Author Topic: Mini update (Read 129844 times)

Longislander · « **Reply #200 on:** May 29, 2009, 07:10:51 pm »

Hey, welcome back, and who's ________??

The weather's been pretty crappy up here lately, but glad you guys were able to have a good time just the same~

Paul

Edited, because Mum remembered her name

minismom · « **Reply #201 on:** May 30, 2009, 07:57:23 am »

I've got my head and my thoughts and head together a bit more this morning. As is her style, Mim dragged Hubby and me on every roller coaster they'd let her on. She was hooping and hollering with arms in the air. I was ducking with my eyes closed trying not to puke. She was a bit disappointed they wouldn't let her on Farenheight - you ascend completely vertical (flat back, starring at the sky) and descend at a 97-degree angel. People getting off said they tried to scream on the way down, but couldn't until they reached the bottom.

We weren't there long before Mim asked if we could talk to the doctor about giving her a wheel chair. Her hips, knees, and spine ached something terrible. She said that she WANTS to see things and go places, but sometimes it would be nice to be able to sit down while she did. Broke my heart. But, I promised that she could talk to the doctor about it when we see him the end of the month.

Our youngest son, 6, got to ride his 1st (and 2nd and 3rd and 4th) roller coasters. He's an official junkie, now. Our youngest daughter learned two new phrases: "kiddie ride" (tiddy bibe) and "more chocolate" (mo gokalit). My parents informed me that during our trip to the beach next week, we'll be heading over to Busch Gardens. Now Mim can drag my brother on the roller coasters - he's a junky, too.

Back to normal life today filling the pantry and doing the laundry. Still cold and rainy. I'm still convinced that one day the rain will stop and the sun still exists somewhere.

Have a great rest of the weekend!
Mum

newt · « **Reply #202 on:** May 30, 2009, 06:37:50 pm »

Apart from the wheelchair), Why Would One Do TheseThings?

Glad mini is having fun, but give me a beach at sea level (not moving, not vertical) and a sunset any day

- matt

BT65 · « **Reply #203 on:** May 30, 2009, 09:21:13 pm »

Well mum, if Mim insists on a wheelchair, tell her to make it a Hoverround so she can move without anyone pushing her (go at her own pace).

She'll have more fun that way.

minismom · « **Reply #204 on:** May 31, 2009, 06:27:09 am »

Betty, that's funny. I told Hubby that we'd get her a Hoverround with a trailor hitch on it. That way, I could hook up a wheeled sofa and she could drag the rest of around.

Newt, the beach does nothing for me. I hate sand. I hate wet sand even more. The waves make me seasick - even watching them. Seagulls over head make me nervous - eventually they'll have to poop. Before being allowed back into the condo, the kids have to drench in the outdoor shower, jump into the pool, strip just inside the door, then straight into the bathtub. I don't want sand in the carpet, the furniture, the beds, or the showers. And, yes, bathing suits and towels get washed everyday. I'll stick with my wooded moutains and wildlife.

Mim is a massive adrenaline junky. If she thinks there's even a remote possibility of maming or death, she's going on it. The more warnings, the better. My old vestibular system just can't take it anymore. Can't even read in the car without popping a Dramamine.

Hope all of you are having a great weekend. Here, it's almost over.

Mum

minismom · « **Reply #205 on:** June 04, 2009, 07:03:19 am »

In a couple of hours, we will be traversing the mountainous backroads on our 140 mile (one way) trip to see an Occupational Opthamologist about Mim's double vision. 2 of our other children will also have exams done. The other 3 will be whisked off by their grandmother and great-grandmother to the wonderful world of Wal-mart.

Tomorrow is my anniversary and I'm not proud to say that I completely forgot. Hubby reminded me, which I will never live down. I've had so much on my plate these last 6mths - really no excuse, not even a good reason. I simply forgot.

Sunday morning we leave for the beach. I've done the food shopping, gotten meds refilled, and made the packing list. I just need to find the time to finish the housework and get it all together. As if I wasn't busy enough, our oldest son plays an away baseball game - an hour away - Saturday afternoon, forcing me to reschedule our middle daughter's birthday party to 7pm. Yes, I know, the night before we're leaving. It's going to be a very long weekend.

We've not gotten any more of Mim's numbers back, although I'm not expecting any suprises. I"ll be sure to pop in tonight and let you know what happened with the new eye doctor. I really believe that this will provide the answer for many of our questions.

