One step forward, two steps back

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One step forward, two steps back

Well folks my intention was to post something cool and fun about WK today but unfortunately we are dealing with some pretty heavy medical stuff. WK’s PANDAS Syndrome which has been in full flare now for going on 2 months. This means facial tics are out of control, rashes, etc. UGH!

I cannot stand his Immunologist who gives us zero time and has his Assistant call me back when I have questions. I asked him months ago to run a blood panel on WK to see if WK had Strep or Lyme and he refused to do so because he said that the monthly IVIG infusions would trump any “real” results. Well I am not a Doctor, I am just the Mom of this special kid, but my gut told me to keep pressing and find a leading Doctor who specializes in Auto-immune and PANDAS cases.  Bye bye idiot. YOU’RE FIRED!

Took us months to get in to see Dr Bhakta and here we are today 1 month after our initial appointment with her bearing not the greatest of news. The positive news is that WK did not test positive for Lyme or PANDAS which he did test positive for originally when he was first diagnosed. His new Doctor thinks he now has PIDD. Definition is noted below:

Primary Immunodeficiency Diseases (PIDD) are a group of more than 100 diseases. These conditions are due to defects in the body’s defenses (immune system).  In most cases, PIDD are associated with acute or recurrent infections, depending on the portion of the immune system affected. Most PIDD are inherited in our genes, so they are present at birth, but they often do not become apparent or diagnosed until late in childhood–or even in adult life. It often takes time for a pattern of recurrent infections or other symptoms to develop before a PIDD is suspected. There are more than 100 different genetic causes of PIDD.

He tested Abnormal/Positive for 8 viruses in his system ranging from Epstein Bar, Whopping Cough to Mycoplasma pneumonia. This doesn’t mean the viruses are active but they are there meaning at some point in his lifetime he was exposed to them and because his immune system sucks he can’t produce the Immunoglobins he is deficient in fast enough.  He is also low in immunoglobulin IgG still after having 19 IVIG infusions, IgM immunoglobulin and Vitamin D.

So……….needless to say I am heart broken and pissed at the same time. If his stupid Immunologist would have listened to me in March of this year and December of 2014 when we saw him, we could have started treating him differently then.

Treatment Plan Moving forward:
1. Move him from high dose monthly infusions to low dose weekly infusions, still conducted at home
2. The infusions in low dose form will be done subcutaneous vs intravenous. A small needle will be placed in his belly under the skin and that will be hooked up to a pump. Each Sub Q infusion (aka SCIG) should take 2 hours vs 1 high dose infusion of 5-6 hours
3. He will not be using any more steroids (THANK GOD) which have caused significant weight gain for WK. Long term steroids could cause Diabetes and lots of other issues so I am VERY VERY happy that the steroids are going away. We have been utilizing them to combat side effects from high dose IVIG.

Dr Bhakta thinks this is the way to go moving forward as “normal” functioning immune systems shed antibodies naturally every 2-3 weeks however they reproduce right away and call it a day. WK is deficient in the two I mentioned above so this is why we treat him with IgG immunoglobulin via infusions to help boost his system back up. The problem is that doing infusions every 4 weeks means his little body is compromised for 2-3 weeks after his system sheds the antibodies which is why it is so difficult for him to be around any sick people, large crowds, etc and when he flares we see the increased tics, rashes, etc.  UGH!!!

So now I am hustling over the next 3 days to work out the insurance, deal with the pharmacy who sends all of the medical supplies and medication, our Nurse, etc making sure that we are good to go on 5/25 which is WK’s next infusion date. His Doctor did say that the Sub Q infusions should cause little to no side effects which is the upside and hopefully without the steroid this will mean he does ok.

The potential downside is that WK gets worse and that his tics worsen and his rash worsens from not getting enough medication at one time.  Obviously we don’t know what will happen until we try but SCIG infusions can be helpful and sometimes patients need to go back to high dose IVIG treatments.  Dr Bhakta did flat out tell me that PIDD doesn’t go away and that this is something WK will have for the rest of his life.  Given today’s medical technology this means weekly or 3 week infusions FOREVER.  He’s 10.  Forever? Really? UGH!

Not quite sure what else to tell you at this point except that he could use some prayers and positive thoughts. I am praying for no side effects and no big set backs. It should take 4-5 months for his body to acclimate to the low dose infusions.

He is so chipper. Always smiling, always greeting strangers and saying “Good Morning” asking what their names are, always working hard in school (for the most part), always happy.  This is why I try and do so much extra stuff for him like Karate, Rock Band School (more to come on this) and Sports.  Every week he works hard at all of his therapies, school, extra curricular activities so that he can go to Lasertag on Sunday (more to come on this too).  He deserves IT ALL in my opinion and then some given the shit he has had to deal with.  I haven’t told him what is going on yet and how his infusion is going to be different. Trying to figure out the right words to tell him.  I am just grateful that his amazing Nurse Rachel will be there by my side.

One step forward, two steps back. Warrior Kid is exactly that….a Warrior Kid.

11 Comments

  1. astronaut says:

    Praying for Grace and strength for WK and WM . Pray u ng for wisdom and most of all miraculous healing by the great physician.

  2. Vanessa says:

    I love your blog because I now feel that I can understand your entire story rather than just the FB status updates. At the same time it makes me sad because I feel like I need to be there in person for you when shits really hitting the fan. I so want to get on a plane and just show up at your doorstep to help you kick Autism, Pandas, and PIDD’s ass!

  3. Kathy. Pinx says:

    After reading your first three blogs it is really starting to hit me with the overwhelming journey that you have been traveling. I really thought I understood what you and WK were going through, but clearly that was not the case.
    Words can’t even begin to describe my love for you and for EVERYTHING you do day in and day out for WK. I am so proud to have you as a niece. As I have said many times, I only wish that we lived closer so that we could provide you will daily support.
    Be strong and know that you and WK are in our thoughts.
    I love you to the moon. ❤️

  4. Gabriela Haimes says:

    Be strong! You got this Mama! You deserve the best and I know you will all get through this difficult time. You know I’m always here for you if you need anything. You are an amazing Mom xoxo

  5. Jane says:

    So sorry to hear about the diagnosis, but glad you are on the right track. It is always such a roller coaster and it sucks, Hoping the steps forward can sustain you and help you to feel the positives and enjoy the wonderful steps forward WK is making. Warrior Moms ROCK!! <3

  6. Amanda says:

    As I always say WK is soooo lucky to have parents soooo dedicated to making his left the VERY best. It shows in his “happy all the time” personality. Bye bye steroids! Love you!!

  7. Vicki says:

    My thoughts and prayers are with your family. WK is a strong kid. With strong parents like you, I know he is in the best hands. Yay to no more steroids. Stay Strong.
    XOXO Vicki

  8. Karli says:

    WK and WM, I admire you both for your strength, courage and tenacity. We are here to support your family in whatever way we can. Keep up the good fight. Trust that you will get over this hurdle. Much love!

  9. Cindy Viadella says:

    Just read this one…wow. WK is truly that: a Warrior Kid. Courage, strength and love! XOXOXO

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