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Hi Jaxx and (((hugs))), I know you feel bad! I would just find a

calm time (or anytime he's in listening distance!) and tell him

you're very sorry. That's what I do, so you see you're not the only

one to have to apologize for saying something in a moment of

frustration/temper, etc. Just tell him how you feel, it'd built up

all week, etc. If you can find some special time to spend with him

(extra time or do something together, " special " just being not the

regular/daily thing), it might help him & you feel better. We're

both only human, not perfect, so toss away the " bad mum " award.

Actually around this group, a lot of us pass it around, LOL!

Let us know how things go!

>

> This morning, I lost the plot with my son, He is 10 years old and

has ADHD and OCD with a few other things.

>

> He is on Ritalin and the last week he has been pushing me to the

limit.... then this morning, I yelled at him and told him I never

wanted to see him again and not to come home. Please don't tell me I

am a bad mum, I know I shouldn't have said those things, I tried to

get him to stay in the car after I dropped his sister off so that we

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In a message dated 4/6/2006 5:38:58 PM Eastern Standard Time,

hippygal@... writes:

God what the neighbours must think....... anyway just needed to get it out

my system and what do other parents do when they lose the plot with their

child.

Jaxx -

I had to kind of shuffle my feet a little when I read this comment in your

email - about the neighbors. I think the same thing all the time because my

daughter's bathroom is in the back of the house & I have to be in there for

her entire shower to help - the bathroom gets very hot & steamy, so I keep the

window open.... what do you think my neighbors suppose is going on when they

hear my 'elevated voice' every, single night coming from that window.... " ok

now move, move MOVE MOVE... COME ON... YOU CAN DO THIS... stop that... that's

too much STOP SCRUBBING THAT... " (ha... almost makes me laugh -- what it

must sound like)

I agree with Chris' advice. Sit your son down & just apologize for your

outburst. I do it all the time with my dd. I just tell her that I am also

having a hard time with the OCD thing & it's something that I also have to

learn

to deal with properly and I also get very frustrated because I don't know what

to do.... she's generally very accepting. If it's one good thing that can

come from this OCD with our kids, they will surely turn out to be VERY

understanding people of others frustrations.

LT

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I taped a note up in the shower about how OCD is a

#@$@#*^ bully. IF you can get them to actually look

at the note it maybe helps. And maybe talk during

rational moments about why one shouldn't give in to

bullies.

--- jtlt@... wrote:

---------------------------------

In a message dated 4/6/2006 5:38:58 PM Eastern

Standard Time,

hippygal@... writes:

God what the neighbours must think....... anyway just

needed to get it out

my system and what do other parents do when they lose

the plot with their

child.

Jaxx -

I had to kind of shuffle my feet a little when I read

this comment in your

email - about the neighbors. I think the same thing

all the time because my

daughter's bathroom is in the back of the house & I

have to be in there for

her entire shower to help - the bathroom gets very hot

& steamy, so I keep the

window open.... what do you think my neighbors suppose

is going on when they

hear my 'elevated voice' every, single night coming

from that window.... " ok

now move, move MOVE MOVE... COME ON... YOU CAN DO

THIS... stop that... that's

too much STOP SCRUBBING THAT... " (ha... almost makes

me laugh -- what it

must sound like)

I agree with Chris' advice. Sit your son down & just

apologize for your

outburst. I do it all the time with my dd. I just

tell her that I am also

having a hard time with the OCD thing & it's something

that I also have to learn

to deal with properly and I also get very frustrated

because I don't know what

to do.... she's generally very accepting. If it's

one good thing that can

come from this OCD with our kids, they will surely

turn out to be VERY

understanding people of others frustrations.

LT

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Oh absolutely Jaxx! Just apologize profusely and let him know how badly you

feel. Moms make mistakes too. Everyone's patience wears out. He'll forgive

you.

Mo

Re: Help

Hi Jaxx and (((hugs))), I know you feel bad! I would just find a

calm time (or anytime he's in listening distance!) and tell him

you're very sorry. That's what I do, so you see you're not the only

one to have to apologize for saying something in a moment of

frustration/temper, etc. Just tell him how you feel, it'd built up

all week, etc. If you can find some special time to spend with him

(extra time or do something together, " special " just being not the

regular/daily thing), it might help him & you feel better. We're

both only human, not perfect, so toss away the " bad mum " award.

Actually around this group, a lot of us pass it around, LOL!

Let us know how things go!

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You are human and we make mistakes. I have been at my wits end too

and have said things like " just stop it " or " you had better get a hold

of yourself " . Apologize to your son. I think that it's ok for

children to see us make mistakes sometimes - how else will they know

it's ok if they make them? I tell my son that I am mad at his OCD and

not him, and that I don't blame him for it. I still feel guilty, but

my son seems to have been satisfied with my explanation. I try to

keep a cool head so that he can too, but it's hard. Unforunately, it

probably won't be the last time we say something inappropriate.

Best wishes

>

> This morning, I lost the plot with my son, He is 10 years old and

has ADHD and OCD with a few other things.

>

> He is on Ritalin and the last week he has been pushing me to the

limit.... then this morning, I yelled at him and told him I never

wanted to see him again and not to come home. Please don't tell me I

am a bad mum, I know I shouldn't have said those things, I tried to

get him to stay in the car after I dropped his sister off so that we

could talk, but he wouldn't. I will go to school to pick up him - so

that way I know he will come home. He is always talking about killing

himself, but they say at that age it is unlikely he will go though

with it, but I am still scared.

> He is on the waiting list for Adolescent and Mental Health team, and

they are going to make his appointment sooner rather than later. I

rung them this morning, Some days we have such a great day that I

hardly notice the issues, but other days it just goes to extremes.

Lately those days are getting worse.

>

> I feel like such a bad mum, and his twin sister is getting so upset

by all this as well. He is always annoying and touching and hurting

his sister, and I feel for her, as she gets such a hard time from him,

and does not deserve it. And with the OCD anything that is a " YUCK "

triggers of an outburst or he will vomit his food etc.....

>

> God what the neighbours must think....... anyway just needed to get

it out my system and what do other parents do when they lose the plot

with their child.

>

> Am feeling slightly better now and thanks for letting me ramble on.....

