Failure To Thrive

[rubytuesday]

So I have gradually dropped from 102 to 86.4 lbs (5'3") from beginning of July to today. Have been waiting on Ins. auth for Ig Hizentra for immunodeficiencies. Have complained of the nausea/GI issues (bathroom days with the IBS/D). Had debilitating summer with POTS/orthostatic hypotension/dysautonomia. Was putting GI on back burner as needed to see cardiac specialist at UTMC (nearly a day's drive) and with his finding Delta Granule Storage Deficiency to explain lifelong hemorrhaging--referrals to hemeoncologists with one finding something, referring me to another for another problem, etc. Both Infectious Dis and Immunologist/allergist tell me I need Ig (and am low on IgA). None of my doctors who see me regularly have pushed about this weight loss (unintentional). Mestinon caused a lot of nausea, cramping, vomiting and it took a month from my call to cardiac specialist (PCP wouldn't handle problem) to call me back to discontinue it. I was doing aquaciser treadmil for 2 months--going up to 70 minutes (for conditioning ordered by cardiac specialist), and some vomiting w migraine and once in what I now think may have been panceratitis. (another story). Cardiologist ran CT aorta in Dec. to check for defects (as DS has congential dilated aorta and coarctation of aorta--recently found). This CT scan shows pancratic atrophy and fatty cysts on liver. Nobody says or does anything.

After things getting going with setting up the Ig, I call GI, unable to get in til yesterday. I wondered about gastroparesis (with EDS/dysautonomia) and now the pancreas? He's ordering gastric emptying study (2 hr) and KUB in a.m. Saw immunologist today who says she's determined to get this Ig IV started but ins won't auth as they say I have 'Failure to Thrive'. ??? I do housework, my ADLs, go out to eat/meet with friends, go to church, volunteer in church activities and up until the dysautonomia (and concerns with immunocompromisation--had been helping with the polls. I told them 'no' when they asked me about March). I may be losing weight but I certainly can not say why. I do have nausea but force myself to eat. My DH looked at immunologist and told her--she eat's the same thing I do ('she just doesn't snack at night like me'). So she tells me I'm at point of needing serious nutritional supplement (moreso than ensure or sustical) and that my PCP/GI should manage it. She also tells me a lot of meds I'm on can cause nausea (the Voriconizole and Cefadroxil I have to stay on for life due to osteomyelitis). She says to come off every vitamin/mineral/supplement and only take a Centrum (nickel free) even tho I take calcium/vitamin D after rheume's insistence w/ my osteopenia and once found with critically low vitamin D years ago. Immunologist says I do not need the extra--just take the Centrum. I reminded her with lactose intolerance, dairy is bit of problem but she says Centrum is enough. She also tells me since allergy tested negative to stop Singulair and Pulmacort (but I only used Pulmacort for trouble w/ episodic bronchitis). I was diagnosed with intrinsic and extrinsic asthma (and gave her records from the last set of desensitization I'd received in mid-1990s). My PCP has re-started Singulair 2 or 3 times after it was stopped. Plus I took my Pulmonary Function Studies done in 2007 (interpreted by pulmonologist as 'asthma out of control') to the immunologist as it sure looked similar to test she'd run in Dec that showed Vocal Cord Dysfunction. Lo and behold she tells me it was VCD that pulmonologist missed (says happens a lot).

Immunologist had planned 3 Ig IV then switch to home Hizentra sub-q. I can understand the ins. reluctance to auth sub-q when there is no fat to infuse this into, but what I don't understand is how the ins. can diagnose me with FTT. My immunologist tells me to plan on Mon. but switched my PCP follow up from Tues. to tomorrow after the other stuff at hospital (6:15 in morning). Oh, I forgot that I drive--is that safe with FTT? I eat small amounts but have to watch fat and sodium and 3 of my Rx have to be taken on empty stomach--which is a challenge when you are still belching up supper 5 hours later. I told DH next time I see immunologist I'm going to wear heavy pants and heavy sweater to go with whatever weight I hope to gain.

Anybody have experience with this? I am not an anorexic or bullemic. What are these Rx supplements that have energy builders the immunologist was speaking in general terms about? (Not TPN or hyper-alimentation)?

I had tried prioritizing all the appointments/travel (no specialists close to home) and put GI to first of Jan. since none of my docs had expressed any concern (and I get weighed at every visit--had even called PCP to request something for nausea when it was so bad on Mestinon--and she only told me I'd have to call cardiac specialist in opposite end of the state. His office was not too concerned since they took a month to call me back to tell me to stop the med).

Thank you for any insight/input. I have to call my ins. Fri. (and prob Sat morn when they're open) because if this is still not authorized (since Dec--ins. tells me they've not received any requests), I have to cancel Mondays Ig IV

[anna]

I realise you may have already done this but just in case! have you tried to eat/drink your food basically make what ever you eat into a smoothie! When my son was loosing weight rapidly due to EDS?POTS gut issues the only thing he could manage was to drink he was being sick and had bad bad nausea 24/7 anyway for him it helped to stop him loosing much more weight. Have you looked at gastroparisis diets?! lots of normal foods need to be avoided as they make things worse.

[Christy_D]

I would request that gastric emptying test to be a four hour test. My son would have been told he didn't have gastropariesis on a two hour test. He did have a four hour test and the first two hours progressed fine, but everything came to a halt the next two hours. So the four hour test is the better one to have.

Christy

[kayjay]

Have you considered not eating gluten? I no longer have IBS because I stopped eating it and I used to be unable to gain weight. Hope you figure this out!

