New to group

[Guest guest]

Welcome,

My daughter will be 5 next month and had AML. She will be in remission now almost 2 1/2 years.

I never heard of this camp. Can you share more about it?

Pearson, mom to almost 5lynneha8 <lynneha8@...> wrote:

Hi,My daughter Margie is 22 and in remission with ALL. DX May 1998. Protocal POG9406. Anyone else here on this? Did anyone attend Camp Sunshine last Feb. for kids w/DS & cancer? We were there.Lynne

[Guest guest]

Welcome. My son is 4 with ALL, dx Oct 03, in LTM, to be OT in spring 07. Protocol 1961c, high risk. What is Camp Sunshine? I've never heard of it and am interested. Do they have a website?

Thanks. I hope Margie is doing well.

Beth

[ ] New to group

Hi,My daughter Margie is 22 and in remission with ALL. DX May 1998. Protocal POG9406. Anyone else here on this? Did anyone attend Camp Sunshine last Feb. for kids w/DS & cancer? We were there.Lynne

[Guest guest]

Connie,

My son, had AML last year. He finished treatment in June 2006. Not sure I can give you any information, but, I am here for support. Please contact me if you need an ear. You have a tough road ahead of you and you need the strength of friends (new and old) to hold you up during the times when you feel you can't hold yourself up. Thinking of you. Check out 's site below. You may want to start your own for your little guy. that way people can keep up with what is going on and post messages to your family by just checking his site. Let me know if you start one up. It is free.

DolezanSurvivor and Mommy of Prince and Lady Jenna's Web Site- www.caringbridge.org/visit/lindadolezan Get a sneak peek of the all-new AOL.com.

[Guest guest]

My son was diagnosed with high-risk preB ALL in Oct. 2003 and just went off treatment in March 2007. had a lot of neutropenia, transfusions, and complications, and was very sensitive to chemo. But he got through it and he's got new hair and energy, and we all have an even deeper gratitude for every day. My best advice is to take one day or even one moment at a time, and accept all the help you can get!

Beth, mom to , age 7, diagnosed 10-29-03 with highrisk preB ALL, treated according to protocol 1961c, off treatment March 9, 2007!www.caringbridge.org/in/kylefacts

[Guest guest]

Hi Connie,I hope that is feeling better today. My son Tristan was diagnosed with pre B ALL in February of 1998 shortly after his 4th birthday. Treatment was hard for him (he was on POG 9605) and had lots of side effects. He completed treatment in October of 2000 and is almost 7 years off treatment!!! He is now 13 and doing well despite some struggles with long term damage from his leukemia treatment. He has actually been really healthy until this week when he was diagnosed with Graves disease (hyperthyroidism). How long is 's treatment - I know treatment for ALL is long but you will get there - there is light at the end of the tunnel. The beginning is really hard but it does get better (I remember a parent telling me this and I didn't believe them but it was true!) I'm glad this group is here for parents - especially those with newly diagnosed children.with Blessings,Thirza, Mum to Tristan 13 (DS, dx ALL 2-98) Abigail 6, Ella 3 and 10 monthsOn Aug 14, 2007, at 6:35 PM, Connie Gliott wrote:Hi everyone,I have a son with ds who was just diagnosed with leukemia.  His name is and he will be five in September.  I was hoping to talk to some other parents who are going through the same thing.  We live in Loveland, Co  and we have spent the last 5 days at Children's Hospital in Denver.  He has ALL Leukemia. They started him on chemotherapy immediately and will be going home tomorrow for out patient treatment.  I would love to hear other stories of other children.  Thanks. Connie Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Hi and welcome,My daughter (8 years) started with MDS which developed into AML by the time she was 2. Happy to announce that is now 6 years cancer free! YippeeThe treatment for AML does take about 6 months. Every child responds differently. overall did very well receiving the chemo itself. No major complications there except trying to keep her from pulling her lines out---she is such a stinker!After treatment we would be discharged and then have to go for blood work a few times a week to monitor her blood counts. When her White Blood Cells (WBC) would drop we would be extremely careful not to have anyone sick around her. Wash hand, wash hand, wash hands.If she developed a fever, then we would end up back in the hospital for IV antibiotics. I think this occurred about 3 times. These hospital stays are what I dreaded the most. Since they are unplanned trips, we would