Take care!
Mum

AndyArrow · « **Reply #206 on:** June 04, 2009, 01:23:38 pm »

I'm glad the whole family had a nice trip & Happy Anniversary!

Hugs,
AA

PS I love rollercoasters!

minismom · « **Reply #207 on:** June 05, 2009, 06:25:46 am »

I am hurt. I am disappointed. I am frustrated. I am angry. I am sad.

First, I will give credit where credit it due. Our son's appiontment, he went first, was wonderful. The doctor was very kind and patient with him. He listened to what I had to say, took tons of notes, worked with our son through the a very lengthy and comprehensive exam. He changed his prescription -doubling it - and gave us some strategies for helping him. Our daughter went last. Again, he was wondeful with her. Kind, patient, very thorough. With odd-shaped prism lenses, he was able to correct her periphreal vision loss - something her other eye doctor had never done. She's got a whole new field of vision. For those things, I am greatful.

In between them, was Mim. With her, he blew it. He kept his back to me when I was trying to explain her reading issues, her eye fatigue, her double vision. I was using her words to explain things. He never even aknowledged that I was speaking to him. During her very quick, uncomprehensive exam, he was harsh, spoke unkindly to her, and was very impatient. She was having trouble understanding what he wanted her to do. She was having trouble reading the eye chart - DUH! The more trouble she had, the worse he got with her. In the middle of the exam, he finally looked at me and said that Mim was doing it for the DRAMA! He accused her of faking it saying that she's going to do what she wants to do. WHAT?!? I was shocked! All this child has ever wanted was to be like everyone else. And, newsflash: YOU CAN'T FAKE A VNG!

I just kept hoping that something would happen to make him understand. Instead, it got worse. He blew her off. He said that he saw no physiological reason for her to have double vision and saw no evidence of it during the exam. He asked our son, who has no double vision, to look at a card and tell him when he saw 2 objects as he moved the card forward and then when he saw one object as he moved the card back. HE NEVER EVEN GAVE MIM THAT TEST! He saw no physiological reason? He's a NEURO-OCCULAR specialist there aren't always physiological evidence (ie: damage to the eye nerves, a growth on the eye) for neurological issues. More times than not you have to go by the physical manifestations (ie: double vision and tracking problems) of the neurological issue. I know that much and I'm not a doctor!

There are computer programs that he sells for at-home vision therapy. He never offered them to us for Mim. Even though the research I've done, including the book for which he consulted, says that vision therapy has had wondeful success in people with double vision and tracking issues. I've emailed Dr. F for a prescription for vision therapy. We won't have the conveniance of doing it at home, but at least she'll be getting help.

So, where do we go from here? I'm not really sure. I'll do more research and see what I can find that may help her. I signed consents for him to get their records from previous doctors. I'm faxing him today revoking my consent. I'll also fax thier previous eye doctors and let them know about the revocation. Right now I am at a loss, but all is not lost.

Mum
Va beach: pulling out 9am Sunday morning.

minismom · « **Reply #208 on:** June 05, 2009, 02:20:03 pm »

Just wanted to give you all a very quick update, then I'm back to house cleaning and packing.

I found a couple of sites that we can use until things can be sorted out. One has worksheets that we can print and Mim can work on to help her improve her visual perception, tracking, and visual memory. I also found a free site that has some occular exercises she can do to help with the same. I did find visual therapy at-home software but at $780, it's way above our means. But that's OK.

I emailed her ID doc, Dr. F and let him know what happened. I also asked him if he'd write a prescription for vision therapy. I have no doubt that it will be waiting in my mailbox when we return. I also found another Developmental Ophthamologist in Pitts. I've contacted our insurance company to see if they will pay for us to see him as a second opinion. I gave them all the information, faxed some stuff to them, and someone will contact me. If they won't, we'll still take her and just pay for it.

I've contacted the hospital where the "other" eye doctor practices and revoked my consent. I have a fax ready to be sent to Dr. V's office explaining that my consent for them to get the kids' records has been revoked. I'm drafting an email to send directly to Dr. V explaining my utter disappointment. A copy of it, along with a formal complaint is being sent to our state board.

Somehow managed to get it all done, along with a load of laundry, all the clothes packed, and half the house cleaned before lunch. Not too bad.

Have a great Friday!
Mum

Inchlingblue · « **Reply #209 on:** June 05, 2009, 02:34:42 pm »

After reading that update, which was so impressive in every way, so utterly on the ball, it reminded me of the orgasm scene in When Harry Met Sally.

