Re: Return from Mayo (Kleins)

[Guest guest]

Darla,

Sorry to hear you are dealing with more issues. Hang in there and remember to take time for yourself. You need to take care of yourself so you can be more help for your family. Best of luck. You are in my prayers,

Loriann

[Guest guest]

Darla,

Sorry to hear you are dealing with more issues. Hang in there and remember to take time for yourself. You need to take care of yourself so you can be more help for your family. Best of luck. You are in my prayers,

Loriann

[Guest guest]

Big Hugs for you Darla. Get some rest and then try to sort it all

out.

Geri-Anne and Wyatt, Complex I

> The trip was tiring and I think all the traveling has caught

up to me. I am experiencing lots of muscle pain and weakness. I am

very exhausted and have been resting most of yesterday and today but

wanted to update you all.

> I did enjoy meeting both Heidi and Krystena and their

families. Heidi stayed at the same hotel so her son and Asenath

played together in the water while us adults were able to talk. I

met Krystena at the hospital for a brief time as well and although

not much time together, enjoyed the visit.

> As far as Asenath, she had another small stroke episode about

two weeks ago and so the doctors want us to remain at the same

steroid level rather than reduce monthly for now. We also will be

repeating her brain scans one month earlier than planned so will

need to return in April for those. Her Carnitine and acidosis

issues were a little worse so we are increasing her meds again

also. Disappointing visit for her, but nice to know the docs are on

top of everything with her.

> Tirzah's tests came back pretty normal so no Mito signs.

This was great news! Luke had basic blood tests done and an eye

examination and I will let you know the results when we hear back.

He does need glasses and no help was really given concerning his

vision loss when he looks up.

> Zipporrah continues to have her tight muscles and left-sided

issues and has begun her Carnitine and COQ10 as well as some

Prilosec for reflux Weekly therapy has begun.

> Disappointingly, I heard back from several abnormal tests for

myself as well. I had a high lactic acid level drawn on Tuesday (as

well as several other abnormal tests) so it was repeated Wednesday

along with lots of other tests, and I am assuming due to my weakened

condition with lots of muscle pain that the lactic acid is on the

rise. Dr. Whiteman also noticed something he had missed from last

October that concerned him and so I will be seeing a Cardiologist in

the next month or so as well as a GI doctor for possible

pancreatitis issues. (I have been having severe upper abdomen/chest

pains for the past 5 1/2 months with lots of acid/burning and pain

radiating through to my back) The EKG I did last October suggested

the possibility of a possible small past heart attack so as

precaution I will see a Cardiologist, although my heart ultrasound

was normal. I also plan to talk to that doctor about my blood

pressure drops when first standing or bending over and back up

causing blackouts.

> Lots of information to digest from the last several trips and

I feel a little overloaded with it all. Trying to digest it all and

remember the important stuff. I am glad to be home! Bed, here I

come!

>

> Darla: mommy to Asenath, Zipporrah, and the other 7 kiddosGet more

from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Big Hugs for you Darla. Get some rest and then try to sort it all

out.

Geri-Anne and Wyatt, Complex I

> The trip was tiring and I think all the traveling has caught

up to me. I am experiencing lots of muscle pain and weakness. I am

very exhausted and have been resting most of yesterday and today but

wanted to update you all.

> I did enjoy meeting both Heidi and Krystena and their

families. Heidi stayed at the same hotel so her son and Asenath

played together in the water while us adults were able to talk. I

met Krystena at the hospital for a brief time as well and although

not much time together, enjoyed the visit.

> As far as Asenath, she had another small stroke episode about

two weeks ago and so the doctors want us to remain at the same

steroid level rather than reduce monthly for now. We also will be

repeating her brain scans one month earlier than planned so will

need to return in April for those. Her Carnitine and acidosis

issues were a little worse so we are increasing her meds again

also. Disappointing visit for her, but nice to know the docs are on

top of everything with her.

> Tirzah's tests came back pretty normal so no Mito signs.

This was great news! Luke had basic blood tests done and an eye

examination and I will let you know the results when we hear back.

He does need glasses and no help was really given concerning his

vision loss when he looks up.

> Zipporrah continues to have her tight muscles and left-sided

issues and has begun her Carnitine and COQ10 as well as some

Prilosec for reflux Weekly therapy has begun.

> Disappointingly, I heard back from several abnormal tests for

myself as well. I had a high lactic acid level drawn on Tuesday (as

well as several other abnormal tests) so it was repeated Wednesday

along with lots of other tests, and I am assuming due to my weakened

condition with lots of muscle pain that the lactic acid is on the

rise. Dr. Whiteman also noticed something he had missed from last

October that concerned him and so I will be seeing a Cardiologist in

the next month or so as well as a GI doctor for possible

pancreatitis issues. (I have been having severe upper abdomen/chest

pains for the past 5 1/2 months with lots of acid/burning and pain

radiating through to my back) The EKG I did last October suggested

the possibility of a possible small past heart attack so as

precaution I will see a Cardiologist, although my heart ultrasound

was normal. I also plan to talk to that doctor about my blood

pressure drops when first standing or bending over and back up

causing blackouts.

> Lots of information to digest from the last several trips and

I feel a little overloaded with it all. Trying to digest it all and

remember the important stuff. I am glad to be home! Bed, here I

come!

>

> Darla: mommy to Asenath, Zipporrah, and the other 7 kiddosGet more

from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla, Yikes! what a lot of info to digest! But I am glad to hear you are getting some answers. I will continue to keep you all in my thoughts and I sure hope Asenath and Zipporah stay as healthy as possible, and you too!

I also wanted to let you know I have not forgotten your request for info about Chelsea's seizures. I have been mulling details over in my head and am trying to put them together so that it will make sense. We have also been dealing with illness over here, and whatever it is , it does not want to let go! UGH! Chelsea is just getting over Bronchitis after almost 2 weeks, Jeff has had an ear and throat inf, was sick for a week and is still having pain and pressure, and I have felt poorly since Fri, being the burnt out super mom!

Something that is sticking in my head about the loss of function in her left limbs. . . .the loss was very gradual, I started noticing it around 2 1/2, also about the time she was dx'd with epilepsy. I do believe her neuro felt the loss was due to seizures, I have also read that uncontrolled seizures can cause peripheral nerve damage/neuropathy(also a side effect of phenonbarb) as well as stressing certain areas of the brain, particularly the hippocampus. The loss of fuction became severe and very noticable after her bouts with aspiration pneumonia. I suppose it is possible that, as sick as she was, that she did have an SLE, it was just never mentioned to us. However, her progress in regaining function of her left limbs has been VERY SLOW. She had the pneu at 3 and now at nearly 7 has regained good movement and minimal use of the left arm and hand. I remembered what you had mentioned recently about recovery from SLE's and strokes, that with SLE's, regaining function typically happens within months and is rarley permanent and with strokes, whatever hasn't been regained in a year is usually permanent? My thought, is that with her extremely slow progress, it is probably due more to peripheral nerve damage from seizures. Control over her seizures can vary, but she has much more notable progress when she is doing well and will stagnate when having many seizures. I will get back to more on the appearence and course of her epilepsy. Meanwhile, you get some more rest!

e, Chelsea's mom(nonspecific mito)

PS, Mon was the 1st day in a week that Chelsea got out of bed. I layed her on the floor to rinse her neb parts, when I came back, our dog was licking her hand profusely and she was holding up her arm and giggling! It was just the cutest thing, thought I would mention it since my freak dog has made you laugh before. He still hates the mailman and the UPS man=)