Introduction and Help with Medical Diagnoses

[Guest guest]

Hi,

 

My name is Jennifer. I am new to this group. I look forward to getting

to know everyone a bit better. If it's okay, I would like to present my

son's medical case. He's always been a " mystery. "

 

My biggest question is about his daily medicine. If the group helps out

in this way and is interested, please let me know and I will start with

the basics. Thanks!

 

Jennifer

[Guest guest]

I would be interested in hearing about your son , I have worked in the

alternative health field for 17 years.

 

 

Cindy

 

 

 

 

 

 

 

 

 

 

purityandbalance <purityandbalance

 

Thursday, October 23, 2008 5:13:33 PM

Introduction and Help with Medical Diagnoses

 

 

Hi,

 

My name is Jennifer. I am new to this group. I look forward to getting

to know everyone a bit better. If it's okay, I would like to present my

son's medical case. He's always been a " mystery. "

 

My biggest question is about his daily medicine. If the group helps out

in this way and is interested, please let me know and I will start with

the basics. Thanks!

 

Jennifer

 

 

 

 

[Guest guest]

Hi,

 

Okay, below is a summary of my son's health history. I appreciate any feedback!

 

I was perfectly healthy and fit during my pregnancy until the end of my 8th

month. I began getting low back pain and less fetal movement. When I was hooked

on a monitor, there was only 1 movement within several hours time. An ultrasound

proved that there was excess fluid in my son's belly. At this point, 1 month

early, I had induced labor. I was lucky to avoid c-section because my son was

lacking oxygen.

 

When my son was born, his belly was extremely large and he was anemic. We

discovered he has an enlarged liver, spleen, and heart. He was needing blood

transfusions every few days. He continued to undergo every test imaginable

between two top hospitals, as he frequently received more blood transfusions. He

ended up with hernia repair (groin) and an open-liver biopsy at 1 month old. The

anemia caused my son's teeth to grow out black, despite my home cooking:

steaming/puree/jarring every Sunday for the weeks meals. After nearly a year of

no one wanting to help my son because of liability reasons, I stood there in a

hospital until someone said they'd schedule surgery to remove his teeth that had

left him with several months of abcesses (chipmunk cheeks). All upper and four

lower teeth were removed at age 4.

 

By age 5, my son's spleen had grown so large (bigger than a football!!!!), it

was the decision to risk it rupturing (always was a risk) or risk the surgery to

remove the large organ, plus an accessory spleen which was larger than a normal

accessory.

 

We decided to go for the surgery. He made it through surgery. They inserted two

metal springs into the artery? to the spleen to avoid excessive bleeding and

then they removed the organs. By the time I got to go in and see my son, he

opened his eyes, smiled and waved at me and then stopped breathing. He ended up

on a ventilator for 10 days. Once he was off that, within days, he had a

seizure. We found out he had a blood clot in the right frontal lobe. You

should've seen the lines of drugs going into his little body. Every part of his

arms, legs and groin were used up!

 

Three weeks later, we returned home. (33 blood transfusions since birthFollowing

surgery, my son is on Penicillin VK. 250 mg/twice daily. I am told that he needs

to remain on this. Some drs. tell me at least until he's 18-21 others say for

life! I DISLIKE DRUGS!!!

 

I must also mention that following his surgery, within 7 months, he began

getting all-over body hives that looked like third degree burns! I was so

panicked the first time I saw him like that. It seems whenever he would be in

close contact with someone who must've been carrying a virus unknown to them,

he'd break out. I've tried him at a local hotel pool for therapy and he would

break out in the pool. His Hematologist says it's a symptom of the ALPS

condition. BUT, he also started getting them after we moved to a new apartment

which happened to be across the river from a coal plant. Uh, huh. Once we moved

from there to the mountains, he's only had a few and very mild!

 

My son's behavior has not been the same since he's been on this stuff. I've been

searching for an alternative for Penicillin of this kind. I guess I have am

scared to a certain extent to wean him off, since he catches viruses/colds so

easily.

 

The primary diagnoses given was ALPS (autoimmune lymphoproliferative syndrome)

which is an extremely rare and incurable autoimmune disorder. Since this

diagnosis, he has been diagnosed with Alopecia Areata (his immune system

mistakenly attacks his hair follicles, causing balding), 19 food allergies,

dog/weed mix/tree allergies, rhinitis, sleep disorder, anxiety, ADHD.

