Cyclic vomiting ?

[Guest guest]

To those who deal with cyclic vomiting, what do you see surrounding the

vomiting episode. Asenath has only become worse lately and is daily

vomiting now. She started three months ago. It seemed when she was

decreased on steroids she became more active and then began to cough when

playing. Then she began to vomit in the late morning/early afternonn hours.

Phlegm build-up seems to be part of the problem yet the pulmo doesn't

think asthma should be a problem as she has been on between 60-150 ml. of

steroids daily for the past year. ENT checked her vocal cords today and

they were fine (also as a note Zipporrah's appeared ok 3 months ago so the

ENT wonders if the sound she makes is more lower down in her trachea/airways

unless things have changed lately.) so the ENT thinks the vomiting/coughing

is either GI or pulmo related. We will be doing a PH-probe and a scope

under anesthesia next Monday while we are here so hopefully we will get more

info, but I was wondering for those with cyclic vomiting what you see and

hear when your kids vomit??! Thanks for any input.

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,

seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines

>

>Reply-To: Mito

>To: Mito >

>Subject: Co Q response to heidi

>Date: Wed, 4 Aug 2004 03:33:49 -0700

>

>Heidi: thanks -good question about the base of the Co Q. I don't think it

>is in MCT oil but I would have to ask. I have it compounded for the boys by

>our pharmacy. We used to use the Tischon Q gel but the volume was

>impossible to get into the boys. I think it was 10 mg/ml and for Sam that

>meant that 4x/day he would need 10 ml. No way, no how was that going to

>happen.

>

>We do use an NDC brand ...I just don't know how the pharmacy compounds it

>though - I will ask tomorrow.

>

>years ago the boys had normal levels and now they're just dropping. and

>their health is declining as the levels drop.

>

>My daughter who has no GI issues is taking the Q gel brand (which is

>supposedly the most bio available one) and her levels are dropping too. her

>disease has been in a flare for a few months as well and I am sure the mono

>is not doing her any favors but I just don't understand why these levels

>are dropping.

>

>Today our doctor did talk with Dr. Shoffner. I don't want to miss quote

>anyone because I heard about this via a voice mail so I might have it

>wrong. What I think Dr. S said was that we should not worry about obtaining

>good levels because the fact is that while Co Q is not exactly useless - it

>is not a miracle and is not going to make that big of a difference in their

>disease course. (which leaves me wondering why I am spending thousands of

>dollars on it each year for 3 of my 4 children ).

>

> I don't know if I believe that - at least not for those with milder

>disease presentation like my daughter. her restrictive lung disease got

>better (by objective testing) when she had better Co Q levels and now her

>pulm fx is worse than last year which corresponds with worsening Co Q

>levels. So how can it not affect disease course unless this is all a

>coincidence?

>

>I guess there was also the question of whether or not the boys absorb the

>Co Q. I understand the question given the fact that their GI motility is

>so bad that they are on TPN but the fact is that they are able to obtain

>drug levels of other meds that they receive by J tube. In fact Zach's last

>trileptal level was slightly high and Sam's zonisamide level is right where

>it should be (albeit with a supposedly toxic dose).

>

>Thank you for the thoughts about what base it is in. I only wish the darn

>stuff came IV or even better if I could inject it right into their cells.

>

>Frustrated!

>

>Anne

>www.caringbridge.org/wi/zachsam