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dcmom

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Clarie- I am so glad Carter is doing well. As I am sure you know, when any of our kids relapse, it shakes me to my core. It is great to know that the steroids worked. Maybe the pex reset his immune system so that this was more like his initial episode, and you caught it immediately. This does seem to be key. If only the doctors would screen for pandas, it would save so many heartaches... I do have my own plan to work on educating people in my area- I need to get myself together a bit before I can do that :) Please keep us posted...

 

Do you mind saying what type of dose of zithromax carter is on? My dd is on 200mg/day right now- that is normal treatment dose for her size (of course would only be 10 day...)

 

Are you still considering pursuing IVIG- or is that on the back burner for now since he is well?

 

Thanks, keep the good news coming...

 

Eileen

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Quick update.

 

Julia continues to be well, meaning 100%.

 

We saw Dr Latimer for a follow up today. She agreed, could see a big physical difference as well.

 

We agreed to be really proactive with upping (or switching up) antibiotics and using steroids if any symptoms appear.

 

We will keep our fingers crossed!

 

( As a side note: our insurance has denied the pex claim- even though it was pre approved. It is being appealed by the hospital for now. Anyone have experience with this type of thing...)

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DCMom,

 

Great news and so glad Julia is doing well!!

 

Regarding your insurance..... We had to hire a health care advocate when I was pregnant with our twins. For some reason, our insurance was trying to deny us coverage for the pregnancy. They were basically fishing for reasons and requested all our medical records. We assumed they were looking for ANY pre-existing condition to cancel entire policy. They finally reversed course after we hired the advocate, would not provide records and hit my 35 week of pregnancy (when they knew the twins would be fine based on length of pregnancy). It was very stressful being pregnant and not knowing if we would be covered. We spoke to our Dr., our hospital and everyone was willing to work with us. My husband knows the name of our advocate and will pass it along once I confirm with him. DO NOT SEND THEM ANY INFORMATION UNTIL YOU SPEAK to an advocate.

 

Pray it all works out for you.

 

-Wendy

 

 

 

 

 

Quick update.

 

Julia continues to be well, meaning 100%.

 

We saw Dr Latimer for a follow up today. She agreed, could see a big physical difference as well.

 

We agreed to be really proactive with upping (or switching up) antibiotics and using steroids if any symptoms appear.

 

We will keep our fingers crossed!

 

( As a side note: our insurance has denied the pex claim- even though it was pre approved. It is being appealed by the hospital for now. Anyone have experience with this type of thing...)

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Hi DCMom,

I believe my son and I were in the waiting room today while Julia had her appointment. So glad things are going well.

Sorry we didn't introduce ourselves but I didn't want to be nosy. Our news wasn't quite as good but not that bad either. Stay vigilant. Alex

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Hi everyone- thanks for your well wishes! We came home from pex at Georgetown today and all is well. It was a long week, and I plan on posting a really detailed description of the whole process asap. We had our share of glitches- but no complications. It was a difficult week for our daughter, but I think she will get over it quickly. Hoping that we can continue the healing process, trying to figure out when to let her go back to school.

 

I will post details in a day or so...

 

Eileen

 

We are awaiting in the wings for PEX at Georgetown Tuesday this week if our Doctor can reverse the insurance companies denial. I will look forward to your synopsis. Where was your child's catheter placed? Does your child have any issues with anesthesia?

Thanks!

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  • 3 weeks later...

Just a quick update:

 

At the time of my last post in this thread, Julia was about 110% improved after plasmapheresis. Unfortunately she came down with probable H1N1 the next day. Luckily, I was in touch with Dr L, who prescribed tamiflu. This took care of the flu about 12 hours after it started. About 24 hours after that, we saw some pandas issues start to come back. The next few days continued in a downward spiral. Symptoms were: emotional lability, tantrums, irritability, pale, glassy tired eyes, school refusal, quick to cry, somewhat depressed or cranky. (Julia is 6). We waited about 24 to 36 hours after these issues started, just to see if it was really a pattern. At that time we started a steroid burst. (15 day) The steroids stopped the downward trend immediately, and after approx 4 days we started seeing improvement. She now has two more doses to complete the fifteen days. At this point, she is much better, although not the 110%. I am hoping to see continued improvement, although constantly worried that she will backslide when off of the steroids.