always keep bags packed with our essentials because the hospital we used was 1 hour away. Also when her hemoglobin would drop she would get blood transfusions (out paitient). Overall, spent more time out of the hospital than in, so we were very fortunate. Something we did that I found helpful was that we arranged for all her therapists to come to the house first thing in the morning before they went to other kids houses. If they could, they used our toys and tried to bring minimal stuff into the house. One more tip, have the hospital social worker get you connected with your local chapter of Leukemia and Lymphoma Society. They have some resources to help pay for gas and tolls for travel (and maybe more stuff...it has been awhile). Here is the main website:http://www.leukemia-lymphoma.org/hm_llsGood

luckspjpaulson_sfsu <jpaulson@...> wrote: Hi, My son Zachary (12 mos) has been diagnosed with RAEB, a precondition of AML leukemia. He is scheduled to start chemo in 2 weeks. They expect him to be in the hospital for at least 6-7 mos., with a few days home between cycles of treatments. I would love to hear from others who have been down this path, and especially hear about how the first days in the hospital went for you. Thanks--

[Guest guest]

HI...and welcome

We use Trienza with much success...my 6 yr old son has traits of ppd-nos...and

has done great...my 4 yr old nt son was a late talker...and too is doing great.

When/should you start enzymes, be prepared for some behaviors that should

subside within a couple of weeks (ie. stimming, hyperactivity etc.). Start low

and slow (break the capsule apart and use about 1/4 to start and work your way

up to the recommended 2 pill dose.)

Good Luck! You've come to the right place everyone is great.

Carla

New to group

Hi everyone,

I have just joined and thought I would introduce myself and the reason for

joining. My name is and I have two adorable little boys aged almost 5yrs &

2.5yrs, my oldest son is the reason I'm here. We have spent the last 3 years

trying to help him in every which way possible. The Paed told us just after he

turned two that he was 95% sure he would be making a diagnosis of autism but

wanted to wait another six months to see how he progressed. In that time I

implemented the " failsafe " diet and by the time we went back he had made huge

improvements and even shook the Paed's hand and said hello. This particular Paed

was a non believer in diets making a difference (especially with autism) and was

quite amazed at the difference and proceeded to tell us he was no longer

confident in making a diagnosis. We saw one other paed also not very helpful and

hence started our journey into Biomed treatments.

We sought the advice of a dietitian who hadn't come across a child as

sensitive as him before. At age 3 we removed gluten & casein and unfortunately

in the process of us removing more and more from his diet he has become super

sensitive and intolerant to everything but beef, lamb, chicken, potato, rice,

canola oil & sugar. He breaks out in hives from things the doctors and

specialists have never come across before and finally at the start of the year I

convinced our allergist to write me a script for a hypoallergenic formula called

Elecare as I have been so desperately worried about his nutrition. He made some

improvements in speech, concentration & the hyperactivity lessened once he

started on the formula - but we are far from there yet. We are having Biomed

treatments but still need help with the diet & food intolerances/sensitivies.

The last three years I've lived my life in the kitchen, cooking preparing and

often throwing out things he won't eat. Driving from one store to the next for

ingredients he can tolerate, encouraging every single meal time to get him to

eat a mouthful. Many nights researching to find something that may help,

trawling through recipes and trying to create my own out of what very limited

ingredients he can tolerate is almost impossible. I'm tired beyond belief this

journey has certainly taken a lot out of me, but like so many I will do anything

I have to for my kids and certainly won't stop until I get there.

To cut this short (I'd be here for hours otherwise) I met a lady who's son's

symptoms are very similar to mine and she mentioned she tried digestive enzymes

and was having great success. I have been again researching and feel there is a

ray of hope that in time he may be able to start eating normally and we can have

a life!

So far I'm looking at Houston Trienza and another one was called DigestGold

(enzymedica), I have a lot more of research to do I'm sure and would love any

input/advice.

Look forward to reading the posts and learning more.

QLD, Australia

Win a MacBook Air or iPod touch with 7.

http://au.docs./homepageset<http://au.docs./homepageset>

[Guest guest]

Hi, .

