Re: new to the group and I have a question

[Guest guest]

Welcome to our group. I could google it, but can you please advise me (and I am sure some others) what Mastocyctosis is? I am not sure I have heard of it; have forgotten what it is, if I knew.....

First, I know we always do what is best for our child / children.....is downsizing really going to help? Or, what about an alarm system of some sort, or cameras? There are just sooo many things today that there HAS to be a better solution. And, are you a stay at home mom? If so, or IF NOT, what about a great daycare program in a center (so there are more than one set of eyes)? I am thinking that down-sizing may help but not SOLVE things......but, I am not sure what this Mastocyctosis is either......

Seems like there would be other solutions to help. I can tell you that my 6 year old aspies was and often still is a full-time job. He was kicked OUT of daycares, and it took both of us to parent him, and some times, it seems we need more help. We have mental health waivers for him and his 14 year old brother; I would CONSIDER that; I would also look into special headstart programs, and other like programs, that can meet his needs in a stable, safe, and educational standpoint, where they are familiar with such issues (or willing and able to learn). There HAS to be some services to help you out; call your local education association to explain and ask. Ask your physician for suggestions.....

Have you ever considered a leash system? We had to use one with our now six year old; he would be with us, holding our hand, and gone before we even realized it; we were (still are) amazing parents, and it would just have us dumbfounded, we would not realize we let go of his hand. One day, he was on the curb at Wal-Mart in about 20 degree temperatures, screaming out, Mom, Dad on the curb; he was about 3; we did not know where he was; we had lock down and everything within SECONDS----he was OUTSIDE-----some people wanted to turn us in!!! (the gul) but let's work to find some solutions; I am sure we can all help you with ideas, and with trying some, we can get you some things that WORK!!!

Ruthie Dolezal

From: carrigg8582@...Date: Wed, 20 Feb 2008 01:01:04 +0000Subject: ( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

[Guest guest]

Mastocytosis is a rare disorder characterized by abnormal

accumulations of mast cells in skin, bone marrow, and internal organs

such as the liver, spleen and lymph nodes.

What are the Symptoms of Mastocyctosis?

Abdominal pain

Hives & other rashes

Anaphylaxis

Inflammation of the esophagus

# Blood pressure changes & shock

Intestinal cramping and bloating

Bone pain (mild to severe/debilitating)

Itching, with and without rashes

Chest pain

Liver, spleen and other organ involvement

Cognitive difficulties/brain fog

Malabsorption

Degenerative disc disease

Migraine headaches

Diarrhea

Muscle pain

Dizziness/vertigo/lightheadedness

Nausea

Faintness

Osteoporosis/ Osteopenia

Fatigue

Peripheral neuropathy and paresthesias

Flushing

Rapid heart rate

Gastroesophageal reflux

Vomiting

Hematological abnormalities

While some symptoms apply to Nickolas now it is likely that he will

experience them all through his life. Hope this helps. I just copied

and pasted since it is difficult to explain.

>

> Welcome to our group. I could google it, but can you please advise

me (and I am sure some others) what Mastocyctosis is? I am not sure I

have heard of it; have forgotten what it is, if I knew.....

>

> First, I know we always do what is best for our child /

children.....is downsizing really going to help? Or, what about an

alarm system of some sort, or cameras? There are just sooo many

things today that there HAS to be a better solution. And, are you a

stay at home mom? If so, or IF NOT, what about a great daycare

program in a center (so there are more than one set of eyes)? I am

thinking that down-sizing may help but not SOLVE things......but, I am

not sure what this Mastocyctosis is either......

>

> Seems like there would be other solutions to help. I can tell you

that my 6 year old aspies was and often still is a full-time job. He

was kicked OUT of daycares, and it took both of us to parent him, and

some times, it seems we need more help. We have mental health waivers

for him and his 14 year old brother; I would CONSIDER that; I would

also look into special headstart programs, and other like programs,

that can meet his needs in a stable, safe, and educational standpoint,

where they are familiar with such issues (or willing and able to

learn). There HAS to be some services to help you out; call your

local education association to explain and ask. Ask your physician

for suggestions.....

