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June,

I had a niece that was diagnosed with ADD and was put on Ritalin, and soon

started having tics and everyone thought she had TS. Luckily her mother is a

Psychologist and had good resources and took her off the Ritalin, the tics

stopped immediately afterward. Ritalin is commonly known to cause tics. Her

story wasn't the only one I heard like this. Glad is doing well, I

bet that is a big relief for you even though you had to go through so much.

Things will get better, try to let go of the frustration and anger and be

happy it isn't TS, which is very scary. Take care, Vicki, Md

>From: June <CADDEPT@...>

>

>

> Just so you know, evidentally does NOT have TS. After I took him

>off of Adderall, all violence & hostility went away...but, he was so groggy

>he'd sleep all day at school, then at home, so I cut his clonidine in half.

The tics were probably caused by the Adderall back in '95 in the first place

when we were

>told he had TS. Or as Sue pointed out, it culd have been the Ritalin -

>he's always been on one or the other since he was 4. Soooooo, he doesn't

>have any symptoms of TS. I'm certainly glad we uncovered this but still so

>angry at all the lost time he's had and the heartache we still experience:

>he's so far behind in school and carrying alot of emotional baggage.

>

>June

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Hi June,

Thanks for the update, poor a clear case of overmedication

because the powers that be did not know how to control him. My prayers for

you both, and the continuation of his good health and schooling. You have

been through hell, I am so glad has you for a grandma.

Hugs,

Marta

>From: June <CADDEPT@...>

>

>

> Just so you know, evidentally does NOT have TS. After I took him

>off of Adderall, all violence & hostility went away...but, he was so groggy

>he'd sleep all day at school, then at home, so I cut his clonidine in half.

> I weaned him off of Anafranil & couldn't see any changes, (so don't know

>what it was used for 'cept maybe w/Adderall) and started him on

>Depacote...after month or so I began reducing his Orap (for TS). Guess

>what? He's now off of ALL Orap and there's not 1 tic!!!! The tics were

>probably caused by the Adderall back in '95 in the first place when we were

>told he had TS. Or as Sue pointed out, it culd have been the Ritalin -

>he's always been on one or the other since he was 4. Soooooo, he doesn't

>have any symptoms of TS. I'm certainly glad we uncovered this but still so

>angry at all the lost time he's had and the heartache we still experience:

>he's so far behind in school and carrying alot of emotional baggage.

>

>June

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  • 2 weeks later...
Guest guest

In a message dated 4/11/00 11:47:24 PM Eastern Daylight Time,

lyme-aidegroups writes:

<< Anyhow, thank your everybody for your prayers and thoughts. They probably

did some good; I didn't go into a rage and tear the place apart; I just

informed them what was going to happen, and politely did it when they

wouldn't re-alter the schedule back to the original. >>

Way to go , I am glad that you put them in their place....that was

totally unacceptable what they did to you !!! I am sorry that you and Rose

had to go through all the pre-getting ready stages only to have what happened

happen. Keep us updated on what you decide to do. I think that that Dr. and

the hospital owe you a big apology.

Your Lyme Friend,

in VA

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In a message dated 4/11/00 11:47:24 PM Eastern Daylight Time,

lyme-aidegroups writes:

<< Anyhow, thank your everybody for your prayers and thoughts. They probably

did some good; I didn't go into a rage and tear the place apart; I just

informed them what was going to happen, and politely did it when they

wouldn't re-alter the schedule back to the original. >>

Way to go , I am glad that you put them in their place....that was

totally unacceptable what they did to you !!! I am sorry that you and Rose

had to go through all the pre-getting ready stages only to have what happened

happen. Keep us updated on what you decide to do. I think that that Dr. and

the hospital owe you a big apology.

Your Lyme Friend,

in VA

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  • 1 year later...
Guest guest

After My son did his first round he seemed to do better as well. Seems like we have seem improvements after each round. I haven't done that many . On 3 now. I always wonder when these bad rounds might come cause I hear people saying things get worse before they get better??? So far that has not been the case. I use pretty low doses compared to some . I got a call from the physical therapist who said my son called her by name, said hello and asked to go with her to therapy. She said she was amazed as he normally does not address her or try to engage her. kelly

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,

Awesome! Increasing socialization skills.

