Pandasmom's Blog

living with PANDAS, not the furry ones…

A bit off topic January 28, 2010

Filed under: Uncategorized — pandasmom @ 9:34 pm

This post doesn’t have a lot to do with PANDAS but I want to remember it so I’m choosing to write it here.  We have a gravely ill family member in our extended family.  John unexpectedly left earlier this week to be with this person and explained the situation to our girls as best as he could.  He gave them as little information as he could while still being very direct with them.  It’s been very interesting to watch them all week as they process this information.  A just turned 4 and C will be 3 in April so I really didn’t think they would grasp the severity of the news.

However, all this week, it has been popping into our conversations.  It’s obvious that the girls’ biggest fears are manifested in this situation.  A knows that this person was in the hospital and keeps saying that he must have a poke in his arm and leg (both are places that she has had an IV) as well as his finger (not a place she has had one; but she is terrified they will try to stick her near her knuckle and talks about it regularly).  C has overheard many conversations while John has been gone and is quite reserved while listening.  After one conversation I told her “Thank you very much for sharing your Daddy with this person.  He really needs daddy and it is nice of you to share”.  C said “You’re welcome.  This person is throwing up.  And I will share my trains too.  This person can have Percy and Thomas.”  C throws up a LOT!!  Apparently it really bothers her!  She also does not like to share her trains.  She will share almost anything with anyone but would really prefer not to share her trains.  It has been interesting to see that the girls clearly know that our beloved family member is having a very hard time and they compartmentalized it in a way that was meaningful to them.

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Gummy Bears January 23, 2010

Filed under: Uncategorized — pandasmom @ 1:58 pm

We spent this last week working on medication.  Finding out that C was positive for strep was very exciting but quickly turned into one more very difficult chore.  We never realized how blessed we were that A would willingly take all of her medicines, no matter how terrible they tasted.  If she could have a tic tac or an M&M she would be fine.  C is not so easily swayed.

If C is the strep carrier, she needs to be taking Clindamyacin.  We tried to give her some and she just spit it out and started crying.  She looked at me as if to say “why would you do this to me?”.  We spent the next few days trying every which way to disguise the medicine and get it into her.  If we were successful in getting any amount into her, she then started throwing up.  It is imperative that she take the medicine, so I called our ped to update her.  She told me to bring C in and they would help.  They did indeed help, but then C threw up buckets of vomit all over the peds office.  It was not a pleasant experience.If C wasn’t going to be able to take the drug orally, she would have to move to a 10 day IV dose of it.  While we waited to see if we could do any other option, we tried to get her to take Augmentin.  We had the same response:vomit.  It has been a long week.

During this time, C and I were at the ped’s office each day checking to see if C still tested positive for strep.  While she was positive, we had to keep A and C separated so that A didn’t catch the strep.  A had only been out of the hospital for 20 hours when we realized that C had strep.

Fast forward to today…Since the adults in our house are able to swallow pills, we are having John take the Clyndamiacin as a precaution.  In the meantime, C has to clear this current infection of strep and HAS to take a full dose of Augmentin.  We had a compounding pharmacy custom make gummy bears for her with the drug in them.  We went over yesterday to pick them up.  At first, C said she wasn’t going to take them.  I told her we would go back to the ped’s office if she didn’t eat them and I think she remembered throwing up there.  Somehow she ate the gummy bears.  It was very sweet to watch A cheering her on.  It was also very touching to watch the entire pharmacy staff come out to look at their client.  They are going to do a write up of these gummy bears and try and make them more readily available for other children who are unable to take medicine like C.  It turned out to be a nice experience. 

However, that was only one dose of 6 gummy bears.  We need to do this 29 more times.  I’m a bit apprehensive…

 

Quick update January 17, 2010

Filed under: Uncategorized — pandasmom @ 4:26 pm

We are home from IVIG and A is doing fabulous.  We did IV antibiotics and I think this was very helpful for her.  I took A into the ped’s office for her third and final dose of the IV antibiotic and to remove her IV.  While I was there I told the ped about C’s horrible diaper rash and asked her to refill a diaper cream for C.  She said she would happily do it but since it was a rash on her bum, we had better bring C in to ensure that is wasn’t strep.

Well, guess what?  It IS strep.  C is the carrier of the strep that A has the autoimmune reaction to.  C has had this horrible diaper rash her entire life.  We have never given it much thought because there hasn’t been much time in our lives to focus on a seemingly insignificant diaper rash. 

A strep carrier should easily be able to be treated with a very strong oral antibiotic.  The only problem is that C has a horrible gag reflex.  We have spent the last 72 hours trying to force various antibiotics down her throat while she continuously throws up.  Also, since A has such a violent reaction to strep, we have to keep the girls separated from each other.  Since C has not been able to take the antibiotic, we are likely going to either have to give her 10 days of IV antibiotics either here at home or in the hospital or insert a feeding tube through her nose 30 times to get it into her.  And while all this has been happening, A has clearly been exposed to the strep because she has shown signs of a minor relapse. 