>

> Jaxx (New Zealand)

>

>

>

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I'm sure we have all said (or did) things to our OCD kids that we

regret. It is a very frustrating illness to deal with. Before my

daughter's diagnosis, I said many stupid and unhelpful things. Like,

" If you don't eat, I'll have to give you a drug to change your brain.

CHANGE YOUR BRAIN, did you hear that? Do you want a drug to change your

brain? Just eat!!! " And other such things. When she has an occasional

off night and starts with the " I'm going to vomit " talk, even though I

know what's happening, if she doesn't listen to my very helpful (cough

cough) suggestions, I will still get angry. For instance, she had a bad

episode 2 weeks ago and had a huge panic attack. It was evening and the

best thing she can do is go to sleep and then she's fine in the

morning. It started at about 6:00 and at 11:00 pm. she was still coming

in my room every minute telling me she was going to throw up. After the

100th time, I did get angry with her and tell her to listen to me and

stay in her bed and we would ALL go to sleep and feel better in the

morning. Since she's done it so many times (gone to sleep to feel

better), I was mad that it was still happening and she wasn't

listening. Of course, the next day when I reviewed our conversation, I

felt bad because I know she's not trying to do it on purpose. It's a

really tough thing to deal with on an ongoing daily basis. We ALL know

the feeling.

Dina

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Jaxx,

My husband and I have been in your shoes on more then one occassion. My son

picks on his sister non stop too. He has OCD, ADHD, and generalized anxiety

disorder. He says that he has to pick on his sister when he sees something that

he thinks is funny. My husband and I out of frustration have said things to

our son we don't mean too and later feel bad about it. It is just hard

dealing with it all the time. Don't feel bad about yourself. Give yourself a

break

and just sit your son down and tell him you feel frustrated. I am sure he

feels frustrated too. Just let him know you love him and that you are doing the

best you can. Our son has good days and bad days too. OCD affects everyone in

the family not just the child.

One day even my son's teacher lost her cool with him too and said something

she didn't mean. Well, she told me about it , and she felt bad. I told her

that we had all been there. I don't think you can explain to someone what it is

like to live with this day in and day out. All we can do is the best we can!

Sheree

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Just a thought from the possible view of the picked on

siblings:

My (5 year older) brother picked on me and everyone

else and basically had the whole family trying to keep

him from having tizzy fits throughout my childhood.

These days he probably would have been dx with

something. He's turned out to be an interesting,

oftentimes fair-minded, thoughtful person but

everybody still is careful not to piss him off with

just the littlest comment. I love him and respect him

and kind of hate him and definitely resent him for

probably effecting my development significantly. If

he could have been a supportive friend/brother my

personality would undoubtedly be different. I know he

was just a kid with his own obvious problems though

--so of course I have to try to forgive.

I'm also can't help being mad at my parents for

allowing him to rule the roost through his temper.

Only having one kid, however, I know it's alot harder

to deal with the sibling dynamics than I will ever

understand and I don't mean to create guilt. Just

don't forget to stand behind your good kids whose

problems aren't so obvious.

Lynn

--- Skbradfield@... wrote:

---------------------------------

Jaxx,

My husband and I have been in your shoes on more then

one occassion. My son

picks on his sister non stop too. He has OCD, ADHD,

and generalized anxiety

disorder. He says that he has to pick on his sister

when he sees something that

he thinks is funny. My husband and I out of

frustration have said things to

our son we don't mean too and later feel bad about

it. It is just hard

dealing with it all the time. Don't feel bad about

yourself. Give yourself a break

and just sit your son down and tell him you feel

frustrated. I am sure he

feels frustrated too. Just let him know you love him

and that you are doing the

best you can. Our son has good days and bad days too.

OCD affects everyone in

the family not just the child.

One day even my son's teacher lost her cool with him

too and said something

she didn't mean. Well, she told me about it , and she

felt bad. I told her

that we had all been there. I don't think you can

explain to someone what it is

like to live with this day in and day out. All we can

do is the best we can!

Sheree

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So sorry for this very hard day and Ethan's illness. I know I can

identify to the intensity.

I cannot offer any medical advice but am wondering if you see a DAN!

and if so, what they thought about the asthma and treatment. That

would be my first thought. Are you on any biomed lists as you mention

documented heavy metal toxicity? Antibiotics can flare up enormous

issues for our kids..and a tooth issue just adds to this all.

It is just so hard to deal with doctors , esp in subspecialty areas,

but esp when your child has a diagnosis of autism. They have so many

underlying issues that can cause the manifestation of these illnesses

yet the different doctors treating are usually unaware or ignorant to

the unique medical needs of our kids. Also, what made him mention

diabetes?

Prayers your way

>

> I am posting here because this is the one group I have had time to

> keep up with. If I am asking for help in the wrong place, I

> apologize, and hopefully one of you can point me in the right

> direction.

>

> I am at my wit's end. My six year old son, Ethan, has been sick for

> over three weeks now with respiratory problems. In addition, he is

> having a problem with a tooth they cannot fix due to the lung

> issues. He has been on many rounds of antibiotics and the other day

> he received a shot of rocephin. Does rocephin contain thimerosal?

> If so, I will be furious becasue I told the doctor he is not to get

> anything containing thimerosal.

>

> He has been on Zopanex and albuterol, and then a few days ago, this

> doctor put him on a liquid steroid, Prednisolone. I dreaded the

> steroid as the last time we had to give this our son regressed and

> really acted crazy. But he can't breathe well, nothing else was

> working, so what to do?

>

> Today, I took him to see a new doctor, a pediatric pulmonologist. I

> had to drive over sixty miles away to see but this doctor came

> highly recomended to me.

>

> I know or I guess I should have kept my mouth shut. They had told

> me to bring a copy of Ethan's medical exemption to vaccination. I

> also took his offical diagnosis of heavy metal intoxication. The

> doctor questioned me about both of these in a manner that made me

> uneasy.

>

> I told him I did not end on a good note with the neurologist becuase

> the neurologist basically told me that all doctors know that a

> percentage of kids will be lost due to mass vaccination, but they

> feel it is justified (I suppose so long as it isn't their child).

>

> Well, evidently, this doctor knows the neurologist and I felt a

> change in his demeanor toward me.

>

> While we were on the way up there, Ethan was very uncomfortable and

> I had to find a place for him to use the bathroom. I thought that

> was unusual because he went before we left home. It made me nervous

> becasue he has an irrational fear (and obsession) with bathrooms.

