chicken pox?!

[Guest guest]

Cara,

What a dilemma! I wouldn't now what to decide. Let your heart be your guide. I'll be thinking and praying for all of you.

Kathy, grandma to Audrey 22 mos.

[Guest guest]

Cara,

My son that has autism and probable mito< I was told not to vaccinate him

nor my daughter for chicken pox and it was felt it would be better for him to

get chicken pox vs the vaccine. My typical daughter, well and him also were

exposed at school every year. Even her best friend rubbed herself on her and

then she was at her friends house when her brother came down with it. My kids

went to different elementary schools and both were exposed.Meaning that they

got exposed alot but did not get it. Finally when she was in 6th grade she got

them. Pediatrician wanted me to vaccinate my son immediately. However

specialist said know... that he would more than likely get it since it was in

our

house and he got in her blanket, stole soda from her cup.. etc.. she just said

let him get it.

I am happy she had it 1st as I knew more what to expect and he can't

verbalize how he feels to me. Because there are not many mom's I could talk

to

about the symptoms-except my own- as most were vaccinated. This is all a hard

choice and hope you can get ahold of the Doctor soon. If not Whitman, someone

else that understands mito.

Anyway, what I wanted to tell you is that my son did not get it until 3 weeks

after her fever and then lasted for 2 weeks. So I was like home for a month

with them. The worst for both was like a 48 hour period when the just were so

itchy. And had to treat the fever with motrin and tylenol to keep it down.

Used oatmeal baths and made them wear gloves. Pediatriacian put my son on an

antiviral to make the symptoms less. Not sure it it worked or not for him.

For years this specialist had me not vaccinate my daughter.. finally we let

her have the MMR II and not him. Most would tell us parents to vaccinate.

Mine has also said not to give my son hepatitis. Used to wonder would I have

to send her away just so she could get vaccinated?

Do you why they said it would be bad for your son to get the chicken pox?

Thinking of you .

Kathy

[Guest guest]

How old is by the way? And why did you not have her vaccinated? Was it

because of the mito at risk factor? Just don't know what to tell ya.. like

let her stay there for the 3 week incubation period or what. And then since I

don't know much about ... but figure he could get chicken pox at any

time also even if you do try to keep her away from him. The problem if I

remember chicken pox correctly is that the kids are contagious when they get the

fever and the rash is not there as yet so you have no clue.

Sorry about the anniversary of your Mom's death. Lost mine 3 years ago and

have those days of the year that I get sad. My sister and I were just

talking about 4 years ago we went home to help her get over an operation and my

son with autism walked out of the house and got lost! What a nightmare that

was.

Well let us know what you decide to do. Praying that you have guidance in

this matter. I am just so happy they both had it now and it is

overwith!

Oh yeah.. so has gotten all of her shots?

Hepatitis is now mandatory to enter 7th grade via my son's age and today

given on the day or the day after kids are born. My daughter it will not be

mandatory for her until she is entering 12th grade I think.

I went to a defeat autism now confernce recently and the most honored

doctors in research were presenting and you would not believe what goes into the

vaccines.

They use organs from animals too... live viruses are scary. My son regresses

with most viruses.

Kathy

[Guest guest]

and I are here alone in Wisconsin - my husband and daughter, , went to visit relatives in Minnesota. Well, one of the cousins there has come down with chicken pox since they have been there and my daughter has not had them yet. She is very exposed, has been sleeping in the same room and playing with the infected child for four days now.

Dilemma: do I let her come home Sunday or make her stay the next three weeks with these relatives until she is better? I hate for her to be away from me when she is ill. This particular sister-in-law is great, however. But then again, she does not know mito and may have it - we don't know yet, and if she does it is soft signs so far.

The biggest trouble is if she comes home, she will expose . We have been told by Mayo this could be really bad news for him. Do I want him exposed now when he has just turned 10, as it is usually worse the older you get? do I dare chance it? THe vaccine has not been an option for him as he had an adverse reaction to DPT, and then did not create response to MMR so is not protected even though vaccinated. We have planned in a couple of weeks for an immune workup at Mayo, among other testing - more heart, neuro, kidneys...

once, again, only bad choices! I'm going to try and get ahold of Dr. Whiteman tomorrow but as it is July 4, I doubt I will be successful. Someone posted he was in England due to family illness, I wonder if he is even back yet.

i am leaning toward having her stay over, but it tears me up to be away from her for so long, especially when she may become ill. But then this could be very serious is she brings it home.

