful decision to make. In the end, we went back to monthly IVIG and that is definitely helping. The road is so long, but I do think that creativity and perserverance will pay off.

 

Please update us when you can. We will be thinking of you.

[KeithandElizabeth]

Michael:

 

I am so sorry that you have had such painful time while trying to heal your son.

 

My thoughts are with you!!!!!

 

Elizabeth

[P_Mom]

When my son "went crazy overnight"......I remember thinking about the possibility of having to admit him. He was to attend "play school" in the fall and I remember thinking it would never happen. I remember discussing home schooling with my husband.....I remember thinking he would never board a school bus like his older brother and that he would never be "normal" again. When his babbling ending with hissing while standing in the corner of a room started...I remember thinking he must be "possessed". We are not crazy people......that is the last thing you would expect from us...it was that bad....that fast.

My son as I knew him was gone.

 

To hear about it actually happening for you guys does break all our hearts...it takes us back to those very dark days....tears fill my eyes right now. I am so sorry it came to this....but, I understand at the same time.

 

My son is now a happy, thriving first grader ....no special accomodations or anything.

 

There IS HOPE!!

 

Kelly

[fuelforall]

Michael,

 

I am so sorry to hear about this. I can only imagine how hard this decision must have been. I think that we were probably in a similar situation this summer but never acted on it. Most likely because DH and I didn't logistically know how to go about doing it. If DD could have spoken, she would have said the same thing about not sleeping in the past year. I hope that the meds they use to try to help with sleep will work and not actually backfire. I'm glad there is a hospital staff there to tend to the fallout if they do indeed backfire.

 

I feel that DD has an extreme case of PANDAS. We have also done PEX. But for us it didn't work. Our family was so hopeful that it was going to be the golden ticket and were pretty devastated when it wasn't. I think we are the only ones on here that it flat out didn't work for. But I wanted to chime in about that. If you have a true PANDAS doc that is guiding you, I think you should trust it. Of course Dr. L guided us. But we only met with her one time. SHe wasn't an expert on DD, only PANDAS. It is a terribly stressful decision to make. In the end, we went back to monthly IVIG and that is definitely helping. The road is so long, but I do think that creativity and perserverance will pay off.

 

Please update us when you can. We will be thinking of you.

 

Hi, thanks for telling me about PEX. Does DD have chronic PANDAS? I think someone should do a survey about kids with chronic PANDAS vs overnight PANDAS, etc. Does your DD have immune system issues like my DS? This would account for PEX not being effective, I believe.

Michael

 

PS THe decision to act was not actually hard. It was the last resort, there was nothing else to do but attempt to find someplace to put him. It looks like he will be there a couple weeks. My apt is quiet, tomblike, even with a bouncy three year old running around.

[Dr_Rosario_Trifiletti]

Hi folks,

 

We had my son admitted to the child psych ward of a hospital yesterday. Our fairly small apt, a three-year-old brother, violent rages, it just became too much for us. He refused to go to school, takes his meds (including Keflex, which was not working), the exacerbation was too much for us. (I re read Pixie's Mommy's piece on her daughter from a few months back... phew! It feels that bad to us but probably wasn't.)

 

We are meeting today with the psychiatrists to talk about treatment during and after release. My son's psychotherapist, of all people, wants my son to get a full work up,including MEDICAL and NEUROLOGICAL work. She says after assessing him over a few months, it is clear there are not just behavioral patterns involved.

 

I have filed to get pre approval for IVIG treatments with United Healthcare.

 

I am hopeful the hospital will be okay for my son but that they will not let him go too soon, as is most hospitals' tendency. He really needs to be treated in some way to reduce some extreme symptoms.

 

DS9 has low IGG numbers but I also noted his other two Iga and Igm, are on the low side of normal.

The shrinks have all heard of PANDAS but refer to it as "rare". I beg to differ. I am meeting people with kids just like mine. Really.

 

your thoughts are appreciated.

 

Michael

[fuelforall]

Update.

 

Well, it feels like the logjam is breaking. The report from the staff doctor is that ds9 seems to be sleeping better, that his nightmares seem less severe. He's getting clonidine and it will take time to work his way into the system. Dr. T has jumped into the process (thank you kindly, sir) and says clonidine should be a good fit for ds9.

