Advice?

[Guest guest]

Sorry, I don't have any good advice for you re: your shots, but please--what's the point of this group if we don't "snivel" every once in a while. Vent whenever you need to, we're all here to listen and support.

celeste

rheumatic Advice?

Hi - I need to do some venting here, and desperately need some questions answered. This will be rambling and lengthy; sorry in advance.........please bear with me.

I know we all have bad days, or weeks, or months.........well, here's my recent baaaaaad day(s) scenerio; Monday was school all day - 45 mile round trip - which was ok except that it totally exhausted me. Tuesday, despite the exhaustion and very little sleep, I kept a 10:00 appointment - 100 miles round trip... and, my hands, arms, and shoulders hurt more than ever! Decided on a "treat" and we stopped at Mcs for breakfast - my favorite: sausage, egg, and cheese McMuffin. I haven't had one in about 4 years, but felt sassy......never again in my life! Within an hour my stomach was doing such a number on me - pain, nausea (should I puke or poop?) chills, fever, shakes - felt like there was a balloon being inflated in my guts! This has happened a few times since my first knee operation (I've mentioned this before) and lasts a few hours........this time it lasted till 2 in the morning! Also had an appointment with my surgeon Tuesday afternoon, and that just prolonged the agony! So, Wednesday I went to the local clinic for my weekly shot, and talked to my doctor about the stomach thing. She said probably my gall bladder didn't want to process all the fat from the "treat".......that I would've been better off having french fries! She didn't seem too concerned, however. Anyway, I also talked to her about some itching I've been experiencing at the site of my injections (again, I've mentioned this before) ........this might be nothing, or it might be that I'm becoming sensitive, or possibly allergic, to the drug. She suggested I get the shot in my arm instead of my butt, and that I should watch for red rash, tightening of throat, that kind of stuff. Well, I usually don't get the shot in my arm 'cause it hurts like the devil, but did.....and sure enough, it turned red! (And, there was a huge knot which only now going away - and I couldn't sleep on that side for two nights!) So now, I have to decide if it's just "red", or a "rash". And, what is that funny feeling I'm getting - am I having difficulty breathing??? It is not much fun being a hyporchondriac - just tell me what the effects can be, and I can manifest them post-haste! Well, guess I just didn't have enough STRESS, 'cause just when I decided I'd probably live, I began itching on my left hip at the site of the shots, and BOOM! two huge welts appear!!! And then, I got to go to school and teach for 3 hours - which probably saved sanity by giving me something else to focus on!

I don't know what's going on - does this sound like I'm developing an allergy to the clindy? Or, just being super-sensitive to the shots - is that the same thing? Would it be wise to consider stopping the shots for awhile and do just the doxy (which I do 200mg 3x week) - maybe even up my dosage? Has anyone some advice here? Is anyone doing just doxy? I sure don't want to have to stop the antibiotics - my God, where would I go???

And, (nope - not done yet!) new blood work showed elevated numbers.............

RF C-RP ANA SED ASO Uric Acid

Ref. range: 0-20 neg<0.50 neg<1:40 0-30 eg<200 2.2 - 7.7

3/30/00 805 ? neg 53 ? 5.8

6/28/00 538 6.58 1.7 pos 53 neg 5.6

10/4/00 860 7.92 1.4 pos 57 103 6.0

........dammit dammit dammit! I wonder if this reflects the stress I've been under lately - ie post-op stuff, learning to walk again, new semester, etc. I don't feel much worse than I did at the time of last blood work (6/28), though my hands and arms have been hurting a lot - possibly because I'm using them differently since I'm more mobile. Can a flare/herx elevate the numbers? I think yes, but would like some input here.

So, here it is Saturday and I still feel funky - some stomach upset, some anxiety about getting another shot Wednesday, some anxiety about NOT getting another shot Wednesday............I'm trying hard not to cry here - the AP is my life-line and I don't have an alternative!

Ahhh, but - there IS good news.........my cholesterol (good and bad) is great, my iron count has gone up, and my liver and kidneys are just fine. And, my knee doc says I'm doing great, despite the RA. And, even better news is that I've finished bitchin'...........

Thank you to those who manage to stick with this - I would appreciate any advice you may give me.........my apology to those who can't stand the sniveling.........

Be well, To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Ok,

,

I used to get welts all of the time in my second year of AP. I'd get all itchy in the torso, mostly and after scratching the welts would appear. It went away on it's own. I don't know if I was showing a side effect of the drugs or a herx.

As for the IM shot. How long is the needle. My understanding is that it has to go deep into the muscle. If it's only an inch or 1/2 an inch it may just be piling up under the skin. Any nurses out there that can confirm this??

As for stopping. Have you read the scare sheet on the drug?? Is it dalacin c phosphate?? You have to look for your symptoms and try to narrow it down. Also, not all shot giver are created equal. There is a knack to it.

I may still have a copy of the drug info sheet with my IV med. (same thing) I'll read it.

As for feeling crappy. I'd say you runnin around with your hair on fire and that is definitely not part of the protocol. Slow and easy wins the race. You have a lot of medication doing a lot of killing and your body needs to be quite, well rested, calm, watered, fed and clean to do it's job. Mc's doesn't have to be related to a gall bladder to cause the grief it did. I would go through the same hell.

As for your labs.....I've been on the IV's for over 2 1/2 years and the AP for over 3. My labs hover around the same but my symptoms are receding. Dr. Brown himself could not explain why we feel better before the labs return to normal. Sometimes taking years after the person feels well again. Personally I never look at mine. I go by how I feel.

ps: when was your surgery done??

Oh, I found it.....it reads as follows:

Local Reactions

Local irritation, pain and abscess formation have been seen with IM injection. Thrombophlebitis has been reported with IV injection. These reactions can be minimized by deep IM injection and avoidance of indwelling intravenous catheters.

rheumatic Advice?

Hi - I need to do some venting here, and desperately need some questions answered. This will be rambling and lengthy; sorry in advance.........please bear with me.

I know we all have bad days, or weeks, or months.........well, here's my recent baaaaaad day(s) scenerio; Monday was school all day - 45 mile round trip - which was ok except that it totally exhausted me. Tuesday, despite the exhaustion and very little sleep, I kept a 10:00 appointment - 100 miles round trip... and, my hands, arms, and shoulders hurt more than ever! Decided on a " treat " and we stopped at Mcs for breakfast - my favorite: sausage, egg, and cheese McMuffin. I haven't had one in about 4 years, but felt sassy......never again in my life! Within an hour my stomach was doing such a number on me - pain, nausea (should I puke or poop?) chills, fever, shakes - felt like there was a balloon being inflated in my guts! This has happened a few times since my first knee operation (I've mentioned this before) and lasts a few hours........this time it lasted till 2 in the morning! Also had an appointment with my surgeon Tuesday afternoon, and that just prolonged the agony! So, Wednesday I went to the local clinic for my weekly shot, and talked to my doctor about the stomach thing. She said probably my gall bladder didn't want to process all the fat from the " treat " .......that I would've been better off having french fries! She didn't seem too concerned, however. Anyway, I also talked to her about some itching I've been experiencing at the site of my injections (again, I've mentioned this before) ........this might be nothing, or it might be that I'm becoming sensitive, or possibly allergic, to the drug. She suggested I get the shot in my arm instead of my butt, and that I should watch for red rash, tightening of throat, that kind of stuff. Well, I usually don't get the shot in my arm 'cause it hurts like the devil, but did.....and sure enough, it turned red! (And, there was a huge knot which only now going away - and I couldn't sleep on that side for two nights!) So now, I have to decide if it's just " red " , or a " rash " . And, what is that funny feeling I'm getting - am I having difficulty breathing??? It is not much fun being a hyporchondriac - just tell me what the effects can be, and I can manifest them post-haste! Well, guess I just didn't have enough STRESS, 'cause just when I decided I'd probably live, I began itching on my left hip at the site of the shots, and BOOM! two huge welts appear!!! And then, I got to go to school and teach for 3 hours - which probably saved sanity by giving me something else to focus on!