 

It has been a rough school year for Julia, minus the pandas and pex, she has had a stomach virus, the flu, and now a cold. I am concerned about how frequently we can, or want to, use steroids. Julia is VERY tiny for her age, that she really cannot afford not to grow for a few months of the year regularly. I am considering pursuing IVIG, but am waiting (while things are calm anyway) until the new year to do anything more.

 

Rest, and calm environment, still seem to be key in keeping her well. School is such a grind- but I would like to keep her there. We see Dr Latimer next week, for another follow up (I think we will continue to see her bimonthly for now- this is such a luxury for us), and may discuss some possible school accomodations for julia.

 

So it is a mixed bag post pex for us- it is wonderful to get a glimpse at the true child (so I know I am not crazy), but painful to have that taken away, yet again. At this point, I am hopeful that we can just keep her at this 90% well level for a longer period of time....

 

I would be interested to know how others are doing post pex....

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Hi dcmom,

I feel like I'm becoming an annoying prosthelytizer for homeschooling (and I know from personal experience how irritating that can be)... but I can't help feeling that Julia's immune system is under siege in the school setting.

 

I can't tell you what a relief it is not send my son into the school. Of course he always had major behavior problems in school too, and attentional issues, so it's also a big relief not to feel sick all day wondering what I'll find at 2:45. I know I can't keep him isolated like this forever, but for now it's a price I am totally willing to pay.

 

We are 5 weeks post-PEX and my son is still doing well and getting better. I live in fear, though. Every time he whines, complains, or tickles his little brother I brace myself. His attention is still not good. He is still pretty obsessive, too, but he gets obsessed with what we are studying (we're having some trouble moving on from the revolutionary war)-- it feels totally different. Before the PEX he was going to a very very dark place.

 

He is cooperative and full of joy and love.

 

We saw Dr. L last week and he has no chorea. (BTW she now agrees that our kids need long-term full-strength abs... that the strep has not been eradicated. I know when I met her before the PEX she believed my son was strep-free.)

 

I am trying to move ahead with IVIG now, before he has another exacerbation. I personally don't see the advantage of waiting.

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We saw Dr. L last week and he has no chorea. (BTW she now agrees that our kids need long-term full-strength abs... that the strep has not been eradicated. I know when I met her before the PEX she believed my son was strep-free.)

 

Woohoo!! Has she she reading this forum? :D

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Hi Eileen,

 

I'm sorry to hear Julia has had a bumpy road since PEX. I'm glad to hear though that she is responding to steroids.

 

There is one part of this that I don't understand (and I am admittedly not a science person, let alone neurology, immunology, hematology etc.):

 

If PEX removes all of the bad antibodies that are causing PANDAS, and she just had PEX, then what is causing the PANDAS symptoms? In other words, even if the BBB is compromised from the flu, shouldn't there be no bad antibodies left to cross the BBB and cause symptoms?

 

I hope to see another post from you soon that she is back to 100%.

 

All the best-

Debbie

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We are 5 weeks post-PEX and my son is still doing well and getting better. I live in fear, though. Every time he whines, complains, or tickles his little brother I brace myself. His attention is still not good. He is still pretty obsessive, too, but he gets obsessed with what we are studying (we're having some trouble moving on from the revolutionary war)-- it feels totally different. Before the PEX he was going to a very very dark place.

 

He is cooperative and full of joy and love.

 

We saw Dr. L last week and he has no chorea.

 

Hi bronxmom,

 

That's great news! Please continue to keep us posted!

 

Debbie

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