And today is my mothers' birthday and she had been dead less than two years. What a bummer day, I'd like to swear!

To top it all off, when would be coming down with it, we would be having our second set of tests at Mayo about that time. So the tests would be impossible to do - but then again we would probably need to be there anyway if he comes down with it. Good grief.

Thanks for listening and any advice.

cara

If I was not afraid he would get it later in life, I would of course choose for him not to get it at all right now either. It's just so hard to make these calls (decisions).

[Guest guest]

Kathy,

we suspect it would be bad as he has abnormal immune reactions on top of

mito, well really within the mito disease, or whatever. i do know about the

immune globulin that they can give if things get bad and then there is

acylcovir but i am not sure if that is usually mito toxic - i am checking on

it.

i'm sure the pox would be difficult for him. he had influenza A in Febr.

and took months to recover, i wasn't sure he was going to recover well from

that. we were lucky that time.

wouldn't everyone on this list just like to have a boring day?

cara

Re: chicken pox?!

> Cara,

> My son that has autism and probable mito< I was told not to vaccinate

him

> nor my daughter for chicken pox and it was felt it would be better for him

to

> get chicken pox vs the vaccine. My typical daughter, well and him also

were

> exposed at school every year. Even her best friend rubbed herself on her

and

> then she was at her friends house when her brother came down with it. My

kids

> went to different elementary schools and both were exposed.Meaning that

they

> got exposed alot but did not get it. Finally when she was in 6th grade

she got

> them. Pediatrician wanted me to vaccinate my son immediately. However

> specialist said know... that he would more than likely get it since it was

in our

> house and he got in her blanket, stole soda from her cup.. etc.. she just

said

> let him get it.

> I am happy she had it 1st as I knew more what to expect and he can't

> verbalize how he feels to me. Because there are not many mom's I could

talk to

> about the symptoms-except my own- as most were vaccinated. This is all a

hard

> choice and hope you can get ahold of the Doctor soon. If not Whitman,

someone

> else that understands mito.

> Anyway, what I wanted to tell you is that my son did not get it until 3

weeks

> after her fever and then lasted for 2 weeks. So I was like home for a

month

> with them. The worst for both was like a 48 hour period when the just

were so

> itchy. And had to treat the fever with motrin and tylenol to keep it down.

> Used oatmeal baths and made them wear gloves. Pediatriacian put my son on

an

> antiviral to make the symptoms less. Not sure it it worked or not for

him.

> For years this specialist had me not vaccinate my daughter.. finally we

let

> her have the MMR II and not him. Most would tell us parents to vaccinate.

> Mine has also said not to give my son hepatitis. Used to wonder would I

have

> to send her away just so she could get vaccinated?

> Do you why they said it would be bad for your son to get the chicken pox?

> Thinking of you .

> Kathy

>

>

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

>

>

[Guest guest]

Cara,

We were told the same thing that the Chicken Pox for the Mito kid is very dangerous. My children have all been vaccinated. I would have her stay away if he has not been vaccinated and get him vaccinated. My son came down with 3 poxs two years after he was vaccinated and was hospitalized for a precaution with D-10, but he did well and only got the 3 pox that was it. My understanding is it is dangerous. We were told from the beginning that the children would have to be hospitalized in the least if they came down with it. That is why we chose the vacine to try and minimize the stress on their bodies. I hope this helps.

O

[Guest guest]

Cara,

What a tough decision!

I'd love to have a boring day!!!!! I haven't had many of those lately.

This has been a month of ups and downs. walked for the first time

yesterday since May 20th!!! Colin has been referred to the

neuro-muscular clinic for his loss of motor control, strength, double

vision, fatigue, and hand tremor.

Evan had a hard time with the chicken pox. He had them at 8 months, and

developed allergies to everything that he had ever eaten!! Ever since

then Evan's immune system has been horrible. He has a really hard time

with viruses. He has had two episodes with loss of language and left

side weakness following " mild " viruses. His ketones were 100 times the

top of the reference range the last time that he got the flu. He can't

tolerate tylenol either.