I don't know what's going on - does this sound like I'm developing an allergy to the clindy? Or, just being super-sensitive to the shots - is that the same thing? Would it be wise to consider stopping the shots for awhile and do just the doxy (which I do 200mg 3x week) - maybe even up my dosage? Has anyone some advice here? Is anyone doing just doxy? I sure don't want to have to stop the antibiotics - my God, where would I go???

And, (nope - not done yet!) new blood work showed elevated numbers.............

RF C-RP ANA SED ASO Uric Acid

Ref. range: 0-20 neg<0.50 neg<1:40 0-30 eg<200 2.2 - 7.7

3/30/00 805 ? neg 53 ? 5.8

6/28/00 538 6.58 1.7 pos 53 neg 5.6

10/4/00 860 7.92 1.4 pos 57 103 6.0

........dammit dammit dammit! I wonder if this reflects the stress I've been under lately - ie post-op stuff, learning to walk again, new semester, etc. I don't feel much worse than I did at the time of last blood work (6/28), though my hands and arms have been hurting a lot - possibly because I'm using them differently since I'm more mobile. Can a flare/herx elevate the numbers? I think yes, but would like some input here.

So, here it is Saturday and I still feel funky - some stomach upset, some anxiety about getting another shot Wednesday, some anxiety about NOT getting another shot Wednesday............I'm trying hard not to cry here - the AP is my life-line and I don't have an alternative!

Ahhh, but - there IS good news.........my cholesterol (good and bad) is great, my iron count has gone up, and my liver and kidneys are just fine. And, my knee doc says I'm doing great, despite the RA. And, even better news is that I've finished bitchin'...........

Thank you to those who manage to stick with this - I would appreciate any advice you may give me.........my apology to those who can't stand the sniveling.........

Be well, To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Suzanne,

Welcome to the group!

I repositioned my daughter Remy from 5 months of age to about 13

months of age. We didn't use a helmet or band. In my opinion, 5

months of age was certainly late to start repo; we were one of the

few that got excellent correction from repo when starting that

late. Generally speaking, best results from repo are gained from 6

months of age and younger, so the ped's comment was in line with

that assumption. It sounds like you are doing very well with repo

techniques from your description of day and night activities. In

our case, we saw a little bit of noticeable rounding after a couple

of weeks of repo. Definitely after a month, we saw marked

improvement. If you'd like to take a look at Remy's progress pics,

they are in the Photos section/ Before and After/Repositioned/Remy

album. We only saw dramatic improvement from 5 - 7 months, a little

from 7 - 9 months, and a teeny bit from 9 - 11 months.

The best bet is to set a repo deadline, and start working on getting

the helmet/band stuff in order before then (referrals, evaluations,

consultation, etc.) That way, when you reach your repo deadline,

you'll be ready to go right to a band if you decide you do want to

band. Another benefit is that setting a deadline keeps you

considering the band option in a timely enough manner to get the

best results if you go down that road.

Hanger is an enormous orthotics and prosthetics company. They do

have over 600 locations in the U.S. A company rep told me that only

a small minority of the locations have any knowledge of cranial

banding, and a minority of that minority have experience with

cranial banding. I'm mentioning this because if you used their

facility locator on their website, and found a location near you,

that is no guarantee that bands are even available there. If you do

find that bands are available there, it is essential that you take

with you a list of questions to ask any potential ortho. Not all

orthos will have specific training in, or experience with bands, so

asking these questions might flesh out issues you'd like to weigh

when making a treatment decision. You can find links to sample

questions to ask in the Links/Helmets and Bands/Questions for the

Ortho folder. Also, recently we found out that Hanger has been

offering some specialized band training to their orthos. This would

be a plus, so you may want to make a note of asking any potential

ortho if they have availed themselves of this training.

Would you let me know if I can be of any help with repo? There are

some documents on repo techniques, training, and assessing repo

progress here at the group site in the Files/Repo Headquarters

folder.

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " Suzanne " <starre915@y...>

wrote:

> i took my daughter to her ped today about the plagio. and i was

> shocked to talk to someone who said, " get a helmet " she was all

for

> it. she said that she just transfered here from savannah, ga and

she

> said that there they treat a lot of kids with plagio. she said

that

> here the other doctors in the office don't even know what it is. i

> asked her how she would classify savannah's head, and she said

mild-

> moderate. she said that she can also see some facial asemmetry and

> her ears are a bit off. since we will be going back home

(salisbury,

> md) for 2 months on the 18th, she said to take her to a ped there

> asap and get them to refer me to get her evaluated. i just looked

> and there is a hanger right in salisbury!!! i asked her if she

> thought that repoing might work and she said that she recommends

> getting her into a helmet/band now. since she is 5 months old she

> doesn't think that repo will work. i have only been doing it for a

> week now but it is working well when she naps and at night. she is

> starting to sleep on her tummy better now. and in the carseat we

are

> using the noggin nest. she is hardly ever on her back during the

> day. the only time is when i change her.

> so i guess what i want to know from you all is what do you think?

> those of you that have repo'ed, about how long did it take to

start

> seeing results? what would you suggest that i do.....wait and see

> how the repo goes for about another month or go ahead in getting

> helmet/band? please let me know what you all think. i am so

> stressing right now cause i can't talk to my husband whenever i

want

> to, i have to wait till he calls so i don't know what to do.

> thanks for listening (reading) to me ramble on.

> sorry i'm just really stressing right now.