I'm new too. Just wanted to say HI! Your story is very similar to

mine...my son is almost 3 and has many of the same issues. We just

started TriEnza a couple of weeks ago and are still not on full doses

yet (having trouble administering them with lunch at school.) So,

the only input I have right now is to say start slow. We are just

doing them with foods he already had in his diet and he is still

having some " withdrawl symptoms " (probably from the little soy left

in his diet.) We started on 1/2 dose one meal per day for a few

days, then 1/2 dose for two meals...and so on...as per Houston's

recommendations.

Hope you find success (hope we find it too!) Good luck to you!

>

> Hi everyone,

>

> I have just joined and thought I would introduce myself and the

reason for joining. My name is and I have two adorable little

boys aged almost 5yrs & 2.5yrs, my oldest son is the reason I'm here.

We have spent the last 3 years trying to help him in every which way

possible. The Paed told us just after he turned two that he was 95%

sure he would be making a diagnosis of autism but wanted to wait

another six months to see how he progressed. In that time I

implemented the " failsafe " diet and by the time we went back he had

made huge improvements and even shook the Paed's hand and said hello.

This particular Paed was a non believer in diets making a difference

(especially with autism) and was quite amazed at the difference and

proceeded to tell us he was no longer confident in making a

diagnosis. We saw one other paed also not very helpful and hence

started our journey into Biomed treatments.

>

> We sought the advice of a dietitian who hadn't come across a

child as sensitive as him before. At age 3 we removed gluten & casein

and unfortunately in the process of us removing more and more from

his diet he has become super sensitive and intolerant to everything

but beef, lamb, chicken, potato, rice, canola oil & sugar. He breaks

out in hives from things the doctors and specialists have never come

across before and finally at the start of the year I convinced our

allergist to write me a script for a hypoallergenic formula called

Elecare as I have been so desperately worried about his nutrition. He

made some improvements in speech, concentration & the hyperactivity

lessened once he started on the formula - but we are far from there

yet. We are having Biomed treatments but still need help with the

diet & food intolerances/sensitivies.

>

> The last three years I've lived my life in the kitchen, cooking

preparing and often throwing out things he won't eat. Driving from

one store to the next for ingredients he can tolerate, encouraging

every single meal time to get him to eat a mouthful. Many nights

researching to find something that may help, trawling through recipes

and trying to create my own out of what very limited ingredients he

can tolerate is almost impossible. I'm tired beyond belief this

journey has certainly taken a lot out of me, but like so many I will

do anything I have to for my kids and certainly won't stop until I

get there.

>

> To cut this short (I'd be here for hours otherwise) I met a lady

who's son's symptoms are very similar to mine and she mentioned she

tried digestive enzymes and was having great success. I have been

again researching and feel there is a ray of hope that in time he may

be able to start eating normally and we can have a life!

>

> So far I'm looking at Houston Trienza and another one was called

DigestGold (enzymedica), I have a lot more of research to do I'm sure

and would love any input/advice.

> Look forward to reading the posts and learning more.

>

>

> QLD, Australia

>

> Win a MacBook Air or iPod touch with 7.

http://au.docs./homepageset<http://au.docs./homepage

set>

>

>

[Guest guest]

Patty....it is okay...and your son is okay...he is the child you have always loved and will continue to love and nurture....God gave him to you exactly as he is...he is Perfect in all ways....so now that you know...go forward and learn as much as you can about AS and be your son's advocator....there is a reason God gave him to you....and believe me...I think most of have been in your shoes...it is okay.

jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: Patty <sheridonsmom@...>Subject: ( ) New to group Date: Sunday, August 30, 2009, 9:52 PM

Hi everyone,I guess it's time for me to get out of the denial stage and start looking for solutions or at least coping mechanisms. Our son, Blaise, who is five hPatty and I have Sheridon 7 RTS and Blaise 5 SPITFIRE

[Guest guest]

Oh yeah....sadly.

We used to call the school and tell them that we couldn't bring Ian in when he was "in this state". Once he calmed down, I'd bring him in. We did this until we decided to do virtual school and yank him out for 6th and 7th.

Anyway, my advice to you would be to try to form as good as relationship as you can with the school so that when you have to call or whatever, they understand. Also,,,,don't make him do things when hes' truly struggling and sad and refusing. From my standpoint, it was torture when my son was going.....he was devastated when he went to school.