Colin, who probably has mito, got chicken pox at 4 (from Evan's

shingles!!). We started acyclovir on day 1, and he had a mild case.

Maybe could take acyclovir and tons of anti-oxidants. Maybe she

could even take the intercurrent illness supplements from the article on

mito for primary care physicians on the UMDF website. I'd strongly

recommend looking into varicella IG for .

[Guest guest]

cara,

I'm sorry for the worry and decisions. my boys are not immunized either but

we always hope that the IVIg and blood products they get are from enough

people who have had chicken pox that they get passive immunity that way.

Chicken pox is more complicated the older the person is and easiest on

younger children. One question I might pursue is - would it be better to let

him be exposed now while he is not an adolescent yet and give him acyclovir

if he gets it. I honestly don't have an answer to that question.

The only experience I have with varicella is that my youngest daughter had

profound reactions to the DTP and she had to have her MMR broken into 6

shots for each one shot. But she did beautifully with the varicella.

Likewise we opted to immunize my older daughter when she turned 13 and had

not had chicken pox yet and she did fine. I have not hear about profound

reactions to this immunization like I have with both the DTP and MMR. But

.......you have to trust your instincts on this. I'd run it by a trusted

pediatrician or other physician that knows your family situation.

Anne

[Guest guest]

Anne, , , Kathy, Kathy and all,

Thanks for your input. I am wondering about it still. Should I have him

exposed now when younger as he could run into it at school, of course. BUt

then, the power to avert it this time has been put directly on the table in

front of me! It's like a warzone, the decisions you must make when your

child has a serious illness. Thank goodness my BIL and SIL are aware of

mito and take it seriously so I have any options at all. If were

just exposed at school, I would only have to react. THis time, I have the

power. Two edged sword. Life!

still thinking,

cara

Re: chicken pox?!

> cara,

> I'm sorry for the worry and decisions. my boys are not immunized either

but

> we always hope that the IVIg and blood products they get are from enough

> people who have had chicken pox that they get passive immunity that way.

>

> Chicken pox is more complicated the older the person is and easiest on

> younger children. One question I might pursue is - would it be better to

let

> him be exposed now while he is not an adolescent yet and give him

acyclovir

> if he gets it. I honestly don't have an answer to that question.

>

> The only experience I have with varicella is that my youngest daughter had

> profound reactions to the DTP and she had to have her MMR broken into 6

> shots for each one shot. But she did beautifully with the varicella.

> Likewise we opted to immunize my older daughter when she turned 13 and had

> not had chicken pox yet and she did fine. I have not hear about profound

> reactions to this immunization like I have with both the DTP and MMR. But

> ......you have to trust your instincts on this. I'd run it by a trusted

> pediatrician or other physician that knows your family situation.

> Anne

>

>

>

>

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

>

>

[Guest guest]

Cara,

My oldest brought the chicken-pox home from school, so Evan's case

developed after household exposure. Sometimes household exposure cases

can be worse. Evan had thousands of pox (even though he was only 8

months old). His body was so tiny that there wasn't a spot on his body

that I could touch. He has scars on his trunk from where I touched him

to pick him up. Poor baby! He has had shingles 3 times. How is

's natural killer cell function?

Such a tough decision! I'd also ask 's doctors if there is

increased risk from household exposure vs. casual contact at school. I

realize that you have probably had the chicken pox, but.....Evan's first

case of shingles came after exposure to a recently vaccinated child.

Since you also have mito, it might be an additional consideration.

[Guest guest]

,

I talked to Mayo this morning. Not to Dr. Whiteman, but one of his

associates. The doctor agreed with me that it is best to not expose

. So far, he has been luckier than most with mito.Why chance it?

Maybe is he is exposed when he is older, there will be more treatments

available, but maybe not as there is not the impetus to find tx since there

is now a vaccine.