S

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

After My son did his first round he seemed to do better as well. Seems like

we have seem improvements after each round. I haven't done that many .

On 3 now. I always wonder when these bad rounds might come cause I hear

people saying things get worse before they get better??? So far that has not

been the case. I use pretty low doses compared to some . I got a call from

the physical therapist who said my son called her by name, said hello and asked

to go with her to therapy. She said she was amazed as he normally does not

address her or try to engage her.

kelly

***

[This message has been truncated.]

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,

I was glad to hear about your positive experience with chelation in

the first few rounds. It's very encouraging. Would you mind sharing

info about your protocol? What dose and how often are you giving

it? How much does your son weigh? What supplements does he take?

Thank you for the info and wishing you continued success with the

chelation.

Mireille

> After My son did his first round he seemed to do better as

well. Seems

> like we have seem improvements after each round. I haven't done

that many .

> On 3 now. I always wonder when these bad rounds might come cause

I hear

> people saying things get worse before they get better??? So far

that has

> not been the case. I use pretty low doses compared to some . I

got a call

> from the physical therapist who said my son called her by name,

said hello

> and asked to go with her to therapy. She said she was amazed as he

normally

> does not address her or try to engage her.

> kelly

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Mireille:

I do 20 25 mg DMSA every four hours for cycles of 3 days . Off

days vary . I wait 11 days at least. Vitamins I have been using for

a long time are

COD Liver OIL A & D ( Kirkmans )

B's Sometimes ( Ecological Formulas ) or Liquid

C Buffered, Plus chewables

E Tocterinols Mix

Minerals Citramin II (Needs.Com)

Calcium/Mag suppliments Chewables

Some EFA's like ground flax,ground sunflower seeds, sesame, I'm

Trying things like Hemp oil, Evening Primrose.

Plus he is on a special diet GF/CF.

things I try to add in are Probiotics, cal/mag butyrate

Epsom salt baths

DMG Sometimes

Nothing to major, but then again not all that minor either . It took

me a long time to get it right for my own son. trying things still.

It is never ending really.... always looking to see how he reacts to

things , but this is what I try to do. Thats about it. I think.

kelly

-

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  • 8 months later...

Pam,

This is so great. How wonderful the doctor sees the progress, too.

Merry Christmas to you!

> is doing very well! For the most part, we are GFCF but much

> more relaxed about it. He new and most favorite infraction--a

double

> cheeseburger from Mc's! I give him one of each of the HNI

> enzymes and there is absolutely no regression. He goes around

> telling people he can have cheese now because he takes " enzyme

> vitamins " . The other day, he saw me eating something I don't

> normally eat and asked me, " Mom, did you take your enzymes so you

can

> eat that? " So not to confuse him, I said, " Yes I did " .

>

> His new thing now is that he is making up stories (in other words--

> lying). Last Friday night we took (my brother's girlfriends

> little boy)with us to Wal-Mart. went up to a complete

stranger

> and told her he a new brother! His teachers at school says he is

> telling them some tales, too.

>

> I took him to see his DAN! dr earlier this week. He and

> carried on quite the conversation. had good eye contact,

too.

> The first thing he asked the Dr was , " Where is the room where you

> get shots? " I guess he wanted to make sure he did not set foot in

> that room! The dr told me he thinks he is doing great. The dr

> looked at me and said, " You are getting your son

back! " ..........YES!!

>

> Thanks for asking about him.

>

> Pam Novak

> Mom to -age 5 dx PDD

> HNI since 6/2001

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  • 4 months later...
Guest guest

I wonder if you should try the AFP Peptizyde. Back when I started

my son on the enzymes he still had a big problem with

yeast and the enzymes made his already irritated rectal area

more raw. I spoke to Dr. Houston about the AFP Peptizyde, and

he said some kids can be sensitive to the papain in the regular

peptizyde thats why the AFP is available. When I asked him on

the phone he mentioned the kids that were sensitive had more

irritation and redness in that area. Also before was getting

the enzymes in his juice whether or not he was having a meal.