"I'll have what she's having."

minismom · « **Reply #210 on:** June 05, 2009, 02:49:46 pm »

Honey, you can have all of our old, piece of crap, god-complexed, prejudice doctors. PM your address and I'll have them all shipped priority mail

I also find that lack of sleep, chocolate milk, Reese's cups, a few good cries, a Hubby who totally understands why I forgot our anniversary (for the second time this week), and a friend named Jenny help smooth out the rough spots.

Mum (who needs no better motivation than her children - I'll throw those in for free, but you have to give them back)

Robert · « **Reply #211 on:** June 05, 2009, 05:58:00 pm »

mum...

I'm sorry to hear this. Why do you suppose he refused to work with Mim? Do you think it was the virus? Her ethnicity? It's baffling. I'm glad you're telling him to take a hike. But you shouldn't have to. I mean, my gawd, what you went through before with the other eye Dr and the PID Dr. you'd think you'd get a break.

I really, really hope you get some rest at the beach. I just can't imagine it, though, with 6 kids and sand.

robt

minismom · « **Reply #212 on:** June 06, 2009, 07:22:57 am »

Robert, I just don't know why and don't want to speculate. The why doesn't really matter so much as the action itself. He will wake up this morning to an email from me. While he may not care that he's just lost 6 patients, I figure the warning that this, and all other coorespondence, will be copied and sent along with my formal complaint to our state board will get his attention sufficiently enough.

The only thing Mim has mentioned is that it's not fair I and S get the glasses they picked out and she doesn't and they were a really nice pair. I told her not to worry that I'm sure she'll find a pair she likes even more. Such a simple thing and yet, not so simple at all.

I know she gets tired of being dragged from state to state, doctor to doctor, looking for answers that we may or may not find. Seems she doesn't get much of a chance to just be. It wears on her. It wears on all of us. We make room for confessions of being tired, worn out, and frustrated. But we keep going, hand in hand, because we understand the alternative. And that's not an option.

Mum

minismom · « **Reply #213 on:** June 13, 2009, 09:48:40 pm »

We have ended another successful family venture. Somehow I even managed to survive the sand - the ocean touching no higher than my ankles as I was rinsing off sand toys and skim boards. The weather was hotter than I like, but a nice breeze helped break up the worst of it. The pools were heavenly, Busche Gardens a hoot, and great crack was had by all. Still, I'm glad to be back in my own bed, surrounded by the scent of pine, lulled to sleep by the crickets and frogs, watching the sun set behind the mountains from my front porch. It's good to be home.

Before leaving, I faxed a letter to the notorious eye doctor. We had our mail held and won't know if he sent us a reply until Monday. I was happy with the overall tone of it. Hubby thought it was way too subdued (especially coming from me

). It stated the facts, contained quotation marks, and was devoid of overtly hostile emotions. I was quite proud of myself.

With barely time to breathe, Monday and Tuesday finds us at various doctor's appointments. Monday I'm off to see a specialist about my persistant lung issues. You read that right, ladies and gentlemen, I am going to see a doctor.

Shocking, I know. Tuesday, our youngest has another hearing test with a new audiologist - same one who did Mim's VNG testing. Here's hoping Peanut gets her much needed, and long over-due, hearing aide(s).

Before I forget, I owe a Basquo a great big thank you! Because of his very helpful (and cheapskate) advice in MC, I have the beginnings of some very lovely gift baskets. The deal made even sweeter when I found the hotel leaves Bath and Body shampoo, conditioner, and lotion in the bathrooms. You know I am ALL about the BnB. To make it more tempting, Hubby found where housekeeping supplies were stashed - and our room key opened the door!

I hope you all had a wonderful week. Here's to better times ahead.

Mum

minismom · « **Reply #214 on:** June 13, 2009, 10:07:26 pm »

I thought of something after I hit "post" and didn't feel like editing.

When we arrived at Busche Gardens, Mim was armed with my dad in one hand and my brother in the other hand, plotting out which coaster to go on first. She pointed out a few that, thank goodness, she was too short to ride. However, I found one that looked "tame" and even convinced our novice junkie 6yr old son to ride on.

There was no line and 90% of the ride was obscured by trees. He was a bit nervous, but being the loving mum I am, I convinced him that they wouldn't have let him on the ride if it was dangerous or scarey. "But will it go upside down?" "Of course not, hun. I'm positive they wouldn't let little guys on roller coasters that go upside down." "Will it go down really fast?" "It'll go down, but not far and not too fast. Those big drops they save for big people."

