Author Topic: Mini update (Read 129992 times)

minismom · « **Reply #250 on:** July 21, 2009, 04:05:31 pm »

Got an email from Dr. F and here are Mim's latest labs:

July 2009 (fasting) May 2009 (non-fasting)

Cholesterol: 202 172
LDL: 115 62
HDL: 48 34
Tris: 197 378
CD4: 1061 1205
VL: Undectable u/d

Her lipids are still too high, but not much we can do about them - they looked better in May when she had her blood work done after a nice Bob Evan's breakfast!

Mum

edited to add May's labs for comparison

BT65 · « **Reply #251 on:** July 21, 2009, 06:17:13 pm »

Wow, that's a huge difference in her triglycerides. Great!!

minismom · « **Reply #252 on:** July 29, 2009, 02:31:05 pm »

Seems we're finally turning a corner with the weight issue. This is the first week she had constant gains across the board. Previously, she'd lose a bunch, gain a bit, lose more, stay steady, with a negative gain for the week. This week (from last Wednesday to today), she's gained a couple of ounces everyday - ending the week with a total of 1 pound GAINED!! Let's keep our fingers crossed that she can keep it up.

She's been eating 6x /day, we switched her vitamens to an organic (food based) brand so her body could absorb them, and added extra (organic) B-12 as a natural appetite stimulant. As Dr. F says, we're not going to need to address childhood obesity with her any time soon

He also accused her of guilting him into letting her eat bacon in Boston. Believe me, she had help with that one from *someone* here (hint: it wasn't me!)

Here's to another week of gains.

Mum

Longislander · « **Reply #253 on:** July 29, 2009, 04:08:07 pm »

mmmm BACON!!

Good to hear, mum. Keep up the good work!

Basquo · « **Reply #254 on:** July 29, 2009, 07:44:30 pm »

Quote from: Longislander on July 29, 2009, 04:08:07 pm

mmmm BACON!!

Bacon + Lobster = GOOD EATIN' IN BOSTON!!

Ann · « **Reply #255 on:** July 30, 2009, 09:36:18 am »

That's great to hear that Mini's starting to gain some weight. I've got about 15 extra pounds she could have - if only!

Hope she enjoys the bacon. I love bacon and it's probably part of the cause of my extra poundage!

Ann

minismom · « **Reply #256 on:** July 30, 2009, 03:13:31 pm »

Ann, no kidding. I've offered to be a fat-transplant donor

Mum

BT65 · « **Reply #257 on:** July 30, 2009, 06:48:47 pm »

Mum, that's wonderful news about Mim's weight gain! Give her a hug from me (and Poppy).

MOONLIGHT1114 · « **Reply #258 on:** July 30, 2009, 07:06:02 pm »

Mum~ Great news about Min!!!!

I am happy to hear that the weight is going in the right direction!

~ Cindy

AndyArrow · « **Reply #259 on:** August 02, 2009, 04:17:22 am »

Here's to many more pounds!!!

Everything's better with bacon ... well except maybe the lipids

AA

Miss Philicia · « **Reply #260 on:** August 02, 2009, 08:04:14 am »

So how did the doctor explain what has been going on?

minismom · « **Reply #261 on:** August 02, 2009, 03:03:27 pm »

David, she's increased her overall calorie intake, eats 6 times a day, drinks a protein shake everyday, switched to soy milk, and is now taking organic food-based vitamens. We've also increased the amount of water she drinks to avoid dehydration. He was assuming, as were we, that these changes were helping. Not a "cure" but a good start until more testing is done.

However (and that's a really big however), when she was weighed this morning, she's lost a pound since Friday. Basically, everything she had been gaining, she lost. We'll know more when she has her testing done the end of August. Until then, onward and upward.

On a good note, her energy level is normal and her spirits are high.

Mum

AndyArrow · « **Reply #262 on:** August 02, 2009, 08:35:49 pm »

You must be going crazy. I hope he comes up with some answers to what's causing this and more importantly some solutions.

Hugs,
AA

minismom · « **Reply #263 on:** August 13, 2009, 10:41:34 am »

Just a quick note. We had a wonderful time in Boston at AMG. There was quite a bit of walking which wore her out pretty quickly. Her appetite wasn't up to par, but she ate when she had to (aka when we sat her down and told her she wasn't moving until she ate). She loved being with her guys and misses them greatly.

