Pandasmom's Blog

living with PANDAS, not the furry ones…

Back to the hospital May 27, 2010

Filed under: Bad days,medical — pandasmom @ 9:55 pm

It has been 15 days since we left the hospital and here we are back in again.  During our last treatment, John and I watched in horror as our sweet girl seemed to disappear before our eyes.  We were so shocked at what seemed to be happening that we couldn’t bring ourselves to believe that she was actually getting worse while she was receiving the treatment. 

Everything about this disease is gradual.  Aside from the initial onset that is.  But the return of the symptoms and even the dissipation of the symptoms: both are gradual.  Enough so to make John and I think we are crazy for even questioning the state our daughter is in.  Is she healthy?  Is she sick?  Are we nuts? 

After a week of watching her get worse and worse, we had an appointment with our ped to attend. It was previously scheduled so the timing was good.  Our ped was shocked by A’s state and asked if we thought she could handle a blood draw.  The ped is well aware of how traumatic needles are for A so she didn’t take this request lightly.  I tried to gear my mind to getting blood results that said all of her titers and other numbers were normal and that this up and down business is just going to be our life.  However, I was really quite thrilled when the results came back that her DNASE-B was sky high.  In fact, it was the highest it has ever been. 

We had already started her on Augmentin and hadn’t seen an effect yet.  So our ped wanted to do steroids.  We are very hesitant to do steroids for A because we have seen a lot of side effects from them.  But, in this case, we didn’t feel we had a choice.  The steroids did have a slight impact on A but it was very short lived.  And back to the hospital we go…

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An ask to my readers May 15, 2010

Filed under: medical — pandasmom @ 2:03 pm

It has been a full year now since we came upon a true diagnosis for A.  We’ve been dealing with her symptoms since she was 9 months old, but have only had a diagnosis since about May, June and July of last year.  There is only one test available at this time to provide a definitive answer to whether a child has PANDAS or not.  The test is being done at a research facility at the University of Oklahoma.  We worked with this group last summer and they were kind, efficient and helpful in a time of desperation for our family.

It appears that PEPSI is donating money to worthy causes each month.  I would love to ask you all if you could take a look at this page and vote for PANDAS.  There appear to be over 1000 causes up for competition. I’d love your vote for PANDAS but you might also find another cause that is near and dear to your heart.  The voting closes at the end of this month.

Here is an excerpt of the research being done by the group that will receive the funding if they win: Dr. Cunningham is a research director at the Univ. of Oklahoma. She has been tirelessly researching the autoimmune process involved in PANDAS. She is on the verge of a medical breakthrough, which will help 1000’s of children suffering with tics, ocd, etc. receive the proper diagnosis and treatment.

And here is the link to vote: http://www.refresheverything.com/PANDAS

Please let me know if you have any questions!  Thank you so much!

 

OMG Strep! I can’t take this!!!! April 22, 2010

Filed under: Bad days,medical — pandasmom @ 10:15 pm

A few weeks ago we switched C off of Augmentin and on to just basic penicillin.  Our ped did this because Pen should be enough to keep strep away and then we had a stronger drug to treat C if she were to truly get sick with something.

We did A’s IVIG a week ago.  John and I have ben very patient with her and we can tell she is working hard to stay in line.  However, this morning was very rough.  Both John and I said that we felt the treatment hadn’t worked.  Well, of course the treatment worked; there is just something else going on.  I called our ped to tell her and was thinking that A must have been around a strep carrier and that we would likely put A back on the Augmentin.  Our ped asked if I had checked C for strep.  It hadn’t even crossed my mind to check her since she is on an antibiotic and she looks absolutely fine.  I checked her and was completely blown away when the test showed that she was positive for strep!!!  No wonder A is having such a hard time and has been since she came home from the hospital!

But this is a real nightmare!!  We have tried every single drug option for C to try and get rid of this strep. Anything that has made it into her body has not cleared the strep from her system.  At this point, I’m even nervous that the drugs we have been unsuccessful in getting in to her would have an impact.

I am waiting for a call from the ped to tell us what to do next.  We will likely be admitting C to Children’s Hospital to work on this.  I am really sick of spending time in hospitals!!!!

 

No gag?? Not for us!! March 30, 2010

Filed under: Good days,medical — pandasmom @ 12:35 am

Before we became a household afflicted with an autoimmune disorder, I thought that I understood what it meant to have an autoimmune disease.  More and more I am coming to realize the meaning behind “Ignorance is bliss”.  I don’t think one can really and truly grasp it until it afflicts you.  I know that I was definitely ignorant to autoimmune issues before we were forced to become intimately familiar with the workings of one.  And I now know that we are only familiar with ONE!!  Our house is only one step below having a fatal reaction to strep.  That is how bad strep affects us.  That might seem like an extreme word to use to describe A’s reaction to strep.  But anyone who has lived in our house or been around our family when A has been exposed to strep would know that her entire being completely falls apart.  As soon as she falls apart, our whole family falls apart as well.  We are completely unable to function when this happens.  Several basic family needs do not get met when A is exposed to strep. 