I proudly sat my sweet boy next to my Hubby and pulled down the chest harness. A peck on the cheek, and I took my position in front of them, next to Mim. Glancing back, I could see his face and talk to him. Up, up, up we went, bracing for the inevidable "down". Instead, we went straight and flat. I turned to reinsure my boy that mum was right. No sooner did I turn to gloat, then Mim grabbed my leg, my boy's eyes got wide, and Hubby yelled for me to turn around and brace myself. Holy rice and fried greens! We dropped a whopping 150 feet nearly straight down towards a lake. My stomach was instantly in my throat. Couple of side-ways crazy turns, and things looked to be slowing down.

I took the "lull" as a time to apologize to my boy who had lost his tan and was frozen in a kind of twisted, open-mouthed, silent scream. I was telling him the worst was over and it would all be over soon, when the world suddenly turned upside down. Literally, upside down. So much for my gloating. At that point, I was praying for survival.

More hair-pin turns, a dark cave with sudden drops, another upside down loop, then all was suddenly still. Took awhile for my rattled brain to register that "still" meant "safe" which means "get out". My boy just looked at me with a mix of shock, horror, and disbelief. Took him half an hour to recover. Took most of the day before he believed my description of another ride.

minismom · « **Reply #215 on:** June 17, 2009, 08:43:24 am »

Bought dark, whole flax seeds yesterday for Mim. I ground some up and gave her a spoonful. She gagged and sputtered, but eventually swallowed it. Our youngest son loved it and ate 4 spoonfuls.

Yesterday got her some Isopure (thanks, Philly) protein shake mix -orange, pineapple, banana flavored. I mixed it with milk, orange juice, and a banana. She hates it. I tried bribing her with sugar cereal, but it's not working. She can be stubborn when she wants to be. Now she has to go potty - AFTER she finishes her smoothie. I know, I'm mean, but she needs to drink it.

Hips and knees are giving her fits again. Rubbed them with lavender and wrapped them in warm towels. Seems to help for a bit, but not a perminant fix. She's scheduled to see an ortho doc and rheumatologist the middle of August.

So far, we're enjoying a peaceful week. Nice to have time to breathe. Don't expect it'll last long.

Mum

Inchlingblue · « **Reply #216 on:** June 17, 2009, 12:12:47 pm »

Quote from: minismom on June 17, 2009, 08:43:24 am

Bought dark, whole flax seeds yesterday for Mim. I ground some up and gave her a spoonful. She gagged and sputtered, but eventually swallowed it. Our youngest son loved it and ate 4 spoonfuls.

I find it's best to "hide" it, like sprinkling it on cereal or in a smoothie (if you can find a smoothie she likes to begin with) or put a little into pasta sauce, etc. You can also get it already ground, you probably know that already. It should be ground in order to get the full benefits. And lastly, you can also get flax seed oil caps, which are also very good.

AndyArrow · « **Reply #217 on:** June 18, 2009, 03:07:07 am »

Quote from: minismom on June 17, 2009, 08:43:24 am

Yesterday got her some Isopure (thanks, Philly) protein shake mix -orange, pineapple, banana flavored. I mixed it with milk, orange juice, and a banana. She hates it. I tried bribing her with sugar cereal, but it's not working. She can be stubborn when she wants to be. Now she has to go potty - AFTER she finishes her smoothie. I know, I'm mean, but she needs to drink it.

I know where she is coming from back when I had to try to regain all the weight I had lost I tried so many different protein drinks ... hated all of them.

Carnation instant breakfast drinks ** if mixed with milk** has 13 grams of protein ** 5 grams without** so not exactly HIGH in protein but every little bit helps ... and I liked it.

minismom · « **Reply #218 on:** June 19, 2009, 12:20:36 pm »

Problem with Carnation is that it's also loaded with sugar which will raise her tris. We're now trying a different approach. I bought a quart of vanilla icecream made with Splenda. She's getting her protein powder as a shake. I also added a couple of fresh strawberries and promised that once she's finished this container, we'll talk to Dr. F about trying something else. For now, she's satisfied. Besides, what other kid do you know who gets "forced" milk shakes for breakfast?

As for me, I have a pulmonary function test Monday afternoon. I finally found a doc who agrees that breathing is necessary. Gee, to think it only took 1yr and 8mths to find her.

On another cool note, our youngest (5 1/2) peed in the potty for the 1st time on Wed. She hasn't done it since, but if it can be done once, it can be done twice. At least, that's what I'm hoping.