Her weight continues to fluxuate. She'll have a good upward trend for a few days, then lose it all overnight and we start over again. Her energy is waning, but I'm hoping that's just her body recuperating from the trip. Thursday we're back to see her doctor for lab work, lymph node check, and answers.

In 17 days she'll be 9 - so will her virus.

Mum

WillyWump · « **Reply #264 on:** August 17, 2009, 12:21:46 pm »

What a jewel she is! And the Lullaby she sang brought me to tears!

I look forward to hearing about the upcoming Docs visit.

-Will

minismom · « **Reply #265 on:** August 20, 2009, 09:49:13 pm »

According to Doc's new scale, Miss Mim has gained 5 pounds!!!! According to our scale, it's closer to 1 pound. But, hey, as much as she yo-yo'd, she still came out ahead. We'll continue to weigh her every other day and email the results back to Doc weekly.

She does have an "official" diagnosis of wasting. Today she was tested for an entire host of things via blood and urine. We have slips for stool testing that we'll do here at home (she didn't have to "go" while we were in Ohio). No new meds were started. Doc explained that he doesn't want to mask symptoms, he wants to treat the issues. So nothing will be added until we get back all the test results.

In the meantime our newHIV nutritionist said to add powdered egg whites to her food. They are pasturized (don't need cooked), tasteless (can add to anything), long shelf life (on average, 12 months), and they are pure protien without adding fat or cholesterol.

No HIV labs were done. She'll have those done the end of October.

Mum

PS. she wanted me to tell you that her birthday is in 10 days

Robert · « **Reply #266 on:** August 21, 2009, 12:12:01 am »

sounds to me like the Dr's got a good set of scales ~~

robert

Snowangel · « **Reply #267 on:** August 21, 2009, 10:36:14 am »

Good job to you and Mini for the weight gain!

Happy soon-to-be in 10 days Birthday

minismom · « **Reply #268 on:** August 21, 2009, 01:37:28 pm »

Finally found the powdered egg whites at a whole food store. The nutritionist made it sound like it would be a piece of cake to find. Maybe in Ohio, but not in WV. Anyway, the lady said she'd have to order it because it was expensive. The cheapest and smallest she could find is $53.99 for a 5lb bag.

I told her to order it - Mim needs it and nobody else has it. It'll be in on Tuesday which means I'll have to haul all the kids back out of town to pick it up. I feel like we should sell the house and live in an RV - we're on the road more lately than we are at home.

All of you have an amazing weekend!

Mum

edited to add: LOL, Robert. Doc's scale is great for her, but since it measures 4lbs heavier than our's, I'll stick to the one in our bathroom for me

Inchlingblue · « **Reply #269 on:** August 21, 2009, 01:43:47 pm »

If you search for "powdered egg whites" on Google there seem to be some good options.

I guess you already ordered that one but you might want to check online for next time.

Although 5lbs. is ALOT, it should keep her in egg whites for a while, lol

minismom · « **Reply #270 on:** September 01, 2009, 08:16:09 am »

The lab called yesterday to let us know that the D-xylose test ordered is a bit more involved than just a stool sample. Starting this morning, she's not allowed to have any fruit, jam, jellies, or pastries. They contain a sugar (pentalose?) that messes with the test. Then, after supper, she's NPO (fasting).

We arrive at the lab at 7am tomorrow morning and she'll have a blood draw. Then, she'll have to drink some formula. 2hrs later, she has another blood draw. We have to stay there for 5hrs while they collect her urine for that time. The hard part is that she's not allowed to eat or drink anything other than water from dinner tonight until the test is over - about 18hrs. She won't have an IV or anything and I'm sure she'll be more than hungry (and sick?) by the time she's able to eat. I NEVER eat when she's fasting, so it'll be a very long 5hrs for both of us.

According to the lab lady, this is a very rare test and it will have to be sent out of state. It could take a month to get all the results. It was funny that she told me to bring something to comfort Mim after her blood draws and that she would have a couple of people to help "hold" her during the stick. I laughed - Mim LOVES having blood work done. Try holding her down and she's gonna get pissed, though.