I wish I had stopped having him go much earlier than I had.....but he is good now and asked to go "back to school" for 8th.

Just stand by him........don't be pushed or bullied into making him go. I remember the teachers telling me that I should bring him in and they'd take care of him. I did.......and a few times, I'd go back in to check on him. I'd walk by his room and see him with his head scrunched up in his shoulders and a scowl on his face. He looked horrible...and angry........ick................

So, I rambled,,,,,I'm sorry. But, just do what your heart tells you!!!

Good luck.

Dream as if you'll live forever,

Live as if you'll die today.

Robin

From: mateli0300 <mateli0300@...>Subject: ( ) New to group Date: Wednesday, May 26, 2010, 10:52 PM

Hi My son is 9(10 in july)he was just diagnosed with aspergers. We have had problems with getting him to go to school since kindergarten. I was wondering if anyone else has had problems with attendance. Looking for any advice anyone has.

[Guest guest]

welcome to the group,

From: jthorn19@...Date: Thu, 27 May 2010 11:46:26 -0400Subject: ( ) New to group

Dear Ms Pinckney:

This may be a strech to say that my brother who is undiagnosed Aspe. since I am an Aspe. He left school in Elementary Grades and ended up home.

I do not know if this helps. I guess the take a wayis, He needs to learn how to deal with frustration. He has problems now and so do I.

T.

The New Busy is not the old busy. Search, chat and e-mail from your inbox. Get started.

[Guest guest]

We have tried to have a good relationship with the school. My son has good days and bad ones. On a bad day he will have a tantrum if you push him to hard to go to school. His pediatrician told us dont push him so we didnt. The school has turned us in to police department for truancy (cant miss more than 10 days a school year) which has ben ugly and stressful. We have tried to give them proof when he has doctors appointments but they will not except them. The Principal refuses to meet with us and has told me that it doesnt matter what the doctor says it is the law that he comes to school and nothing can change that. Sorry to rant but this year has been a total nightmare for our family. My husband and I both work so we are unable to home school. Not sure what to do at this point

[Guest guest]

Extra time is not helpful if all it does it prolong the anxiety. You can have a sped teacher help him chunk the assignment into manageable pieces if that is the problem. You can have a sped teacher help him use a graphic organizer to start his assignment if he can't organize his thoughts on paper. If he has trouble physically writing, get keyboarding added as an accommodation or a scribe.

Expressing ones feelings or opinions can be really hard for some of our kids. He might need the sped teacher to help him think these kinds of assignments out out loud before doing them. My ds's all had to do written work with a sped teacher so they always had extra help organizing and dealing with their various needs. Also, getting involved with social skills groups like you mentioned is great.

My ds(14 yo, HFA, gifted) was taking an achievement test yesterday online and he had to read something and then pick the right answer. I heard him start yelling at the computer, "What does that mean? If I knew a woman wrote this piece, how would that change my opinion? It wouldn't change my opinion one bit! Who wrote this?" and on and on he went on a little rant. lol. Obviously there was a point he was missing and he got so hung up on the "discrimination" aspect that he couldn't see another option to the question. He often sees things that way and misses the point. So when we work at school stuff (he e-schools) I often have to point out the main point to what is being discussed. (He told me I'm rather good at finding the main point, lol) He has a really hard time figuring it out. If he were at school, as he has been in the past, he had about one hour per day of 1-1 tutoring with the sped teacher for just these occasions/problems. And she would have to help him sort it out and get the assignment done correctly. This is also a support provided via the IEP for him for his writing issues. So think of what he would need to be able to do the kinds of assignments causing him problems - then ask for those supports.

Roxanna

"I

predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson

( ) New to group

Date: Tuesday, January 11, 2011, 9:12 AM

Hi all! I am new to your group. I have a 10 year old son with Aspergers, OCD, Anxiety, sensory issues and soon to be determined possible Bipolar or ADHD. He is a great kid with a huge heart. He is in 4th grade and does fairly well at school with the exception of writing assignments and anything where he needs to give an opinion or express a feeling. Anyone have the same struggles with that? He also has a VERY hard time with his anger and frustration. His current method of coping with it is hitting. Usually himself, sometimes objects. We have tried many many many many coping skills with him, but his immediate reaction is the hitting. Any suggestions?? He also gets into these really low depressed times when he sobs and says how terrible his life is, etc. So heartbreaking to see him go through it! He see's a CBT weekly and social worker weekly at school with a small group. Another social skills class will start in a few weeks outside of school also.