>

> We stopped at a Pharmacy and he wouldn't go in the bathroom. He

> freaked out and threw himself on the floor and had a tantrum that

> only parents of children with autism can understand. Somehow, I got

> him into the bathroom and I had to hold my hands over his ears

> really tight the whole time, and he went.

>

> Then at the docotr's he needed to go again but wouldn't go in their

> bathroom. He was so uncomfortable and he cried and carried on. I

> tried to pick him up and take him in there and he would go limp like

> a rag doll and then when I really picked up all 65 pounds of him he

> started hitting and kicking me.

>

> I finally manged to ge him into the bathroom and, God forgive me, I

> shut the door, and Ethan went berserk. He started screaming

> hysterically, " Mommy, no! No, Mommy! I have to get out of here! "

> The way he screamed and carried on, I'm sure they probably thoguht I

> was beating my child. Then of course, he peed all over himself and

> the floor. i manage to clean him up, change his clothes, and clean

> the floor all the while with him acting irrational and carrying on

> hysterically. And the whole time I was praying for God to give me

> even more patience when everybody tells me I all ready have the

> patience of Job.

>

> Once we got to the back he was calmer and alert and complied with

> the testing. The nurse said she had a hard time getting regular

> kids to do the spirometry correctly, but Ethan did it.

>

> Then the doctor came in and that is went I got interrogated about

> the diagnosis and the exemption.

>

> They gave us a plan that is only going to treat symptoms and

> explains nothing of what is causing this. He is to have two

> breathing treatments a day if he has no symptoms. We are to mix

> Pulmacort (an inhaled steroid) and Zopanex together.

>

> If he is having symptoms then he is to get four treatments a day.

> In addition, he is to be on two different prescription nose sprays

> and a clarinex tablet that dissolves.

>

> Thank God I had the presnece of mind to bring two extra changes of

> clothes. Ethan is potty trained and has not had ANY accidents until

> he started taking the liquid steroid by mouth. The way he acted

> about bathrooms today was reminiscent of life when this first all

> started; it was like being thrust back to the beginning and the

> anxiety for me was overwhelming. I felt like I was losing my child

> all over again.

>

> In addition, Ethan's heart rate was elevated even after he had

> calmed down. Ethan is tall for his age. He is over four feet tall

> and weighs about 65 pounds. This doctor tells me Ethan is obese!

> That just doesn't make sense to me.

> Then the doctor tells me that Ethan needs to be tested immediately

> becasue he thinks that he is pre-diabetic! We are going to his

> regular doctor in the morning for this.

>

> I don't know what to make of all these drugs they are putting him

> on. In light of the way he has acted says taking the oral steroid,

> I am concerned aobut the inhaled steroid. They want to re-do immune

> system testing.

>

> I had explained our story to this docotr and told him that Ethan got

> better once we instituted the DAN! protocol, and he said, " What's

> that? " Yet this is a doctor who supposedly treats many autistic

> children who have lung problems.

>

> I apologize for the long post, and I come to this group because I

> know you all understand what I went through today. I just want to

> help my son get better, but it seems now that the autism symptoms

> are worse. He has missed 54 of 108 school days this year, though we

> have always continued to teach him things at home.

>

> If any of you have any comments about the treatment plan or what I

> can do to figure this lung thing out. They won't say it is true

> asthma, but it is definitly chronic, recurring inflamations in the

> lungs. Ethan was rarely sick prior to his last round of thimerosal,

> but since he was fifteen months old, it has been one respiratory and

> gut problem after another, usually no more than one healthy week at

> a time before the next problem hits.

>

> Thanks for being there,

>

> Haven

> Mom to Ethan, age 6, ASD, OCD, SID

>

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Well, it sounds like your doctor is telling you your son has asthma and he wants to test his immune system and he wants him to be tested for diabetes. These diagnostic tests are probably blood tests. Even if your son has been tested for these things before his health could have changed since then. Have you considered getting allergy testing done? It's not uncommon for kids with allergies to have asthma like symptoms. My daughter (typically developing) really had a tough time about the same age as your son. She was allergic to the shampoo we were using (among other things). It was full of natural stuff like rosemar. The constant exposure to it kept her in a constant state or allergic reaction. When we eliminated it her health improved. Regarding asthma, if your child truly is asthmatic it is a very serious illness and should be treated as such. Regarding prednisone - when

taking this the person can't stop suddenly. You have to give it to him as prescribed. Think back to when he was on it before - was it given exactly as prescribed or were doses skipped, etc.? Inconsistencies in the dosages could account for behaviour problems because he could have been having headaches, etc. Regarding the dialog with the doctor about vaccines - I don't understand why this happened. Over the years I've taken my son with autism to many specialists and never once has there ever been a conversation about his vaccine record. Are you initiating this conversation with the doctors? I'm just trying to understand why a doctor other than your pediatrician is asking you about it, if anything it's a distraction away from the reason your son is actually at that doctor. Just curious, why did you stop the DAN! protocol?

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

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most asthma, especially in children, is a form of allergy.hostler cheri <cherielln@...> wrote: Well, it sounds like your doctor is telling you your son has asthma and he wants to test his immune system and he wants him to be tested for diabetes. These diagnostic tests are probably blood tests. Even if your son has been tested for these things before his health could have changed since then. Have you considered getting allergy testing done? It's not uncommon for kids with allergies to have asthma like symptoms. My daughter (typically developing) really had a tough time about the same age as your son. She was allergic to the shampoo we were using (among other things). It was full of natural stuff like rosemar. The constant exposure to it kept her in a constant state or

allergic reaction. When we eliminated it her health improved. Regarding asthma, if your child truly is asthmatic it is a very serious illness and should be treated as such. Regarding prednisone - when taking this the person can't stop suddenly. You have to give it to him as prescribed. Think back to when he was on it before - was it given exactly as prescribed or were doses skipped, etc.? Inconsistencies in the dosages could account for behaviour problems because he could have been having headaches, etc. Regarding the dialog with the doctor about vaccines - I don't understand why this happened. Over the years I've taken my son with autism to many specialists and never once has there ever been a conversation about his vaccine record. Are you initiating this conversation with the doctors? I'm just trying to understand why a doctor other than your pediatrician is asking you about it, if anything it's a distraction away from the reason your son is actually at that doctor. Just curious, why did you stop the DAN! protocol? Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

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Haven,

The Rocephin shot should not contain thimerosal, our DAN! doctor

suggested that as the antibiotic of choice instead of ingested

antibiotics. Best of luck with all the other issues.