So, last week, when we thought we were able to FINALLY get the Cephalexin into C, we were elated!  We can’t cure all of the strep carriers in the world, but surely we can do our best to cure A’s sister: the strep carrier.  Getting the no-gag candy and then the actual antibiotic into C was quite the fiasco but we were able to do it 3 times.  After 3 times I was starting to feel like we might actually make it through 30 doses.  However, on the 4th dose, C absolutely would NOT open her mouth for the antibiotic.  Nothing was going to make her do it.  We tried everything.  We got her to open up to accept the drug but she wouldn’t swallow.  Sadly, we yelled at her and told her she had to swallow it.  She tried and then instantly threw up.  And kept throwing up.  And. kept.  throwing.  up…  After it was over C told us she must have thrown up because her belly was too full of food.  I completely freaked out and thought we were creating a bulimic in the making and John and I put a halt to the Cephalexin.  From what our ped and I know, the Cephalexin taken orally is the only way we can eradicate the strep from C’s body. 

So, knowing that C is a strep carrier and seems to get it at least monthly and that we can’t get her to take the medication to clear it constitutes a crisis in my book.  Watching C continuously thrown up was very difficult for A and caused a lot of problems for our household on Saturday.  It was not a good day overall. 

However, C will still take the gummi bears and A will take the Augmentin so right now we have an exacerbation at bay.  Things are not perfect here but today has been a good day overall.  I know that there is strep in C’s body and that is not good.  But I think things are under control for now.  We will see what tomorrow brings.  

 

Tic Tacs March 26, 2010

Filed under: medical — pandasmom @ 4:49 pm

A lot has happened over here these past few weeks. C got strep again almost exactly one month after the last infection.  I think to the general public who are not familiar with PANDAS this is difficult to understand.  C’s strep is not the standard strep.  In fact, I don’t even know how to categorize it.  Until last week, I thought it was a strep infection that was internal to her body, but at this point we are now questioning if it is a topical strep infection.  Who in the world knew that you could have strep on your skin???  I’m not sure if this is correct or not, but I don’t think the general public gets strep on their skin.  I am thinking you must have to be a carrier in order for this to happen; otherwise we would all have it!

So, we went through another round of gummi bears in the form of Augmentin so that C would keep them down.  It is now clear that C will continue to get strep until we can either eradicate it from inside her body or on her skin.  At this point, we have to determine which type of infection it is.  We had been contemplating IV antibiotics for C because she can’t keep the Clindamyacin down but apparently IV is not as effective as oral.  So it was imperative that we figure out a way to get her to take the medicine orally.  Enter, the orange tic tacs.  Somehow, C easily swallowed orange tic tacs with not problem.  I tried this with her for about a week.  She wasn’t thrilled with the idea, but she did it.  Once we got good with swallowing tic tacs, we then had the compounding pharmacy (our new best friends) make up the smallest capsule they could of the antibiotic.

We tried to give her the first round of the drug and called it a white tic tac.  She looked at it and instantly said “I no yike dat white tic tac”.  I told her she needed to take it anyway.  Luckily we were in the driveway because we had a small battle where I told her to just swallow it.  She tried and then promptly threw up all over me.  AGAIN!  So, back to the compounding pharmacy we went to get something that dentists use.  THey make something that kills a person’s gag reflex. We gave this to C and then had her take the white tic tac.  She was very mad about it and was complaining.  She tried to vomit it but all the sudden it went down!  She was so proud of herself!!!  So, now we will go back to the compounding pharmacy again to get 30 more of the anti-gag things and hopefully get rid of this strep from C. 

In case anyone new is reading this, I need to point out that C is NOT the child with PANDAS.  But C is the carrier that keeps re-infecting her sister, A.

 

We are back home. For now October 14, 2009

Filed under: medical — pandasmom @ 10:56 pm

Dr. L is very responsive.  I was quite impressed with how understanding she is of the PANDAS situation.  When I told her staff we were unable to walk down the street I didn’t have to explain further that getting on a plane might be a tinge more difficult than the street.  Her staff said that they would speak with her as soon as she got in.  My only reason for calling them was that I was hoping we could start the steroids that day rather than waiting until we got back home.  Our flight wasn’t until very late and we were just sitting there watching Elmo.  I thought that starting the steroids might be able to help us clear her mind since she has had a quick response to most other treatments.  But, Dr. L asked me to come back to the office.