 

Ds9 has been checked out by a neurologist and tomorrow big cheese neurologist comes for a meeting, which I will be attending. He is very big cheese, Dr. T said he used to work under him. Then on Wednesday, we will talk with and ds9 will be looked at by... Dr T himself! It turns out Dr. T is coming to a conference at the hospital to discuss a child who has......

Well, you know what the child has....

 

So things are starting to move and today ds9 was in a much better temper than he had been when I visited, even though he dislikes the hospital. (Like anyone likes hospitals?) If everything continues on this road, he may get out at the end of the week and Dr. T can commence trying steroid burst/ new abx. Gotta move forward.

 

I'll keep everyone posted.

[melanie]

Update.

 

Well, it feels like the logjam is breaking. The report from the staff doctor is that ds9 seems to be sleeping better, that his nightmares seem less severe. He's getting clonidine and it will take time to work his way into the system. Dr. T has jumped into the process (thank you kindly, sir) and says clonidine should be a good fit for ds9.

 

Ds9 has been checked out by a neurologist and tomorrow big cheese neurologist comes for a meeting, which I will be attending. He is very big cheese, Dr. T said he used to work under him. Then on Wednesday, we will talk with and ds9 will be looked at by... Dr T himself! It turns out Dr. T is coming to a conference at the hospital to discuss a child who has......

Well, you know what the child has....

 

So things are starting to move and today ds9 was in a much better temper than he had been when I visited, even though he dislikes the hospital. (Like anyone likes hospitals?) If everything continues on this road, he may get out at the end of the week and Dr. T can commence trying steroid burst/ new abx. Gotta move forward.

 

I'll keep everyone posted.

 

Good to hear Dr T is helping hes a great MD. Let us know what happens ...

 

Melanie

[memom]

I am so glad you are seeing some results. What a nightmare. We are all thinking of you during this difficult part of the journey.

 

Keep us updated.

 

Ellie

[momofgirls]

Great to hear things are moving forward. So glad Dr T is coming in to help. We are all thinking of you guys.

I am so glad you are seeing some results. What a nightmare. We are all thinking of you during this difficult part of the journey.

 

Keep us updated.

 

Ellie

[T_Mom]

Michael, I am so sorry--Our thoughts and prayers are with you tonight.

How serendipitous that Dr. T. can be there this week. I will be hoping he is able to help with great insights--that are effective.

[earnestfamily7]

Great to hear things are moving forward. So glad Dr T is coming in to help. We are all thinking of you guys.

I am so glad you are seeing some results. What a nightmare. We are all thinking of you during this difficult part of the journey.

 

Keep us updated.

 

Ellie

I read your post last week and cried - I couldnt even post a reply - I am so sorry and so glad at the same time that your child is getting closer to getting the help needed. You post was a wake up call to me that my daughter may be a PANDAS child - my son 9 has already been diagnosed (sudden onset) - my daughter however never had a huge- cut and dry sudden onset - so it really never crossed my mind... but she has strep history and looking at behaviors has the symptoms minus the sudden onset... the drs have been trying to 'figure her out' for a about 3 years... not bipoloar - not mood disorder - lots of anxiety.... lets label her oppositional defiant disorder... because she is defiant at times (at home) ... well over the holidays it went from defiance to craziness - she was running out of the house into the snow in bare feet... jumped out of the windows in our sunken living room - threw snow all over the house. tried to swing her 5 yo brother around in circles - hitting me - screaming.... I could go on and on.... we even went to the ER... we left after 4 hours as they couldnt tell us when she would be seen.... giant meltdown leaving the hospital.... and she tried to open the car doors on the way home - luckily I was in the backseat with her and the child locks were on .... but trust me I was thinking she needs committed - the next day we went to a psychaitrist (she was being seen by a psychologist who said she had anxiety... ODD) the psychiartist gave a script for respiderol....25 mg tab - we were to dose as needed... 1 tab per day .... we dosed Fri & Sat and almost on Sun.... she can turn on a dime for unprevoked reasons and there is no gaining control back in the situation.

She most ofter has the reaction with me or when I am around that is one reason I was hesitant about persuing PANDAS for her - but we go to the ped tuesday and I am requested blood labs...

 

You and your family are in my thoughts and prayers. It sounds like there is a strong chance of sun at the end of your tunnel

Steph

[fuelforall]

Steph,

So sorry to hear about your daughter. Hope she can get the help she needs.

 

Michael