Let you know how it goes.

Mum

Robert · « **Reply #271 on:** September 01, 2009, 12:00:05 pm »

It sounds like an ungodly 30 hours. It's going to be a very long day, that's for sure and for sure ol' mini's going to lose a pound or two.

You don't want to go through this again so make sure they do it right the first time. Question, question, question and then ask them one more time and make sure they double-check themselves. Make it clear to them you're not coming back to do it again.

good luck mini and mom

robert

Inchlingblue · « **Reply #272 on:** September 01, 2009, 12:07:46 pm »

I was curious about this test so I looked it up online. One site says:

Do not eat or drink anything (even water) for 8 to 12 hours before the test. Do not exercise before the test. A failure to restrict activity may affect test results.

Your health care provider may tell you to stop taking certain drugs that can affect test results. Drugs that can affect test results include aspirin, atropine, indomethacin, isocarboxazid, and phenelzine. Never stop taking any medicine without first talking to your doctor.

So I guess she can't have much in the way of activity either? I guess they must mean right before the test, not necessarily the day before?

Also, this is one test where it's good news if the result is "positive."

Normal values depend on the amount of D-xylose administered. Usually the test is registered as either positive or negative. Positive indicates that D-xylose is found in the blood or urine and is therefore being absorbed by the intestines.

I wish you both the very best, make sure to report back!

LINK:

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003606.htm

minismom · « **Reply #273 on:** September 01, 2009, 12:49:27 pm »

The lab lady didn't say anything about not exercising. But, for the test, I'll have to wake her up to get ready, so she'll be taking the test after a good 9 1/2 + hours of sleep. We were told she can't eat or drink for 12 hours before - which makes it 7pm tonight, or just after dinner. By the time she can eat again, it will have been 17+ hours since she'd eaten last - WAY too long if you ask me. The only med she can't have before is aspirin which she doesn't take anyway. Her HIV meds won't compromise the test.

During the test, they encourage her to drink tons of water - so she'll pee a lot, but she still can't eat. I get VERY grumpy when my sugar drops. I think I'll be making "trips" to the bathroom to eat a breakfast bar

Robert, I've checked and double checked and called the doctor to confirm (and check the link from Inchling). All is well and good with the procedure. I'll bring the laptop and some games that she can play along with some DVD's for her watch. And, of course, I'll bring her school work. It would just be nice if after the 2hr blood test, we could go walk around, go to the park or the mall, or something. I promised the lady I'd bring back all her pee

. But, they said that we have to stay there. So, we stay.

It will certainly be intresting.

Mum

newt · « **Reply #274 on:** September 01, 2009, 05:29:34 pm »

Well, d-xylose, this is a mother of intestinal absorption tests, and bugger me if anyone really knows what to do if it's negative, or in mini's case, if it's positive, because that will just mean more tests.

Children with HIv from birth have screwed guts, grow different and all sorts of other things, but time, yes...I know a few* who have grown up to be strapping, smart and articulate people.

I hope this sorts things out, or is at least the beginning of a sort, I really do.

- matt

* cos I only know a few

minismom · « **Reply #275 on:** September 01, 2009, 09:36:07 pm »

Matt, I know, I know, and I know. But if there is ANYTHING under this sun or above it that we can do to give her even a fraction of a chance of growing, maturing, and *being* better, we owe it to her to try and find it. Even if it only brings up more questions, or makes medical-types think a different way, or brings the issue to light to the betterment of those who come behind her, then it was still worth it.

Not sure about being "strappy", but she's the most beautiful jr. pozzie I know.

So many "experts" know so little when it comes to the tiniest of pozzies. It's time they learn more.

Mum

Jody · « **Reply #276 on:** September 01, 2009, 10:17:42 pm »

I'll be thinking of mini and mum and your family...Hope the tests go well.

Jody

Ric Wilke · « **Reply #277 on:** September 01, 2009, 11:09:54 pm »

Mini,

Thom and I love you. Hoping that your tests all come out fine.

Mum and Hubby, hug her for us please!