[lillybits]

Hi I am 5'7" went from 120 to 95lbs in just 6 months. now i add maltodextrine to my almond milk(dairy allergy) and drink ulra meal 360 plus. it is dairy,wheat, gluten,nut,egg,treenut,fishcrustation, color,artificial sweetener,preservative free. it is made by metagenics.it is made for people with conditions associated with metabolic syndrome and cardiovascular disease. The combination between those two things and a high calorie high protine blenderized diet has brought me back up to 102. I still have to fight to eat and everything just hurts but this by far has been the easiest on my gi.I also was put in the failure to thrive catagory not due to my activity level I do my best at keeping up on but just on my weight loss.Hopefully any of this is helpful

kim

[rubytuesday]

Hi I am 5'7" went from 120 to 95lbs in just 6 months. now i add maltodextrine to my almond milk(dairy allergy) and drink ulra meal 360 plus. it is dairy,wheat, gluten,nut,egg,treenut,fishcrustation, color,artificial sweetener,preservative free. it is made by metagenics.it is made for people with conditions associated with metabolic syndrome and cardiovascular disease. The combination between those two things and a high calorie high protine blenderized diet has brought me back up to 102. I still have to fight to eat and everything just hurts but this by far has been the easiest on my gi.I also was put in the failure to thrive catagory not due to my activity level I do my best at keeping up on but just on my weight loss.Hopefully any of this is helpful

kim

lilybits,

Where do you get this? My pharmacist ordered isosource. My DS is hospice nurse and she suggested if I tolerate the Isosource and start to put weight that they use carnation instant breakfast or boost and add a protein powder to that, mixed in something to make it like a shake. I have a great mixer/blender but haven't been able to bring myself to do that when I can eat solids (they just don't pass/absorb normally). I do drink smoothies (even with lactose intolerance) but I ice cream is too hard on me (love it but it doesn't like me).

[rubytuesday]

Have you considered not eating gluten? I no longer have IBS because I stopped eating it and I used to be unable to gain weight. Hope you figure this out!

My immunologist did serum food allergy panel and I showed no allergy to wheat. I did discuss gluten with my PCP yesterday. She is running a celiac panel. I'd had pill cam that didn't show any celiac dis about 4 years ago. PCP suggests that when GI scopes me that he get small bowel bx as that's the most reliable test. Scares me to have a biopsy in someplace I cannot see and that is so vascular having EDS and being a hemorrhager.

[rubytuesday]

I would request that gastric emptying test to be a four hour test. My son would have been told he didn't have gastropariesis on a two hour test. He did have a four hour test and the first two hours progressed fine, but everything came to a halt the next two hours. So the four hour test is the better one to have.

Christy

I thought the same thing when I saw the order for 2 hour test. And then arrive and they give 1 bite of scrambled egg and tell me the test is 90 minute test unless it passes sooner. If it takes 90 min to get 1 bite of egg past the stomach, then imagine if I eat a sandwich or a meal (no wonder I have the GERD well into the night (and we eat around 5).

[rubytuesday]

I realise you may have already done this but just in case! have you tried to eat/drink your food basically make what ever you eat into a smoothie! IWhen my son was loosing weight rapidly due to EDS?POTS gut issues the only thing he could manage was to drink he was being sick and had bad bad nausea 24/7 anyway for him it helped to stop him loosing much more weight. Have you looked at gastroparisis diets?! lots of normal foods need to be avoided as they make things worse.

I had considered maybe pureed but then I thought toddler food is pretty thick (but then I'd have to be buying a lot of that to get in what I need and it would probably just gross DH out--he would probably be repulsed or think I had lost my mind. I was trying to calculate how much of the stuff I would need to meet nutritional needs and certainly don't want to risk going in the wrong direction. It may come to that but I'm not very creative when it comes to pureeing something tastey. I've always had kind of a gaggy feel with thick solutions (like cold/flu med/milk of mag/pepto bismol, jugs of contrast for radiographic tests, mylanta).

[lillybits]

Hi I am 5'7" went from 120 to 95lbs in just 6 months. now i add maltodextrine to my almond milk(dairy allergy) and drink ulra meal 360 plus. it is dairy,wheat, gluten,nut,egg,treenut,fishcrustation, color,artificial sweetener,preservative free. it is made by metagenics.it is made for people with conditions associated with metabolic syndrome and cardiovascular disease. The combination between those two things and a high calorie high protine blenderized diet has brought me back up to 102. I still have to fight to eat and everything just hurts but this by far has been the easiest on my gi.I also was put in the failure to thrive catagory not due to my activity level I do my best at keeping up on but just on my weight loss.Hopefully any of this is helpful

kim

lilybits,

Where do you get this? My pharmacist ordered isosource. My DS is hospice nurse and she suggested if I tolerate the Isosource and start to put weight that they use carnation instant breakfast or boost and add a protein powder to that, mixed in something to make it like a shake. I have a great mixer/blender but haven't been able to bring myself to do that when I can eat solids (they just don't pass/absorb normally). I do drink smoothies (even with lactose intolerance) but I ice cream is too hard on me (love it but it doesn't like me).

believe it or not my chiropractor ordered it for me it took like 2 weeks for him to find it but i can ask him what sight he found it on when i go in next! it doesnt taste the greatest but it does what it is suppoesd to!oh i found it it is on the metagenics websight. i just called and found out where he gets it . its consistancy is like thick chocolate milk but comes in other flavors as well!

[lillybits]

have you tried soydream? they also have soy yougert to help get some more probiotics in you too. I have trouble swallowing pills so anything I can throw into the blender i love! I cant have any dairy what so ever so everything i take in i have to be very careful that it doesnt have the slightest dairy byproducts