Help what do you suggest- any one up yet?

[Guest guest]

Hi guys,

I have spent all night in the ER with My youngest Krisalynn. She broke out in Hives all over her body 2 days ago. I had been giving her benedryl every 4 hours. It would go away and on the 4th hour like clock work was back but more severe. I called the on call genetics doc at Children's Hospital Los Angeles ( Dr. Yanno) and because Kris was saying it was hard to swallow he said to take her in. Some of the welts are as big as dollar bills. The ER doc said he wanted to give her a shot of benedryl and watch her so we did that, they got a little better so he sent us home. She is running a slight temp. Sure as shooting come the forth hour after the shot she broke out again and was so miserable, itching herself raw, I gave her 2 teaspoons of the Benedryl again and they subsided but this time it has only been 3 hours and they are already coming back. I have had no sleep and am afraid she will have an airway problem. The ER doc said to just watch her. Dr. Boles thinks she is effected in her neuro vascular system, we have suspected Mids. Has anyone had this happen? She gets horrible rashes, but has never had hives as the ER doc calls them. She hasn't eaten anything new and I haven't changed laundry soap. Help I am really nervous and she is miserable.

Hugs and scratching

O

Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go!

[Guest guest]

In a message dated 08/06/2001 7:23:26 AM Eastern Daylight Time,

mitooggo@... writes:

<< Has

anyone had this happen? She gets horrible rashes, but has never had hives

as

the ER doc calls them. >>

:

My daughter had a similar experience a few weeks ago. My kids have suspected

MNGIE. She had a head to toe rash-the hives were as big as you are speaking

of. I gave her benedryl every 4 hours, oatmeal baths, and applied calamine

lotion. She also would wake at night with incredible itching. She also was

lethargic. After a few days of this, one day she woke up and they were gone;

then for a few days vascular type lesions that her brother also gets. I took

pics of Alana and plan on showing them to the geneticist. The pedi did not

want to see her; the pedi thought it may have been poison ivy-nope. I believe

it was an allergic reaction to a bug bite.

Good luck-I just stayed on tope of her symptoms for the few days it affected

her.

Michele Sullivan

Mom to Nolan (6) and Alana (5)-

[Guest guest]

Michele,

Did she complain about her throat being tight? Krisalynn says it is hard to make the juice go down. She is 5 years old. I can handle the itching but I am afraid to sleep incase she has a breathing problem. Good Idea to take pictures at least I can show the Geneticist as well since Yano is not her normal Doc. not that he isn't good, just isn't as up on her.

Thanks

Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go!

[Guest guest]

broke out in terrible hives the day before he had Strep throat once.

And, I used to always break out in hives before I came down with a bad virus.

Dena (hoping your lil' one feels better!!!)

[Guest guest]

In a message dated 08/06/2001 8:19:56 AM Eastern Daylight Time,

mitooggo@... writes:

<< Did she complain about her throat being tight? Krisalynn says it is

hard to make the juice go down. She is 5 years old >>

;

Alana didn't complain that her throat was tight but I know her eating and

drinking were very low. She slept alot and was miserable and lethargic.

What about taking her to the pedi or calling the geneticist and have one of

them look at it?

Michele

[Guest guest]

Hi everyone,

Well, after spending pretty much all evening and night in the ER Krisalynn is feeling somewhat better. I got ahold of DR Boles and he said to go ahead and give her a steroid. So that is what we have done. Poor baby is exhausted along with me. They said she should not break out again and if she does bring her in again. We still don't know what caused it. Thanks for everyones support. You would think I wouldn't get scared anymore by now but when each one does something they haven't done before I get very nervous! I came home to Kira in a cyclic vomiting cycle so I am dealing with that now.

I do OK when they take turns but when all three go down at once I get a little freaked. is running fevers for who knows why. My sitter said I think Kira hasn't thrown up for the last 5 min, but has 102 temp as she headed out the door. I just sighed put Kris in bed and started on the other 2. What a few days it is going to be. Well, Like I said, thankyou all so much for helping me so quickly.

Hugs

O

Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go!

