10 weeks post-PEX

[mom md]

Just wanted to keep everyone up to date on our progress. I know it is always helpful on this forum to read some good news. We are 10 weeks post-PEX and getting better and better each day. I would say we are 98-99%, consistently each day. We were told the encephalitis would take 1-2 years to completely heal which actually medically makes since since we are dealing with the brain which is slow. We were told the first 6 months were two steps forward, one step back, then steady progress for 6 months, then fine tuning up to two years out. I have to say our expectations have been exceeded. My son goes to a very demanding school and tonight I talked to the teacher. She said they are seeing almost nothing of concern. Two weeks ago he was having subtle vocalizations which are now gone. Interesting, she said he will be reading perfectly but after a while gets "choppy". My guess it is fatigue. She said he sits still, is pleasant, focused, bright, etc. She could not say enough positive things. He was the first one in the class to publish a story he had written with the school. Last year he was completely unable to write because he had so much anxiety over even making the decision about what to write about. Unbelievable!!!! Just wanted to share some good news.

[bmom]

That is wonderful to hear. I have 2 questions and I apologize if you have answered these before. Although I used to be an avid reader, I am more hit and miss these days. 1. As you are a physician, what made you choose PEX over IVIG? and 2. What was the total bill PEX? Ok, a couple more. Did insurance cover any and any negative side effects? Thanks!!!

[P_Mom]

Brandi...you have to post more on how your son is doing! I am always wondering about you guys! What is your take on IVIG....how is he?!

 

Kelly

[sf_mom]

Fantastic News!! AND, so nice to hear positive feedback.

[mom md]

That is wonderful to hear. I have 2 questions and I apologize if you have answered these before. Although I used to be an avid reader, I am more hit and miss these days. 1. As you are a physician, what made you choose PEX over IVIG? and 2. What was the total bill PEX? Ok, a couple more. Did insurance cover any and any negative side effects? Thanks!!!

We chose PEX because Latimer siad our titers were in the top 2% of all cases and she thought it would take 2-3 IVIG treatments or 6-9 months vs. 3-4 days with PEX. As a physician and surgeon, the ICU and central line did not scare me. My son was sedated to get an MRI earlier so I knew he would respond fine to the sedation part. The total bill was around 42,000. BCBS picked it up. We paid a 1,500 deductible but most of that was reached by the MRI.

My son had an allergic reaction to the plasma proteins in PEX. We had to do IV steroids around the clock to get through the procedure. He was a little irritable and did not sleep well but looking back that may be why we saw such quick, dramatic results.

[nevergiveup]

Mom md,

 

Have you seen the recent publication of High dose IV steroids and remission of SC symptoms? What was your sons dosage at the PICU? Thanks

[smartyjones]

We chose PEX because Latimer siad our titers were in the top 2% of all cases and she thought it would take 2-3 IVIG treatments or 6-9 months vs. 3-4 days with PEX

 

 

So glad your son is doing well! It is so good to hear good stories. I cried the whole time looking at Sammy this morning.

 

Can I ask - what were his titers? Had they remained elevated for a long time? Is this correct - the IVIG injects antibodies to circulate and the PEX takes out the blood, cleans it of the antibodies and injects the clean blood back in?

 

BCBS picked it up.

 

Had you gone for immunological testing or was it based on the titer numbers?

 

Thanks!

Kathy

[mom md]

No-where is it? I am still waiting on his discharge summary and I can't remember the dose. I think it was 2mg/kg every 12 hours but that may be completely wrong.

Mom md,

 

Have you seen the recent publication of High dose IV steroids and remission of SC symptoms? What was your sons dosage at the PICU? Thanks

[ShaesMom]

Just wanted to keep everyone up to date on our progress. I know it is always helpful on this forum to read some good news. We are 10 weeks post-PEX and getting better and better each day. I would say we are 98-99%, consistently each day. We were told the encephalitis would take 1-2 years to completely heal which actually medically makes since since we are dealing with the brain which is slow. We were told the first 6 months were two steps forward, one step back, then steady progress for 6 months, then fine tuning up to two years out. I have to say our expectations have been exceeded. My son goes to a very demanding school and tonight I talked to the teacher. She said they are seeing almost nothing of concern. Two weeks ago he was having subtle vocalizations which are now gone. Interesting, she said he will be reading perfectly but after a while gets "choppy". My guess it is fatigue. She said he sits still, is pleasant, focused, bright, etc. She could not say enough positive things. He was the first one in the class to publish a story he had written with the school. Last year he was completely unable to write because he had so much anxiety over even making the decision about what to write about. Unbelievable!!!! Just wanted to share some good news.

 

Thanks for sharing! It is always great to hear the success stories.