Love you all, Ric & Thom

minismom · « **Reply #278 on:** September 02, 2009, 03:27:06 pm »

WHEW! We made it. It was the longest 5hrs of my life. Mim did SO well with everything. She never complained about being hungry, she drank the stuff she was supposed to, no problems with the bloodwork (twice), and drank her 8oz of water every 30 minutes.

About 3 hours into the test, she got sick and threw up $:-\$ . I was worried it would invalidate the test. The tech said that it won't because she'd already had all her bloodwork and all they needed now was her urine. I think that the bloodwork coupled with the HUGE amounts of water she had to drink, plus her HIV meds, and the "stuff" she had to drink for the test - all on an empty belly just got to her. She laid in my lap for a while, then acted as if it never happened. As we were leaving, she said, "That had to be as bad as being in jail. I don't think I ever want to be in jail." (don't THINK you ever want to be in jail

)

It'll take a while to get the results, so we're back in a holding pattern. Thanks for all the encouraging words and positive thoughts.

Mum

Snowangel · « **Reply #279 on:** September 02, 2009, 06:48:37 pm »

LOL, she is such a trooper and she is funny to boot. I am glad everything went well today.

Snow

#1 mom · « **Reply #280 on:** September 03, 2009, 12:08:18 am »

I'm glad you both made it through. She remains in my prayers.

next2u · « **Reply #281 on:** September 03, 2009, 01:03:25 am »

that's one awesome lil warrior you have. here's a big cyberhug to lil m ....

minismom · « **Reply #282 on:** September 03, 2009, 07:53:21 pm »

Kids and I came home from the grocery store this afternoon to a message reminding that Mim had an appointment on Tuesday. That's all good and well except I never made an appointment for her. So, I called hoping it was all a mistake. The lady said that it was with the cardiologist. Okay....I asked who made the appointment because I knew nothing about it. It was our EX-PID!! I started laughing. This idiot fell off the face of the earth a year ago, never looking back, never calling. Then she shows up out of the blue NOT making an appointment for us to see HER but ANOTHER doctor?? What the heck is that about?

I told the lady that DrM isn't my child's doctor so any appointment she's made for my child, now or in the future, should be disregarded. I also asked the lady to attatch a note to Mim's file stating that she no longer sees ANY doctor associated with that hospital.

Gotta love the hubris.

Mum

Jody · « **Reply #283 on:** September 03, 2009, 10:50:57 pm »

Dear Mum and Mini...Glad the tough day is over and all went well...The confusion with the doctor was weird, just showing up out of the blue like that. It's good you documented your non-association with this doctor in case a bill for services not rendered is sent out.

Be well folks.

Jody

minismom · « **Reply #284 on:** September 10, 2009, 07:26:35 am »

I got an email from our ever-loving Dr.F, who, by the way, looks a lot like next2's avatar picture. Secret identity maybe? Alter ego?

Anyway, he said that so far all of her extra testing has come back negative (a good thing) and that he's attributing it to "chronic disease progression", which he says is a good thing - she doesn't need to battle something else. I see his point, but don't find it very comforting. We're still waiting on the D-Xylose test.

On a happier note, school is going good. Her issues are her issues and we're trying our best to work with them since we can't seem to move beyond them. She's learning to read and write poetry. Of course Science and History are still her favorites. Tomorrow is our first day of co-op where she'll take a home ec course, an art class, and learn sign language (taught by me). Monday finds us back at dance class.

So, "chronic disease progression", whatever. It's just Mim's progression despite a chronic disease.

Mum

newt · « **Reply #285 on:** September 10, 2009, 04:06:05 pm »

so..

1. When is the trip to the White House?
2. Have you started saving for the Prom dress yet?
3. Thanksgiving's coming and that must equate to a few pounds ++

Quote

So, "chronic disease progression", whatever. It's just Mim's progression despite a chronic disease.

Yer, I like that, this is so true

God bless

- matt

minismom · « **Reply #286 on:** September 11, 2009, 07:19:47 pm »

1. White House trip is summer 2010. Actually, we're going to the beach for 3 days and DC for 4.
2. Not saving for the prom dress, yet. But we are working on the questionaire and background check information for whomever wants to take her out.
3. Um...about Thanksgiving. She hates turkey (I think she's jaded since eveything she eats is made out of turkey: ham, ground meat, bacon...) But she does tend to linger near the dessert table (where everything is made with Splenda. Shhhhh!)