Of course I said yes but then I had to figure out how to get there.  If I wanted to get to the airport as well it would be more cost effective to rent a car.  So I did.  Strangely, when we walked over to get the car A was fine.  We had to walk 4 blocks to get to the car and we passed a fire station and many buses and garbage tucks and she was fine.  I asked her if the sounds were bothering her and she said no.  I was floored.  It had only been 2 hours.  How was this possible?  I asked her if she thought we still needed to see the doctor and she told me yes.  Now, she is only 3 so that is a bit of a loaded question.  However, right now she is extremely shy.  Dr. L is not her friend since she has only seen her once.  There was nothing fun about her office and A didn’t like that we had to wait for her on Monday.  In reality we didn’t have to wait for her.  She saw us on her day off and was taking care of many things.  We had to fit into that which A saw as having to wait.  We were there for about 5 hours on Monday.  A told me she wanted to see the doctor because she was very worried.  We went through all her worries and they consisted of all the children she saw get hurt this summer and whether they were ok, Grammy’s cold and if she is better yet, other children taking toys away from her and her not being able to deal with it when this happens, what would happen if she burns her finger and on and on.  This was the first time  she had really shared her worry list with me.  I know that children worry about a lot of things.  But I don’t know that the 3 year olds spend all their time worrying.  If there are any non PANDAS parents reading this who want to chime in with a comment, I would love to hear it. 

We then eventually got back to Dr. L who somehow fit us in.  We went in and weighed and measured A for her new prescriptions.   Dr. L took us in to one of her rooms and asked A what had happened between yesterday and today.  There was no way A was going to talk to her so I briefly told Dr. L the story of that morning.  But I didn’t tell Dr. L all of A’s worries.  I wanted A to use her own words.  We asked her and asked her but A wouldn’t talk.  Finally Dr. L started asking her the question in a different way.  A started to get vey agitated and was facing the wall with her back to Dr. L and would only occasionally look at me.  All the sudden she blurted out “I’m afraid I’m going to die”.  I gasped and almost fell off the chair.  I told Dr. L she has NEVER said that before.  Dr. L told me this was very common.  I said it’s not common for a 3 YEAR OLD!!!!  And she told me no, it’s common for PANDAS children.  At that point Dr. L said she was going to see if her crew could fit us in for PEX.  

We spent the rest of the day waiting around to see if we could get in.  PEX takes between 2 and 4 days to do. They don’t want to do it over the weekend so I wasn’t sure if we would even be able to do it even if they were available.  As it turns out the hospital is full from the swine flu so we couldn’t get in.  While they were trying to decide what to do with us and when they could get us in I tried to decide what to do with A and I.  Should I stay in DC?  Go to a friend’s house in Richmond or fly all the way back home?  I was so at the end of my rope that I was incapable of making this decision.  Plus, it was already 4 pm.  Luckily John was available and was able to be rational for me. 

After we went back to Dr. L’s office they told me we could hang out in DC until they might get us in or they could schedule us for October 26th.  Even I was able to say that we should go with the scheduled option.  We got the prescriptions for the steroids and the new antibiotic and ran for the airport.  We got to the airport and found out there was a delay for our outbound flight.  We taxied and sat for 90 min and then flew for 6 hours.  We missed out connecting flight and had to spend the night in the airport.  I was terrified of the germs that A was coming in contact with.  But, we finally got out this morning and made it home. 

 

Ped Visit September 25, 2009

Filed under: medical — pandasmom @ 3:26 am

At 5:00 today our nurse called and asked us to come in tomorrow morning.  Our ped just spoke with the immunologist that we want to meet with.  The ped told our nurse that there was too much to convey to me over the phone and she wants to meet with me in person.  So we are going in tomorrow. 

This of course makes me both nervous and excited at the same time.  I’m hopeful that I will walk in and she will tell me that the immuno doc says everything we have done up till now is right on and has a plan of attack for us.  But I am nervous that the ped has laid out our story for the immuno doc and he will think we are nutcases.  I’m not too concerned about that because we will always have our ped to work with.  But I do feel we need an additional specialist to work with us on this.  Luckily our ped is personal friends with the immuno doc so she said she knew he would listen to her and take her seriously.  I am just anxious to see where this will go from here.

I also now have to take both girls with me to the ped’s office tomorrow.  That alone fills me with anxiety because I have to expose both of them to all of the germs in her office when we are currently doing well.  I am clearly forming my own set of OCD around germs.