End of the school year …

Well, the quarter, semester and year are finally behind us.  Those of you who have been reading my blog for a while are aware that she was too ill to attend school by mid-December and was hospitalized for several days at Christmas… released to come home by Christmas afternoon.  She was a very sick child at that point.  The antibodies attacking her brain (due to the Group A Strep infections) were doing so much damage that I worried if she would recover to something close to where/who she was before she became so ill.  We’ve seen a lot of specialists, both in and out of state since then.

She began Home-bound Education once she was well enough to start work on her classes and continued for the remainder of the year, when she was well enough to learn/work.  We were blessed with her Math teacher asking if I would mind him being the one to do her Home-bound Education.  Mind?!?!  No, I do not mind… we would be ever so thankful, in fact!!  Due to math skills being the most severely impacted and the emotional lability that goes along with PANDAS being so severe, working with this particular teacher proved to be very beneficial for her while she slowly began her long recovery… that is still ongoing as it takes the brain a very long time to heal.  She was rarely able to meet with him at first, and there were plenty of bumpy days… but, she pressed through feeling lousy and she persevered in completing the school year.

Faith completed her coursework for her core classes and was able to attend several days at the very end of the school year.  It was hard on her in many ways to attend school; but, she was especially excited to be able to attend a field trip to a college, which is part of the college-preparatory program in which she is enrolled.  As one of the chaperones on the field trip, I was able to snap a couple of photos… kind of a neat shots.

Kids on the Staircase

Looking down Staircase

We received her report card.  Due to being so extremely ill, she was exempted from her elective classes.  She was very disappointed to miss them, especially Drama, which she plans to take next year.  Personally, I think we had enough drama this year.  😉

She earned straight A’s for the final quarter, one B with the rest A’s for the semester and her final grades for the year for her core classes.  Looking at her GPA, one can follow her medical progression through the year as she started to decline first quarter (M1 = Marking Period 1), was hospitalized second quarter (M2), improved a little by third quarter (M3) and a little more by fourth quarter (M4).

The straight A’s and reading on a 12th grade level might lead one to believe she is completely well and back to normal now.  She’s not; but, she is much better than she was six months ago and we are thankful for the progress she has made and the healing that has taken place.  God is SO awesome!!!

It’s in the face of still being quite ill and healing that she has accomplished this; thus, I’d like to add that my daughter is rather awesome herself and I am so proud of her for the courage, perseverance, strength, tenacity and determination she has shown this past year, in the face of very challenging circumstances!  :~D  She has demonstrated that she will do well in life!

FINAL 6th Grade Report Card

KEY:

  • M1 = Marking Period 1 (GPA 3.692)
  • M2 = Marking Period 2 (GPA 3.25)
  • S1 = Semester 1 (GPA 3.60)
  • M3 = Marking Period 3 (GPA 3.75)
  • M4 = Marking Period 4 (GPA 4.000)
  • S2 = Semester 2 (GPA 3.833)
  • FG = Final Grade for the year (GPA 3.667)

For seventh grade, she plans to take:

  • Advanced English for 7th grade
  • Math 8 for 7th grade
  • History
  • Science
  • Spanish (second choice is Latin (which she had the beginning of 6th grade), third choice is French)
  • Drama

This summer, we are holding on her IVIG infusions and the antibiotics as we wait for her liver function levels to decrease and we will see how she does without medication as her brain continues to heal.  It is there if we need it, such that we can have it done quickly, if need be.  Hopefully, she will do well without it…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In the midst of the final month at the end of the school year, we wound up with a broken pipe that caused water damage in our kitchen, ongoing IVIG infusions and trips to medical specialists for PANDAS, two weddings and now three unexpected funerals… the most recent of which is for Dan’s aunt, who was a sweet, precious soul, whom we loved very much and we will miss a great deal.  Never having children of her own, she jokingly referred to Dan and his siblings as her “Rent-a-Kids”!  :~)  The following is a photo of her and Dan, taken at our wedding reception.  Rest in peace, sweet Aunt Fonnie… you’ll be missed.  ♥

Dan with Aunt Fonnie at our wedding

Off all antibiotics temporarily

As most of you know, Faith has been on antibiotics most of the past 15 months to try to eradicate the resistant strep throat infections she has, that lead, in her case, to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).  She’s has not attended school since mid-December & soon after a hospitalization for several days at Christmas, she started Homebound Education to keep up with her studies.  She’s worked very hard on her school work and her grades are good; I anticipate she will make honor roll and I am so proud of her!

