Food Fun!

Food Fun!

Please feel free to share these food pics, as long as you credit and link back to my blog page where you found the food pic.

Thanks & enjoy!

😀

Hollow bell of Trombone cake
with removable large and small mouthpieces at far, right end
Hollow bell of trombone cake
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Trombone cake 2012
Front view of husband's 2012 birthday cake
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Strawberry Cake
Hope & Faith - celebrating birthdays together
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Easter Cross Cake 2011
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Creamy Parmesan Shrimp and Okra
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Orange Cream pastry, sliced open
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Chocolate “Lasagna” Cake
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Wedding Reception cake
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Easter Cross Cake 2010
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Side view of iPod Birthday cake 2010
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Steelhead Trout
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Corned Beef Brisket, Cabbage & Carrots
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Glazed Roasted Duck a l’Orange
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Coconut Macaroons
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Lemon Ginger Shrimp & Scallops over Wilted Spinach
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Rash on Left Arm

Faith was with her dad over the weekend.  By the time they returned Sunday morning, she had a rash all over her left arm and a small area on her left chin. Her PICC line is in her left arm; that is where the Rocephin antibiotic (for the strep throat infections she’s been unable to clear for over a year and are triggering PANDAS in her case) is being infused daily… for fourteen days.

Suspecting the latex in the sleeve over her PICC line (or a chemical used in the processing – this happens with most fabrics, which is why we wash new items before wearing clothing or sleeping on sheets), I removed it, washed the rash areas with soap and water and applied a hydro-cortisone cream.  Continuing the cream, some areas improved, but the area inside her elbow and near the dressing for her PICC line remained very angry and itchy.

Our Allergist/Immunonologist checked it yesterday and thought the same thing I did.  He suggested watching her for symptoms after latex exposure as his first thought was contact dermatitis related to the latex.  He prescribed a stronger cream for her arm (as well as antihistamines around the clock) and wants to continue using the OTC Hydrocortisone on the facial areas… it’s on her cheek now too.

Unfortunately, part of the rash is under the PICC dressing, which we are unable to remove, except for cleaning and changing it once weekly, until her treatment is complete.  Thus, she’s having a rough time with that area.  The PICC line will remain in her arm at least through the end of next week…. we’re waiting for test results on Myco P and Lyme to determine if she might need further antibiotic treatment.

No improvement … more aggressive treatment

If you’ve been to my About PANDAS/PITAND & Links page, you’re aware that Major Depression is a symptom in approximately 36 % of cases.  In Faith’s case, this has reached an urgent level as she is having disturbing thoughts.  We discussed it at length yesterday with her counselor and are ensuring her safety.  Her medical doctors are aware.

We met with her Pediatrician this morning, who ran yet another strep test… which was yet again – positive – even on a strong dose of oral antibiotics twice daily.  😦 This means that the antibodies are still active due to the recurrent strep throat infections and that the antibodies continue to attack the basal ganglia in her brain…. for over a year now.

He ordered antibiotics via Intravenous infusion for 14 days.

After FOUR needles sticks (not her nurses fault or hers… nurse is skilled and Faith has good veins – we think the catheters are defective), we achieved an access!  Four nurses in the room working on it… counting Momma RN, me.  The staff nurses were great and Faith was soooo patient and calm – I was so proud of her!!!  The infusion ran fine.

We are due at children’s hospital first thing in the morning for PICC line placement.  Her nurse established daily infusions of the antibiotic for her.  Our doctors are consulting about her next high dose IVIG infusion.

The troubling thoughts continue at this point… we hope that in eradicating the strep infections and arresting the auto-immune process, we’ll be able to finally stop the relentless attacks by the antibodies in the basal ganglia region of her brain.

We *KNOW* that we are in God’s loving hands.  We *KNOW* that He *WILL* heal her in His time and we rely on Him.  In appreciation of your prayers, love and support…

High Dose IVIG more often

As most of you are probably aware at this point, Faith improves a little more after every IVIG infusion; however, at just past three weeks from the last infusion, she starts to decline again.  Clearly, while it helps her, she is not yet stable.  Also, she continues to test positive for strep throat (as recently as Wednesday of this week), even on antibiotics and with the high dose IVIG infusions… she has not really cleared a strep infection in over a year.

I’ve been pursuing more research literature on Pubmed/Medline as well as meeting with doctors to seek help and determine what treatment plan they think would be best for her.

Our specialist (Immuno) wants to have Faith do IVIG every four weeks until she stabilizes.  At that point, he will re-evaluate and determine what she needs next.