> thanks so much, suzanne

[Guest guest]

christie,

thanks so much for responding. i will look into the hanger location in my area to see if they have bands there. thanks for letting me know that i thought that they would all have the same thing. i had planned to make a deadline in repo. and i am going to try to get a consult/eval. as soon as i get there.

thanks, suzanneredlocks2003 <redlocks@...> wrote:

Hi Suzanne,Welcome to the group!I repositioned my daughter Remy from 5 months of age to about 13 months of age. We didn't use a helmet or band. In my opinion, 5 months of age was certainly late to start repo; we were one of the few that got excellent correction from repo when starting that late. Generally speaking, best results from repo are gained from 6 months of age and younger, so the ped's comment was in line with that assumption. It sounds like you are doing very well with repo techniques from your description of day and night activities. In our case, we saw a little bit of noticeable rounding after a couple of weeks of repo. Definitely after a month, we saw marked improvement. If you'd like to take a look at Remy's progress pics, they are in the Photos section/ Before and

After/Repositioned/Remy album. We only saw dramatic improvement from 5 - 7 months, a little from 7 - 9 months, and a teeny bit from 9 - 11 months. The best bet is to set a repo deadline, and start working on getting the helmet/band stuff in order before then (referrals, evaluations, consultation, etc.) That way, when you reach your repo deadline, you'll be ready to go right to a band if you decide you do want to band. Another benefit is that setting a deadline keeps you considering the band option in a timely enough manner to get the best results if you go down that road.Hanger is an enormous orthotics and prosthetics company. They do have over 600 locations in the U.S. A company rep told me that only a small minority of the locations have any knowledge of cranial banding, and a minority of that minority have experience with cranial banding. I'm mentioning this because if you

used their facility locator on their website, and found a location near you, that is no guarantee that bands are even available there. If you do find that bands are available there, it is essential that you take with you a list of questions to ask any potential ortho. Not all orthos will have specific training in, or experience with bands, so asking these questions might flesh out issues you'd like to weigh when making a treatment decision. You can find links to sample questions to ask in the Links/Helmets and Bands/Questions for the Ortho folder. Also, recently we found out that Hanger has been offering some specialized band training to their orthos. This would be a plus, so you may want to make a note of asking any potential ortho if they have availed themselves of this training.Would you let me know if I can be of any help with repo? There are some documents on repo techniques,

training, and assessing repo progress here at the group site in the Files/Repo Headquarters folder.Take care,Christie (Mom to Repo'd Remy)> i took my daughter to her ped today about the plagio. and i was > shocked to talk to someone who said, "get a helmet" she was all for > it. she said that she just transfered here from savannah, ga and she > said that there they treat a lot of kids with plagio. she said that > here the other doctors in the office don't even know what it is. i > asked her how she would classify savannah's head, and she said mild-> moderate. she said that she can also see some facial asemmetry and > her ears are a bit off. since we will be going back home (salisbury, > md) for 2 months on the 18th, she said to take her to a ped there > asap and get them to refer

me to get her evaluated. i just looked > and there is a hanger right in salisbury!!! i asked her if she > thought that repoing might work and she said that she recommends > getting her into a helmet/band now. since she is 5 months old she > doesn't think that repo will work. i have only been doing it for a > week now but it is working well when she naps and at night. she is > starting to sleep on her tummy better now. and in the carseat we are > using the noggin nest. she is hardly ever on her back during the > day. the only time is when i change her. > so i guess what i want to know from you all is what do you think? > those of you that have repo'ed, about how long did it take to start > seeing results? what would you suggest that i do.....wait and see > how the repo goes for about another month or go ahead in getting > helmet/band? please let me know what you all think. i am so

> stressing right now cause i can't talk to my husband whenever i want > to, i have to wait till he calls so i don't know what to do.> thanks for listening (reading) to me ramble on.> sorry i'm just really stressing right now. > thanks so much, suzanneFor more plagio info

[Guest guest]

It is usually the case that repositioning is not as successful after

about 6 mo of age, though there have been people who have had success

beyond 6 mo. If I were you I would get the ball rolling and be

prepared to band after about 6 mo, but continue with the repo in the

mean time. If you are not happy with her head around 6mo, or if you

decide to band before then, then you will have things in motion. In

the mean time, you can get the Prescription for the band, contact

Insurance and talk to an Orthotist at the Hanger facility. It's very

important that you make sure that the Hanger Ortho has experience

with plagio babies. Hanger will usually give free consults on the

plagio and then when/if you are ready to go ahead with the banding,

they will scan your baby's head and you should have the band within

about 7-14 days.

Good Luck and Let us know what you decide.

Jen

(10 mo), tort resolved, Hanger Band GRAD

(3 years)

--- In Plagiocephaly , " Suzanne " <starre915@y...>

wrote:

> i took my daughter to her ped today about the plagio. and i was

> shocked to talk to someone who said, " get a helmet " she was all for

> it. she said that she just transfered here from savannah, ga and

she

> said that there they treat a lot of kids with plagio. she said that

> here the other doctors in the office don't even know what it is. i

> asked her how she would classify savannah's head, and she said mild-

> moderate. she said that she can also see some facial asemmetry and

> her ears are a bit off. since we will be going back home

(salisbury,

> md) for 2 months on the 18th, she said to take her to a ped there

> asap and get them to refer me to get her evaluated. i just looked

> and there is a hanger right in salisbury!!! i asked her if she

> thought that repoing might work and she said that she recommends

> getting her into a helmet/band now. since she is 5 months old she

> doesn't think that repo will work. i have only been doing it for a

> week now but it is working well when she naps and at night. she is

> starting to sleep on her tummy better now. and in the carseat we

are

> using the noggin nest. she is hardly ever on her back during the

> day. the only time is when i change her.

> so i guess what i want to know from you all is what do you think?

> those of you that have repo'ed, about how long did it take to start

> seeing results? what would you suggest that i do.....wait and see

> how the repo goes for about another month or go ahead in getting

> helmet/band? please let me know what you all think. i am so

> stressing right now cause i can't talk to my husband whenever i

want

> to, i have to wait till he calls so i don't know what to do.

> thanks for listening (reading) to me ramble on.

> sorry i'm just really stressing right now.

> thanks so much, suzanne

[Guest guest]

It is usually the case that repositioning is not as successful after

about 6 mo of age, though there have been people who have had success

beyond 6 mo. If I were you I would get the ball rolling and be

prepared to band after about 6 mo, but continue with the repo in the

mean time. If you are not happy with her head around 6mo, or if you

decide to band before then, then you will have things in motion. In

the mean time, you can get the Prescription for the band, contact

Insurance and talk to an Orthotist at the Hanger facility. It's very

important that you make sure that the Hanger Ortho has experience

with plagio babies. Hanger will usually give free consults on the

plagio and then when/if you are ready to go ahead with the banding,

they will scan your baby's head and you should have the band within

about 7-14 days.

Good Luck and Let us know what you decide.

Jen

(10 mo), tort resolved, Hanger Band GRAD

(3 years)

--- In Plagiocephaly , " Suzanne " <starre915@y...>

wrote:

> i took my daughter to her ped today about the plagio. and i was

> shocked to talk to someone who said, " get a helmet " she was all for

> it. she said that she just transfered here from savannah, ga and

she

> said that there they treat a lot of kids with plagio. she said that

> here the other doctors in the office don't even know what it is. i

> asked her how she would classify savannah's head, and she said mild-

> moderate. she said that she can also see some facial asemmetry and

> her ears are a bit off. since we will be going back home

(salisbury,

> md) for 2 months on the 18th, she said to take her to a ped there

> asap and get them to refer me to get her evaluated. i just looked

> and there is a hanger right in salisbury!!! i asked her if she

> thought that repoing might work and she said that she recommends

> getting her into a helmet/band now. since she is 5 months old she

> doesn't think that repo will work. i have only been doing it for a

> week now but it is working well when she naps and at night. she is

> starting to sleep on her tummy better now. and in the carseat we

are

> using the noggin nest. she is hardly ever on her back during the

> day. the only time is when i change her.

> so i guess what i want to know from you all is what do you think?