God Bless

Steve

's Dad

>

> I am posting here because this is the one group I have had time to

> keep up with. If I am asking for help in the wrong place, I

> apologize, and hopefully one of you can point me in the right

> direction.

>

> I am at my wit's end. My six year old son, Ethan, has been sick for

> over three weeks now with respiratory problems. In addition, he is

> having a problem with a tooth they cannot fix due to the lung

> issues. He has been on many rounds of antibiotics and the other day

> he received a shot of rocephin. Does rocephin contain thimerosal?

> If so, I will be furious becasue I told the doctor he is not to get

> anything containing thimerosal.

>

> He has been on Zopanex and albuterol, and then a few days ago, this

> doctor put him on a liquid steroid, Prednisolone. I dreaded the

> steroid as the last time we had to give this our son regressed and

> really acted crazy. But he can't breathe well, nothing else was

> working, so what to do?

>

> Today, I took him to see a new doctor, a pediatric pulmonologist. I

> had to drive over sixty miles away to see but this doctor came

> highly recomended to me.

>

> I know or I guess I should have kept my mouth shut. They had told

> me to bring a copy of Ethan's medical exemption to vaccination. I

> also took his offical diagnosis of heavy metal intoxication. The

> doctor questioned me about both of these in a manner that made me

> uneasy.

>

> I told him I did not end on a good note with the neurologist becuase

> the neurologist basically told me that all doctors know that a

> percentage of kids will be lost due to mass vaccination, but they

> feel it is justified (I suppose so long as it isn't their child).

>

> Well, evidently, this doctor knows the neurologist and I felt a

> change in his demeanor toward me.

>

> While we were on the way up there, Ethan was very uncomfortable and

> I had to find a place for him to use the bathroom. I thought that

> was unusual because he went before we left home. It made me nervous

> becasue he has an irrational fear (and obsession) with bathrooms.

>

> We stopped at a Pharmacy and he wouldn't go in the bathroom. He

> freaked out and threw himself on the floor and had a tantrum that

> only parents of children with autism can understand. Somehow, I got

> him into the bathroom and I had to hold my hands over his ears

> really tight the whole time, and he went.

>

> Then at the docotr's he needed to go again but wouldn't go in their

> bathroom. He was so uncomfortable and he cried and carried on. I

> tried to pick him up and take him in there and he would go limp like

> a rag doll and then when I really picked up all 65 pounds of him he

> started hitting and kicking me.

>

> I finally manged to ge him into the bathroom and, God forgive me, I

> shut the door, and Ethan went berserk. He started screaming

> hysterically, " Mommy, no! No, Mommy! I have to get out of here! "

> The way he screamed and carried on, I'm sure they probably thoguht I

> was beating my child. Then of course, he peed all over himself and

> the floor. i manage to clean him up, change his clothes, and clean

> the floor all the while with him acting irrational and carrying on

> hysterically. And the whole time I was praying for God to give me

> even more patience when everybody tells me I all ready have the

> patience of Job.

>

> Once we got to the back he was calmer and alert and complied with

> the testing. The nurse said she had a hard time getting regular

> kids to do the spirometry correctly, but Ethan did it.

>

> Then the doctor came in and that is went I got interrogated about

> the diagnosis and the exemption.

>

> They gave us a plan that is only going to treat symptoms and

> explains nothing of what is causing this. He is to have two

> breathing treatments a day if he has no symptoms. We are to mix

> Pulmacort (an inhaled steroid) and Zopanex together.

>

> If he is having symptoms then he is to get four treatments a day.

> In addition, he is to be on two different prescription nose sprays

> and a clarinex tablet that dissolves.

>

> Thank God I had the presnece of mind to bring two extra changes of

> clothes. Ethan is potty trained and has not had ANY accidents until

> he started taking the liquid steroid by mouth. The way he acted

> about bathrooms today was reminiscent of life when this first all

> started; it was like being thrust back to the beginning and the

> anxiety for me was overwhelming. I felt like I was losing my child

> all over again.

>

> In addition, Ethan's heart rate was elevated even after he had

> calmed down. Ethan is tall for his age. He is over four feet tall

> and weighs about 65 pounds. This doctor tells me Ethan is obese!

> That just doesn't make sense to me.

> Then the doctor tells me that Ethan needs to be tested immediately

> becasue he thinks that he is pre-diabetic! We are going to his

> regular doctor in the morning for this.

>

> I don't know what to make of all these drugs they are putting him

> on. In light of the way he has acted says taking the oral steroid,

> I am concerned aobut the inhaled steroid. They want to re-do immune

> system testing.

>

> I had explained our story to this docotr and told him that Ethan got

> better once we instituted the DAN! protocol, and he said, " What's

> that? " Yet this is a doctor who supposedly treats many autistic

> children who have lung problems.

>

> I apologize for the long post, and I come to this group because I

> know you all understand what I went through today. I just want to

> help my son get better, but it seems now that the autism symptoms

> are worse. He has missed 54 of 108 school days this year, though we

> have always continued to teach him things at home.

>

> If any of you have any comments about the treatment plan or what I

> can do to figure this lung thing out. They won't say it is true

> asthma, but it is definitly chronic, recurring inflamations in the

> lungs. Ethan was rarely sick prior to his last round of thimerosal,

> but since he was fifteen months old, it has been one respiratory and

> gut problem after another, usually no more than one healthy week at

> a time before the next problem hits.

>

> Thanks for being there,

>

> Haven

> Mom to Ethan, age 6, ASD, OCD, SID

>

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Haven,

What are the DAN protocals you have him on?? My son had major chronic

viruses and sinus infections with a few respiratory issues. I put him on two

capfulls of OPC-3/day antioxidants (it was his 1st supplement before DAN and my

DAN loves it) and he stopped getting sick all of the time but I have to use it

consistently. It sounds like your child is a viral kid and you should think

about trying some of the anti-viral treatments. Infections are usually brought

on after the start of viruses. As for all of the meds they just put your child

on I cannot really advise. Does he by chance have white bumps in the throat??

I, BTW, can completely relate to having to deal with the meltdowns you

experienced. My heart goes out to you. -

>From: shygirl75158 <horses@...>

>Date: Wed Apr 26 23:41:14 CDT 2006

>EOHarm

>Subject: Help

>I am posting here because this is the one group I have had time to

>keep up with. If I am asking for help in the wrong place, I

>apologize, and hopefully one of you can point me in the right

>direction.