 

He's at an age where he is craving more in his life. It's been extremely

difficult to even get him to play with another child because he is so prone to

illness. He has pen pals and talks to his cousins on the phone. It's still not

the same. I am trying to find alternatives to help him along. Most importantly,

get him off that Penicillin! He has also been on Cetirizine, 10 mg/1x day. If I

take him off that, he is so stuffy, he cannot breathe! He's always had nasal

problems. An herbalist friend of mine says she thinks my son's sleep disorder is

due to the meds. I don't doubt it!

 

My son used to take a couple heart meds and seizure med. His liver is back to

normal size and his heart has just one valve that is still enlarged - no longer

requires visits to a cardiologist!

 

We live in the mountains of NH so we are surrounded by nature! I make sure my

son gets outside every day to enjoy a few hours of the fresh, crisp air. My son

is exempt from immunizations - did have the first several and the major ones

they say are " needed " for the splenectomy. I also do not send him for the flu

vaccination. He gets more sick when he's had them in the past.

 

I do juicing. My son likes carrots with fresh garlic/ginger and greens. I

make raw salads weekly. I am still battling with cutting down sugar. He really

doesn't get very much, but I still want it less. I've used Xylitol and Stevia or

maple syrup for replacements. With his food allergies it's quite hard to even

bake something because eggs and milk are two big allergens.

 

Well, I think I've covered the most of what's gone on. Thanks again for any

input in my son's case. I appreciate it!

 

Jennifer - http://www.purityandbalance.com

http://www.holyteaclub.com/purebalance

http://www.everyonebenefits.com/JennPerry

 

 

 

--- On Fri, 10/24/08, C indy <cwac wrote:

 

C indy <cwac

Re: Introduction and Help with Medical Diagnoses

 

Friday, October 24, 2008, 8:05 AM

 

 

 

 

 

 

I would be interested in hearing about your son , I have worked in the

alternative health field for 17 years.

 

 

Cindy

 

 

 

 

 

 

 

purityandbalance <purityandbalance@ >

 

Thursday, October 23, 2008 5:13:33 PM

Introduction and Help with Medical Diagnoses

 

Hi,

 

My name is Jennifer. I am new to this group. I look forward to getting

to know everyone a bit better. If it's okay, I would like to present my

son's medical case. He's always been a " mystery. "

 

My biggest question is about his daily medicine. If the group helps out

in this way and is interested, please let me know and I will start with

the basics. Thanks!

 

Jennifer

 

 

[Guest guest]

, " purityandbalance "

<purityandbalance wrote:

>

> Hi,

>

> My name is Jennifer. I am new to this group. I look forward to getting

> to know everyone a bit better. If it's okay, I would like to present

my

> son's medical case. He's always been a " mystery. "

>

> My biggest question is about his daily medicine. If the group helps

out

> in this way and is interested, please let me know and I will start

with

> the basics. Thanks!

>

> Jennifer

>

Welcome Jennifer,

 

Pleas submit your son's case for communal brainstorming, but always

keep in mind that we are mainly a bunch of lay people with an interest

in natural health. Most of us are NOT doctors!

Fortunately the principles of building health are relatively simple,

even if disease can get complicated. Ask away!

 

Ien in the Kootenays

http://freegreenliving.com

http://wildwholefoods.net

[Guest guest]

Jennifer,

 

Blessings to you and yours! I cannot even begin to imagine the stress you

are coping with daily. Your strength is amazing and you are certainly to be

commended. I am sending a protective bubble of healing Reiki to fill you

and your son for the highest good of all. This Reiki is set to remain

indefinitely and to regenerate for your highest good as necessary. It has

been asked and is so.

 

Although I am gaining holistic knowledge on a daily basis, I would not dare

to attempt making suggestions, with one exception. Please look into using

raw honey as a sweetener for your son. There are so many wonderful healing

properties in raw honey, you would be amazed. Kimmy recently posted an

article by Kelly Joyce Neff describing the benefits. You will be able to

locate it in the message section of the home page. I use Really Raw Honey

from Baltimore, Maryland, which still contains the pollen, propolis,

honeycomb and live enzymes. It's also pesticide free, a huge plus.

http://www.reallyrawhoney.com/

 

Namaste`

Cynthia

[Guest guest]

My ideas (in no particular order):

 

An MD who is a member of ACAM. See http://www.acam.org for members near you.

