Pandasmom's Blog

living with PANDAS, not the furry ones…

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.  

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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.

 

How to explain to others? March 16, 2010

Filed under: Bad days — pandasmom @ 9:32 pm

My experience has been that unless you are the caregiver of a child with special needs you can’t quite grasp the severity of a situation involving such needs.  I feel like John and I have attempted to explain A’s situation and health issues to those who need to know or those we want to know.  But how do you adequately explain this situation unless you have lived it in our house for the past 18 months?  I have come to the conclusion recently that unless you are the parent of a child with needs yourself it must be impossible to grasp.

I know that before we found ourselves in this situation that I viewed children with invisible disabilities entirely different than I do now.  Since this has been going on for so long, I am starting to be able to see a few positives that have come from this.  But the one obvious benefit that has come from this whole journey is our entire family’s increase in compassion for others.  I think that all 4 of us have gained a unique ability to look at situations and people from more than one angle.  There is a quote that I have come across recently that reads something like “Treat people more gently than necessary…Everyone is fighting an unseen battle”  I find this so true with special needs.  There is no way to understand each person’s unique situation unless you live in their house.  However, none of it is made up and the situation is extremely difficult. 

The one thing that I do wish was different in all of this would be that A’s difficulties were either more visible or more easily understood.  Of course I don’t want her to have a physical disability but those are much harder to question.  The moral of the story is that you can’t change anyone but yourself.  What John and I need to do is to extend our compassion to ourselves and those that pass judgment, I guess.  We need to accept that the majority of the world is not able to truly understand the depths of A’s problems.  This is no fault of their own, they just haven’t been forced to live in such a situation.  We need to remember that we are doing everything we can possibly do to help A get better and be the best she can be.  When we take people’s remarks to heart it only serves to knock our family down a rung on the ladder.  It takes us so much effort and so much time to get up each rung that we simply cannot let the world knock us back down.  We have already hit rock bottom and we can’t go back there. 

This is sure easier said than done….

 

Surprising Days

Filed under: Good days — pandasmom @ 9:09 pm

Today is a good day.  In fact, I think the past few days have actually been good, but today is definitely a good day.  When days are good they catch me off guard because I am not expecting them and am not used to them.  It is such a joy to watch and be a part of.

John took A to preschool this morning and C and I had a leisurely morning at home.  This is something we never do.  However, last week was a hospital week and I thought C could use some time by herself with mommy at our own house.  We had such a nice morning doing absolutely nothing.  We picked A up from preschool without any issues and even went to the grocery store.  Anyone who reads this and has a child with special needs will understand that you don’t go straight from preschool to the grocery store.  EVER.  In fact, you just don’t go to the grocery store with the child with needs.  But we pushed on and had an extremely successful trip.  It was shocking. 

After the girls had lunch, they sweetly went into the playroom to play doggies and played on their own for over an hour.  There wasn’t a single fight or any need for mommy to intervene at all during that time.  Such interactions are unheard of in this house.  It is these types of days that are surprising to me because I am unable to expect that they will happen.  It is such a delight to be a part of it.  I’m sad that we have an appointment this afternoon that we have to pack up and leave for.  But that is nice feeling to have. 

 

February/March Update March 11, 2010

Filed under: Uncategorized — pandasmom @ 2:28 am

The last month has been a challenging one.  The past 18 months have been challenging, but I found it hard to stay positive over the last month.  However, we have had some positive signs that have been just enough to keep me going.

Because circumstances have consistently worsened for all of the last 18 months, it has caused John and I to continue looking for a further diagnosis.  Meaning, does A have something more than only PANDAS?  OMG, that sentence sounds so tame.  PANDAS alone is enough to flatten one family.  How could you add something else on top of it and expect to survive.  But, because nothing we did seemed to make any difference for A, we continued to look for an additional diagnosis.  It seemed that every other family was able to see some relief from the remedies we were trying and any relief we saw was minimal and short lived.

I feel like more pieces of the puzzle came together over this last month.  But, boy was it challenging!  I want to account it here for anyone else who might be able to benefit from our story.

7 days before February’s IVIG, A needed a 5 day dose of steroids because her symptoms flared.  Right after the steroids ended we did IVIG.  Within 4 days of that IVIG treatment her symptoms returned with a vengeance and she needed steroids AGAIN!  I am not a doctor but I am starting to get familiar with steroids.  A was on steroids 16 out of 28 days which tells me she has a chronic inflammation problem.  I don’t really know what that means, but how would one solve chronic inflammation…?

There is another mom at ballet who has an autoimmune disease herself and is familiar with A’s situation.  When I told her about the steroids she asked me if I had tried the Anti-Inflammatory diet.  She said it was a diet of foods that would reduce inflammation in the body.  It sounded very simple to me since it is just food.  I came home that day and researched it and found that there is quite a bit of information on the anti-inflammatory diet.  It is different than the Gluten free/Dairy Free diet but not all that much.  It’s a bit easier than the GFDF diet as far as I can tell.  Also, the literature that I have read so far said that a person could see results in as little as 7 days.  All the foods are ones that A already loves but are just tweaked a bit.

We started A on the diet right away.  Also, while reading about this diet, I came across a supplement that has natural anti-inflammatory properties to it.  It is turmeric or curcumin.  We also started giving this and more Essential Fatty Acids to A as well.  We are definitely still learning but the past 10 days have been very good.

If it weren’t for what happened on Saturday, I would chalk this up to just a plain old “our time for some good luck” and nothing more.  But, on Saturday, everything went crazy.  All of A’s symptoms returned and then C showed signs of strep!!!  We ran a strep test on C and she was indeed positive for strep!  John and I were scared to pieces.  We felt like we had finally had a glimpse of a decent few days and we were terrified that they would be snatched away again.

We immediately gave both girls a dose of Amoxicillin and then gave A her dose of Curcumin.  And we were shocked that on Sunday, A was fine again and has been fine since.

Since it has only been 10 days, I’m still not a believer that we have found our needle in the haystack, but I do think that we may be on to something with the curcumin.

 

IVIG again

Filed under: Uncategorized — pandasmom @ 1:59 am

It has been a very long time since I have posted and now we are back in the hospital for this month’s IVIG.  We are just finishing up our second day and are looking forward to going home.  This hospital stay was a pretty positive experience, aside from A having to get 4 pokes.  That wasn’t too great. 

We did our usual walk through the hospital in A’s hospital gown.  I am not sure who derives more joy from this.  photoThose who are visiting loved ones in the hospital and see this innocent 4 year old with an IV in her hand and her bum hanging out in back or A, obliviously walking through the hospital, up and down the escalator looking at all her favorite things.   After having been in this hospital so much over the last year, A has several favorite items here and we are on the lookout for them each time we check in.