[EAMom]

Great news! I think it just helps matters that you didn't mess around for very long...you got your son on abs quickly and did PEX quickly.

[mom md]

Looking back though the journey did begin at 4 -5 years old. He is now eight. we were given the diagnosis of ADHD, OCD, anxiety, restless leg syndrome, dysomnia...before someone finally asked us if we had had a strep infection. Once I got the diagnosis I just pushed hard because I felt we had already wasted 2-3 years.

Great news! I think it just helps matters that you didn't mess around for very long...you got your son on abs quickly and did PEX quickly.

[nevergiveup]

Ok I have the data, it wasn't easy to get but I found it again and can now give better details. The article is from 2009 Feb Neurology India " Rapid resolution of choreic movements and Behavioral Disturbances suggest IV coricosteroids may be an option in treatment of Sydehams Chorea more so when movements are disabling. ". This is a quote from the article. The title of the article is "Remission of concomitant pupura And Sydehams Chorea after IV coticosteroids." Dosage was 25 mg per kg per day for 5 consecutive days. ( Seems like a lot but I had 1000 mg per day for three days and it worked great for my MS. ). The article mentions the etiology of PANDAS also. India seems to have a lot of SC and many articles. Interesting how a recent article in US showed slight cardiac issues for PANDAS kids. The article from INDIA talks of relapse rates etcc... Very similiar to my daughters history. I find it very interesting that American doctors from INDIA recognize PANDAS long before Caucasian doctors. I have heard of numerous cases where a child has seen a neurologist who says TS and then an India Doctor recognizes the signs of SC. It is more common, RF and SC in India because of the lack of medical care and many instances where antibiotics are not available.

 

Their recently was a conference held for Indian doctors to establish protocols for SC including documenting standard practice of steroids and plasma exchange for SC patients.

 

I have a crazy idea but could we get some money together to bring over these doctors from India to work with Latimer for a week and see patients. Read the study, it talks of titers levels, symptoms, emotional, OCD and tics. I bet if we got $20,000 together we could get them here for a week. After a $42,000 pex, 5 days of IV steroids looks damn cheap and may allow more treatment for children.

 

They mention pupura??? is also seen with strep autoimmune antibodies. I never had heard this before??? What are the symptoms. Interesting the two major attacks my daughter has had, both times she has gotten small purple indents symmetically positioned (hundreds) on her thighs and knees, especially during a change of temperature in tub or in cold ocean? Is that purpura?? The indents (dots indented) disappear when her body goes back to normal temperature. It happens only within the first 6 weeks of an attack and only when she has been severely struck from chorea and tics.

 

Glad your sons doing well.

 

 

 

 

No-where is it? I am still waiting on his discharge summary and I can't remember the dose. I think it was 2mg/kg every 12 hours but that may be completely wrong.

Mom md,

 

Have you seen the recent publication of High dose IV steroids and remission of SC symptoms? What was your sons dosage at the PICU? Thanks

[/q

[sf_mom]

My son is 5 1/2 and we think he might have had his initial strep infection at 4 1/2 'at least that was the first time he had any antibiotics in his life'. There was another time at almost 4 he was ill, maybe exposed to Scarlet Fever but recovered on his own. We are now five days post IVIG and I'm seeing a calmer 'different kid' and not sure I know him. I'm realizing how much this zapped his personality for a year and a half.

 

I imagine you are feeling the same 10 weeks post PEX? It feels like a miracle and I'm still learning to trust the change and accept that its actually working.... I look forward to what unravels and rediscovering OUR BOY over the next 10 weeks.

 

Looking back though the journey did begin at 4 -5 years old. He is now eight. we were given the diagnosis of ADHD, OCD, anxiety, restless leg syndrome, dysomnia...before someone finally asked us if we had had a strep infection. Once I got the diagnosis I just pushed hard because I felt we had already wasted 2-3 years.

Great news! I think it just helps matters that you didn't mess around for very long...you got your son on abs quickly and did PEX quickly.

[mom md]

I too, can't believe the child I am seeing. It is like meeting your child for the first time. Yesterday his school pictures came home. When you compare his picture this year with last year it is unbelievable. Last year his eyes were vacaant and dark. Thsi year his eyes are sparkling and alive. Very eerie.

[sf_mom]

BUT, congratulations on getting him the medical help he needed!!! I remember that look in my sons eyes.... he felt gone. Now, his pupils are dilated uneven but its getting better and I understand its all part of the healing process. I look forward to hearing what unravels for you as your son improves. Please keep us updating.

 

I too, can't believe the child I am seeing. It is like meeting your child for the first time. Yesterday his school pictures came home. When you compare his picture this year with last year it is unbelievable. Last year his eyes were vacaant and dark. Thsi year his eyes are sparkling and alive. Very eerie.