[Guest guest]

I would ask Dr. Boles about something called angioedema. My middle

daughter had a very severe dysautonomia when she was younger and this

was one of the things that we battled with as well. I was convinced at

the time that it was related to her underlying disease and

dysautonomia. It was supposedly triggered by a mycoplasma infection,

and then continued on for months. The attacks would start suddenly and

there was usually no obvious trigger. Sometimes she would have airway

swelling and stridor and we would have to be admitted to the hospital.

This was treated with steroids and eventually went away.

Angioedema presents as a hive like rash, sometimes with a butterfly type

rash on the face, and itches like hives. There is sometimes swelling of

the air way as in an allergic reaction as well. I believe that the sed

rate is sometimes elevated as well.

Jeannine

[Guest guest]

, I know this reply is a little late in coming, but I haven't been

checking my mail much recently(we are having some nice michigan weather!).

Does your daughter have eczema, you mentioned she usually gets horrible

rashes. I do not have mito, but have had exzema all my life. I get horrible

rashes with uncontrollable itching. In the past, I have had hive breakouts

that lasted a week or so. It was usually on my legs and usually from hiking

thru weeds. This summer I have been having a really hard time with the

rashes. Earlier, I broke out on a rash all over my torso, which is an unusual

place for me. Since then I have been taking allegra. It has completly cleared

up my nasal allegies and helped with the itching. I also went to a health

food store and am taking Vitamin C w/ bioflavinoids (natural antihistamine)

and kelp temporarliy for healing. CoQ10 is also good. Omega fatty acids help

reduce inflammation. I have been told diet plays a huge factor in skin

allergies. Turns out some of my favorite foods are triggers: wheat, dairy and

peanut products. Well, I guess I won't be eating peanut butter sandwiches and

cottage cheese for lunch anymore! I hope Your daughters hives are gone by

now, I know how miserable they are. The hardest thing is not to itch!!

e, Chelsea's mom(non-specific mito)

[Guest guest]

e:

If you have a health food store, try some of their products of dairy that is

made

out of soy. My one son when he was a toddler couldn't tolerate a certain level

of milk. He would throw up. Our ped took him off all milk products. But I

bought touffiti (spelling) frozen bars, they are like ice cream sandwiches.

They

make wheat free pasta, and wheat free breads. Don't know if there is a

substitute for peanut butter. But check out a health food store. You might be

surprised at what you will be able to eat again. My brother doesn't eat any

bread because of the wheat. But he is trying the wheat free pastas. Good luck.

mom to Leah

jayvelde@... wrote:

> , I know this reply is a little late in coming, but I haven't been

> checking my mail much recently(we are having some nice michigan weather!).

> Does your daughter have eczema, you mentioned she usually gets horrible

> rashes. I do not have mito, but have had exzema all my life. I get horrible

> rashes with uncontrollable itching. In the past, I have had hive breakouts

> that lasted a week or so. It was usually on my legs and usually from hiking

> thru weeds. This summer I have been having a really hard time with the

> rashes. Earlier, I broke out on a rash all over my torso, which is an unusual

> place for me. Since then I have been taking allegra. It has completly cleared

> up my nasal allegies and helped with the itching. I also went to a health

> food store and am taking Vitamin C w/ bioflavinoids (natural antihistamine)

> and kelp temporarliy for healing. CoQ10 is also good. Omega fatty acids help

> reduce inflammation. I have been told diet plays a huge factor in skin

> allergies. Turns out some of my favorite foods are triggers: wheat, dairy and

> peanut products. Well, I guess I won't be eating peanut butter sandwiches and

> cottage cheese for lunch anymore! I hope Your daughters hives are gone by

> now, I know how miserable they are. The hardest thing is not to itch!!

>

> e, Chelsea's mom(non-specific mito)

>

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

>

>

[Guest guest]

, Thanks, I am looking into modifying my diet. I have had such a horrible

time with rashes this summer and I know I need to do something. I was

actually at the bookstore yesterday and found a good book with alternatives

to dairy and wheat. My mother always reminds me how bad my colic was as an

infant and I guess I had to have special formula. I was also put on a small

dose of phenobarb for a short time because I would scream for days. I am so

glad that my daughter does not have these problems on top of her disorder.

e, Chelsea's mom(non-specific mito)