We have been set to evaluate his immune status again on the 22nd. This

appt. has been set for awhile as he has had different immune markers that

are low, and due to his adverse reaction to DPT series and the fact that he

did not create antibodies to MMR. We want to evaluate him further to try to

determine if he will be better off not vaccinated or if there is a safer way

to go about vaccinating for him. Timing!

Before we knew about mito and was evaluated by Dr. Jyonouchi

(immunologist) she suggested IVIG, but I did not feel that testing had been

thorough enough. I just did not 'believe' that immune was his problem and

that we had enough of an idea what we were dealing with to be comfortable

with it at the time. We may end up doing IVIG after this next eval, but I

now feel that we have been thorough. ('s test results were so low

in some of the markers Dr. J was looking at that she could not even believe

the results and reran the tests many times - three times each on three

different blood samples. She admitted she really did not know what to do

with him. He was different than the other children in her test study.)

For some reason chicken pox is quite risky for those with metabolic

problems.

It bothers me a great deal that will be taken care of by someone other

than me if she gets sick, and she probably will, she has been sleeping in

the same room as her cousin with the pox and they have been together

constantly. If I had to choose anyone else to care for her, though, it

would be this particular aunt. I do see soft signs of mito in her, even

though so far she has been quite healthy, but she is hardly an energetic

child. The gym teacher says she is not in the 'healthy zone' in what she

can endure. So I am pretty sure that if we had her tested, she would test

positive. Although mild, to be sure.

But leaving her at her aunt and uncles's seems to be the best way to go for

now. If things get bad, I will go there too and my husband will take time

off to stay home with . Truly I am lucky to have so many options.

I'd rather live a life where I did not know that, though! I'm sure

everyone knows what I mean!

I do feel better now that I talked to Mayo in that I am not making these

decisions on my own anymore.

Oh, and I had the pox already, but I did have a really bad case. But then I

did all childhood illnesses really hard. In retrospect, due to the mito.

With my Irish luck, my husband will probably get shingles. I wonder if that

can be transmitted. I think it can, so all this precaution will have been

futile. Resistance is Futile! well, we'll see..

cara

Re: chicken pox?!

> Cara,

>

> My oldest brought the chicken-pox home from school, so Evan's case

> developed after household exposure. Sometimes household exposure cases

> can be worse. Evan had thousands of pox (even though he was only 8

> months old). His body was so tiny that there wasn't a spot on his body

> that I could touch. He has scars on his trunk from where I touched him

> to pick him up. Poor baby! He has had shingles 3 times. How is

> 's natural killer cell function?

>

> Such a tough decision! I'd also ask 's doctors if there is

> increased risk from household exposure vs. casual contact at school. I

> realize that you have probably had the chicken pox, but.....Evan's first

> case of shingles came after exposure to a recently vaccinated child.

> Since you also have mito, it might be an additional consideration.

>

>

>

>

>

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

>

>

[Guest guest]

Personally, I will never look at Chicken Pox the same as I did before Asenath had hers. Her weakened immune system (which we were unaware of at the time) caused her little body to break. After her chicken pox in Nov. of 2001 she began her horrible migraines which then led to her first stroke, paralyzing her left side. Thankfully much has been regained but her health has never been the same. The chicken pox in the wrong person can be devastating. And then, in others, has little affect as was the case with my 5 older children when they had them. Darla: mommy to Asenath (3) MNGIE, stroke, SLE's, bi-hemi, seizures, migraines, g-tube fed, asthma, apnea, brachycardia/tachycardia, oxygen use at night now, etc. plus the other 7 great kids Re: chicken pox?!> Cara,>> My oldest brought the chicken-pox home from school, so Evan's case> developed after household exposure. Sometimes household exposure cases> can be worse. Evan had thousands of pox (even though he was only 8> months old). His body was so tiny that there wasn't a spot on his body> that I could touch. He has scars on his trunk from where I touched him> to pick him up. Poor baby! He has had shingles 3 times. How is> 's natural killer cell function?>> Such a tough decision! I'd also ask 's doctors if there is> increased risk from household exposure vs. casual contact at school. I> realize that you have probably had the chicken pox, but.....Evan's first> case of shingles came after exposure to a recently vaccinated child.> Since you also have mito, it might be an additional consideration.>> >>>> Please contact mito-owner with any problems or questions.>>