>

> Have you ever considered a leash system? We had to use one with our

now six year old; he would be with us, holding our hand, and gone

before we even realized it; we were (still are) amazing parents, and

it would just have us dumbfounded, we would not realize we let go of

his hand. One day, he was on the curb at Wal-Mart in about 20 degree

temperatures, screaming out, Mom, Dad on the curb; he was about 3; we

did not know where he was; we had lock down and everything within

SECONDS----he was OUTSIDE-----some people wanted to turn us in!!!

(the gul) but let's work to find some solutions; I am sure we can all

help you with ideas, and with trying some, we can get you some things

that WORK!!!

>

> Ruthie Dolezal

>

>

> @...: carrigg8582@...: Wed, 20 Feb 2008 01:01:04

+0000Subject: ( ) new to the group and I have a question

>

>

>

>

> Hi I'm new to the group I am the mom of a three year old little

boywho has asperger's, Sensory Integration Disorder, ADHD,

andMastocyctosis. We recently found out about the first three and

whenNickolas was about two we found out that he had mastocyctosis. We

seeOT once a week for the sensory issues but this whole thing has

beenextremly overwhelming for all of us. We were wondering if

anyoneelse's little one was a danger to themselves, my son though

sweet ashe is can not be left alone by himself because he is walking

intothings getting knives jumping off of the fridge for example, we

gotrid of my six year old's bunk beds becasue Nickolas would jump off

ofthere. Our house is only 2500 SQFT and we are in the process

oftrying to fight to get out of our lease and in to a much smaller

house1400 or less so it will be easier to live with him and we can

seeaccross the house easier. Is this normal? Our pschologist says yes

butit doesn't feel like it would be. Any advice would be appreciated

thanks!

>

[Guest guest]

You may want to try structuring and organizing your home space similar to how it would be at school. This link may provide some information to give you some ideas. If you have an Autism Project or local autism expert that you could consult with, they may be able to give you more specific advice. Pam

The National Autistic Society - Environment and surroundings: making them autism-friendlyDelicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Yes, I would also like to know that...how mastocytosis is diagnosed. There are parts of it that sound similar to people with lukemia (or, because my father in law is having diagnostic testing this morning to confirm lukemia (I have been researching that for a few minutes this morning) so how does one know, and like what are the differences?? Kind of sounds like a scary diagnosis. Is it life threatening, or just a 'diagnosis' of all these symptoms (a lot of them sound like some a lot of us experience with our children, actually), so just curious.....I have never heard of it, and am trying to. Thanks for any information.....Ruthie Dolezal

From: smacalli@...Date: Wed, 20 Feb 2008 07:22:22 -0800Subject: Re: ( ) new to the group and I have a question

How is mastocytosis diagnosed?

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

[Guest guest]

it is diagnosed using a test that checks for mast cells as well as t-cells,then is confirmed by bone marrow biopsy. Interesting that you would compare it to leukemia because all forms can (they don't all though) turn into leukemia. This is a life threatening disease because of that and the fact that it causes a severe allergic reaction called anaphaltic shock. This can set in at anytime day or night and is caused by cells in his system so you are not able to avoid it. like I said my son does not experience all at one time and there are two different types systemic and a skin form. My son has both. His symptoms are ever changing but he never experiences them all at one time. This is considered a rare disease about 1 in 250,000 people

have it so not a whole lot is known about treatment. He takes benedryl, claritin, and zrytec everyday and has an epi-pen for the severe reactions. ( ) new to the group and I have a question Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to

get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

Never miss a thing. Make your homepage.