 

Homeopathy

 

Energy medicine. See books by Donna Eden and http://www.innersource.net.

 

Blood Type Diet and/or Genotype Diet. See books by Peter D'Adamo,

http://www.dadamo.com, and http://www.genotypediet.com.

 

Any of those (and other natural approaches) can work wonders where conventional

medicine can do nothing.

 

Working with nature/spirit nothing is incurable!

 

Linda

 

 

 

 

 

 

________________________________

" Deyab Electric, LLC " <purityandbalance

 

Friday, October 24, 2008 8:36:25 AM

Re: Introduction and Help with Medical Diagnoses

 

 

Hi,

 

Okay, below is a summary of my son's health history. I appreciate any feedback!

 

I was perfectly healthy and fit during my pregnancy until the end of my 8th

month. I began getting low back pain and less fetal movement. When I was hooked

on a monitor, there was only 1 movement within several hours time. An ultrasound

proved that there was excess fluid in my son's belly. At this point, 1 month

early, I had induced labor. I was lucky to avoid c-section because my son was

lacking oxygen.

 

When my son was born, his belly was extremely large and he was anemic. We

discovered he has an enlarged liver, spleen, and heart. He was needing blood

transfusions every few days. He continued to undergo every test imaginable

between two top hospitals, as he frequently received more blood transfusions. He

ended up with hernia repair (groin) and an open-liver biopsy at 1 month old. The

anemia caused my son's teeth to grow out black, despite my home cooking:

steaming/puree/ jarring every Sunday for the weeks meals. After nearly a year of

no one wanting to help my son because of liability reasons, I stood there in a

hospital until someone said they'd schedule surgery to remove his teeth that had

left him with several months of abcesses (chipmunk cheeks). All upper and four

lower teeth were removed at age 4.

 

By age 5, my son's spleen had grown so large (bigger than a football!!!! ), it

was the decision to risk it rupturing (always was a risk) or risk the surgery to

remove the large organ, plus an accessory spleen which was larger than a normal

accessory.

 

We decided to go for the surgery. He made it through surgery. They inserted two

metal springs into the artery? to the spleen to avoid excessive bleeding and

then they removed the organs. By the time I got to go in and see my son, he

opened his eyes, smiled and waved at me and then stopped breathing. He ended up

on a ventilator for 10 days. Once he was off that, within days, he had a

seizure. We found out he had a blood clot in the right frontal lobe. You

should've seen the lines of drugs going into his little body. Every part of his

arms, legs and groin were used up!

 

Three weeks later, we returned home. (33 blood transfusions since birthFollowing

surgery, my son is on Penicillin VK. 250 mg/twice daily. I am told that he needs

to remain on this. Some drs. tell me at least until he's 18-21 others say for

life! I DISLIKE DRUGS!!!

 

I must also mention that following his surgery, within 7 months, he began

getting all-over body hives that looked like third degree burns! I was so

panicked the first time I saw him like that. It seems whenever he would be in

close contact with someone who must've been carrying a virus unknown to them,

he'd break out. I've tried him at a local hotel pool for therapy and he would

break out in the pool. His Hematologist says it's a symptom of the ALPS

condition. BUT, he also started getting them after we moved to a new apartment

which happened to be across the river from a coal plant. Uh, huh. Once we moved

from there to the mountains, he's only had a few and very mild!

 

My son's behavior has not been the same since he's been on this stuff. I've been

searching for an alternative for Penicillin of this kind. I guess I have am

scared to a certain extent to wean him off, since he catches viruses/colds so

easily.

 

The primary diagnoses given was ALPS (autoimmune lymphoproliferative syndrome)

which is an extremely rare and incurable autoimmune disorder. Since this

diagnosis, he has been diagnosed with Alopecia Areata (his immune system

mistakenly attacks his hair follicles, causing balding), 19 food allergies,

dog/weed mix/tree allergies, rhinitis, sleep disorder, anxiety, ADHD.

 

He's at an age where he is craving more in his life. It's been extremely

difficult to even get him to play with another child because he is so prone to

illness. He has pen pals and talks to his cousins on the phone. It's still not

the same. I am trying to find alternatives to help him along. Most importantly,

get him off that Penicillin! He has also been on Cetirizine, 10 mg/1x day. If I

take him off that, he is so stuffy, he cannot breathe! He's always had nasal

problems. An herbalist friend of mine says she thinks my son's sleep disorder is

due to the meds. I don't doubt it!