Hope everyone is having a wonderful Friday with great plans for the weekend. And, before I forget, HAPPY FATHER'S DAY!

Mum

Inchlingblue · « **Reply #219 on:** June 19, 2009, 01:18:59 pm »

Quote from: minismom on June 19, 2009, 12:20:36 pm

Problem with Carnation is that it's also loaded with sugar which will raise her tris. We're now trying a different approach. I bought a quart of vanilla icecream made with Splenda. She's getting her protein powder as a shake. I also added a couple of fresh strawberries and promised that once she's finished this container, we'll talk to Dr. F about trying something else. For now, she's satisfied. Besides, what other kid do you know who gets "forced" milk shakes for breakfast?

Throw in a tablespoon of ground flaxseeds, she won't notice!

minismom · « **Reply #220 on:** July 08, 2009, 07:53:27 am »

Wow! It's been a long time since I've posted anything here. I'm happy to announce that it's because there's been nothing really to report. Things have settled down a bit and we've been enjoying our , thus far, wet and fridgid summer.

Mim has her fasting bloodwork next Wed (15th) and her weigh-in. I'm not seeing any significant change in how her clothes fit, so not sure how much she's gained, if any. We've been giving her a protein shake for breakfast. She's not thrilled, but we've found a formula that she can stand: 2 scoops of sugar-free icecream, 1/3 cup whole milk, 1 scoop of protein powder, 4 large strawberries, 1 banana, and 1/2 cup of Splenda. Blend it up, stick in a swirly straw, and away she goes - griping the whole time.

Four weeks from today, she, Hubby, and I will be flying to Boston and we really can't wait. She's already packed and unpacked about 10 times. It's all she talks about - seeing her guys again. It will be bitter-sweet since we will be honoring Kate during the Memorial Service. She and Mim had a very special place for each other.

Believe it or not, that's all I've got. I"ll post her numbers as soon as we know them.

Have a great day!

Mum

skeebo1969 · « **Reply #221 on:** July 08, 2009, 08:45:53 am »

Quote from: AndyArrow on June 18, 2009, 03:07:07 am

I know where she is coming from back when I had to try to regain all the weight I had lost I tried so many different protein drinks ... hated all of them.

Carnation instant breakfast drinks ** if mixed with milk** has 13 grams of protein ** 5 grams without** so not exactly HIGH in protein but every little bit helps ... and I liked it.

Those Carnation breakfast drinks are some much better than ensure..... You try one of those recipes they have on the package, not bad at all.

minismom · « **Reply #222 on:** July 15, 2009, 04:41:46 pm »

Mim had her fasting lab done this morning followed by a nice Bob Evan's breakfast (made nicer by mjmel's company). We wanted to "fatten" her up for before her weigh in (did someone mention "faking numbers" in another thread?) Poor baby, we teased her that she wasn't allowed to potty until after they weighed her - she needed every ounce she could get. Even had her weighed with her shoes on, although they made me hold her purse - it had rocks in it

It didn't work. She's lost 2 more pounds $:-\$ . Dr. F is concerned, we're concerned, she's clueless. She now has to have BeneProtein twice a day, a protein shake once a day, drink more water, eat 6-7 small meals / day, and switch to soy milk. Dr. F wants us to weigh her a couple times a week and e-mail the results once a week. She goes back in 5wks - Aug. 20th for another weigh-in. We thought *maybe* it's because she'd grown. Wrong, again - only 1/4 inch in 5mths.

Suggestions?

Mum

fearless · « **Reply #223 on:** July 15, 2009, 07:41:35 pm »

hey mum,
glad it's been kinda quiet for you.
no suggestions for mini other than feeding her up as much as possible on the things she can eat.
i'm sure her boys will take good care of her in Boston and make sure she eats heaps and piles on the weight.
hope hubby, mini and yourself really enjoy Boston and catching up with everyone.
Little Steve

Robert · « **Reply #224 on:** July 16, 2009, 12:48:46 am »

Hi mum.

yeah. no news is good news but it's not so good news, uh? Is soy milk better (more fattening) than regular milk? News to me. I drink close to a 1/2 gallon of milk a day. I love milk. Mixed with cookies, nothing is better, especially if you don't care about the weight thing. The thing is, though,I don't need the weight so I am beginning to care. I don't know what to do. (If my mother was around, she would put a stop to the cookies in a new york minute, no questions asked.)