>

>I am at my wit's end. My six year old son, Ethan, has been sick for

>over three weeks now with respiratory problems. In addition, he is

>having a problem with a tooth they cannot fix due to the lung

>issues. He has been on many rounds of antibiotics and the other day

>he received a shot of rocephin. Does rocephin contain thimerosal?

>If so, I will be furious becasue I told the doctor he is not to get

>anything containing thimerosal.

>

>He has been on Zopanex and albuterol, and then a few days ago, this

>doctor put him on a liquid steroid, Prednisolone. I dreaded the

>steroid as the last time we had to give this our son regressed and

>really acted crazy. But he can't breathe well, nothing else was

>working, so what to do?

>

>Today, I took him to see a new doctor, a pediatric pulmonologist. I

>had to drive over sixty miles away to see but this doctor came

>highly recomended to me.

>

>I know or I guess I should have kept my mouth shut. They had told

>me to bring a copy of Ethan's medical exemption to vaccination. I

>also took his offical diagnosis of heavy metal intoxication. The

>doctor questioned me about both of these in a manner that made me

>uneasy.

>

>I told him I did not end on a good note with the neurologist becuase

>the neurologist basically told me that all doctors know that a

>percentage of kids will be lost due to mass vaccination, but they

>feel it is justified (I suppose so long as it isn't their child).

>

>Well, evidently, this doctor knows the neurologist and I felt a

>change in his demeanor toward me.

>

>While we were on the way up there, Ethan was very uncomfortable and

>I had to find a place for him to use the bathroom. I thought that

>was unusual because he went before we left home. It made me nervous

>becasue he has an irrational fear (and obsession) with bathrooms.

>

>We stopped at a Pharmacy and he wouldn't go in the bathroom. He

>freaked out and threw himself on the floor and had a tantrum that

>only parents of children with autism can understand. Somehow, I got

>him into the bathroom and I had to hold my hands over his ears

>really tight the whole time, and he went.

>

>Then at the docotr's he needed to go again but wouldn't go in their

>bathroom. He was so uncomfortable and he cried and carried on. I

>tried to pick him up and take him in there and he would go limp like

>a rag doll and then when I really picked up all 65 pounds of him he

>started hitting and kicking me.

>

>I finally manged to ge him into the bathroom and, God forgive me, I

>shut the door, and Ethan went berserk. He started screaming

>hysterically, " Mommy, no! No, Mommy! I have to get out of here! "

>The way he screamed and carried on, I'm sure they probably thoguht I

>was beating my child. Then of course, he peed all over himself and

>the floor. i manage to clean him up, change his clothes, and clean

>the floor all the while with him acting irrational and carrying on

>hysterically. And the whole time I was praying for God to give me

>even more patience when everybody tells me I all ready have the

>patience of Job.

>

>Once we got to the back he was calmer and alert and complied with

>the testing. The nurse said she had a hard time getting regular

>kids to do the spirometry correctly, but Ethan did it.

>

>Then the doctor came in and that is went I got interrogated about

>the diagnosis and the exemption.

>

>They gave us a plan that is only going to treat symptoms and

>explains nothing of what is causing this. He is to have two

>breathing treatments a day if he has no symptoms. We are to mix

>Pulmacort (an inhaled steroid) and Zopanex together.

>

>If he is having symptoms then he is to get four treatments a day.

>In addition, he is to be on two different prescription nose sprays

>and a clarinex tablet that dissolves.

>

>Thank God I had the presnece of mind to bring two extra changes of

>clothes. Ethan is potty trained and has not had ANY accidents until

>he started taking the liquid steroid by mouth. The way he acted

>about bathrooms today was reminiscent of life when this first all

>started; it was like being thrust back to the beginning and the

>anxiety for me was overwhelming. I felt like I was losing my child

>all over again.

>

>In addition, Ethan's heart rate was elevated even after he had

>calmed down. Ethan is tall for his age. He is over four feet tall

>and weighs about 65 pounds. This doctor tells me Ethan is obese!

>That just doesn't make sense to me.

>Then the doctor tells me that Ethan needs to be tested immediately

>becasue he thinks that he is pre-diabetic! We are going to his

>regular doctor in the morning for this.

>

>I don't know what to make of all these drugs they are putting him

>on. In light of the way he has acted says taking the oral steroid,

>I am concerned aobut the inhaled steroid. They want to re-do immune

>system testing.

>

>I had explained our story to this docotr and told him that Ethan got

>better once we instituted the DAN! protocol, and he said, " What's

>that? " Yet this is a doctor who supposedly treats many autistic

>children who have lung problems.

>

>I apologize for the long post, and I come to this group because I

>know you all understand what I went through today. I just want to

>help my son get better, but it seems now that the autism symptoms

>are worse. He has missed 54 of 108 school days this year, though we

>have always continued to teach him things at home.

>

>If any of you have any comments about the treatment plan or what I

>can do to figure this lung thing out. They won't say it is true

>asthma, but it is definitly chronic, recurring inflamations in the

>lungs. Ethan was rarely sick prior to his last round of thimerosal,

>but since he was fifteen months old, it has been one respiratory and

>gut problem after another, usually no more than one healthy week at

>a time before the next problem hits.

>

>Thanks for being there,

>

>Haven

>Mom to Ethan, age 6, ASD, OCD, SID

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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I'm so sorry for all you've been through! I saw someone suggested

naltrexone, it's working great for my daughter. I know some are gonna

freak, but for *my* daughter, zoloft helps immensely with meltdowns;

she went from 30 minute headbanging on the floor to slight whimpering,

and she stopped putting her hands over her ears. We only chose this

route after dietary change, many supps, therapy, and saw a six mo

decline.

I would suggest considering a fungal infection or viral infection.

Neither of these is gonna respond to antibiotics. Have they done any

cultures at all? That's the only way to determine if it's bacterial,

and docs are notorious for shoving down antibiotics rather than

finding the source. Virastop, an enzyme from Enzymedica, might help,

there's also one called Mucostop.

I would also suggest an allergy connection more than an infection. A

year ago I kept chronic lung infections, went through 8 rounds of

antibiotics in 10 mos. Once I started taking folininc acid,

beta-glucan, vit E (which lung tissue needs), and vit C, I got better

and stayed better.