[Guest guest]

Well, my father-in-law's white blood cell count is over 90,000, so I am sure they know it is leukemia for sure; he was in the hospital Tuesday-Wednesday, and goes back this morning for the results of all those tests, and then will have more tests run based upon those results; I doubt it will be anything OTHER than leukemia, as in my research thus far, leukemia is about all it can be with 90,000 count of WBC. So, guess we shall wait to hear the type today, and then life expectancy / if it is a cureable one OR NOT. My husband seems (and I really think he is) very, very calm and okay about it all; perhaps knowing what it is helps........we have had to wait and try to get answers before, so I am sure that a diagnosis from the get-go is helpful. His father reminds me of Abe Lincoln (kind of) by looks, and is a just a gem of a man (a lot like my husband, actually---just would do anything for anyone----his MOTHER is 92 and still living so I am sure she is going to be just devastated).........anyway, we are anxious to get results today, that is for sure, so we can know what we are all up against. Of course, we are moving this weekend, unless my father-in-law changes our plans (like my husband said)..........so, we shall see I guess. Take care, and we will keep you posted; thank you for sharing about the diagnosis your son has; that is very, very scary! Was he sick, or why were they testing and found it in the first place?? And, WHAT causes allergic reactions for him? Do you know so you can avoid that, or you never know then, or what? SCARY stuff.....I think we are all learning something new, as I am not sure any of us are familiar with it.......Ruthie

From: carrigg8582@...Date: Wed, 20 Feb 2008 09:32:25 -0800Subject: Re: ( ) new to the group and I have a question

it is diagnosed using a test that checks for mast cells as well as t-cells,then is confirmed by bone marrow biopsy. Interesting that you would compare it to leukemia because all forms can (they don't all though) turn into leukemia. This is a life threatening disease because of that and the fact that it causes a severe allergic reaction called anaphaltic shock. This can set in at anytime day or night and is caused by cells in his system so you are not able to avoid it. like I said my son does not experience all at one time and there are two different types systemic and a skin form. My son has both. His symptoms are ever changing but he never experiences them all at one time. This is considered a rare disease about 1 in 250,000 people have it so not a whole lot is known about treatment. He takes benedryl, claritin, and zrytec everyday and has an epi-pen for the severe reactions.

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

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[Guest guest]

Ruthie

You and Yours are in my thoughts and prayers !!!

hugs

with 3 aspies

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

Aspergers Treatment From: DOLEZAL123@...Date: Thu, 21 Feb 2008 09:05:26 -0600Subject: RE: ( ) new to the group and I have a question

Well, my father-in-law's white blood cell count is over 90,000, so I am sure they know it is leukemia for sure; he was in the hospital Tuesday-Wednesday, and goes back this morning for the results of all those tests, and then will have more tests run based upon those results; I doubt it will be anything OTHER than leukemia, as in my research thus far, leukemia is about all it can be with 90,000 count of WBC. So, guess we shall wait to hear the type today, and then life expectancy / if it is a cureable one OR NOT. My husband seems (and I really think he is) very, very calm and okay about it all; perhaps knowing what it is helps........we have had to wait and try to get answers before, so I am sure that a diagnosis from the get-go is helpful. His father reminds me of Abe Lincoln (kind of) by looks, and is a just a gem of a man (a lot like my husband, actually---just would do anything for anyone----his MOTHER is 92 and still living so I am sure she is going to be just devastated).........anyway, we are anxious to get results today, that is for sure, so we can know what we are all up against. Of course, we are moving this weekend, unless my father-in-law changes our plans (like my husband said)..........so, we shall see I guess. Take care, and we will keep you posted; thank you for sharing about the diagnosis your son has; that is very, very scary! Was he sick, or why were they testing and found it in the first place?? And, WHAT causes allergic reactions for him? Do you know so you can avoid that, or you never know then, or what? SCARY stuff.....I think we are all learning something new, as I am not sure any of us are familiar with it.......Ruthie

From: carrigg8582 Date: Wed, 20 Feb 2008 09:32:25 -0800Subject: Re: ( ) new to the group and I have a question

it is diagnosed using a test that checks for mast cells as well as t-cells,then is confirmed by bone marrow biopsy. Interesting that you would compare it to leukemia because all forms can (they don't all though) turn into leukemia. This is a life threatening disease because of that and the fact that it causes a severe allergic reaction called anaphaltic shock. This can set in at anytime day or night and is caused by cells in his system so you are not able to avoid it. like I said my son does not experience all at one time and there are two different types systemic and a skin form. My son has both. His symptoms are ever changing but he never experiences them all at one time. This is considered a rare disease about 1 in 250,000 people have it so not a whole lot is known about treatment. He takes benedryl, claritin, and zrytec everyday and has an epi-pen for the severe reactions.