Matt, my sweet darling, can your avatar get more handsome? You are one humdinger of a beautiful man

Mum

minismom · « **Reply #287 on:** September 16, 2009, 05:52:01 am »

Got the results of the D-Xylose testing - and it was negative (or positive, whichever way you want to look at it - there's no problem). So, again, it's all chalked up to disease progression - 9yrs in and 9yrs old. Her weight dipped a bit about a week ago, but has held steady from there.

Back to the ENT today for a follow-up. Not quite sure what he's going to do since her issue is neurologic.

I did want to tell you that she has decided to enter a pageant on October 2nd for our town's Apple Butter Festival. I HATE the idea of beauty pageants - you have no idea how much - but to her it's more of a talent show, which is fine with me. She filled out a questionaire that will be used for her "interview", then the talent, then the winners are announced. Queen gets to ride on the back of a convertable during the parade on Saturday. She's not a fru-fru dresser and asked if she can wear jeans. I laughed and showed her the dress she'll be wearing - she wasn't impressed

Our youngest son wanted to compete in his age group, so we thought why not. He'll also have an interview, talent section (he'll sing while my dad plays the guitar), then they play musical chairs to show good sportsmanship.

That's all from this side of the Mason Dixon. Make it a great Wednesday!

Mum

AndyArrow · « **Reply #288 on:** September 19, 2009, 12:45:27 am »

I haven't been keeping up on Mini lately with all the things going on around here but they are settling down and now I see how much has been going on ... lots of tests & a missed Birthday!

Hopefully, the powdered eggs will do the trick & help her gain some weight.

Good luck to Mini & your young son in the Apple Butter Festival competition!

Hugs,
AA

minismom · « **Reply #289 on:** September 22, 2009, 06:36:54 am »

Andy, hun, you have had so much on your plate, hun, I'm suprised you still know your name. You just take care of yourself and your hunny. We're not going anywhere.

Mim's vision is failing again. Several times during the day, it just goes out. She said sometimes everything gets really blurry and other times things are just "gone". I asked her if the world turns black and she said, "only in spots". I emailed DocF to let him know. He's going to contact Cleveland Clinic and see if they have a peds neurologist who specializes in neuro-occular events. LOL.."events" - at least it's better than "chronic disease progression". Seems the past 17mths have been one giant event.

On the flip side, her ENT gave her an A+ during her visit. The lymph nodes in her neck have gone back down, her ears look good, the candida on her gums is gone, and she still can't track worth a flip. We go back in January (weather permitting).

New dog will be coming home on Saturday. Can't wait!

Mum

BT65 · « **Reply #290 on:** September 22, 2009, 12:06:57 pm »

Mum, great news from the ENT! Yay on that.

So, does Mim have "floaters" in her eyes? Just wondering; not that I'm a doctor or anything. I hope this can get sorted out. Please give her a hug from me and Poppy.

pozniceguy · « **Reply #291 on:** September 22, 2009, 03:12:27 pm »

Just wanted to let you know that I am thinking about you and sweet Mim... hope the eyes thing gets some good attention..... give her a hug for me.

Nick

BTW say hello to Oscar and tell him I really appreciate how he seems to just roll along with all this turmoil

#1 mom · « **Reply #292 on:** September 22, 2009, 06:43:45 pm »

Mum - I'm sorry to hear mim is having vision problems again. I hope Doc F has a referral for you. If he doesn't Dr. Joel Weinstein is a pediatric neuro opthamologist at Hershey. We have not seen him, but that is who Lucas' neurologist said we should see if his opthamologist and vision therapist can't agree on the best course of treatment. I can get you the number and address if you want.
Amy

J.R.E. · « **Reply #293 on:** September 22, 2009, 07:45:27 pm »

Quote from: minismom on September 22, 2009, 06:36:54 am

Mim's vision is failing again. Several times during the day, it just goes out. She said sometimes everything gets really blurry and other times things are just "gone". I asked her if the world turns black and she said, "only in spots". I emailed DocF to let him know. He's going to contact Cleveland Clinic and see if they have a peds neurologist who specializes in neuro-occular events. LOL.."events" - at least it's better than "chronic disease progression". Seems the past 17mths have been one giant event.