I'm not a health care provider, just a mom passing on my experiences,

pls don't take as medical advice!

HTH,

Debi

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I would also suggest getting his testosterone checked. Dr. Geier has a

testosterone protocol for treating autism. If it's abnormally high,

that might be a factor in his large size, as well as violent outbursts.

Debi

-

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Poor Tara, I have so much the same problem but from the other angle,

over-eating. Sounds to me like you may need some professional

counseling. Have you tried that route recently?

I don't know anything about anorexia, but I do know it's a tough

thing to lick. I think you are too hard on yourself. It sounds like

you beat yourself up (not that I would know anything about that ;-p

). Have you tried just being nice to yourself?

Have you tried to focus on all the things you have done well? In my

opinion, given your history, your weight is much better than it could

be. By your pictures you do not look like the sadly emaciated women

that I see out trying to run off their pain. And lastly, your

calorie level is good!!!!! It could be so much worse!

Maybe you just need a break, relax and enjoy your upcoming

wedding. Forget about trying to gain muscle and try to focus on and

accept the wonderful things about where you are right now.

I wish I could help you, but I do know that from where I stand, you

are truly a success! Give yourself credit!

Diane

At 08:48 PM 4/27/2006, you wrote:

>I'm mad at myself. I know that I should not lose weight. I have been

>calculating stuff on fitday and I've only been eating 1600-1700

>calories, including Betagen and UDOs capsules. I have been hovering

>between 116 and 118 pounds. I know that I should probably weigh

>more. I know that to gain muscle I need to gain weight, but I'm just

>so afraid of adding calories. I'm so scared that I'm going to gain a

>bunch of weight very quickly. How can I be staying the same and even

>gaining by eating that amount of calories? I eat almost the exact

>same thing every day b/c of afraid that I'll go out of control with

>eating and binge or gain weight b/c of adding calories. I know

>this is hurting me. My hair is thin and dry, my skin is dry, my

>nails are purple and peeling, I keep getting hurt, and I'm tired

>all of the time. What can I do to snap myself out of this? All I

>seem to think about is what and when I'm going to eat, figuring out

>protein/carb ratios. I have to drag myself to the

>gym, but I can't stay away. It makes me very anxious to think about

>skipping a workout. I felt so guilty the other day for putting a

>wheat thin in my mouth that I spit it out. I feel crazy. I just want

>to be healthy, but i know I'm not. I'm tired of being obsessed.

>I've tried therapy, i was on antidepressents. Nothing seems to help.

>Sorry. Just needed to vent. Sometimes just seeing it written helps

>me out. I feel so shallow and selfish b/c I know so many people have

>horrible problems. I just can't seem to stop thinking about

>exercise and food. It controls me. it keeps me from goign out with

>people, even my fiancee.It's interfering with how I do my job. I feel so lost.

>

>

>---------------------------------

>How low will we go? Check out Messenger's low PC-to-Phone call rates.

>

>

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Tara,

What you are going through is just as much of an issue as someone

who has diabeties. By your own admission you have been suffering

from an eating disorder, and eating disorders are an illness. You

should not say " I'm sorry, I know other people are struggling

with 'real' problems " because this IS a real problem. You say that

you have tried counceling. Did it help you at the time? If not,

was it a bad fit between you and the councelor? Or were you just not

ready to change?

I'm glad you are ordering UDOs. I think that your body will thank

you for that. The pills are just not the same.

Now, you say you are scared to add calories because you don't want

to get out of controle. I understand your concern, but you know that

to get healthy that is exactly what you are going to need to do. So,

how do we get you to do it?

I don't know much about your situation, what kind of help and advise

will help you and what will just feed the obsession. Part of me

wants to tell you to stop counting and measuring, just eat...but

then you probably won't eat at all.

Perhaps if you set yourself a really small goal....like for the next

week you will get your daily average up to 1750 calories. That is

not much of a change, so it should not freak you out. Once you are

used to that, maybe add another 50 a day....

My heart goes out to you and your struggle. It is one you can over

come, but I know that it is not easy.

What can we do to help?

Barbara

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Thank you. I wish I could be as nice to myself as I am to others, but I know

most women have that problem. My family just keeps telling me how gross I look.

I used to be a binge eater, and I still have that urge if I eat anything

unclean. It makes me just want to fall off the wagon. Professional help did

nothing for me. I think my therapist had a disorder herself.

" Diane M. " wrote: Poor Tara, I have so much the

same problem but from the other angle,

over-eating. Sounds to me like you may need some professional

counseling. Have you tried that route recently?

I don't know anything about anorexia, but I do know it's a tough

thing to lick. I think you are too hard on yourself. It sounds like

you beat yourself up (not that I would know anything about that ;-p

). Have you tried just being nice to yourself?

Have you tried to focus on all the things you have done well? In my

opinion, given your history, your weight is much better than it could

be. By your pictures you do not look like the sadly emaciated women

that I see out trying to run off their pain. And lastly, your

calorie level is good!!!!! It could be so much worse!

Maybe you just need a break, relax and enjoy your upcoming

wedding. Forget about trying to gain muscle and try to focus on and

accept the wonderful things about where you are right now.

I wish I could help you, but I do know that from where I stand, you

are truly a success! Give yourself credit!

Diane

At 08:48 PM 4/27/2006, you wrote:

>I'm mad at myself. I know that I should not lose weight. I have been

>calculating stuff on fitday and I've only been eating 1600-1700

>calories, including Betagen and UDOs capsules. I have been hovering

>between 116 and 118 pounds. I know that I should probably weigh

>more. I know that to gain muscle I need to gain weight, but I'm just

>so afraid of adding calories. I'm so scared that I'm going to gain a

>bunch of weight very quickly. How can I be staying the same and even

>gaining by eating that amount of calories? I eat almost the exact

>same thing every day b/c of afraid that I'll go out of control with

>eating and binge or gain weight b/c of adding calories. I know

>this is hurting me. My hair is thin and dry, my skin is dry, my

>nails are purple and peeling, I keep getting hurt, and I'm tired

>all of the time. What can I do to snap myself out of this? All I

>seem to think about is what and when I'm going to eat, figuring out

>protein/carb ratios. I have to drag myself to the

>gym, but I can't stay away. It makes me very anxious to think about

>skipping a workout. I felt so guilty the other day for putting a

>wheat thin in my mouth that I spit it out. I feel crazy. I just want

>to be healthy, but i know I'm not. I'm tired of being obsessed.

