Re: Asenath, Zipporrah, Luke Updates

[Guest guest]

Darla,

My prayers and strength are with you. I have no idea how you manage

so many Mayo trips. One every 4 months exhausts me, and you are

dealing with so much more than us.

Probably the same neuro also says she believes the boys have a

neurotransmitter disorder----wonder why we are so responsive to mito

meds (and we have a confirmed partial complex 1 in one of them). The

only reason I think she may be right is that I have the most hyper

kids on the planet.

My thoughts and prayers are with you and the children.

Kris

>

> We returned to the GI doc yesterday and she agreed the

benifiber on

> Zipporrah's dumping issue doesn't seem to be working so now we are

going to

> start using Imodium (spelling?) to try to slow down her motility.

I am

> hoping that it works as the chronic diarrhea has been really bad

and is

> causing major butt rashes that are so painful and she also seems to

be

> having tummy aches as she is so crabby all the time. The doctors

said they

> assumed that to be true. What have you guys done or used to help

treat the

> dumping other than slow 24 hour feeds?

> Also, the GI doc thought it a good idea to do a scope on

Asenath to see

> if they can determine why she is vomiting almost daily now. We

have had

> some fun experiences the past few days at the Mayo Clinic cleaning

up her

> clothers and my arms. The last time she threw up in the waiting

room I saw

> it coming and grabbed a onsie from the diaper bag and held it under

her to

> catch some and thankfully the rest got my arms. None on the floor,

Asenath,

> or my clothes! YEH! The first time I was in the back room with

an

> appointment for Zipporrah's swallow OT visit. She was soaked and

the desk

> people were so kind and gave her a robe and actually washed her

clothes for

> her right then and there. A good thing there was a washer on that

floor I

> guess! Anyway, it sounds like we may be staying longer if they

can

> schedule the scope soon. The original plan was to return home on

Wednesday

> evening, but we knew it might be necessary to stay longer if ENT

issues were

> to be fully addressed. I am looking forward to seeing the ENT and

> discussing all the breathing issues and vomiting/coughing issues

Asenath is

> having. She seems to be having tummy aches PRIOR to the coughing

so they

> are wondering if reflux (caused by something??) is causing her to

start

> coughing and then she vomits. We REALLY want answers to this

issue!!!

> Luke's MRI/MRA went well and he received a clean report from

them. I

> assumed that to be the case since Asenath only shows one large

white spot on

> her MRI even though she has had so many strokes. The doc was

frustrating to

> deal with since she is the ONLY doctor that does not believe Mito

is the

> cause totally. She knows it is a good possibility, but as neuros

go, she

> needs a 100% specific diagnosis of Mito. Unspecified is not good

enough, so

> she tries to grab for diagnosises that just don't fit. Even Dr.

Whiteman

> seems frustrated with her frequently. The biggest problem I am

having with

> the doc is that she will not listen to anything that even hints at

Mito

> symptoms so she doesn't get the full picture of my kids. Dr.

Whiteman

> wanted me to talk to her about the disautonomy symptoms in the

girls but

> with her attitude there is NO WAY I can mention them. Sometimes I

wonder if

> a new neuro might be a good idea, but we have been through so much

with this

> one and she know Asenath's case so thoroughly and it is important

whoever

> deals with the Vasculitis be well informed, so we will just have to

deal

> with the issue. Sad thing is, the neuro was starting to be

convinced of

> Mito and specifically MELAS, but when the test was negative, she

again went

> back to her " don't mention Mito because we don't know if it's that

yet "

> attitude. Dr. Whiteman is convinced, all the other specialists at

Mayo are

> convinced, we are convinced, bla bla bla... My feeling is if Dr.

whiteman

> believes we have Mito and the blood tests and biopsies point toward

it even

> without giving a specific form, then that is good enough for me!

Sorry

> about the rant. I am just so tired of trying to watch what I say

not to

> step on her toes and yet try to deal with the girls' issues at the

same

> time.

> Anyway, Luke was told by the neuro that he is dealing with

purely

> migraines and a sleep issue that is causing it. Unfortunately for

that

> outlook, the sleep issues occurred AFTER the migraines, and the

stroke

> symptoms that come with the migraines and all the other symptoms he

is

> having that are so identical to his siblings, makes me still assume

Mito is

> at the basis of all his trouble. I am not pushing the issue with

the docs,

> and agreed to try the Anitriptoline (I know that spelling is off!)

to see if

> the migraines will get better.

> I did also discuss the feeding issues with the physiatrist and

GI

> doc(about Zipporrah) and they agreed it wise to back off on the

oral foods

> for now. They heard her increased coughing and gagging and thought

it due

> to the increased oral foods. So, we will be waiting a while in

that area.

> Lastly, I would appreciate prayer for my strength. These trips

always

> take so much out of me. I am so worn down I am dragging. It feels

like

> lead in my arms and legs and I am shaky. (A lot like Krystena

was.) I know

> rest is the best medicine for me and will try to get some, but you

know how

> hard that is in the hospital/clinic/RMH environment. If I get much

worse I

> will stop by Dr. Whiteman's office, but I did just do blood work

and urine

> tests on Friday and yesterday, so not sure anything further could

be done if

> they don't show anything. I may stop by to get the results though.

> Well, gotta run. Zipporrah is complaining again. I hope

everyone is

> doing well today.

>

>

>

>

> 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

> and the other kiddos