Does this nightmare EVER end?!?!?!!??!!?

 

Elevated number January 13, 2010

Filed under: Uncategorized — pandasmom @ 10:59 pm

We are on the second day of A’s IVIG.  It’s interesting that when things get so bad, both John and I get swallowed by doubts and doom and gloom.  The doubts surround A’s diagnosis; is there really anything amiss?  Or is this who she truly is?  The doom and gloom make us think of future filled with very dark and unhappy times to come.  We both do this.  In November, I was completely unable to recall the benefits that IVIG had provided to A over the summer.  I was positive that she would never reap benefits from a medical procedure again.  But when we did see improvement from the November IVIG and we did schedule the treatments for the rest of 2010, I was able to remain somewhat positive that the absolute darkest times were behind us.  But this time around John had a very hard time holding on to the glimmer of hope we saw in December. 

The pockets of hope have been so small for our family.  There certainly hasn’t been enough time for anyone to start to recover or to let our guard down.  And then when the relapses come it tends to shatter us. 

When we spoke with the ped this morning she had some interesting news for us.  Each time A shows signs of a relapse and/or each time we do an IVIG we do several blood tests.  If she has the autoimmune disease she should fail some tests when she is in exacerbation mode and pass them when she is in maintenance mode.  I was quite happy this morning that one of her tests came back high.  It is the ASO titer.  Yesterday’s number was at least 20 points higher than when A is healthy.  As much as I don’t want our child to be sick, I was really happy to see some scientific proof that corroborates all of the behavior we have seen since last Friday.  There are still some other tests that we are waiting on but they had to be sent out and we won’t have the results for a while.

I am indeed happy that there is an infection that is causing all the things we see.  But at the same time, it scares me that this happened while in the middle of monthly infusions.  I know that all the other children with PANDAS are having this happen this winter too, but I just wish we could find the source and get rid of it for good. 

We are doing the IV antibiotics again and are following them with a month of Augmentin.  I hope that if there is an infection to be killed that we effectively kill it…

 

January’s IVIG January 12, 2010

Filed under: Uncategorized — pandasmom @ 9:04 pm

We are here in the hospital for IVIG. We are 3 days early because A was not doing well and our ped thought we should move things up.  This time we are doing IV antibiotics again because it is the one thing we didn’t do last month.  Since we had a pretty rough month last time we decided to add the IV antibiotics back this time.  So far, we are just administering the antibiotics and then will move on to our first dose of IVIG.  A will have to take her IV home with her again this time because the antibiotics need 3 doses.  A is still terrified of the pokes so we are going to leave it in so that she can get all 3 doses.

 

Public places January 11, 2010

Filed under: Uncategorized — pandasmom @ 8:53 pm

Although A just turned 4 she is very tall and she looks older than 4.  In addition to this I know I am a very sensitive person.  I know I shouldn’t care what others think of me but I do.  I care very much.  The combination of these 2 things typically makes public places a disaster. 

For the longest time, John and I thought that A was going to get better at some point.  Now we realize that this is a process that will need to be managed so that things don’t continue to get worse…  Having a child that is constantly melting down when they are only 2 or 3 years old is considered acceptable.  But all the sudden when the child looks to be 5 or 6 it is no longer ok.  And A looks like a “normal” child.  This didn’t dawn on me until this past weekend when we were in church.

A was having an incredibly difficult time at church.  There must have been sensory issues involved as well as constraints that weren’t ok with her.  She was trying very hard to keep it together but wasn’t able to.  I could sense the people around us getting tense and uncomfortable.  I imagined them thinking “why can’t you control your child”.  I found this very humiliating and my thoughts of the future were very bleak. 

I’m not really sure how to handle situations like this.  Do I have to open up all aspects of my life to explain why A acts the way she does?  Do I sit there in humiliation while others are staring at me in annoyance?  Am I wrong in my thinking that people are annoyed with us?  I truly doubt it.  This is something I’ve just come to realize and will need to come to terms with. 

 

Why so many hard times?

Filed under: Uncategorized — pandasmom @ 4:17 am

It is still hard to tell if this is a blip or whether the infusion has run its course.  Things are definitely not good for A.  Tonight at dinner she was a complete wreck and was unable to keep it together to even take her first bite.  After she recovered enough to only cry (rather than all the things that usually accompany these meltdowns) at the table she asked John “Why am I having so many hard times"?  I almost burst into tears right there.  It is so sad to see that she can tell when things aren’t right.  In a way, I would rather she was oblivious to it all and only John and I had to know.  C definitely notices, that’s for sure.  She just sits quietly at the table, eating, and says “Poor, A is having a hard time.”