> those of you that have repo'ed, about how long did it take to start

> seeing results? what would you suggest that i do.....wait and see

> how the repo goes for about another month or go ahead in getting

> helmet/band? please let me know what you all think. i am so

> stressing right now cause i can't talk to my husband whenever i

want

> to, i have to wait till he calls so i don't know what to do.

> thanks for listening (reading) to me ramble on.

> sorry i'm just really stressing right now.

> thanks so much, suzanne

[Guest guest]

thanks so much. i will try to get things started when i get to md in about 2 weeks. i can't really do anything before then cause she will be with a different ped.

thanks, suzanneJen <ronandjenvelez@...> wrote:

It is usually the case that repositioning is not as successful after about 6 mo of age, though there have been people who have had success beyond 6 mo. If I were you I would get the ball rolling and be prepared to band after about 6 mo, but continue with the repo in the mean time. If you are not happy with her head around 6mo, or if you decide to band before then, then you will have things in motion. In the mean time, you can get the Prescription for the band, contact Insurance and talk to an Orthotist at the Hanger facility. It's very important that you make sure that the Hanger Ortho has experience with plagio babies. Hanger will usually give free consults on the plagio and then when/if you are ready to go ahead with the banding, they will scan your baby's head and you should have the band within about

7-14 days.Good Luck and Let us know what you decide.Jen (10 mo), tort resolved, Hanger Band GRAD (3 years)> i took my daughter to her ped today about the plagio. and i was > shocked to talk to someone who said, "get a helmet" she was all for > it. she said that she just transfered here from savannah, ga and she > said that there they treat a lot of kids with plagio. she said that > here the other doctors in the office don't even know what it is. i > asked her how she would classify savannah's head, and she said mild-> moderate. she said that she can also see some facial asemmetry and > her ears are a bit off. since we will be going back home (salisbury, > md) for 2 months on the 18th, she said to take her to a ped there > asap and get them to refer me to get her evaluated. i

just looked > and there is a hanger right in salisbury!!! i asked her if she > thought that repoing might work and she said that she recommends > getting her into a helmet/band now. since she is 5 months old she > doesn't think that repo will work. i have only been doing it for a > week now but it is working well when she naps and at night. she is > starting to sleep on her tummy better now. and in the carseat we are > using the noggin nest. she is hardly ever on her back during the > day. the only time is when i change her. > so i guess what i want to know from you all is what do you think? > those of you that have repo'ed, about how long did it take to start > seeing results? what would you suggest that i do.....wait and see > how the repo goes for about another month or go ahead in getting > helmet/band? please let me know what you all think. i am so > stressing right now cause i

can't talk to my husband whenever i want > to, i have to wait till he calls so i don't know what to do.> thanks for listening (reading) to me ramble on.> sorry i'm just really stressing right now. > thanks so much, suzanneFor more plagio info

[Guest guest]

thanks so much. i will try to get things started when i get to md in about 2 weeks. i can't really do anything before then cause she will be with a different ped.

thanks, suzanneJen <ronandjenvelez@...> wrote:

It is usually the case that repositioning is not as successful after about 6 mo of age, though there have been people who have had success beyond 6 mo. If I were you I would get the ball rolling and be prepared to band after about 6 mo, but continue with the repo in the mean time. If you are not happy with her head around 6mo, or if you decide to band before then, then you will have things in motion. In the mean time, you can get the Prescription for the band, contact Insurance and talk to an Orthotist at the Hanger facility. It's very important that you make sure that the Hanger Ortho has experience with plagio babies. Hanger will usually give free consults on the plagio and then when/if you are ready to go ahead with the banding, they will scan your baby's head and you should have the band within about

7-14 days.Good Luck and Let us know what you decide.Jen (10 mo), tort resolved, Hanger Band GRAD (3 years)> i took my daughter to her ped today about the plagio. and i was > shocked to talk to someone who said, "get a helmet" she was all for > it. she said that she just transfered here from savannah, ga and she > said that there they treat a lot of kids with plagio. she said that > here the other doctors in the office don't even know what it is. i > asked her how she would classify savannah's head, and she said mild-> moderate. she said that she can also see some facial asemmetry and > her ears are a bit off. since we will be going back home (salisbury, > md) for 2 months on the 18th, she said to take her to a ped there > asap and get them to refer me to get her evaluated. i

just looked > and there is a hanger right in salisbury!!! i asked her if she > thought that repoing might work and she said that she recommends > getting her into a helmet/band now. since she is 5 months old she > doesn't think that repo will work. i have only been doing it for a > week now but it is working well when she naps and at night. she is > starting to sleep on her tummy better now. and in the carseat we are > using the noggin nest. she is hardly ever on her back during the > day. the only time is when i change her. > so i guess what i want to know from you all is what do you think? > those of you that have repo'ed, about how long did it take to start > seeing results? what would you suggest that i do.....wait and see > how the repo goes for about another month or go ahead in getting > helmet/band? please let me know what you all think. i am so > stressing right now cause i

can't talk to my husband whenever i want > to, i have to wait till he calls so i don't know what to do.> thanks for listening (reading) to me ramble on.> sorry i'm just really stressing right now. > thanks so much, suzanneFor more plagio info

[Guest guest]

Hi Suzanne,

Welcome to the group! I just wanted to second everything you've

already been told. Keep us posted on your little one.

--- In Plagiocephaly , " Suzanne " <starre915@y...>

wrote:

> i took my daughter to her ped today about the plagio. and i was

> shocked to talk to someone who said, " get a helmet " she was all for

> it. she said that she just transfered here from savannah, ga and

she

> said that there they treat a lot of kids with plagio. she said that

> here the other doctors in the office don't even know what it is. i

> asked her how she would classify savannah's head, and she said mild-

> moderate. she said that she can also see some facial asemmetry and

> her ears are a bit off. since we will be going back home

(salisbury,

> md) for 2 months on the 18th, she said to take her to a ped there

> asap and get them to refer me to get her evaluated. i just looked

> and there is a hanger right in salisbury!!! i asked her if she

> thought that repoing might work and she said that she recommends

> getting her into a helmet/band now. since she is 5 months old she

> doesn't think that repo will work. i have only been doing it for a

> week now but it is working well when she naps and at night. she is

> starting to sleep on her tummy better now. and in the carseat we

are

> using the noggin nest. she is hardly ever on her back during the

> day. the only time is when i change her.

> so i guess what i want to know from you all is what do you think?

> those of you that have repo'ed, about how long did it take to start

> seeing results? what would you suggest that i do.....wait and see

> how the repo goes for about another month or go ahead in getting

> helmet/band? please let me know what you all think. i am so

> stressing right now cause i can't talk to my husband whenever i

want

> to, i have to wait till he calls so i don't know what to do.

> thanks for listening (reading) to me ramble on.

> sorry i'm just really stressing right now.

> thanks so much, suzanne

[Guest guest]

Hi Suzanne,

Welcome to the group! I just wanted to second everything you've

already been told. Keep us posted on your little one.