However, the strep infections continue to resist treatment.  Thus, our pediatrician is pulling her off all antibiotics temporarily to allow them to get out of her system so that we can do a C & S (culture & sensitivity), in hopes that this will, once and for all, give us the information we need to choose the correct antibiotic(s) to eradicate this incredibly virulent Group A beta-hemolytic strep infection.

She took the last dose of her antibiotics yesterday morning.  Just as I was learning about a social situation she struggled in while at school today and we were discussing it, she declined into an episode.  This one included severe separation anxiety where she was unable to detach from me (literally and physically), unless there was a locked door between us so I could use the restroom, at which point, she became panicked (had a panic attack), tried to get through the door (in her panic to get to me) and became mute… she was able to write what she wanted to say (although with barely legible handwriting… see handwriting examples below), but could not speak for a while, and then, not clearly enough to be understood.

It lasted probably about 1/2 hour for the worst of it.  Poor child… my heart breaks for what she goes through when the antibodies attack her brain like this.  All I can do is imagine what it must be like to endure this medical condition.

Prayers for her (and the results of the strep culture that will be done this week) are especially appreciated these next few days as she is without any antibacterial support as we seek to determine our next step for that medication to eradicate these seemingly never-ending strep throat infections.  Also, she is trying to attend this final week of school (last day is Thursday, this week), making it more of a challenge for her than being home.  Hopefully, this difficult week will pay off with great results if we can gain valuable information from the C & S.

Please see below for more insight into this condition with handwriting samples of hers over the years, both when she is not afflicted with this condition and when she is.  As always, if you should have questions at any time, please feel free to comment or use the Contact Us page to email us.  Thanks for following our story; God is with us on this journey!

Second grade, spring 2008

Homework in 6th grade, Spring 2011 (taking antibiotics, but strep not yet clear)

May 8, 2011 for sample on right on card (uncertain of date for left sample on paper) Sample on right -> taking antibiotics, but not yet clear of strep infections... 2 days post IVIG infusion @ higher dosage

June 13, 2011, evening -> middle - end of episode (typical sample when episodic)

Home from out of state doctor trip – update

We arrived home safely very late last night.  She looked really good during the infusion itself; but, clearly sinking on the way home…. nothing as bad as on the way home from the Christmas hospital admission – not even close.  But, could see her color was fading and the circles under her eyes were prominently dark.  “Flipping back the pages” is a known situation following IVIG infusions for PANDAS kids.  I did see a bit of an increase in her OCD symptoms last night.  She was determined that the locks for the tray tables on the airplane must be straight – vertical if closed and horizontal if open.  If I turned them crooked, she “had” to correct them.  I asked why and she said, “they HAVE to be straight”.  When asked about all the others on the plane (don’t worry – we were about to land 😉 ), she said she couldn’t see those.  Whew!  She was playful and smiling about it this time, but unable to leave them crooked.

She went to sleep as soon as we arrived home, without changing… good thing she was wearing comfy, soft leggings and a t-shirt.  I was not far behind her.  I had a very rough night at the hotel with very little sleep and was exhausted… hopefully, we will both be able to rest a lot today and this weekend.

Did I mention Whole Foods?  There is one near her doctor’s office – I really wish we had one near us, but we don’t, so I brought an extra bag (and bought another while there) so I could stock up on healthy, gluten free foods for her.  I bought Bob’s Red Mill gluten free flour as well… I might be able to get that locally; going to check – that would be best as I am happy to make my own things from scratch anyway.  At our first visit with her doctor last month, he indicated that we should be avoiding processed foods; fast foods, etc. and opting instead for the freshest choices, made at home, so that is what her dad and I are working toward providing for her to help heal her immune system.  Because there is so much improvement noted for PANDAS kids with dietary changes including gluten-free and casein-free and because Faith did have some food intolerance‘s as an infant and has been so very ill with this condition, and has CVID, I am also working to eliminate those for her, in addition to strictly limiting sugars/carbs due to her Reactive Hypoglycemia.  The dietary issues are certainly challenging, but as they help her immune system to heal and her health to improve, the benefits are clear.