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

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[Guest guest]

Yes, we have had three boys and all are daredevil types. The oldest (hfa, dyslexia) was once caught climbing a ladder to get on the roof of a house. I caught him jumping off the fridge when he was just 2 or 3 yo. Worse, once we caught him trying to hide IN the fridge. ugh. It was always something!! We just had to watch him like a hawk. Remove whatever dangers we could.

The second (hfa, hyperlexia, gifted) was more of a wanderer. He liked to just take off. We found him once in a house being built a few houses down. We had to start putting bells on the doors along with the locks so he couldn't wander out. He didn't like to wear clothes either. And he liked to get in people's cars a lot. His favorite trick was to run out the door whenever the mail lady came. I'd answer the door, he'd rush out while I had to sign for something. He'd be in her truck. She learned to lock it when she had to stop here. For years - up until 5th grade, we made sure someone was with him when he went on field trips because he tends still to just walk off and not think about where we are. We didn't take a vacation until a few years ago because he was like this! Oh yeah, I forgot about having to lock the windows with screws. He likes to wander out on the roof too.

The third (dyslexic) is the worst daredevil of them all. He jumps off anything, climbs everything, always has scratches and bruises. lol. But it isn't as bad because you can tell him to stop. And he tends to recognize danger - kind of handy that skill! lol.

But yes. It is not uncommon. Just do your best, lock everything up, keep tabs on him constantly. I know it is not easy and it is very stressful.

RoxannaAutism Happens

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

[Guest guest]

Ruthie, I am so sorry to hear about your fil. I hope for good news for you all.

RoxannaAutism Happens

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

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[Guest guest]

Thanks, Roxanna....we would have hated for our move in to our dream home to have belonged to just 'us' without something else.....fil is having bone marrow drawn on Monday; we will get more answers then (I am assuming the 'type' of lukemia).....he was supposed to get more answers today but did not, so we shall wait......Ruthie

From: madideas@...Date: Thu, 21 Feb 2008 20:39:53 -0500Subject: Re: ( ) new to the group and I have a question

Ruthie, I am so sorry to hear about your fil. I hope for good news for you all.

RoxannaAutism Happens

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

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[Guest guest]

I'm sorry to hear about your FIL, Ruthie.... my best friend had

leukemia and was succesfully treated, but it is a long hard row

to hoe, that's for sure. I'll be hoping it's one of the more treatable

versions.

Willa

[Guest guest]

LOL, of course you just can't do something "NORMAL" and without issues to deal with. How dare you suggest that!

I do hope they can come up with answers. It has to be tough.

RoxannaAutism Happens

( ) new to the group and I have a question

Hi I'm new to the group I am the mom of a three year old little boywho has asperger's, Sensory Integration Disorder, ADHD, andMastocyctosis. We recently found out about the first three and whenNickolas was about two we found out that he had mastocyctosis. We seeOT once a week for the sensory issues but this whole thing has beenextremly overwhelming for all of us. We were wondering if anyoneelse's little one was a danger to themselves, my son though sweet ashe is can not be left alone by himself because he is walking intothings getting knives jumping off of the fridge for example, we gotrid of my six year old's bunk beds becasue Nickolas would jump off ofthere. Our house is only 2500 SQFT and we are in the process oftrying to fight to get out of our lease and in to a much smaller house1400 or less so it will be easier to live with him and we can seeaccross the house easier. Is this normal? Our pschologist says yes butit doesn't feel like it would be. Any advice would be appreciated thanks!

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