 

My son used to take a couple heart meds and seizure med. His liver is back to

normal size and his heart has just one valve that is still enlarged - no longer

requires visits to a cardiologist!

 

We live in the mountains of NH so we are surrounded by nature! I make sure my

son gets outside every day to enjoy a few hours of the fresh, crisp air. My son

is exempt from immunizations - did have the first several and the major ones

they say are " needed " for the splenectomy. I also do not send him for the flu

vaccination. He gets more sick when he's had them in the past.

 

I do juicing. My son likes carrots with fresh garlic/ginger and greens. I

make raw salads weekly. I am still battling with cutting down sugar. He really

doesn't get very much, but I still want it less. I've used Xylitol and Stevia or

maple syrup for replacements. With his food allergies it's quite hard to even

bake something because eggs and milk are two big allergens.

 

Well, I think I've covered the most of what's gone on. Thanks again for any

input in my son's case. I appreciate it!

 

Jennifer - http://www.purityan dbalance. com

http://www.holyteac lub.com/purebala nce

http://www.everyone benefits. com/JennPerry

 

 

--- On Fri, 10/24/08, C indy <cwac (AT) sbcglobal (DOT) net> wrote:

 

C indy <cwac (AT) sbcglobal (DOT) net>

Re: Introduction and Help with Medical Diagnoses

 

Friday, October 24, 2008, 8:05 AM

 

I would be interested in hearing about your son , I have worked in the

alternative health field for 17 years.

 

 

Cindy

 

 

 

 

 

 

 

purityandbalance <purityandbalance@ >

 

Thursday, October 23, 2008 5:13:33 PM

Introduction and Help with Medical Diagnoses

 

Hi,

 

My name is Jennifer. I am new to this group. I look forward to getting

to know everyone a bit better. If it's okay, I would like to present my

son's medical case. He's always been a " mystery. "

 

My biggest question is about his daily medicine. If the group helps out

in this way and is interested, please let me know and I will start with

the basics. Thanks!

 

Jennifer

 

 

[Guest guest]

---hi jenifer

that is what this group is for

sharing info and much more

phill In , " purityandbalance "

<purityandbalance wrote:

>

> Hi,

>

> My name is Jennifer. I am new to this group. I look forward to getting

> to know everyone a bit better. If it's okay, I would like to present my

> son's medical case. He's always been a " mystery. "

>

> My biggest question is about his daily medicine. If the group helps out

> in this way and is interested, please let me know and I will start with

> the basics. Thanks!

>

> Jennifer

>

[Guest guest]

Please send me an address to mail you some information for your son's health - I

have several reference pieces that will help you understand that he can be

helped.  It is too much information for me to type here.

 

 Blessings,

Cindy

 

 

 

 

 

 

 

 

 

 

" Deyab Electric, LLC " <purityandbalance

 

Friday, October 24, 2008 10:36:25 AM

Re: Introduction and Help with Medical Diagnoses

 

 

Hi,

 

Okay, below is a summary of my son's health history. I appreciate any feedback!

 

I was perfectly healthy and fit during my pregnancy until the end of my 8th

month. I began getting low back pain and less fetal movement. When I was hooked

on a monitor, there was only 1 movement within several hours time. An ultrasound

proved that there was excess fluid in my son's belly. At this point, 1 month

early, I had induced labor. I was lucky to avoid c-section because my son was

lacking oxygen.

 

When my son was born, his belly was extremely large and he was anemic. We

discovered he has an enlarged liver, spleen, and heart. He was needing blood

transfusions every few days. He continued to undergo every test imaginable

between two top hospitals, as he frequently received more blood transfusions. He

ended up with hernia repair (groin) and an open-liver biopsy at 1 month old. The

anemia caused my son's teeth to grow out black, despite my home cooking:

steaming/puree/ jarring every Sunday for the weeks meals. After nearly a year of

no one wanting to help my son because of liability reasons, I stood there in a

hospital until someone said they'd schedule surgery to remove his teeth that had

left him with several months of abcesses (chipmunk cheeks). All upper and four

lower teeth were removed at age 4.

 

By age 5, my son's spleen had grown so large (bigger than a football!!!! ), it

was the decision to risk it rupturing (always was a risk) or risk the surgery to

remove the large organ, plus an accessory spleen which was larger than a normal

accessory.

