Re: Re: Need hug & have question--Sherry// Beth

[Guest guest]

Kris,

I'm sorry you got one of those scary late night calls and that DJ's labs are

concerning.  I do have to say that sometimes Aidan's doctors call at night

because they wait until the day is done to return/make calls.  It is not always

a sign of the severity of the issue, but sometimes it just works best in their

schedules.  Hopefully, that's the case with DJ.

Aidan's Vitamin D level was low also.  His GI doctor attributed it, in part, to

his Prevacid which can interfere with the absorption of vitamins.  (His iron

was

also low and there were some other minor deficiencies which were addressed by a

multivitamin.  He also gets B12 shots for a more significant B12

deficiency.)  

Have any of DJ's medications been linked to malabsorption issues? 

To address the Vitamin D level, we give Aidan a teaspoon of cod liver

oil (with

added Vitamin D) from Kirkmans each day and his level has increased to a normal

level.  The cod liver oil is a lemon-lime flavor, and although he hates taking

most supplements, he does not mind it at all.  I've tasted it and the flavor

isn't bad, it's just feels a little oily going down.  From my experience, the

liquid doesn't mix well with other liquids and is better given via syringe. 

His doctor also recommends about 15 minutes of unprotected sun exposure per

day.  With a family history of melanoma and such fair skin, we don't go beyond

15 minutes (and due to weather, temp, etc., we don't do it every day).

It's my understanding that in addition to contributing to calcium absorption and

bone health, Vitamin D has recently been identified as being important for

immune system functioning.  I haven't researched the autoimmune connection, but

I would suggest trying the supplementation (in whatever form works for DJ) and

seeing if he responds.  Sometimes deficiencies are simply related to

medications interfering with their absorption (as possibly with Aidan's

Prevacid) and are not related to a bigger issue.  So, just try to take a deep

breath and rule out each possible cause one at a time.  Don't overwhelm

yourself

with all the possibilities at once.

Wishing you luck and sending cyber hugs your way.

Dana

________________________________

To:

Sent: Thu, August 19, 2010 1:49:07 AM

Subject: Re: Need hug & have question--Sherry// Beth

 

Sherry?/ Beth-lately I have realized that since my mother's death & our

8th grade trauma-o-rama, I have been doing the whole monkish retreat from the

world thing. (aside from long hair & some balance restored-I am no wiser from my

navel gazing...Ohmmmmmmmmm)

So, my radar never saw any of the vitamin D concerns being reported(?)

Of course after the phone call I googled vit D cause all I associate it with is

rickets. Since I am a wonkish being as well as a navel gazer, I look to NIH or

Mayo first.

****It ain't just about rickets. As I read about vitamin D on the Mayo site, I

thought about so many on this group. Since my brain stopped functioning about

8:10PM while on the phone, I can't relay accurately all that I read.

Jeez, it is bad for the young (our kids) & bad for the elderly & is associated

with just about every auto-immune thing from asthma to CF to gut issues to

bones. AND causes pain.*****

Put vitamen D deficiency into the google & click on the Mayo link. It is very

comprehensive & lists what vit. D is known to do & what is unknown at this

point. Do not bother with some of the other sites -I skimmed a few but they were

not very well set up so made my brain bleed.

After you read, you will know why I came here to ask. Read between the

lines-what I was asking here.

Cause now I am pondering big time about system domino effects & trying to figure

out which of his docs I need to discuss this with.

Considering DJ is vying for the title of Mr Auto-immune Disease of the Month...

I appreciate SO much the cyber hugs & replies. I think you know that awful

chest/stomach feeling. I just got blindsided cause I thought they were calling

me back to tell me they had called in his rx (that we had not rec'd yet)

First was the hemming & hawing that made my radar go into full alert mode when I

said they could just mail me the report like they normally do & for them to go

home blah blah.

The reason they were calling is that his labs were not good. Meds will be

increased & from the questions asked, I knew there was concern as to what is

happening. Trying to find a polite way to ask if maybe DJ had skipped a few

doses. (nope)

Hearing concern or puzzlement in a specialist voice can cause instant terror.

Then came the vitamin D being too low. So after I reassured that DJ did drink

milk & etc I then had to say that no way would DJ drink cod liver oil or swallow

a pill. Then we brainstormed (with what was left of my brain) Sunlight is

helpful & fast way to get vit. D, but the doc was concerned about the heat

impacting him.

Ya'll hear me I know. Hmm, 20 min of sun or cod liver oil? Vitamin D rich foods,

sunlight & crushable pill....or codliver oil?

Hopefully I can find a crushable vit d plus calcium pill. But there is no way

the boy will swallow a pill or cod liver oil. And he is way bigger than me now.

Maybe I can hide it in his Spongebob crabby patties I make-once in a blue

moon...Argh.

