Re: Is early puberty common with Mito?

[Guest guest]

Good Morning Tamara,

My son had 8 teeth by time he was 6 months old and according to Dr.

Whiteman, this was from mito and mito kids can age faster.

Darlene

[Guest guest]

Good Morning Tamara,

My son had 8 teeth by time he was 6 months old and according to Dr.

Whiteman, this was from mito and mito kids can age faster.

Darlene

[Guest guest]

Hi Tamara;

I think I've read in the past that early puberty has occured with some of the mito kids on the list. Kirkland is almost four and he has B.O. I don't know why he has it so young. I assumed it could be from allthe meds he's on.

Take care,

mom to Kirkland almost 4 yrs, Complex One Deficiencyfairgrovejoe wrote:

Hello! My son Dakota who is 11 years olds(unknown if he has mito), shows soft signs. We are getting ready to be sent to a Diagnostic doctor in St. Louis, Mo. to try to figure out what is going on with him. One question I do have is...is early puberty common with Mito? He started the month he tuned 10 years old. The same month my 15 year old son hit puberty. My 15 year old is my step son, so he has chance of Mito. The doctors agree that he is very young. I almost wonder if this may be going along with his patechia rash, joint pain(high SED rate, low white and red cells and tired and weakness. It is so strange not worring about Joey here lately, I feel like I have put him to the side. I'm not sure how you mommies do it that have more that one sick child. I guess we are

about to find out.Any help would be GREAT!!!!Tamara(mommy of three GREAT boys, Stevie 15(healthy), Dakota 11(soft sins of Mito, and Lil Joey(Mito)Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hi Tamara;

I think I've read in the past that early puberty has occured with some of the mito kids on the list. Kirkland is almost four and he has B.O. I don't know why he has it so young. I assumed it could be from allthe meds he's on.

Take care,

mom to Kirkland almost 4 yrs, Complex One Deficiencyfairgrovejoe wrote:

Hello! My son Dakota who is 11 years olds(unknown if he has mito), shows soft signs. We are getting ready to be sent to a Diagnostic doctor in St. Louis, Mo. to try to figure out what is going on with him. One question I do have is...is early puberty common with Mito? He started the month he tuned 10 years old. The same month my 15 year old son hit puberty. My 15 year old is my step son, so he has chance of Mito. The doctors agree that he is very young. I almost wonder if this may be going along with his patechia rash, joint pain(high SED rate, low white and red cells and tired and weakness. It is so strange not worring about Joey here lately, I feel like I have put him to the side. I'm not sure how you mommies do it that have more that one sick child. I guess we are

about to find out.Any help would be GREAT!!!!Tamara(mommy of three GREAT boys, Stevie 15(healthy), Dakota 11(soft sins of Mito, and Lil Joey(Mito)Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Tamara,

I don't have any words of wisdom about the puberty issues but I

wanted to respond to your comment about putting Joey on the back

burner. morgan was born with chronic illness. I have spent it seems

every waking minute since caring and worrying for her (almost 5 yrs.)

her sister Molly just starting to present in the summer and has

taken a really huge downhill slide. Most of my attention has been

focused on her lately. morgan is pretty stable right now, like she

new I needed her to be! It is the way it is when you have numerous

kids with illness in the family. It is hard. We all do the best we

can as I am sure you are doing great! The kids know and somehow seem

to understand it all.

Dawn

[Guest guest]

I find that when there are several kids with special needs in the family it

can be a real back and forth worrying issue. You just make sure to cover

what each needs and when one is worse they get the most attention and it

just fluxuates as to who is worse. The hardest thing to do is to schedule

double appointments with most of the specialists and trying to keep all the

information separate for the docs. I usually find it helpful for the docs

and myself to type up a page of information about the current issues we are

dealing with with each child (separate page for each child), any questions I

may have, and things I want to discuss. The docs have commented it really

helps them to be able to keep a copy of the sheets for their records and it

helps them to be able to keep the kids' issues from being mixed up in their

heads.

At times it can be a little overwhelming when both are ill or having

very concerning issues. I have had both girls in the hospital together a

couple times and thankfully we have been able to keep them in the same room

or it would have been much harder.

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)

Is early puberty common with Mito?

>

>

> Hello! My son Dakota who is 11 years olds(unknown if he has mito),

> shows soft signs. We are getting ready to be sent to a Diagnostic

> doctor in St. Louis, Mo. to try to figure out what is going on with

> him.

> One question I do have is...is early puberty common with Mito? He

> started the month he tuned 10 years old. The same month my 15 year

> old son hit puberty. My 15 year old is my step son, so he has

> chance of Mito.

> The doctors agree that he is very young. I almost wonder if this

> may be going along with his patechia rash, joint pain(high SED rate,

> low white and red cells and tired and weakness.

> It is so strange not worring about Joey here lately, I feel like I

> have put him to the side. I'm not sure how you mommies do it that

> have more that one sick child. I guess we are about to find out.

> Any help would be GREAT!!!!