Like Steven says, I'm sure we'll all do our best to make sure Mini is eating. ice cream any one? 1 scoop or 2?

robt

minismom · « **Reply #225 on:** July 16, 2009, 08:07:01 am »

According to Dr. F, Soy milk has more protein than cows milk (or at least easier to absorb protein) and less choloesterol. I've asked around and SILK seems to be the best tasting, so I'm off in a bit to get some, a digital scale, BeneProtein, and Nutragrain bars. We go through about 8 gallons of milk / week.

Probably cheaper to buy a cow.

Dr. F is meeting today with a nutritionist and he's going to talk to her about Mim. He said he'll email tonight, tomorrow morning at the latest, and let us know what she suggests. He's also going to ask if she'll come by during our next appointment to talk to us.

We're keeping a diary about what she eats, how long she spends being "active", and how often she goes potty. We'll e-mail it once a week when we send in her weight.

Basquo, while you're out hunting up liquor stores in Boston, find us one that sells SILK.

Mum (who's making cookies and individual pineapple upside down cakes)

Inchlingblue · « **Reply #226 on:** July 16, 2009, 04:26:55 pm »

Although these things are subjective, I personally prefer the taste of the Kirkland brand soy milk, from Costco. Below is a link from a woman "reviewing" the two and she agrees, saying that, as a soy milk convert, she would not have continued drinking it if the only one she had tasted was the Silk brand.

She compares the version that is sold already cold (looks like a regular 1/2 gallon milk container), but I buy the one that is sold in quart containers at room temperature that you refrigerate after opening (this is better as far as it keeps for a long time before opening), the taste is the same.

I'm not sure if you have a Costco nearby but I just thought I'd give you my 2 cents in case she ends up not liking Silk. And for the record, I don't think Silk is bad at all, I just think the Kirkland brand is definitely better.

I also think it comes out a lot cheaper to get the Kirkland brand and according to the lady who reviews them in the link below, Kirkland has more protein than Silk (I have not actually checked to verify but easy enough to do). Kirkland is organic and I don't think the regular version of Silk is.

LINK:

http://www.associatedcontent.com/video/24397/product_review_silk_soy_milk_versus.html?cat=22

I found this link from someone selling a whole case of the quart containers of the Kirkland brand for $5.99, there must be a catch:

http://www.joetlc.com/costco-kirkland-milk-organic-lactose-free-p-5019.html

PS: Both the "regular" and the "vanilla" are good, the regular is better if you'll be using it in place of milk with certain more "savory" recipes.

minismom · « **Reply #227 on:** July 17, 2009, 07:56:53 am »

Thank you, Inch, for the links. I bought the organic vanilla silk (1 gallon) and added her chocolate syrup to it (Hershey's made with Splenda). I didn't tell her what it was for fear she'd not drink it just because. She drank the whole glass and asked for more. After she'd had a couple of glasses, we told her what it was. She thought "silk" sounded cool. She had another glass last night with her beignets

Have a great weekend!
Mum

Inchlingblue · « **Reply #228 on:** July 17, 2009, 12:29:49 pm »

Quote from: minismom on July 17, 2009, 07:56:53 am

Thank you, Inch, for the links. I bought the organic vanilla silk (1 gallon) and added her chocolate syrup to it (Hershey's made with Splenda). I didn't tell her what it was for fear she'd not drink it just because. She drank the whole glass and asked for more. After she'd had a couple of glasses, we told her what it was. She thought "silk" sounded cool. She had another glass last night with her beignets

Have a great weekend!
Mum

yeah@! I'm so suggestible that when I read "beignets" I now have to go out and get some.......lol

Robert · « **Reply #229 on:** July 17, 2009, 01:16:56 pm »

Quote

yeah@! I'm so suggestible that when I read "beignets" I now have to go out and get some.......lol

ditto

MOONLIGHT1114 · « **Reply #230 on:** July 17, 2009, 05:13:25 pm »

Mum, this good news. I'm glad Min thinks Silk sounds cool, lol. Its "Silky Milky" for Min!

AndyArrow · « **Reply #231 on:** July 18, 2009, 03:24:58 pm »

Skip the cow and buy a goat.

It can keep the grass down and provide all the milk ... which is supposed to be much easier to digest than cow's milk since it is more like human milk.

I'm glad she likes the soy & I hope this helps her gain some weight!

AA

minismom · « **Reply #232 on:** July 19, 2009, 05:35:01 am »

Just when we thought things were uncomplicating...

