Back from DC (plasmapheresis)

[T_Mom]

Nancy--I am so sorry, what a nightmare of a time.

I can't help reflecting that the psych. was apparently out of touch with the reason you are pursuing treatment: to try to HELP your d.

 

Truly, he must know nothing about the symptoms of Pandas for if he did, he would have known why you felt the treatment was worth trying--

 

The Psych. who saw my d through the worst of times was convinced that there was some physical causation behind her sudden onset severe symptoms. Anyone that has lived this nightmare would understand.

 

I wouldn't bother about the letter for the very reasons you said -- Let Dr L. know about it, and see what she would advise. Take care--

Edited August 21, 2010 by T.Mom

[nevergiveup]

This is the way they treat a child whom has been thru so much. I am so disappointed with our system. Once they called psych in, u didn't have a chance. We had psych called once in the er, it was a complete disaster, they implied things to my dd and scared her. I hope u can go back again and have pex asap.

[lss]

Nancy,

 

So sorry to hear of your experience. As far as the procedure is concerned; during the actual pheresis, my son played video games, was on the computer and he was allowed to sit up in bed with his head elevated. He was not allowed to go to the bathroom during the pheresis, but once done, he was able to get up walk to the bathroom, go to the play room they have for the kids- in a wheel chair. Since we had our procedure, I have heard that it is not done in the same area of the hospital. The pheresis nurses are not usually at the hospital, they only come in if there is a pheresis patient scheduled. Still no excuse for this psch guy to give your daughter such a hard time. After the procedure we did receive a survey in the mail as well as a phone call asking about our experience at Georgetown. I would certainly let them know about your experience with this phych. Once we were admitted-we only saw the pheresis nurses during the 3-4 hours of the procedure, otherwise, its just the regular nurses who tend to the kids, as well as a ton of different doctors throught the 3 days.

 

Linda

[wornoutmom]

Don't have a lot of time to post, but just wanted to say I am FURIOUS at what you and your daughter had to go through!!!!!!!!!!!!!!!!!!!!!!!

[forjpj]

I would definitely write a letter...torn on when to send it...maybe later just play it safe. But write it now!! That guy was an idiot!!I really, really despise psyche!! Ever since my 80 year old alzheimers, educator, veteran, father of 5 had to stay on a psyche ward. They treated us all with such disrespect, especially the doctors. And I never let anyone know, and it pisses me off to this day. If anything write the letter to help you rid yourself of the anger!!

 

My son was able to lay flat, no blood pressure cuff the whole time, and certainly no bed pan. Heck, there were times when I would have given anything for a catheter because he got up and down so much. (and it usually resulted in contamination issues and screaming)

 

We were on the cancer ward in Feb. Is that still where they do it?

[RNmom]

Nancy,

I will try and give you as much helpful info. as I can. For purposes of "context" I'll share about my son's abilities and needs: My ds 14 had his plasmapheresis the last week of July. He has catastrophic PANDAS that "exploded" on January 2, 2010. We have done: constant high dose antibiotics, steroids x 1 month, tonsillectomy, increased antibiotics, 2 days of IVIG at Georgetown, and then the plasmapheresis. My son is the "frightented" PANDAS type, he is completely homebound, unable to go to school, a "14 year old version of Howard Hughes." This is in sharp contrast to the boy he was the year before when he won the drama award for his school, "rocked" the lead in his school play, enjoyed hanging out with friends, and loved life... And, he accomplished all of this as a kid with High Functioning Aspergers Syndrome! (Yep, he too has ASD!)He does not have the surges of rage (so far) that some PANDAS kids suffer from. However, he can get terribly anxious with changes and his thinking can be "unreasonable." So, while at Georgetown I was prepared to advocate that all procedures be patiently explained, and that a small amount of extra time be provided for him to process and adjust to changes. Much to my delight, I never had to ask the staff to do that because the nursing and medical staff handle all of their kids that way! I can't imagine that your daughter's issue with the blood pressure cuff would actually have developed into a problem. In our case, I found the staff to be very willing to do whatever might help my son cope with the demands of the treatment protocols.

 

I am wondering if the discussion during the pre-admission consult was partly "lost in translation." Firstly, the blood pressure cuff only needs to be on "continually" during the plasmapheresis procedure which only lasts @ 3 hours each day. During that time, my son was able to have the head of his bed up @ 20 - 30 degrees. He was able to play video games on the TV. The idea of "lying flat" during the procedure is a "textbook" idea and the person with whom you consulted may not be completely in tune with how things are actually done on the unit. The clinician who ran the plasmapheresis procedure (not the nursing staff) kept the lights low for my son and was very gentle and sensitive to him. When not having plasmapheresis, he was able to get up and walk to the bathroom. Additionally, he could even have gone off the unit in a wheel chair is he had wanted... however in true "Howard Hughes" fashion, he opted to remain in his room the entire time.

