Asenath, Zipporrah, Luke Updates

[Guest guest]

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