--- In Plagiocephaly , " Suzanne " <starre915@y...>

wrote:

> i took my daughter to her ped today about the plagio. and i was

> shocked to talk to someone who said, " get a helmet " she was all for

> it. she said that she just transfered here from savannah, ga and

she

> said that there they treat a lot of kids with plagio. she said that

> here the other doctors in the office don't even know what it is. i

> asked her how she would classify savannah's head, and she said mild-

> moderate. she said that she can also see some facial asemmetry and

> her ears are a bit off. since we will be going back home

(salisbury,

> md) for 2 months on the 18th, she said to take her to a ped there

> asap and get them to refer me to get her evaluated. i just looked

> and there is a hanger right in salisbury!!! i asked her if she

> thought that repoing might work and she said that she recommends

> getting her into a helmet/band now. since she is 5 months old she

> doesn't think that repo will work. i have only been doing it for a

> week now but it is working well when she naps and at night. she is

> starting to sleep on her tummy better now. and in the carseat we

are

> using the noggin nest. she is hardly ever on her back during the

> day. the only time is when i change her.

> so i guess what i want to know from you all is what do you think?

> those of you that have repo'ed, about how long did it take to start

> seeing results? what would you suggest that i do.....wait and see

> how the repo goes for about another month or go ahead in getting

> helmet/band? please let me know what you all think. i am so

> stressing right now cause i can't talk to my husband whenever i

want

> to, i have to wait till he calls so i don't know what to do.

> thanks for listening (reading) to me ramble on.

> sorry i'm just really stressing right now.

> thanks so much, suzanne

[Guest guest]

Suzanne,

Your ped rocks!! Wow. Too bad you are going to MD. Anyway, usually repo is not very effective after 5/6 months. We have had some parents see success past this age but the AAP recommends banding at 5 months if the asymmetry remains. If you wanted to try repo I would go with a very aggressive approach and set a deadline - 1-2 months. You really want to get her in the band ASAP if you are going to go ahead with it. The treatment usually is faster and more effective the younger the infant.

mom to na

DOC Grad

www.thefilyaws.comSuzanne <starre915@...> wrote:

i took my daughter to her ped today about the plagio. and i was shocked to talk to someone who said, "get a helmet" she was all for it. she said that she just transfered here from savannah, ga and she said that there they treat a lot of kids with plagio. she said that here the other doctors in the office don't even know what it is. i asked her how she would classify savannah's head, and she said mild-moderate. she said that she can also see some facial asemmetry and her ears are a bit off. since we will be going back home (salisbury, md) for 2 months on the 18th, she said to take her to a ped there asap and get them to refer me to get her evaluated. i just looked and there is a hanger right in salisbury!!! i asked her if she thought that repoing might work and she said that she recommends getting her into a helmet/band now. since she

is 5 months old she doesn't think that repo will work. i have only been doing it for a week now but it is working well when she naps and at night. she is starting to sleep on her tummy better now. and in the carseat we are using the noggin nest. she is hardly ever on her back during the day. the only time is when i change her. so i guess what i want to know from you all is what do you think? those of you that have repo'ed, about how long did it take to start seeing results? what would you suggest that i do.....wait and see how the repo goes for about another month or go ahead in getting helmet/band? please let me know what you all think. i am so stressing right now cause i can't talk to my husband whenever i want to, i have to wait till he calls so i don't know what to do.thanks for listening (reading) to me ramble on.sorry i'm just really stressing right now. thanks so much, suzanneFor more

plagio info

[Guest guest]

Dear Group,

We are currently facing a legal battle for custody of my 14-yr.-old

stepson, Eli (diagnosed ADHD, possible Asperger's at age 9 when his

attention, motor, social, and behavior problems got him an evaluation).

He's been living with his dad and me for the last 18 months, and we

have been making great progress recovering him, by following much of

the advice gleaned from this list (thank you, again, , for

writing your book!). We're also homeschooling, which has been a

tremendous relief to him (we have a great program here, with many

opportunities for " socialization. " ) Unfortunately, his mom is not

even interested in learning about the concept of recovery, and has

refused to support his diet and supplement protocol every time he's

visited her. (It has been difficult to make consistent progress, this

way.)

However, Eli feels (and looks) so much better than he did when he

moved in (lost 40 pounds, too!), that HE wants very much to stay on

his diet and supplement protocol (although he usually doesn't

remember to take his supplements without help). In fact, he has cited

this as one of the (several) reasons he would rather live with us.

(BTW, it was his idea to move in with us, when he turned 13, and his

mom complied because he was extremely depressed and not going to

school. But apparently she didn't believe he'd stay here . . .)

Now she has refused to send him back from his visit last week, and

has started a legal battle to regain complete control of this poor

kid who has only recently become able to identify and express his

feelings (can you say " emotional trauma " ?). She's trying to enroll

him in yet another new school (I think this would be his 7th or 8th).

One can sum up the difference in our attitudes thus: we want Eli to

be happy, and she just wants Eli. (And she's painting us as devious

" flakes " who have brainwashed her son. It's really sad, and extremely

frustrating!)

Anyway, here's my question: Can anyone tell me if there is any point

in mentioning to " the court " that we are helping recover Eli, or is

this more likely to support her " flake " allegation in their eyes? I

know that there has been media awareness of the thimerisol/mercury

connection (not that we'd necessarily have to mention that), and

there seems to be awareness in autism-related circles of the concept

of recovery, but it is still not mainstream, and we wouldn't want to

jeopardize our situation if it were to be looked on unfavorably.

Anybody have any experience or educated advice?

Thank you all so much for being the open, caring folks you are. (And

any prayers you might want to send our way would be very much

appreciated!)

Very best wishes,

Lalita

[Guest guest]

I would look in the archives for an excellent post from Andy that was written to

help a parent who was trying to get full custody for the same reasons. I

thought there was a lot of good information in there including what to say to

the courts/and what evidence to gather...all kinds of stuff. I just maybe still

have it on my computer, I am incredibly behind in deleting emails. I will try

and search it out. The fact that he is older and wanting to stay with you I

would hope that would help your case. I hope so, he definitely needs to be with

you!!!

Lalita Karst <lalita@...> wrote:

Dear Group,

We are currently facing a legal battle for custody of my 14-yr.-old

stepson, Eli (diagnosed ADHD, possible Asperger's at age 9 when his

attention, motor, social, and behavior problems got him an evaluation).

He's been living with his dad and me for the last 18 months, and we

have been making great progress recovering him, by following much of

the advice gleaned from this list (thank you, again, , for

writing your book!). We're also homeschooling, which has been a

tremendous relief to him (we have a great program here, with many

opportunities for " socialization. " ) Unfortunately, his mom is not

even interested in learning about the concept of recovery, and has

refused to support his diet and supplement protocol every time he's

visited her. (It has been difficult to make consistent progress, this

way.)

However, Eli feels (and looks) so much better than he did when he

moved in (lost 40 pounds, too!), that HE wants very much to stay on

his diet and supplement protocol (although he usually doesn't

remember to take his supplements without help). In fact, he has cited

this as one of the (several) reasons he would rather live with us.

(BTW, it was his idea to move in with us, when he turned 13, and his

mom complied because he was extremely depressed and not going to

school. But apparently she didn't believe he'd stay here . . .)