>I've tried therapy, i was on antidepressents. Nothing seems to help.

>Sorry. Just needed to vent. Sometimes just seeing it written helps

>me out. I feel so shallow and selfish b/c I know so many people have

>horrible problems. I just can't seem to stop thinking about

>exercise and food. It controls me. it keeps me from goign out with

>people, even my fiancee.It's interfering with how I do my job. I feel so lost.

>

>

>---------------------------------

>How low will we go? Check out Messenger's low PC-to-Phone call rates.

>

>

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Thank you for your concern. I also think I would do better without weighing and

measuring, but it's so hard to break free of that. I just don't trust myself to

eat a normal portion if I don't measure out, say 3/4 of a cup of cottage

cheese. I just have this compulsion to know exactly how many calories I've

eaten. I get so nervous if I don't. That sounds crazy, but I need to admit it.

alysd38 <no_reply > wrote: Tara,

What you are going through is just as much of an issue as someone

who has diabeties. By your own admission you have been suffering

from an eating disorder, and eating disorders are an illness. You

should not say " I'm sorry, I know other people are struggling

with 'real' problems " because this IS a real problem. You say that

you have tried counceling. Did it help you at the time? If not,

was it a bad fit between you and the councelor? Or were you just not

ready to change?

I'm glad you are ordering UDOs. I think that your body will thank

you for that. The pills are just not the same.

Now, you say you are scared to add calories because you don't want

to get out of controle. I understand your concern, but you know that

to get healthy that is exactly what you are going to need to do. So,

how do we get you to do it?

I don't know much about your situation, what kind of help and advise

will help you and what will just feed the obsession. Part of me

wants to tell you to stop counting and measuring, just eat...but

then you probably won't eat at all.

Perhaps if you set yourself a really small goal....like for the next

week you will get your daily average up to 1750 calories. That is

not much of a change, so it should not freak you out. Once you are

used to that, maybe add another 50 a day....

My heart goes out to you and your struggle. It is one you can over

come, but I know that it is not easy.

What can we do to help?

Barbara

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Sounds like you should set some boundaries with your family

too. That is not loving to tell you they don't like how you

look. Just because they are family does not give them the right to

judge you. I had to set some distance from my family myself.

Maybe you should seek out a different therapist. I went to one who

supposedly specialized in Eating Disorders. She told me to eat

protein with every meal. gee, great. She also told me though that

until I face all the emotional issues in my life I was going to have

some trouble kicking the eating thing. Now that I have thought about

since. I don't think I was ever very honest with her about the true

extent of the problem. There is a lot of shame with an eating

disorder. I don't think we can really be helped until we are honest

with ourselves. There, I applaud you for your honesty.

Just be careful not to turn it toward hatred toward yourself. I made

a pact with a woman once, try to do one nice thing for yourself every

day. Whenever I was down on myself she would ask me what I had done

that day. It sounds corny but it really helped. it wasn't until I

started treating myself with respect that I began to finally respect myself.

Have you tried meditation? That is something i never make time for,

but I think it would help. It helps you center yourself, learning to

feel and love your body. I've heard there are very good self

affirmation tapes too. In fact, I would like to try this myself. If

anyone has any recommendations, speak up.

Maybe you do need the measuring in order to eat enough, but I really

do hope you are aware that all the obsessing does NOT help! I'm

cutting it off myself, Tomorrow, LOL. (after my last supper).

Diane

At 09:17 PM 4/27/2006, you wrote:

>Thank you. I wish I could be as nice to myself as I am to others,

>but I know most women have that problem. My family just keeps

>telling me how gross I look. I used to be a binge eater, and I

>still have that urge if I eat anything unclean. It makes me just

>want to fall off the wagon. Professional help did nothing for me. I

>think my therapist had a disorder herself.

>

> " Diane M. " wrote: Poor Tara, I have

>so much the same problem but from the other angle,

>over-eating. Sounds to me like you may need some professional

>counseling. Have you tried that route recently?

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Thank you so much for your kind words. Yes, We have been seeing different DAN! doctors since all this started. First we saw Amy Holmes, and she helped us a lot. The DAN! we see now is also an allergist and immunologist, but he really isn't giving us concrete answers to this situation, and he also suggested that Ethan take the steroids.

I cannot deal with him on steroids! It makes him crazy. It breaks my heart to see the kind of child steroids turn him into. He is usually a very loving, happy, affectionate, high functioning child who pretend plays all the time and has a sense of humor and loves to make people laugh.

Steroids seem to turn him into a rather paranoid individual. When we were in that bathroom he behaved like a cornered, wild animal. It just was breaking my heart because I couldn't reason with him or calm him down and get him over that fear.

I think the doctor suggested diabetes due to the excessive urination yesterday and the elevated heart rate, but I think his anxiety was the cause for the heart rate. I have no clue as to why he said my son was obese. No one who looks at him would think he is obese. He does have the distended belly that so many autistic children have.

We saw his regular doctor today. She is not a DAN! physician, but she is a holistic D.O. and I was lucky to find such an open minded practitioner. She has helped me with my own health immensely. She has helped our son too. the only reason I went to these other doctors over the past couple of weeks is because our DAN! doc and the regular doc were both booked solid and we couldn't get an appointment.

Our DAN! doc just hasn't been really helping Ethan much lately. The transdermal chelation just hasn't worked for Ethan. We had better luck with suppository. We are going to do a challenge test with that again once we get him well.

Ethan's family physician told us today that Ethan IS NOT obese and he tested negative for diabetes, but she said if we kept giving him steroids the way that other doc wants us to, he could well wind up with diabetes.

She feels that Ethan's nasal and respiratory condition is due to an overgrowth of fungus and she told us to put him on an anti yeast diet and put him back on Nystantin pronto. I think what she says makes sense since he has been on so many rounds of antibiotics for the last couple of months.

He was all ready SO much better today after having gone twenty-four hours without any steroid. He is coming back. Today was so much better! The people at this family clinic have known my son since he was two. He still wouldn't go into the public bathroom there. They were understanding, so they let him pee in the cup in the exam room :) for the urinalysis.

Thanks again for your kind words.

Haven

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Tara,

My heart goes out to you! I echo what the other women have already

said.