So, this is a HUGE praise that she will finally be on a better track and we are hopeful that in time the treatment will help her.  Please keep in mind though, that this must be scheduled for the next infusion (she is already over 5 weeks since her last one at this point), so we are not looking at her being able to have this immediately.  Additionally, while repeat IVIG does WORK and help children with PANDAS, we’re talking about a child who has been sick for quite a while…. years… probably about 6 years and this is her second severe exacerbation.  We can’t anticipate healing to be immediate… it will take time – likely months… but we ARE hopeful that it WILL happen for her… at least much better than she is now… how much recovery, we do not yet know.  We continue to pray and trust that she… and we… are in God’s hands.

Thank you for your continued prayers for my sweet, precious daughter… God is listening and He is with us.  ♥

Sick girls…

Ok, so… Faith insisted that she had strep over the weekend.  The child has yet to be wrong (maybe one negative – perhaps a false negative as she tested positive again soon after).  You probably will not be surprised that I have rapid strep tests at home – ran one – negative.  She insisted more fervently the next day… ran another that night – negative.  By Monday, there was no question for her that the strep tests were false negatives (there is about a 20% false negative rate on those) even though I checked controls on the second one.  Brought her to see our Ped today… who ran a strep test.

Does anyone care to guess the result?

Yes, that’s right… he came back in the room and announced it is positive and yes, she IS on antibiotics – and no, it is NOT a prophylactic dose, it’s a treatment dosage that just like all the others all these months – is not working (and yes, I DO know that is a run-on sentence, just in case anyone thinks I don’t know any better).

Grrrr!!!!  Not at him… her Pediatrician is a wonderful doc she has had since early infancy, but may I just say that I HATE STREP!!!  I looked back over her records to confirm what I suspected:  following her T/A (Tonsillectomy/Adenoidectomy) in August 2009 after which we saw improvement for several months … until she caught strep again in spring 2010… it was March 5, 2010 when she started back on the antibiotics.  It has now been over a full year since she has been able to actually clear a strep test and hold it longer than… oh say, about three days… perhaps never cleared as I didn’t always take her in the day after she completed antibiotics in the beginning.  Now, I’ve seen her test positive while on antibiotics several times.  Further, she now has a few high dose IVIG’s under her belt.

So now she is on Augmentin AND Azithromycin and we’ll check in with our Ped again as we near the end of those to determine where she is on this and what to do next.

She has thrush also…. he bumped her Culterelle (adult dosage) to three times a day instead of twice and we’re looking into Kefir grains so we can make it for her since there are more probiotics if unpasteurized, so it is more potent at helping with such issues.  Diflucan too… and immune supplements – two of them, twice daily.

Immunologist here (having terrible time reaching the one in CT) says there might be something in her labs for Mycoplasma Pneumoniae and for Lyme Disease… our Ped’s office is looking into getting me the name of an LLMD (Lyme Literate Medical Doctor) we can see to help interpret those labs and if she needs Lyme treatment before further IVIG… which she may need more often than she is scheduled at this point since she is clearly not clearing strep yet.

Did I mention that I was up vomiting several times last night?  Obviously, recurrent strep makes me sick!!!  … in more ways than one!  😉  Initially, I thought that was a horrible migraine warning me of impending rain (yeah, I have a clever meteorology system built right in), but not so much now… still weak and a little dizzy from that but I’m loading up on the fluids and electrolytes… Mommy handbook says no sick days.

Sigh…. I am tired.  I think I am going to put the entire situation on hold for this evening and watch a movie with my little one.

Pray for us?  Please?

I do know God is with us; going to take a break and trust in Him.  ♥

Strep throat and another trip for IVIG infusions

I am sick with strep throat.  Faith is not feeling well either and thinks she has it too… entirely possible.  We leave first thing in the morning to fly to the infusion center for her next 2 day IVIG infusion… please pray for us; the last few days have been difficult and I’m concerned about how this trip will go for us; we are entirely in God’s hands.  Thank you!

Strep… a new project and dietary changes

I have strep throat again myself (4th time in five months for me – many, many more times for Faith).

We will be traveling to her CT immunologist again this week for another IVIG infusion for her, which will be done over a two day period. The infusion center is very nice and quite comfortable for the children. The nurses are absolutely wonderful with them; we are so thankful!! Faith must be well hydrated before, during and after these infusions, to minimize side effects of the IVIG… that part can be quite challenging when she has a sore throat… which she often does due to the strep throat and she does right now.

I’m going to be collaborating with other health care providers (I’m an RN, for those of you who do not know) on a project in which we will gather a ‘snapshot’ view of PANDAS patients to better educate our peers and help improve care for our children with PANDAS. I’m looking forward to making more headway in that area.

I am also researching dietary support for her immune system and will be making more changes to her diet… likely wheat gluten and casein free… this one will involve more work than what I’ve already done for her (eliminating dyes, caffeine, sugars and reducing carbs while increasing protein… and no pre-prepared or processed foods), but I hope will be well worth it as I know a lot of PANDAS moms have found very good success in reducing symptoms.

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