Now she has refused to send him back from his visit last week, and

has started a legal battle to regain complete control of this poor

kid who has only recently become able to identify and express his

feelings (can you say " emotional trauma " ?). She's trying to enroll

him in yet another new school (I think this would be his 7th or 8th).

One can sum up the difference in our attitudes thus: we want Eli to

be happy, and she just wants Eli. (And she's painting us as devious

" flakes " who have brainwashed her son. It's really sad, and extremely

frustrating!)

Anyway, here's my question: Can anyone tell me if there is any point

in mentioning to " the court " that we are helping recover Eli, or is

this more likely to support her " flake " allegation in their eyes? I

know that there has been media awareness of the thimerisol/mercury

connection (not that we'd necessarily have to mention that), and

there seems to be awareness in autism-related circles of the concept

of recovery, but it is still not mainstream, and we wouldn't want to

jeopardize our situation if it were to be looked on unfavorably.

Anybody have any experience or educated advice?

Thank you all so much for being the open, caring folks you are. (And

any prayers you might want to send our way would be very much

appreciated!)

Very best wishes,

Lalita

[Guest guest]

I am so sorry to hear what you guys are all going through....... You will be in

my families prayers.I do think you need help figuring out exactly what would be

deemed appropriate to a court system and a world that just doesn't get it.( even

if it is just a consultation with someone who has experience) Please keep us up

on how this is going!!!

B.

Mother of Jake-My Hero- 4.5 yrs. old, Diagnosed Autistic January 12, 2006

I Live it, Breathe it, Sleep it, and Dream it

Re: Advice?

Dear Group,

We are currently facing a legal battle for custody of my 14-yr.-old

stepson, Eli (diagnosed ADHD, possible Asperger's at age 9 when his

attention, motor, social, and behavior problems got him an evaluation).

He's been living with his dad and me for the last 18 months, and we

have been making great progress recovering him, by following much of

the advice gleaned from this list (thank you, again, , for

writing your book!). We're also homeschooling, which has been a

tremendous relief to him (we have a great program here, with many

opportunities for " socialization. " ) Unfortunately, his mom is not

even interested in learning about the concept of recovery, and has

refused to support his diet and supplement protocol every time he's

visited her. (It has been difficult to make consistent progress, this

way.)

However, Eli feels (and looks) so much better than he did when he

moved in (lost 40 pounds, too!), that HE wants very much to stay on

his diet and supplement protocol (although he usually doesn't

remember to take his supplements without help). In fact, he has cited

this as one of the (several) reasons he would rather live with us.

(BTW, it was his idea to move in with us, when he turned 13, and his

mom complied because he was extremely depressed and not going to

school. But apparently she didn't believe he'd stay here . . .)

Now she has refused to send him back from his visit last week, and

has started a legal battle to regain complete control of this poor

kid who has only recently become able to identify and express his

feelings (can you say " emotional trauma " ?). She's trying to enroll

him in yet another new school (I think this would be his 7th or 8th).

One can sum up the difference in our attitudes thus: we want Eli to

be happy, and she just wants Eli. (And she's painting us as devious

" flakes " who have brainwashed her son. It's really sad, and extremely

frustrating!)

Anyway, here's my question: Can anyone tell me if there is any point

in mentioning to " the court " that we are helping recover Eli, or is

this more likely to support her " flake " allegation in their eyes? I

know that there has been media awareness of the thimerisol/mercury

connection (not that we'd necessarily have to mention that), and

there seems to be awareness in autism-related circles of the concept

of recovery, but it is still not mainstream, and we wouldn't want to

jeopardize our situation if it were to be looked on unfavorably.

Anybody have any experience or educated advice?

Thank you all so much for being the open, caring folks you are. (And

any prayers you might want to send our way would be very much

appreciated!)

Very best wishes,

Lalita

[Guest guest]

My thoughts and prayers are with you and your family. Please keep us

updated.

Susi

>

> Dear Group,

>

> We are currently facing a legal battle for custody of my 14-yr.-

old

> stepson, Eli (diagnosed ADHD, possible Asperger's at age 9 when

his

> attention, motor, social, and behavior problems got him an

evaluation).

>

> He's been living with his dad and me for the last 18 months, and

we

> have been making great progress recovering him, by following much

of

> the advice gleaned from this list (thank you, again, , for

> writing your book!). We're also homeschooling, which has been a

> tremendous relief to him (we have a great program here, with many

> opportunities for " socialization. " ) Unfortunately, his mom is not

> even interested in learning about the concept of recovery, and

has

> refused to support his diet and supplement protocol every time

he's

> visited her. (It has been difficult to make consistent progress,

this

> way.)

>

> However, Eli feels (and looks) so much better than he did when he

> moved in (lost 40 pounds, too!), that HE wants very much to stay

on

> his diet and supplement protocol (although he usually doesn't

> remember to take his supplements without help). In fact, he has

cited

> this as one of the (several) reasons he would rather live with

us.

> (BTW, it was his idea to move in with us, when he turned 13, and

his

> mom complied because he was extremely depressed and not going to

> school. But apparently she didn't believe he'd stay here . . .)

>

> Now she has refused to send him back from his visit last week,

and

> has started a legal battle to regain complete control of this

poor

> kid who has only recently become able to identify and express his

> feelings (can you say " emotional trauma " ?). She's trying to

enroll

> him in yet another new school (I think this would be his 7th or

8th).

> One can sum up the difference in our attitudes thus: we want Eli

to

> be happy, and she just wants Eli. (And she's painting us as

devious

> " flakes " who have brainwashed her son. It's really sad, and

extremely

> frustrating!)

>

> Anyway, here's my question: Can anyone tell me if there is any

point

> in mentioning to " the court " that we are helping recover Eli, or

is

> this more likely to support her " flake " allegation in their eyes?

I

> know that there has been media awareness of the

thimerisol/mercury

> connection (not that we'd necessarily have to mention that), and

> there seems to be awareness in autism-related circles of the

concept

> of recovery, but it is still not mainstream, and we wouldn't want

to

> jeopardize our situation if it were to be looked on unfavorably.

> Anybody have any experience or educated advice?

>

> Thank you all so much for being the open, caring folks you are.

(And

> any prayers you might want to send our way would be very much

> appreciated!)

>

> Very best wishes,

> Lalita

>

[Guest guest]

> We are currently facing a legal battle for custody of my 14-yr.-old

> stepson, Eli

In most states, a 14yo has a large amount of influence on a judge's

decision on living arrangements.

> Now she has refused to send him back from his visit last week,

Was this a voluntary custody/visitation schedule, or one ordered by

the court?

> Anyway, here's my question: Can anyone tell me if there is any point

> in mentioning to " the court " that we are helping recover Eli, or is

> this more likely to support her " flake " allegation in their eyes?

It will support her unless you can show studies on each of the things

you are doing, any medical testing you have had done that indicates a

reason for doing each thing [diet, supplements], independent reports

[teachers, etc] on his improvement, and his own statements on how he

feels better.

I would not call it " recovery " , I would call it " things that help him

feel better and perform better academically " .

Dana

[Guest guest]

First I'd like to thank Shirley, , , and Susi, as well

as Dana for responding, and so quickly. (Shirley--I counted 14 emails

you sent me privately this morning, all chock full of info, and sent

before 7 AM Pacific time! When my husband saw them, he started

crying, he was so moved that you would take the time and effort to do

that for us. Bless you!)