Sheesh, my stomach still hurts. It is not so much the vitamin D, but the 8pm

phone call & the careful wording of what was asked or said that scared the poo

out of me. And then finding out what his labs were.

I need to go retreat & navel gaze some more.

Oh, I asked about any side effects to expect from the (large) dosage increase of

thyroid meds.

The answer is: will present as more tired & skin will get drier.

Guess what ONE of the symptoms of vitamin D deficiency is.

Tiredness.

Guess who has been coming home & sleeping til I wake him up for dinner since

school started.

Yep. Navel gazing time.

Thank you again for the hugs & voices!!!!

Hugs,

Kris, picking lint from navel ...Ohmmmmmmmmmmmmmm

PS: DJ is physically seen every 6 months (or more as needed)by endocrinologist &

labs done each visit. We have a good relationship.

Actually with all his docs. Dermatologist is a new presence but he was/is great.

>

>

> Kris, I don't know many people who have been tested recently who do NOT have

>low vitamin D levels. Beth is right. This vitamin D scare/concern has been

>going on for a couple of years and now I'm reading alot of reports that high

>doses can be problematic.

> I think medical doctors as usual are just catching up. has low levels

and

>gets supplemented but we had a very difficult time bringing up the levels of

>anything (calcium, zinc, iron etc.) until they figured out she had an inability

>to absorb iron. They actually dxed with rickets even tho the endo said it

>really wasn't rickets in order to get her vitD supplement covered by medicaid.

>'s levels were extremely low.

>

> But here's a big hug anyway (((((((( )))))))))))

> Sherry

>

> Kris, sending you a big hug for your unexpected fright. A few questions for

>you:

>

>

> You've been taking DJ regularly to the endo? For thyroid or for other things?

>And is this the very first you've known any of his docs to be checking vit. D

>levels? Has he been taking multivitamins?

>

> Pete's pediatrician has started to check his vitamin D level - siad it was

>along the lines of " they are starting to discover the part that vit. D plays in

>good health- esp. for bone health. " But I got the impression from both the

>pediatrician and my own dr. that they don't really know the whole story yet

with

>vit. D so nobody really knows if those megadoses that some people are taking

are

>beneficial or perhaps harmful.

>

> A quick Google of vitamin D deficiency doesn't tell you much more than rickets

>or some kind of bone problem in older adults. They don't much know anything

>definitively about it.

>

>

> So another question: Is this a new endo or a dr. you've taken DJ to for a

>while? In other words, do you know what to expect of his " bedside manner? "

>

>

> From what I read online, unless DJ has rickets, (which is hardly likely in

this

>day and age!) it doesn't seem likely that there is much to go on concerning a

>vit. D levels.

>

>

> So, yes, our ped. is keeping an eye on Pete's vit.D level, but I don't feel as

>though anyone is sure what those numbers mean yet.

>

>

> Keep us posted, and tell your endo not to do that anymore!

>

> More hugs,

> Beth

> 20 y/o Pete's Mum

> central OH

>

>

>

>

>

>

>

[Guest guest]

>>>>Cause now I am pondering big time about system domino effects & trying to

figure out which of his docs I need to discuss this with.

Considering DJ is vying for the title of Mr Auto-immune Disease of the

Month...<<<<

Kris, I certainly didn't mean to downplay the seriousness of Vit D

deficiency...you don't even want to know how many years we've spent trying to

get to the bottom of WHY there is a deficiency. 's was alarmingly low and

her endo was very very concerned. Thus began years of ortho, endo, hematology,

gastroenterolgy, back to hematology searching, testing, diagnosing etc.

also has had Crohn's...another autoimmune disease. Her issues turned out to be

that she was absorbing nothing...not just vit D but all nutrients.

The vitD level was a symptom, not a cause...then again after awhile who can tell

anymore.

There's a vitD list at yahoo (of course) and a big interest among the autism

community.

Last year megadoses of Vit D were being touted as the preventative measure for

h1n1, and the thing to turn to if you had been exposed, by the alt. med folks.

Very recently I've read opinions by a couple of doctors who suggest the megadose

may not necessarily be in the child's best interest. Believe me please, I have

read every scary thing published about VitD deficiency and I went thru long

frightening years worrying about it before it was such a popular topic.

Hopefully this will lead you in the right direction to get to the bottom of the

deficiency...are his cal levels ok? That was the next thing to go for . And

for what it's worth we use Carlson's Vit D drops (2000iu per drop) which is

indistiguishable in food or drink; it's so concentrated. For awhile there she

was on rx drops which are vitD2 that I did not want to give her.....but I did

cause I was scared. The doctors also questioned my " compliance " with their

cal/vit D protocol and it really ticked me off. We kept supplementing and

causing her GI distress, and her levels stayed low and it was a horrible

horrible time. Finally the fact that she wasn't able to absorb anything was

discovered by the GI docs. ACK this is bringing back bad memories.

more hugs going your way!!!

Sherry