Is there any way you feel you could look at yourself and find a way

to acknowledge your beauty? The beauty of the body you now have,

the beauty of your spirit, the beauty of the love you have inside

you, all of the wonderful support you are already so willing to give

to others (I know that's true because you are always cheerleading

and supporting women on this list). There are so many aspects of

your that are wonderful. What would it be like to meditate on the

deep, wondrous beauty of you as you are NOW?

It can be so hard to be a woman in today's society. We are told

that we must be perfect, that we must fit into everyone else's ideas

of who we should be. Who do you want to be, Tara? How do you want

to operate in your life? What kind of joy are you willing to let

into your life? How would it be for you to say that you are perfect

as you are right now? Would that take the pressure off? Is there a

way you can be grateful to how your body has already taken care of

you?

I come at this from the other end of the spectrum - being

overweight. It was only after I was able to really and truly be

grateful to my body - and stop the cycle of guilt, before I was

ready to take the next steps to getting in shape again. This is

your body. It's the only one you're gonna get this time around.

How would it be for you to love your body, instead of feel ashamed

of it. Shame is such a deadly emotion - it robs us of our power.

Sometimes we really need to allow ourselves to feel our grief, too.

Finding a skilled therapist to help you find your way through all of

the emotions can be such an incredible thing.

Good luck in this endeavor. Perhaps this journey will lead you

straight to your heart/strength. It is that way, most of the time.

The part of us that is the hardest to reconcile is the part of us

that has the most to offer in our lifepath.

Anyway, that's all -- and I know it's lengthy and a bit esoteric, I

suppose. But I so feel for you, Tara, and wish you healing.

Peace,

These are all thoughts that occur to me when I read how difficult

things are.

I would also encourage you to look at The Pathway that others have

mentioned. I did read the book years ago and it is quite good.

There are also some really good therapists out there. Sometimes you

have to try a few out to see if they are going to be a good fit.

>

> I'm mad at myself. I know that I should not lose weight. I have

been calculating stuff on fitday and I've only been eating 1600-1700

calories, including Betagen and UDOs capsules. I have been hovering

between 116 and 118 pounds. I know that I should probably weigh

more. I know that to gain muscle I need to gain weight, but I'm just

so afraid of adding calories. I'm so scared that I'm going to gain a

bunch of weight very quickly. How can I be staying the same and even

gaining by eating that amount of calories? I eat almost the exact

same thing every day b/c of afraid that I'll go out of control with

eating and binge or gain weight b/c of adding calories. I know

this is hurting me. My hair is thin and dry, my skin is dry, my

nails are purple and peeling, I keep getting hurt, and I'm tired

all of the time. What can I do to snap myself out of this? All I

seem to think about is what and when I'm going to eat, figuring out

protein/carb ratios. I have to drag myself to the

> gym, but I can't stay away. It makes me very anxious to think

about skipping a workout. I felt so guilty the other day for putting

a wheat thin in my mouth that I spit it out. I feel crazy. I just

want to be healthy, but i know I'm not. I'm tired of being

obsessed. I've tried therapy, i was on antidepressents. Nothing

seems to help. Sorry. Just needed to vent. Sometimes just seeing it

written helps me out. I feel so shallow and selfish b/c I know so

many people have horrible problems. I just can't seem to stop

thinking about exercise and food. It controls me. it keeps me from

goign out with people, even my fiancee.It's interfering with how I

do my job. I feel so lost.

>

>

> ---------------------------------

> How low will we go? Check out Messenger's low PC-to-Phone

call rates.

>

>

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Years ago I read the book "The Yeast Connection" and found it very informative regarding the issue of fungus infections. Good luck!Haven <horses@...> wrote: Thank you so much for your kind words. Yes, We have been seeing different DAN! doctors since all this started. First we saw Amy Holmes, and she helped us a lot. The DAN! we see now is also an allergist and immunologist, but he really isn't giving us concrete answers to this situation, and he also suggested that Ethan take the steroids. I

cannot deal with him on steroids! It makes him crazy. It breaks my heart to see the kind of child steroids turn him into. He is usually a very loving, happy, affectionate, high functioning child who pretend plays all the time and has a sense of humor and loves to make people laugh. Steroids seem to turn him into a rather paranoid individual. When we were in that bathroom he behaved like a cornered, wild animal. It just was breaking my heart because I couldn't reason with him or calm him down and get him over that fear. I think the doctor suggested diabetes due to the excessive urination yesterday and the elevated heart rate, but I think his anxiety was the cause for the heart rate. I have no clue as to why he said my son was obese. No one who looks at him would think he is obese. He does have the distended belly that so many autistic children have.

We saw his regular doctor today. She is not a DAN! physician, but she is a holistic D.O. and I was lucky to find such an open minded practitioner. She has helped me with my own health immensely. She has helped our son too. the only reason I went to these other doctors over the past couple of weeks is because our DAN! doc and the regular doc were both booked solid and we couldn't get an appointment. Our DAN! doc just hasn't been really helping Ethan much lately. The transdermal chelation just hasn't worked for Ethan. We had better luck with suppository. We are going to do a challenge test with that again once we get him well. Ethan's family physician told us today that Ethan IS NOT obese and he tested negative for diabetes, but she said if we kept giving him steroids the way that other doc wants us to, he could well

wind up with diabetes. She feels that Ethan's nasal and respiratory condition is due to an overgrowth of fungus and she told us to put him on an anti yeast diet and put him back on Nystantin pronto. I think what she says makes sense since he has been on so many rounds of antibiotics for the last couple of months. He was all ready SO much better today after having gone twenty-four hours without any steroid. He is coming back. Today was so much better! The people at this family clinic have known my son since he was two. He still wouldn't go into the public bathroom there. They were understanding, so they let him pee in the cup in the exam room :) for the urinalysis. Thanks again for your kind words. Haven

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Thanks so much for your reply. That put my mind at ease. Ethan was so much better today!

Haven

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Thank you Holly!

Yes, I think we are going to put him on the naltrexone. He was SO much better today. I think since he has had more than 24 hours off the steroids. I just don't think Ethan can tolerate them.

Thank you so much for your words of encouragement. I was a basket case yesterday. We had a very good day today.

Sometimes i think living with autism is so much like riding on a roller coaster. The good days do a lot to get us all through he bad ones.

Bless you.

Haven

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