 

One bit of info. to think about: One person on the nursing staff told me that sometimes the PANDAS kids are abusive to the nursing staff. She did not indicate any negative feelings about taking care of the kids with PANDAS. What I thought I "heard" in her comment was that those particular cases are very challenging to the staff and some of the nurses cope with the abusiveness better than others - understandably! As a nurse myself I had intuited that issue. In our situation we prepared our ds with role playing and talked about the details of the hospital stay for weeks before he went. We did tell him that, no matter how he felt, he was not to use bad language or an angry voice with staff. His older brother (21) and I played "tag team" as the "24/7 in hospital support." There were some "unique" adaptations that we had to make to help our ds with his "issues" while in the hospital. I found that by taking a room in the Levy Center we were able to support our ds for the four days that we were there without too much trouble.

 

I am, possibly, reading between the lines of Andrea's comment that the psychiatrist you encountered might not be the regular one? I will contact you personally for his name... That would actually be good news for the future if this particular doctor was just covering for someone else. However, this encounter is tragic for your daughter and your family. If you can find the strength within yourself to write as calm and factual a letter as possible (the facts will speak for themselves)to Dr. Shad (the admitting physician for PANDAS patients receiving plasmapheresis at Georgetown Pediatric ICU) I would encourage you to do so. You have an advocate in Dr. Shad. She will take the letter as high as it needs to go. I would focus on what this experience cost your daughter in terms of timely access to necessary treatment as well as the hardship to your family. State your concerns in an informative, rather than "threatening" or "litigous," manner so as not to raise defensive barriers to communication. (If Andrea suggested writing to someone else - do that as well.)

 

I sincerely hope that this is helpful to you. I hope that my lack of knowledge about the finer aspects of your daughter's case does not translate into insensitivity here. Each PANDAS child expresses the illness in their own unique way depending on where and how their brains are effected by the antibodies. Each child deserves access to treatment for their PANDAS along with proper support to help them cope with the demands of that treatment.

 

One additional thought: The comment that "Dr. Latimer is the most aggressive doctor out there treating PANDAS..." (my paraphrase) is an unprofessional statement that undermines the doctor/patient relationship between you and Dr. latimer. That is a big "no-no" in the practice of medicine. It might be worth addressing. Hopefully, others will read this and edit and/or ammend my suggestions. I agree with others who say that what you write will be for all PANDAS kids who try and access plasmapheresis in the future. I wish you the best in returing your daughter to that point of access as soon as possible!

Edited August 21, 2010 by RNmom

[RNmom]

Nancy--I am so sorry, what a nightmare of a time.

I can't help reflecting that the psych. was apparently out of touch with the reason you are pursuing treatment: to try to HELP your d.

 

Truly, he must know nothing about the symptoms of Pandas for if he did, he would have known why you felt the treatment was worth trying--

 

The Psych. who saw my d through the worst of times was convinced that there was some physical causation behind her sudden onset severe symptoms. Anyone that has lived this nightmare would understand.

 

I wouldn't bother about the letter for the very reasons you said -- Let Dr L. know about it, and see what she would advise. Take care--

 

 

I agree - ask Dr. Latimer what she would like you to do (I wrote you a longer response elsewhere...)

[NancyD]

Thank you , EVERYONE, for all your great posts,PMs, and words of support! At least now DD and I can joke about what happened. She wants to go there next month and say "I'm b-a-a-a-c-k!"

 

Like T.Mom suggested and others supported, I emailed Dr. L recapping what happened. She was fully aware and she is trying to work out a solution. I did ask for guidance as to whether or not to send a letter to the hospital. I have no problem letting it go, but I would like for this not to happen to any other family. I do not in any way want to compromise her or future pheresis for my DD or your children. I understand why they have to be so careful but the psychiatrist was inapporpriate and the conflicting information could have been prevented. For any child with ASD or PANDAS, the child needs understanding and compassion, consistency, accurate answers to questions, expectations to be set, and time to adjust to the rules.

 

Hopefully we will be able to try again next month if they are willing to work with us. If not, we may have to do another round of IVIg. IVIg has always helped with everything but the anxiety/OCD. I was hoping the pheresis would reduce or eliminate the anxiety, which I think is at the crux of everything else.

 

Onward...

Nancy