good update, and a question

[Guest guest]

sounds like Grace is doing really well. You must be so happy.

When and Max used to get a rash (without infection) I used the therapeutic cream from a company called Little Forest. They have a regular moisturizer and a therapeutic cream. WE stil use it. It clears up just about anything. Helps the healing and is all natural. If you cannot find it locally, run a search on the internet. There are few places that sell it.

With Grace starting to sign, is she working with a speech therapist ? And if so, how often ?

best regards

rosy, muim to max, 5 1/2

[Guest guest]

Hello all,

Just wanted to give a little update on Grace. Wow, she is doing good. Maybe it does have to do with the winter (as some other parents have noticed) but, she is off almost all of her "non cocktail" medicines simply because she does not need them. Three months ago she was taking something for everything (reflux, appetite stimulants, liver meds., migranes, sleeping issues and I'm sure something else) now she is down to CoQ10, and Carnitor. She still has one more month to go, and we will check her liver enzymes to see if she can be permanatly off her liver medicine. I even just got word yesterday that she may be discharged from OT for the summer, because she is getting close to age appropriate with her fine motor and other skills. This will begin again when she starts preschool because of her sensory issues, but it's a good feeling knowing all these therapy's are working. Her speech is still slow, but improving daily. She is forming two word sentences and actually starting to express some emotion in words. Speech will always be a struggle for her since she has some lower muscle tone in her face, this just makes it harder to understand her. She is learning some new signs so with her talking and signing we hope that we will be able to understand her more.

O.k. now the question. Everything else in her is doing great, but her skin is a wreck! She was out playing with her daddy in the snow and when she came in the area around her g tube got really red and sore. Now it even has a few small blisters in the middle of the rash. I understand how the irritation happened, but what about these blisters? Also she does have eczema and where she itches (before we catch it and treat with Elidel) it almost always becomes infected. I have been treating all the areas with a triple antibiotic cream, and it is slightly working. I'm starting to wonder if this is a doctor visit worthy thing or if I should continue treating this at home. Any ideas?

Thanks in advance.

Claim your Space NOW! Have fun sharing blogs, photos and music lists online.

[Guest guest]

Do you think she might be battling a yeast infection at the G-tube site. I

have been told it is more rare to happen and yet my girls have battled them

frequently in the past at the g-tube site. It causes lots of small blisters

and gets very red and soar looking and often oozes. At one point, Zipporrah

had a huge welt/blister just above the site and it looked horrible. My

pediatrician suggested we use Elidel but when it wouldn't work, I switched

to a combination of Nystatin Ointment and Triamcinolone. I placed some a

couple times a day (three is optimal) on gauze and taped it to the g-tube

site. Within a couple of days the large blister was gone and the site

healed very quickly.

I am glad to hear she is doing better lately. It is always nice to

hear a positive change.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

good update, and a question

> Hello all,

>

> Just wanted to give a little update on Grace. Wow, she is doing good.

> Maybe it does have to do with the winter (as some other parents have

> noticed) but, she is off almost all of her " non cocktail " medicines simply

> because she does not need them. Three months ago she was taking something

> for everything (reflux, appetite stimulants, liver meds., migranes,

> sleeping issues and I'm sure something else) now she is down to CoQ10, and

> Carnitor. She still has one more month to go, and we will check her liver

> enzymes to see if she can be permanatly off her liver medicine. I even

> just got word yesterday that she may be discharged from OT for the summer,

> because she is getting close to age appropriate with her fine motor and

> other skills. This will begin again when she starts preschool because of

> her sensory issues, but it's a good feeling knowing all these therapy's

> are working. Her speech is still slow, but improving daily. She is

> forming two word sentences and actually starting to express some emotion

> in words. Speech will always be a struggle for her since she has some

> lower muscle tone in her face, this just makes it harder to understand

> her. She is learning some new signs so with her talking and signing we

> hope that we will be able to understand her more.

>

> O.k. now the question. Everything else in her is doing great, but her

> skin is a wreck! She was out playing with her daddy in the snow and when

> she came in the area around her g tube got really red and sore. Now it

> even has a few small blisters in the middle of the rash. I understand how

> the irritation happened, but what about these blisters? Also she does

> have eczema and where she itches (before we catch it and treat with

> Elidel) it almost always becomes infected. I have been treating all the

> areas with a triple antibiotic cream, and it is slightly working. I'm

> starting to wonder if this is a doctor visit worthy thing or if I should

> continue treating this at home. Any ideas?

>

> Thanks in advance.

>

>

>

>

--------------------------------------------------------------------------------

> Claim your Space NOW! Have fun sharing blogs, photos and music lists

> online.

>

> Please contact mito-owner with any problems or questions.

>

>

>

>

--------------------------------------------------------------------------------

>

[Guest guest]

,

Do you a desitin or zinc oxide type cream to her site

to prevent moisture causing redness? Also, I have one

son allergic to neosporin found in the triple

antibiotic cream. He develops blisters from it. We

use bacitracin cream at times for suspected infection

areas. It is over the counter. HTH, Loriann

--- wrote:

---------------------------------

Hello all,

Just wanted to give a little update on Grace. Wow,

she is doing good. Maybe it does have to do with the

winter (as some other parents have noticed) but, she

is off almost all of her " non cocktail " medicines

simply because she does not need them. Three months

ago she was taking something for everything (reflux,

appetite stimulants, liver meds., migranes, sleeping

issues and I'm sure something else) now she is down to

CoQ10, and Carnitor. She still has one more month to

go, and we will check her liver enzymes to see if she

can be permanatly off her liver medicine. I even just

got word yesterday that she may be discharged from OT

for the summer, because she is getting close to age

appropriate with her fine motor and other skills.

This will begin again when she starts preschool

because of her sensory issues, but it's a good feeling

knowing all these therapy's are working. Her speech

is still slow, but improving daily. She is forming

two word sentences and actually starting to express

some emotion in words. Speech will always be a

struggle for her since she has some lower muscle tone

in her face, this just makes it harder to understand

her. She is learning some new signs so with her

talking and signing we hope that we will be able to

understand her more.

O.k. now the question. Everything else in her is

doing great, but her skin is a wreck! She was out

playing with her daddy in the snow and when she came

in the area around her g tube got really red and sore.

Now it even has a few small blisters in the middle of

the rash. I understand how the irritation happened,

but what about these blisters? Also she does have

eczema and where she itches (before we catch it and

treat with Elidel) it almost always becomes infected.

I have been treating all the areas with a triple

antibiotic cream, and it is slightly working. I'm

starting to wonder if this is a doctor visit worthy

thing or if I should continue treating this at home.

Any ideas?

Thanks in advance.

---------------------------------

Claim your Space NOW! Have fun sharing blogs, photos

and music lists online.

Please contact mito-owner with any

problems or questions.

---------------------------------