After reading Dana's post, however, we've realized that the fact that

our lifestyle is more supportive of Eli's physical health and

emotional well-being is actually irrelevant to our case. And since

we're not working with any doctors, haven't done testing, etc., we'll

stay away from the autism issue.

This is all really about what Eli wants. We've known all his life

that living with his mother has been toxic for him in many ways, but

since my husband's opinions about just about everything disagreed

entirely with hers, he felt it was in Eli's best interests to not

fight her on everything. Eli was less than a year old when they

divorced and she moved from northern to southern California, and what

she *really* wanted was for my husband to stay completely out of " her

son's " life. (Except as a wallet. <grin> But he insisted on joint

legal and physical custody.)

Everyone's telling us that since Eli is 14, " the court " will

definitely listen to what he wants, and the fact that he lived with

his mom for 13 years, and now wants to be with his dad is the biggest

factor. We are simply his advocates, here. This is not about what his

dad wants versus what his mother wants. As I said before, we just

want him to be happy. We can't help it if he's happier with us!

Thanks again for everyone's support and prayers. We'll let you know

how it goes! -- Lalita

On May 3, 2006, at 9:17 AM, danasview wrote:

>> Anyway, here's my question: Can anyone tell me if there is any point

>> in mentioning to " the court " that we are helping recover Eli, or is

>> this more likely to support her " flake " allegation in their eyes?

>

> It will support her unless you can show studies on each of the things

> you are doing, any medical testing you have had done that indicates a

> reason for doing each thing [diet, supplements], independent reports

> [teachers, etc] on his improvement, and his own statements on how he

> feels better.

>

> I would not call it " recovery " , I would call it " things that help him

> feel better and perform better academically " .

>

> Dana

[Guest guest]

No problem, it is obvious you are looking out for his best interests!!! I wish

you much luck!!! I finally found the post I was talking about earlier. Here is

the link...hopefully...

http://onibasu.com/archives/am/165102.html

The thread wasn't exactly the same but I hoped the information is still

helpful.

I would agree with not mentioning recovery. I have had many people look at me

strange and even laugh at me when I mentioned that word. Would hate for it to

hurt you in court even though it is the truth.

Lalita Karst <lalita@...> wrote:

First I'd like to thank Shirley, , , and Susi, as well

as Dana for responding, and so quickly. (Shirley--I counted 14 emails

you sent me privately this morning, all chock full of info, and sent

before 7 AM Pacific time! When my husband saw them, he started

crying, he was so moved that you would take the time and effort to do

that for us. Bless you!)

After reading Dana's post, however, we've realized that the fact that

our lifestyle is more supportive of Eli's physical health and

emotional well-being is actually irrelevant to our case. And since

we're not working with any doctors, haven't done testing, etc., we'll

stay away from the autism issue.

This is all really about what Eli wants. We've known all his life

that living with his mother has been toxic for him in many ways, but

since my husband's opinions about just about everything disagreed

entirely with hers, he felt it was in Eli's best interests to not

fight her on everything. Eli was less than a year old when they

divorced and she moved from northern to southern California, and what

she *really* wanted was for my husband to stay completely out of " her

son's " life. (Except as a wallet. <grin> But he insisted on joint

legal and physical custody.)

Everyone's telling us that since Eli is 14, " the court " will

definitely listen to what he wants, and the fact that he lived with

his mom for 13 years, and now wants to be with his dad is the biggest

factor. We are simply his advocates, here. This is not about what his

dad wants versus what his mother wants. As I said before, we just

want him to be happy. We can't help it if he's happier with us!

Thanks again for everyone's support and prayers. We'll let you know

how it goes! -- Lalita

On May 3, 2006, at 9:17 AM, danasview wrote:

>> Anyway, here's my question: Can anyone tell me if there is any point

>> in mentioning to " the court " that we are helping recover Eli, or is

>> this more likely to support her " flake " allegation in their eyes?

>

> It will support her unless you can show studies on each of the things

> you are doing, any medical testing you have had done that indicates a

> reason for doing each thing [diet, supplements], independent reports

> [teachers, etc] on his improvement, and his own statements on how he

> feels better.

>

> I would not call it " recovery " , I would call it " things that help him

> feel better and perform better academically " .

>

> Dana

[Guest guest]

> After reading Dana's post, however, we've realized that the fact that

> our lifestyle is more supportive of Eli's physical health and

> emotional well-being is actually irrelevant to our case. And since

> we're not working with any doctors, haven't done testing, etc., we'll

> stay away from the autism issue.

Sometimes being an attorney means I have to be the bearer of

not-so-good news.

> Everyone's telling us that since Eli is 14, " the court " will

> definitely listen to what he wants, and the fact that he lived with

> his mom for 13 years, and now wants to be with his dad is the biggest

> factor.

For most judges, this will be a large influence.

>>We are simply his advocates, here.

This is what you want to be. No hostility, just present your side of

the dispute as " we want what is best for our son, and right now he

wants to live with us, so we are supporting him in that effort " .

> Thanks again for everyone's support and prayers. We'll let you know

> how it goes! -- Lalita

Good luck!

[PS -- you might want to consider discussing this with a local

attorney, because each state's laws are different, and sometimes even

different by locality and by individual judge. A local family law

attorney can give you the state-specific and inside info.]

Dana

[Guest guest]

Time magazine just did an article on Autism, if that's not mainstream enough, or

if it's not convincing enough, I'd contact the institutes mentioned in the

article and see what information you can glean from them. The MIND Institute

here at has a wealth of information, and you can look them up on the

internet. Good luck.

Re: Advice?

Dear Group,

We are currently facing a legal battle for custody of my 14-yr.-old

stepson, Eli (diagnosed ADHD, possible Asperger's at age 9 when his

attention, motor, social, and behavior problems got him an evaluation).

He's been living with his dad and me for the last 18 months, and we

have been making great progress recovering him, by following much of

the advice gleaned from this list (thank you, again, , for

writing your book!). We're also homeschooling, which has been a

tremendous relief to him (we have a great program here, with many

opportunities for " socialization. " ) Unfortunately, his mom is not

even interested in learning about the concept of recovery, and has

refused to support his diet and supplement protocol every time he's

visited her. (It has been difficult to make consistent progress, this

way.)

However, Eli feels (and looks) so much better than he did when he

moved in (lost 40 pounds, too!), that HE wants very much to stay on

his diet and supplement protocol (although he usually doesn't

remember to take his supplements without help). In fact, he has cited

this as one of the (several) reasons he would rather live with us.

(BTW, it was his idea to move in with us, when he turned 13, and his

mom complied because he was extremely depressed and not going to

school. But apparently she didn't believe he'd stay here . . .)

Now she has refused to send him back from his visit last week, and

has started a legal battle to regain complete control of this poor

kid who has only recently become able to identify and express his

feelings (can you say " emotional trauma " ?). She's trying to enroll

him in yet another new school (I think this would be his 7th or 8th).

One can sum up the difference in our attitudes thus: we want Eli to

be happy, and she just wants Eli. (And she's painting us as devious

" flakes " who have brainwashed her son. It's really sad, and extremely

frustrating!)