She's down 14oz between her weigh-in Thursday morning and her weigh-in Saturday morning. We weighed her at the same time (as soon as she got up - before she ate anything) and in the same place (for some reason, the machine weighs differently depending on which floor we use). So, 14oz in 48 hours. I'm completely dumb-founded. We'll weigh her again on Monday and then on Wednesday and e-mail the results to Dr. F.

I offered to donate for a fat transplant, I've got enough extra

Mum

Miss Philicia · « **Reply #233 on:** July 19, 2009, 09:26:09 am »

So how much total weight loss has there been now since this whole episode began, and what % loss is that of her baseline? I guess my point is if there's an official HIV wasting diagnosis yet, and exactly what will be offered and when in terms of treatment other than protein shakes or what have you.

minismom · « **Reply #234 on:** July 19, 2009, 05:05:32 pm »

She has lost just under 6lbs in about 4mths - right at 10% of her weight (give or take a bit). An official wasting diagnosis hasn't been given, yet. He's going to take a good look at her numbers when her labs come back in a week or so. He's also going to do some research and see what our next course of action should be. Right now he's most worried about having to "separate" the Epzicom into the 2 different drugs and give them to her as liquid. His concern is that the lower doses won't be enough to maintain her u/d load.

He gave us information about the meds usually used for wasting, but said that none of them are appropriate for her, ie. oral marajuana (forgot the name of the drug), an antihistamine that increases appetite, and testoterone gel (

) - a DEFINATE ain't-gonna-happen. He said there were others, but most were used to increase appetite which she doesn't need.

For now, he wants us to try this new course of stuff, weigh her every other day, and see what her weight does. Next course will most likely try to pinpoint down WHY her body isn't metabolizing / absorbing food like it should. Fact is that she could have been losing weight for some time and we just didnt' know it because of the whole "disappearing ID doc fiasco". And, I'm not sure if it has to do with whatever caused her T-cells to take a dip.

So many question that can all be answered "I don't know." At least we now have a doc who is willing to acknowledge there is an issue and try to figure out what to do. That's a huge step from where we've come from.

Mum

Miss Philicia · « **Reply #235 on:** July 19, 2009, 05:15:10 pm »

Is this the same "zerit" doctor or a new one?

minismom · « **Reply #236 on:** July 19, 2009, 05:22:49 pm »

Zerit doctor is GONE! This is now the new doctor we've been seeing for 4mths. We haven't seen Zerit doctor since last September when she disappeared. We have no idea where she is - or if and when she'll ever get back. It was a real blessing, though, because in her absence we found a truly wonderful and remarkable doctor (thank you again mjmel - we still owe you big time

) who really is trying to figure everything out.

Mum

Inchlingblue · « **Reply #237 on:** July 19, 2009, 05:30:57 pm »

Quote from: minismom on July 19, 2009, 05:05:32 pm

ie. oral marajuana (forgot the name of the drug)

Probably marinol....a friend of mine gave me one once and I took it along with a nice glass of cabernet. VERY relaxing

minismom · « **Reply #238 on:** July 19, 2009, 05:35:57 pm »

Marinol - that's it. LOL...but there is a slight age difference between the two of you.

Mum

Inchlingblue · « **Reply #239 on:** July 19, 2009, 05:44:01 pm »

Quote from: minismom on July 19, 2009, 05:35:57 pm

Marinol - that's it. LOL...but there is a slight age difference between the two of you.

Mum

I'm surprised he mentioned Marinol because it's used for loss of appetite, not for making people gain weight just by taking it and voila!

Maybe he doesn't realize that Mim's issue is maintaining/gaining weight but that her appetite is not the problem? It sounds like she eats like a little horse, lol.....I'm still trying to look for a beignet after I read that she had her chocolate soymilk with one! I might have to settle for a regular doughnut.

Miss Philicia · « **Reply #240 on:** July 19, 2009, 05:53:05 pm »

I don't understand why the doctor is meeting with the nutritionist instead of the patient. Doesn't sound horribly efficient for a situation that seems to be moving along quickly.

minismom · « **Reply #241 on:** July 19, 2009, 05:53:29 pm »

Honestly, he was answering my question about 1: Is she wasting? and 2: what are we going to do about it. He was giving us a rundown of the drugs that are usually prescribed for wasting and telling us why she can't take them.

MMMMMM beignets - I still have some mix left. Sounds like you just decided what we're having for desert after supper.

