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
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~♥~ Faith's Updates ~♥~ 
Jun 29, 2011 @ 09:37:07
Hi, I’m new to your blog…my son likely has PANDAS since Feb 2011…I have a couple of questions for you….I am a nurse, too….my 4 year old son meets diagnostic criteria of pandas….has seen family practice doctor, child psychiatrist, ped neurologist, has been on several different antibiotics, does well for a while but then seems to have recurrence, even while on antibiotics…per reading some of your posts it seems your daughter had recurrence while on antibiotics, he’s off antibiotics now for 2 days and I’m considering taking him in for a throat culture because he is full of tics and his ocd stuff in the past week.
where do you get rapid strep tests from to use at home? from a store or from a clinic?
what do you suggest for recurrent episodes while on antibiotics?
my sons symptoms are not yet debilitating to him yet, mainly pulls down at his bottom eyelids, shoulder shrugging, ear pulling, super fidgety, butt itching, bed wetting….on his worst days it can be a couple of hundred tics a day. he has had intermittent weeks of symptom free times, but has recurred several times since feb.
we have not done ivig and are holding off on unless his symptoms become debilitating…..thanks for any info you can give, we live in the midwest….best of luck to your family!
Jun 29, 2011 @ 11:32:33
Hi Beth,
I order the strep kits from Amazon. Would I assume he has been diagnosed with PANDAS? Poor kiddo… it’s such a challenge for them. I can’t recommend specific treatment, of course; but, a couple things come to mind. Have you tried a steroid burst or Ibuprofen for the inflammation? How does he respond to those? Also, has he been checked for co-infections or had immunology labs run? If he were mine, I’d check those to determine next course of action.
Do you have a doc who treats PANDAS kids in your area or will you have to travel to see a specialist?
I hope this is helpful… let me know if I can offer more information or resources.
Best,
Denise
Jun 29, 2011 @ 11:38:30
Also, what antibiotic was he taking for the strep? He may need to be switched or take it longer.
Jun 29, 2011 @ 12:18:27
thanks for your prompt reply. 6 weeks ago his ped neuro saw him for the first time and she diagnosed pandas because he had acute onset ocd and tics in Feb 2011 with a positive, asymptomatic strep throat culture, at that time the between some different opinions of mine and fam pract he bounced around on abx for 6 weeks including amox, augmentin, zithro, keflex. (my husband thought he was doing the best on augmentin, but we switched him to zithro only after one week of augm due to a local behavioral pediatrician’s advice). we then finally got the to the first referral appt with the pedneuro and at that time he was then off abx for about 2 weeks. she examined him and his serum aso was 367, she put him on 250mg amox tid for 3 weeks, then 125 tid for 3 months. after 5 days on the 250’s everything went away…thought we were done! then after the drop to 125’s 5 days later stuff was back, aso was then 369, she upped him back to 250’s for the 3 months. 2 weeks went by during which there was then a new, germy daycare and a big wedding…(maybe strep at one of those?) and during the last 2 weeks on the 250’s he has shown no improvement and even has worsened. took him to the neuro for second time this past monday and we all agreed to take him off abx, since they didn’t seem to be helping anyways….she offered mri (we declined), she offered tonsillectomy (we declined)…she said wouldn’t consider plasma or ivig unless sxs were more debilitating, we agree. since he does so much butt itching for 2 months (we’re assuming it’s a tic) today i’m taking him to fam pract to rule out pinworm, yeast (we give him lots of probiotic yogurt though and there’s no rash), etc. ped neuro recommended a behavioral therapist to help with the butt itching (socially becoming a problem) to see if that will help. since i’m taking him today to fam pract, or actually a pediatrician (since our fam pract is on vacation) I will have him do a strep throat culture, and one on me too! that’s where it stands. the ped neuro doesn’t really want to do anything (ibu, steroid burst) unless she can find it proven in a medical journal. that’s where it stands….
Aug 08, 2011 @ 22:28:41
Hi Beth,
Sorry it’s taken me so long to respond. We had a few funerals in one month as well as water damage in our house. Then, I had to prepare for an exhibit for PANDAS-PITAND Awareness & Research Support for the IOCDF conference recently.
I’m not sure where you live, but you might want to check with one of the PANDAS specialists. There are only a few in the country, although a lot of docs are treating PANDAS now. My understanding is that they are using Augmentin or Azithromycin for strep because Amox is not clearing it for a lot of PANDAS kids. Also, might want to check that rash – could be a strep rash. Or, he could have perianal strep bacteria. I know these are not pleasant concerns, but I’d check if he were mine. O/W, I’d wonder if that behavior is a OCD type behavior brought on by infection that has not been cleared.
How is he doing now? Did he take Augmentin and if so, does he seem to be improving?
It’s tough if you do not have a PANDAS doc on his case as so much is new and the lead docs/researchers talk about newer protocols, but it might not have made it to medical literature yet. I understand that Dr. Tanya Murphy (Psychiatrist in Florida who treats PANDAS) is going to be doing a study on Zith soon. Hopefully, that will bring more info for our kids.
We see Dr. Latimer in Bethesda (Pediatric Neuro).
I hope you are seeing improvement.
Jun 29, 2011 @ 12:19:46
oh, and i told the ped neuro that if he goes back on abx that I want to try augmentin….