Anyway, here's my question: Can anyone tell me if there is any point

in mentioning to " the court " that we are helping recover Eli, or is

this more likely to support her " flake " allegation in their eyes? I

know that there has been media awareness of the thimerisol/mercury

connection (not that we'd necessarily have to mention that), and

there seems to be awareness in autism-related circles of the concept

of recovery, but it is still not mainstream, and we wouldn't want to

jeopardize our situation if it were to be looked on unfavorably.

Anybody have any experience or educated advice?

Thank you all so much for being the open, caring folks you are. (And

any prayers you might want to send our way would be very much

appreciated!)

Very best wishes,

Lalita

[Guest guest]

In a legal battle, you are probably better off concentrating on the fact that

the child wants

to stay with you.

Peace,

Kathy E.

>

> Time magazine just did an article on Autism, if that's not mainstream enough,

or if it's

not convincing enough, I'd contact the institutes mentioned in the article and

see what

information you can glean from them. The MIND Institute here at has a

wealth of

information, and you can look them up on the internet. Good luck.

> Re: Advice?

>

>

> Dear Group,

>

> We are currently facing a legal battle for custody of my 14-yr.-old

> stepson, Eli (diagnosed ADHD, possible Asperger's at age 9 when his

> attention, motor, social, and behavior problems got him an evaluation).

>

> He's been living with his dad and me for the last 18 months, and we

> have been making great progress recovering him, by following much of

> the advice gleaned from this list (thank you, again, , for

> writing your book!). We're also homeschooling, which has been a

> tremendous relief to him (we have a great program here, with many

> opportunities for " socialization. " ) Unfortunately, his mom is not

> even interested in learning about the concept of recovery, and has

> refused to support his diet and supplement protocol every time he's

> visited her. (It has been difficult to make consistent progress, this

> way.)

>

> However, Eli feels (and looks) so much better than he did when he

> moved in (lost 40 pounds, too!), that HE wants very much to stay on

> his diet and supplement protocol (although he usually doesn't

> remember to take his supplements without help). In fact, he has cited

> this as one of the (several) reasons he would rather live with us.

> (BTW, it was his idea to move in with us, when he turned 13, and his

> mom complied because he was extremely depressed and not going to

> school. But apparently she didn't believe he'd stay here . . .)

>

> Now she has refused to send him back from his visit last week, and

> has started a legal battle to regain complete control of this poor

> kid who has only recently become able to identify and express his

> feelings (can you say " emotional trauma " ?). She's trying to enroll

> him in yet another new school (I think this would be his 7th or 8th).

> One can sum up the difference in our attitudes thus: we want Eli to

> be happy, and she just wants Eli. (And she's painting us as devious

> " flakes " who have brainwashed her son. It's really sad, and extremely

> frustrating!)

>

> Anyway, here's my question: Can anyone tell me if there is any point

> in mentioning to " the court " that we are helping recover Eli, or is

> this more likely to support her " flake " allegation in their eyes? I

> know that there has been media awareness of the thimerisol/mercury

> connection (not that we'd necessarily have to mention that), and

> there seems to be awareness in autism-related circles of the concept

> of recovery, but it is still not mainstream, and we wouldn't want to

> jeopardize our situation if it were to be looked on unfavorably.

> Anybody have any experience or educated advice?

>

> Thank you all so much for being the open, caring folks you are. (And

> any prayers you might want to send our way would be very much

> appreciated!)

>

> Very best wishes,

> Lalita

>

>

>

>

[Guest guest]

> Anyway, here's my question: Can anyone tell me if there is any

point

> in mentioning to " the court " that we are helping recover Eli, or

is

> this more likely to support her " flake " allegation in their eyes?

I think I wouldn't talk about recovering autism but focus more on how

you have helped him to heal emotionally and physically.

Praying for all of you.

[Guest guest]

I agree with . You could talk about how much better he feels taking

foods out of his diet that seem to cause pain and problems to his stomach. But

recovery to most, seems flakey. (even though they are dead wrong)

B.

Mother of Jake-My Hero- 4.5 yrs. old, Diagnosed Autistic January 12, 2006

I Live it, Breathe it, Sleep it, and Dream it

Re: Advice?

> Anyway, here's my question: Can anyone tell me if there is any

point

> in mentioning to " the court " that we are helping recover Eli, or

is

> this more likely to support her " flake " allegation in their eyes?

I think I wouldn't talk about recovering autism but focus more on how

you have helped him to heal emotionally and physically.

Praying for all of you.

[Guest guest]

Hi all...

As I think I have posted, I go to see the new Rhumetologist this week.... I

would like some suggestions from those of you that have been thru the mill

with them, such as:

Is there anything specific I should ask?

Is there anything I should take with me?

Helpful advice would be great, because I have to travel a distance so I cant

just go and see them whenever because as of late I am not driving much

either.. And I need answers now... the syptoms and all have gotten so severe

in the last 2 months that it is starting to scare the hell out of me.

(I didn't even drive today when my son had to be rushed in for stitches!)

But I am proud to say for the first time in 14 yrs when he got stitches,

shots, staples ect. I didn't pass out or go off on the Dr or nurse *bg*

Thank you all!

Kerry

[Guest guest]

HI there Kerry

I can recall my 1st visit, I had to get more blood work done and had to take

this test where you take home a couple of containers and collect all your

urine and take it in. YOu also need to list all meds you are on and other

significant health issues you may also have. i am pretty sure they wanted

to know about any surgeries I had, too.

They will also or should give you lots of paper work to fill out and also a

questionnaire about your symptoms.

They will do a physical exam and check your joints and such. I was also

scheduled for x-rays of my hands which were the worse at the time.

You should share with them all the symptoms you can think of and make a list

of questions to take with you about RA. Ask about treatments, cost of meds,

and any other concerns you have, If you have it on paper it will be easier

to remember as you may be stressed meeting a new DR the first time. List

all of your symptoms and maybe even what a day has been like for you with

them. Make sure to let him/her know how this is effecting your life.

Give yourself plenty of time to prepare and be there early if you can.

I rather like my Rhemy's office as the Lab is right across from his

section. You don't have to go anywhere else for the blood work and the

x-rays are also in the same building which makes it easier when you aren't

feeling well.

I hope I have helped you some. Good luck.

Laurie R.

On 5/19/07, ~Kerry~ <kerry-lane@...> wrote:

>

> Hi all...

>

> As I think I have posted, I go to see the new Rhumetologist this week....

> I

> would like some suggestions from those of you that have been thru the mill

> with them, such as:

>

> Is there anything specific I should ask?

>

> Is there anything I should take with me?

>

> Helpful advice would be great, because I have to travel a distance so I

> cant

> just go and see them whenever because as of late I am not driving much

> either.. And I need answers now... the syptoms and all have gotten so

> severe

> in the last 2 months that it is starting to scare the hell out of me.

>

> (I didn't even drive today when my son had to be rushed in for stitches!)

> But I am proud to say for the first time in 14 yrs when he got stitches,

> shots, staples ect. I didn't pass out or go off on the Dr or nurse *bg*

>

> Thank you all!

>

> Kerry

>

>