We have some Community Coffee, too

Mum

minismom · « **Reply #242 on:** July 19, 2009, 05:57:03 pm »

Philly, you posted the same time I did. He met with the nutritionist because she doesn't work where he does - she's 60-70 miles away. He was meeting with her anyway to discuss some of his patients and, after seeing Mim on Wed. and seeing that she'd lost more weight, asked if he could speak to her about Mim. Of course, we agreed. He was also meeting with the nutritionist to try and talk her in to coming to his clinic a few times a month to see patients who need her. His clinic doesn't have a nutritiionist at all. This one specializes in HIV-related nutritional issues. Mim would be one of the patients she'd come to see.

Mum

Miss Philicia · « **Reply #243 on:** July 19, 2009, 06:01:33 pm »

By the way, I know it sounds logical to think that testosterone wouldn't be useful, but I wouldn't dismiss this solution out of hand -- I'm not saying it's the right course, but just don't have a knee jerk reaction about it yet. Mostly I'm saying this after reading this blurb in the past couple of months, though of course it doesn't address mini's age group:

http://www.aidsmap.com/en/news/33899C1D-4206-4A9F-BED6-7618C67E29D9.asp

minismom · « **Reply #244 on:** July 19, 2009, 06:06:42 pm »

Very interesting, indeed. I've got it saved and will print it out and carry it to our next appointment. Thank you. May not be helpful for her now, but will certainly be something to keep in mind for later on.

Mum

AndyArrow · « **Reply #245 on:** July 20, 2009, 07:49:11 am »

Since her appetite is good it sounds like it's more a problem of malabsorption. This can be from something as simple as SIBO http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

which I've had and is easily diagnosed & treated or possibly a problem with enzyme production in the small intestine. I'm sure the doc & the nutritionist will be looking at everything and I just wanted to wish her good luck!

Hugs,
AA

minismom · « **Reply #246 on:** July 20, 2009, 08:16:08 am »

Thank you so much, Andy, and see you soon!

At her weigh-in this morning, Mim was down another 2oz. That's a 1lb loss since Thursday. $:-\$ I was doing some research this morning (think 5am) and came acrossed several mentioning CMV. This was something that she was tested for (via urine sample) at 8wks old. It came back positive. It was followed-up by a blood test.

What we were told was that she tested positive for the antibodies but negative for the virus. However, this was by our ex-PID who also told us that CMV would have NO negative effects on Mim unless she got pregnant. I know now this is crap.

When I e-mail Dr. F on Wednesday to give him Mim's weights, I'm going to request a retest for CMV when we go back 8/30. I'm also going to ask for a cytokines test, especially TNF, IL-1, and IL-6). Also going to ask him to order a stool sample to test for Carbohydrate and fat malabsorption (D-xylose testing). Of course, knowing him, he probably already has these tests in mind. There was a mention about mychobacterial disease, but never mentioned how to test for it.

My brain is now fried and I'm tired. If anyone else has ANY other thoughts (calling Matt), I'm open for them. I'll let you know what I know when I know it. Until then, make it a good one.

Mum

edited to add: I just read the article that Andy sent and it brought up a lot of interesting facts about Mim's infanthood. First, her 1st set of gram-negative bacterial blood infections (she had 4 at one time) were caused by bacteria that people normally carry in their gut, but the immune system usually takes care of. Second, she has diabetes and neuro-muscular issues (CP). SIBO is definately going on our "to test for" list. Andy, hun, prepare for big moochies in Boston!

newt · « **Reply #247 on:** July 20, 2009, 01:07:09 pm »

I think it unlikely to be CMV given mini's immune system is strong at present

It is more likely to be a gut issue, this is hugely problematic with kids HIV-positive from birth, this food/weight/growing thing. The stool test is a good idea (more tests....) as is a micronutrient panel (micronutrients affect absorption).

- matt

minismom · « **Reply #248 on:** July 20, 2009, 04:44:59 pm »

Matt, that's what I was more or less thinking, but a CMV test would be easy enough - remember she LOVES to have blood work done. $:-\$ What about parasites? I'll mention it and see what he thinks. More tests....one more thing....seems to be the story of her life - perhaps just a really long chapter.

Thanks, babe! Good hearing from you.

Mum

PeteNYNJ · « **Reply #249 on:** July 20, 2009, 06:05:59 pm »

Mom

I had a parasitic infection a few years ago. It took me months before I went to the doctor because I just thought I had travel diarrhea. I dropped A LOT of weight (which I liked) even though I still ate like a horse so a stool test could be insightful. It is really easy to clear up so that is a good thing.

Fingers crossed that it is something they can diagnose easily

Pete

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