Mum

Sounds so very similar to what I've had, most of my adult life.. I get these Ocular migranes ( without the headache), where I can have flashes and loss of central vision for a few minutes at a time.

http://www.allaboutvision.com/conditions/ocular-migraine.htm

A neuro ophthalmologist, will look at the optic nerve and the brain.

Wishing Mim the best.

Ray

Longislander · « **Reply #294 on:** September 23, 2009, 01:59:37 am »

Mum,

Just wanted to stop in to let you know I'm reading, and hoping for some good info on the vision problems, soon~

Glad to hear she passed the ENT, tho.

Paul

minismom · « **Reply #295 on:** September 23, 2009, 06:54:58 am »

Amy, PM me his name and number - thanks! Our last neuro-occular doc was a bust and a sham, so I'm doing much more research before making another doctor day trip. I'm just worried that the answer will be, again, "It's just something she'll have to learn to live with." How many more "things" is she supposed to learn to live with before she decides she's tired of "learning"?

Paul, Nick, and Betty (Poppy, too), thank you for your thoughts and encouragement. I know that this, too, will pass. I just wish it would pass a little quicker and stop coming back for a visit.

I've been reading Mim's medical records, piecing things together and comparing them to my (many) notebooks. It's very interesting what doctors / nurses will write in their notes when they think the person they're writing about (or her parents) will never read them.

minismom · « **Reply #296 on:** September 30, 2009, 06:59:42 am »

Tomorrow is the BIG day! Mim's pageant starts at 4 and youngest son's at 5. Originally Hubby was going to have to miss them due to a test. But, he spoke to his professor yesterday who postponed the test until next Tuesday! So, Hubby'll go to morning class, race home, watch the kids, then race back to school for his night class.

At rehersal Monday, the lady showed the girls their "stage walk". Mim and I practiced last night: right hand on hip, left arm swings, walk, and sway and sway and stop. Both hands on hips, cock that hip and SMILE. Drop the right hand and step and pivot S L O W L Y - head to audience as long as possible. Step and pivot S L O W L Y. Stop, pretty feet - both hands on hip - cock that hip. Drop the right hand, pivot and swing that arm, sway that hip, and walk and walk right off the stage.

That's the way it was supposed to look. It ended up more like: hand on hip, and walk and trip and walk and don't smile like you have to poop, and walk and don't forget to stop. And step and pivot and ooops! and fall and stand back up and laugh and get stuck and laugh and there goes the stockings and drool and walk and hit the wall. PHILLY!!! WE NEED YOU!!! NOW!!!!

Her vision is still going out. It got so bad yesterday, that she had to stop her school work and just close her eyes for about 15 minutes. It's giving her terrible headaches. Unfortunatley, the answer seems to be "she'll just have to learn to adapt." My answer is, "it sucks, and we're getting another opinion." Fine line trying to decide when enough is enough and when resolving oneself to the fact isn't giving up.

Mum

Snowangel · « **Reply #297 on:** September 30, 2009, 09:18:27 am »

Have fun at the pageant. I am sure they will both do great and look adorable.

Sorry to hear about Mims' vision and headaches.

Please tell her I said HI and to work it on the runway!

WillyWump · « **Reply #298 on:** September 30, 2009, 12:45:39 pm »

Oh I'm so EXCITED for Mim! She will do great! Tell her I'm wishing her well!~

-Will

PS- This is how I walk to the coffe pot every morning...
right hand on hip, left arm swings, walk, and sway and sway and stop. Both hands on hips, cock that hip and SMILE. Drop the right hand and step and pivot S L O W L Y - head to audience as long as possible. Step and pivot S L O W L Y. Stop, pretty feet - both hands on hip - cock that hip. Drop the right hand, pivot and swing that arm, sway that hip, and walk and walk right off

#1 mom · « **Reply #299 on:** September 30, 2009, 06:37:39 pm »

I'm sorry mini is still having such problems. Did you google the neuro ophthalmologist or hear anything from your doctor about a referral?
I hope she enjoys her pageant. Tell her to break a leg

.
Amy

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