 

We decided to go for the surgery. He made it through surgery. They inserted two

metal springs into the artery? to the spleen to avoid excessive bleeding and

then they removed the organs. By the time I got to go in and see my son, he

opened his eyes, smiled and waved at me and then stopped breathing. He ended up

on a ventilator for 10 days. Once he was off that, within days, he had a

seizure. We found out he had a blood clot in the right frontal lobe. You

should've seen the lines of drugs going into his little body. Every part of his

arms, legs and groin were used up!

 

Three weeks later, we returned home. (33 blood transfusions since birthFollowing

surgery, my son is on Penicillin VK. 250 mg/twice daily. I am told that he needs

to remain on this. Some drs. tell me at least until he's 18-21 others say for

life! I DISLIKE DRUGS!!!

 

I must also mention that following his surgery, within 7 months, he began

getting all-over body hives that looked like third degree burns! I was so

panicked the first time I saw him like that. It seems whenever he would be in

close contact with someone who must've been carrying a virus unknown to them,

he'd break out. I've tried him at a local hotel pool for therapy and he would

break out in the pool. His Hematologist says it's a symptom of the ALPS

condition. BUT, he also started getting them after we moved to a new apartment

which happened to be across the river from a coal plant. Uh, huh. Once we moved

from there to the mountains, he's only had a few and very mild!

 

My son's behavior has not been the same since he's been on this stuff. I've been

searching for an alternative for Penicillin of this kind. I guess I have am

scared to a certain extent to wean him off, since he catches viruses/colds so

easily.

 

The primary diagnoses given was ALPS (autoimmune lymphoproliferative syndrome)

which is an extremely rare and incurable autoimmune disorder. Since this

diagnosis, he has been diagnosed with Alopecia Areata (his immune system

mistakenly attacks his hair follicles, causing balding), 19 food allergies,

dog/weed mix/tree allergies, rhinitis, sleep disorder, anxiety, ADHD.

 

He's at an age where he is craving more in his life. It's been extremely

difficult to even get him to play with another child because he is so prone to

illness. He has pen pals and talks to his cousins on the phone. It's still not

the same. I am trying to find alternatives to help him along. Most importantly,

get him off that Penicillin! He has also been on Cetirizine, 10 mg/1x day. If I

take him off that, he is so stuffy, he cannot breathe! He's always had nasal

problems. An herbalist friend of mine says she thinks my son's sleep disorder is

due to the meds. I don't doubt it!

 

My son used to take a couple heart meds and seizure med. His liver is back to

normal size and his heart has just one valve that is still enlarged - no longer

requires visits to a cardiologist!

 

We live in the mountains of NH so we are surrounded by nature! I make sure my

son gets outside every day to enjoy a few hours of the fresh, crisp air. My son

is exempt from immunizations - did have the first several and the major ones

they say are " needed " for the splenectomy. I also do not send him for the flu

vaccination. He gets more sick when he's had them in the past.

 

I do juicing. My son likes carrots with fresh garlic/ginger and greens. I

make raw salads weekly. I am still battling with cutting down sugar. He really

doesn't get very much, but I still want it less. I've used Xylitol and Stevia or

maple syrup for replacements. With his food allergies it's quite hard to even

bake something because eggs and milk are two big allergens.

 

Well, I think I've covered the most of what's gone on. Thanks again for any

input in my son's case. I appreciate it!

 

Jennifer - http://www.purityan dbalance. com

http://www.holyteac lub.com/purebala nce

http://www.everyone benefits. com/JennPerry

 

 

--- On Fri, 10/24/08, C indy <cwac (AT) sbcglobal (DOT) net> wrote:

 

C indy <cwac (AT) sbcglobal (DOT) net>

Re: Introduction and Help with Medical Diagnoses

 

Friday, October 24, 2008, 8:05 AM

 

I would be interested in hearing about your son , I have worked in the

alternative health field for 17 years.

 

 

Cindy

 

 

 

 

 

 

 

purityandbalance <purityandbalance@ >

 

Thursday, October 23, 2008 5:13:33 PM

Introduction and Help with Medical Diagnoses

 

Hi,

 

My name is Jennifer. I am new to this group. I look forward to getting

to know everyone a bit better. If it's okay, I would like to present my

son's medical case. He's always been a " mystery. "

 

My biggest question is about his daily medicine. If the group helps out

in this way and is interested, please let me know and I will start with

the basics. Thanks!

 

Jennifer