> Tamara(mommy of three GREAT boys, Stevie 15(healthy), Dakota 11(soft

> sins of Mito, and Lil Joey(Mito)

>

>

>

>

>

>

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

>

[Guest guest]

Dear Tamara,

I can only tell you what my experience has been. Samya died at age 8 from

mito. Keep in mind, that she was only diagnosed upon death. She did,

however, have many problems going on that were in different systems in her

body and assumed to be unrelated. Each issue was dealt with by that

specialty and yet now we know " multi system organ dysfunction " comes from

mito. When Samya was 5, I noticed pubic hair and was alarmed to say the

least. I went to an endocrinologist, who suspected " precocious puberty " . She

did all the tests and the diagnosis did not fit because Samya's bone age x

rays showed small bone age and usually in precocious puberty it is the

opposite.Then, the endocrinologist called it premature adrenarche. Samya

started some underarm hair by about 7 and had body odor and I used

deodorant. She never got a menstrual cycle (thank God) or breast

development. She had no treatment and I was told that sometimes that just

happens, but at age 5!! She was followed up with blood work to make sure she

would not start a menstrual cycle and that was the end of the story. Knowing

what I know now, it must be from her mito. I cannot explain it medically and

neither could the endocrinologist. I talked to her after Samya died and she

told me she would never have ever suspected mito in Samya although she does

see mito patients since endocrine disorders are common with mito. This was a

doctor that kne Samya for over 3 years. Leanna, who has the same disease,

thus far has no such signs . It is amazing how different the same disease

and same exact mutation can present so differently in 2 siblings. I check

Leanna a lot for this. I used to worry back then about Samya getting a

period and how she would deal with it when she could not even bathe herself

with her delayed motor skills and in the end I never had anything to worry

about. My conclusion from my experience is that puberty is related to mito.

In fact, Samya had major sensory integration dysfunction with fear of so

many things and I am also convinced that is from mito. I told the doctors

that at her post autopsy meeting and they laughed and insisted there was no

correlation. Yeah right, because they just know so much about mito that they

missed a diagnosis fro over 8 years and they were so smart that they put it

all together after she died. Sarcasm is what you detect,yes.

I hope that helps.

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Is early puberty common with Mito?

Hello! My son Dakota who is 11 years olds(unknown if he has mito),

shows soft signs. We are getting ready to be sent to a Diagnostic

doctor in St. Louis, Mo. to try to figure out what is going on with

him.

One question I do have is...is early puberty common with Mito? He

started the month he tuned 10 years old. The same month my 15 year

old son hit puberty. My 15 year old is my step son, so he has

chance of Mito.

The doctors agree that he is very young. I almost wonder if this

may be going along with his patechia rash, joint pain(high SED rate,

low white and red cells and tired and weakness.

It is so strange not worring about Joey here lately, I feel like I

have put him to the side. I'm not sure how you mommies do it that

have more that one sick child. I guess we are about to find out.

Any help would be GREAT!!!!

Tamara(mommy of three GREAT boys, Stevie 15(healthy), Dakota 11(soft

sins of Mito, and Lil Joey(Mito)

Please contact mito-owner with any problems or questions.

[Guest guest]

Tamara,

I was interested in the part of your post where you are describing

petechiae (never sure of that spelling!) , etc. in your son. My

daughter(15yr now)has had problems with petechiae, abdominal pain &

nausea, joint pain, leg pains and fatigue off and on for years. She

was diagnosed with Henoch-Schonlein Purpura by a Nephrologist when

she was 10yr, when these problems suddenly became very acute. She was

put on Prednisone, which relieved the symptoms, but they come back

frequently as she is not on the Prednisone anymore. Some doctors have

told me you cannot keep getting HSP, others have said they don't

know, and a few have said they believe it is connected to the

Mito.How is your son doing?

Mom to Jimmy 17 and le 15, both with Mito

[Guest guest]

Tamara,

Precocious puberty is very common in kids with neuro dysfunction and/or uncontrolled epilepsy. Both of these conditions put stress on the part of the brain the regulates horomones (the hypothalamus or the hippocampus--I can't remember which right now).

I just addressed this issue with my daughter with an endocrinologist. Chelsea, unfortunately, has both severe neuro dysfunction and uncontrolled epilepsy. She started getting pubic hair and B.O. at 5 yrs, she is now almost 8. The endo said while it is common for kids like Chels to show signs of puberty early, it does not necessarily mean they will complete puberty at an early age. I am not sure how this would be different for a boy. CHelsea had blood drawn at the appt which showed just her adrenal gland (which controls the male horomones) has kicked in causing the hair and B.O., but not the female horomones, which precede menses. The endo explained it is not stressful to go thru puberty early, just inconvenient. In Chelsea's case, it would be messy, so she does have the option of continuous BC, if and when that should happen.

I know it is shocking and unsettling to see a younger child showing signs of puberty, but is actually pretty natural. Our bodies are trying to go into puberty from birth, but we secrete a horomone to stop it until a certain age. The above mentioned factors just cause an early stop to that horomone. HTH

Krisitne, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)