This morning is typical of the day after her high dose IVIG infusions, she tells me that she:

  • feels more like herself
  • sore throat is gone – she has one constantly from strep infections, but the infusions are helping enormously!
  • headache is better – rating at 2-3 now – it’s usually a 4-5 on pain scale of 1-10 (10 being worst pain ever experienced)
  • nausea is non-existent this morning; that may change as day proceeds; often worse at night, but she feels well today.  🙂

That makes for a relieved and deeply thankful Mommy!!!  😀  Her doctor wants her back in eight weeks for the next infusion.

I am still exhausted and have to run to the pharmacy to pick up some scripts for her… hopefully, we’ll be able to rest more; these trips are so exhausting (probably more for Mommy than patient, but that’s ok ♥), but the result of improved health for her is completely worth the sacrifice!

We met a couple of other PANDAS families from various forums while there, as well as others having infusions at the same time.  It is always helpful to Faith to meet other children struggling with PANDAS as she often feels so alone in fighting this disease.  Meeting others helps her to connect and helps restore her self-esteem.

I’m so thankful that we FINALLY have a doctor who specializes in PANDAS, who is able to help her, after all these years!!!  I am also thankful for safe travel and all the love, concern and prayers of family and friends!!  God is soooooo good!!!  🙂 ♥♥♥

Good evening tonight & upcoming labs…

After antibiotic increase starting Friday, Faith came home tonight saying she felt a little better and did not have to work so hard to hold it together at her dad’s this weekend and thus, she said she was not as tired as she usually is when she gets home from visitation. NO episode tonight, Praise God!!! :~)) A short lived phase of OCD and needed some hugs, but nothing major. She seemed happy and calm this evening; went to sleep easier at bedtime too.
Praying she has a good week.
She’ll have another battery of labs run this week… some are the LFT and porphyrins they have been watching since they’ve been elevated at her Christmas admission, most others are for co-infections often seen in kids with PANDAS /PITAND : Mycoplasma (often causes childhood pneumonia… she had @ pre-school age), strep titers, Lyme IGeneX panel and her Immune globulin levels to prep for next IVIG.

How is she doing?

I’ve received a lot of questions about how Faith is doing, especially since her hospitalization at Christmas and our recent trip to see her out of state doctor.

Faith has CVID (Common Variable Immune Deficiency) and her doctor told us that children with PANDAS who have CVID also, require IVIG to get better.  He *hopes* (asked us not to hold him to it as each case is different) to see her at 90% in about 1-2 months and back in school.  We are praying that all goes well and his estimate is accurate!

Faith had high dose IVIG infusion inpatient at Christmas.

 

IVIG in the hospital Christmas Eve & day before

She woke the next morning and told me that she felt better than she had felt in a long time.  I asked her how long and she said that she didn’t remember, but she felt ‘like myself’ again.  We saw dramatic reduction in her symptoms.  It’s important to note; however, that she was severely ill and in crisis just prior to that admission, so yes, a huge improvement, but still a long way to go.

We noticed her declining again with an increase in symptoms about 1-2 weeks before we traveled.

While we were out of town, our return flight was canceled due to the snowstorm in the area; however, this turned out to be a blessing as our doctor and staff were able to obtain approval for the high dose IVIG infusions she needs until August 2011.  She received one before we left.

IVIG in CT – Jan 27, 2011

Initially, she was exhausted from the travel and lack of sleep, as well as the infusion.  Since she’s gotten some rest, we are seeing improvements again; however, she contiues to sleep a great deal (12-14 hours at night as well as 3-5 hours during the day) and is still episodic with symptoms much of the day…. still a long way to go, but she is clearly making some progress!

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