Re: Anne J./ (vascular issue)

[Guest guest]

I have really been thinking a lot about you Anne and how your son

passed away. It has really bothered me because of the similar vascular

issues our children, along with 's child, deal/dealt with. We have

been very slowly weaning Asenath from the steroids as we had tried to do

last year unsuccessfully. Last year we were decreasing by 1 ml per week for

over a year and we started noticing her getting her prior symptoms back when

she was at about 5 ml. We continued to wean her taking a slower pace and

then within a week of getting off the steroids she caught the flu and had a

stroke. So of course she was put back on them, this time at 3 ml and after

a month or so we again began to decrease her levels, this time by 0.2 ml per

week. Now, once again, we are seeing her showing more fatigue, paleness,

loser bowel movements, lower than normal appetite (which already stinks),

apnea, pulse-ox drops, heart rates of low 70's when her normal sleep heart

rate is between 90's and 120's. After hearing how the low heart rate was

mentioned in your son, Anne, and the probable cause being a stroke or brain

bleed, it has just been harder to swallow; the fact that the same thing

could happen with Asenath. We have known the possibility was there for the

past several years, but each time we start noticing her old symptoms

returning, reality smacks me between the eyes once again. For some reason,

the steroids have stopped most viruses and almost ALL stroke episodes from

occurring. So, when we get close to being off them, we again start to deal

with the old symptoms again. Did you guys ever notice any changes with the

IVIG (when off compared to on them) in similar ways that we have with the

steroids? Everything just falls apart when she isn't on them or is only on

a low amount. I am just wondering if Asenath will ever be able to handle

being off steroids. I can't bear to watch her start to have strokes again,

if steroids prevent them, but then, if she keeps on them much longer they

say the steroids could damage her major organs. It seems to be a no win

situation. Even more frustrating is the fact that last time we took her off

and she was placed in the hospital there was a differing opinion as the need

for her to be there. Her neurologist wanted her there after seeing her and

knowing her condition, but the main ped. on duty at the hospital didn't

think she needed to be there. She was out 99% of the time only waking to

vomit and scream holding her head in pain and wreathing around, unable to

hold anything down by herself, obviously having a stroke seen by the

migraine and holding her head and proven when she woke up, but the head doc

just couldn't see past his own view of things and just ignored the stroke

symptoms continuing to push us out of the hospital. She woke up blind in

one eye and the nurses and others who visited her saw it very easily and yet

due to the conflict the head doc avoided examining her, refused to send for

a neuro, and never helped her or even wrote anything down about it! The

reason more than anything this scares me is that I feel like we are once

again headed that way and if we do, will anyone be there to help her and

take it seriously or will they once again blame her cyclic vomiting, just a

migraine, and normal fatigue for a probable Mito kid? I know strokes can't

be stopped in kids, but IV's can help prevent them by keeping the person

hydrated! I am just worried noone will be there to help should we need it

again.

Sorry to dump on you guys but I knew you would understand my emotions

concerning the Vasculitis. Anne, don't feel that you have to respond and I

hope this wasn't too burdensome on you at this time. I continue to think

about you daily and will continue to pray for you and your family.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning, SID,

GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant

subclavian artery, disautonomia, hypertonicity, migraines, possible

seizures, dumping syndrome, iron deficiency...

Luke (16) migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(16 months) SID, dev. delays, right hemiparesis issues...

If you live in Wisconsin, the ironic thing is that I had

> just started planning a 1/2 day conference about this and other emergency

> preparedness issues for children with special needs (natural disasters,

> etc.). Unfortunately, I am now speaking because I am in a position of

> knowing about these issues which are often fraught with local politics and

> funding. The red cross, another parent and a child alert representative

> will also be giving presentations.

>

> The conference is May 14 (Saturday) from 8:45 to noon I think. It is at a

> conference center 1/2 mile from Children's Hospital right off of 45 and

> Watertown plank road. It is $5 and I think that is refundable if you show

> up. You can call for more information, to request a brochure

> or to register.

>

> If anyone not living in WI is interested, let me know and as I develop my

> talk which will include Sam's encounter with the paramedics and community

> hospital and create a " to do " list for parents in order to be prepared, I

> will send that to you by email.

>

> However, to answer your question Darla -we don't know the specific cause

> of the bradycardia. It did seem that in the last 12 months he was getting

> more and more tired and sometimes his little body seemed to need more and

> more help to compensate. I refer to mito as a disease that literally

> starves our children for energy.

>

> Anne

>

>