Busy, busy, busy! We have many conversations (fights) with the school to try to get the services we know he needs. It's like pulling teeth! So frustrating.

[Guest guest]

My son is 11 and we have always known that there was something not quite right.

The Dr at our last physical said that he had always suspected that maybe

had a mild form of Asperger's. I wish he would have expressed that to us years

ago. My son does have a lot of difficulty in social situations and he does not

like to meet new people very often. We went to see my brother last week and I

was so embarrassed because my son was very cold and rude wich has been an

ongoing problem. He gets very angry and can be very harsh with his words. When

he was little sleeping was a huge problem. At the age of 1 he stopped napping

completely and would be up past 10pm and awake at sun up. He refuses to play any

type of group sport which really upsets his dad. He would not participate in

phys ed until about a year ago. We have him enrolled in a very small private

school of only about 10 kids because of his anxiety and easy frustration in

social situations involving many kids. We put him on Daytrana patch in second

grade which has helpled a lot in school. Medication of any kind for him is very

difficult because he has a phobia of swallowing pills. As he is getting older I

am noticing more phobias develop. He will no longer ride in an elevator and he

is washing his hands excessively. My husband and I have recently separated and I

need help to get control in the home. My son has never been formally tested and

when I was talking to someone about where would be the best place for help my

son overheard and became very upset. He says he will not go to a counselor or

talk to anyone. Has anyone ecxperienced these problems with your kids? Does this

sound like Aspergers? I am very frustrated and just don't know where to start.

Tami

[Guest guest]

Welcome to our group jacki! Feel free to join in whenever you like here. I'm glad you found us and I hope we can help be supportive for you!

Roxanna

“Our lives begin to end the day we

become silent about things that matter.†- Luther King, Jr.

( ) new to group

hi everyone

im so glad i found this group i so need it.

my son's school has diagnosed him with asperger's my son

is 9 yrs old.

im so glad we finally have a answer for our son

and help for us. this group will be such great help.

we can all help each other. my son twitches , fingers

move alot , clumbsy, motor skills delayed alot , was

interested in thomas then church songs now only clone

wars. i cry alot i wish i could help my son more. please

send support to me really would appreciate it alot . jacki

[Guest guest]

It sounds like high anxiety and OCD from what you have described. You should definitely get an evaluation so you can figure out what is going on and then you will know how to address it. Tell you ds you are looking for answers to help him for the evaluation. I mean, my ds had high anxiety that was out of control and we ended up using meds with really good success. So it isn't always talk therapy that helps. And maybe even getting answers and letting him know why he is doing what he's doing can help him understand himself as well.

Roxanna

“Our lives begin to end the day we

become silent about things that matter.†- Luther King, Jr.

( ) New to group

My son is 11 and we have always known that there was something not quite right. The Dr at our last physical said that he had always suspected that maybe had a mild form of Asperger's. I wish he would have expressed that to us years ago. My son does have a lot of difficulty in social situations and he does not like to meet new people very often. We went to see my brother last week and I was so embarrassed because my son was very cold and rude wich has been an ongoing problem. He gets very angry and can be very harsh with his words. When he was little sleeping was a huge problem. At the age of 1 he stopped napping completely and would be up past 10pm and awake at sun up. He refuses to play any type of group sport which really upsets his dad. He would not participate in phys ed until about a year ago. We have him enrolled in a very small private school of only about 10 kids because of his anxiety and easy frustration in social situations involving many kids. We p

ut him on Daytrana patch in second grade which has helpled a lot in school. Medication of any kind for him is very difficult because he has a phobia of swallowing pills. As he is getting older I am noticing more phobias develop. He will no longer ride in an elevator and he is washing his hands excessively. My husband and I have recently separated and I need help to get control in the home. My son has never been formally tested and when I was talking to someone about where would be the best place for help my son overheard and became very upset. He says he will not go to a counselor or talk to anyone. Has anyone ecxperienced these problems with your kids? Does this sound like Aspergers? I am very frustrated and just don't know where to start.

Tami