Now we only give it to him with meals or before a meal. Now that

he is taking the AFP I haven't noticed a problem with increased

rawness and irritation - he still has the yeast issues though so

some irritation from that which we are working on.

(s mom)

> Last November, I posted on this board as I tried the Houston

enzymes

> on my 6yo son . He was diagnosed with Asperger's

and we were

> on the enzymes for 18 days. We were not GFCF at the time. I

thought

> it would be interesting for everyone to hear what has happened

since.

>

> We stopped the enzymes in early December and his behavior

went from

> truly horrible (on the enzymes) to being just bad which was his

normal

> up and down behavior we had seen since we adopted him

from a Russian

> orphanage at 13 mos.

>

> In January, we took him to the Pfeiffer Treatment Center in

> Naperville, ILL. They did a whole range of biomedical tests

and

> found:

> - low zinc to copper ratio

> - low calcium/magnesium

> - dysbiosis and high bacteria in gut

> - high histamine

>

> Starting in Mid-Feb, after the test results came back, they had a

> phone conference with us and recommended the following:

>

> Supplements:

> Morning - Vit C 250 mg, Pyridoxine HCL 300 mg,

Pyridoxal-5-Phosphate

> Monohy 50 mg, Methionine (L) 200 mg, Chromium Picolinate

100 mcg, 1/2

> tsp Cod Liver Oil, 1/2 tsp liquid Cal/Mag

>

> Evening - Vit C 500 mg, Vit E Succinate 200 IU-E, Methionine(L)

400

> mg, Zinc Piccolinate 45 mg., 1/2 tsp liquid Cal/mag

>

> For gut bugs they put him on Biocidin and Pro-Flora.

>

> Starting in Mid-March, after a conference with their dietician, we

> started a GFCF diet.

>

> I'm honestly not sure which of all this program is having the

effect

> but we have seen a fairly dramatic improvement in his

behavior. He

> still has some sterotypies (chest pounding, weird noises) but

they are

> greatly reduced and we are in the process of working out a

> self-management ABA program that will help control these.

>

> The most significant improvement is the mood is stable, he no

longer

> giggles hysterically for no reason, he isn't hyper, he is able to

> attend in classes and is much calmer. Before, I was trying to

find a

> special Asperger's class for him here in PA (we recently moved

from

> Seattle area to PA). Now I fully believe he will be able to

function

> in a regular classroom with some ABA support.

>

> I'm not sure exactly what happened with the enzymes but it

could be

> that his gut was in such bad shape and he had yeast/bacteria

problems

> that were made worse by the enzymes. I know this isn't the

case for

> many kids but I think it may have been for Matt. After we have

been

> on GFCF for six months to a year, I may give the enzymes

another

> trial. The GFCF diet is definitely worth the effort but if we could

> do the enzymes, it would, of course, make life much easier!

>

> Actually, we haven't even started the M-Protein Promoter that is

the

> big thing at Pfeiffer. We will start that in mid June. They

> suggested that we get him " cleaned up " prior to starting that.

>

> I guess the point I'm making here is that, if the enzymes don't

have

> the desired effect, it doesn't mean that the child will not still

> benefit from a GFCF diet. And once they are stable and the gut

is

> " cleaned up " , it may be worth a try to have another go at the

enzymes.

>

> Ruth (Matt's Mom)

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Ruth,

Thanks for the update and I'm glad you've seen some improvements! I

have several questions about your program and will email you.

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  • 1 month later...
Guest guest

Holly,

Wow - it sounds like if doing wonderful! I can't believe you are

already so close to graduation - that's awesome!

I know that it is so hard to find time for those stretches. Will daycare help

you with that? Maybe they could do some stretching once a day?

Marci (Mom to )

Oklahoma

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Holly:

Thanks for your great update.....I'm so happy to read of all these

great successes we've had lately. What terrific news.

Try your best to keep up with the neck exercises! Sounds like you're

on a pretty tight schedule. You're doing great though!

Hope to read of 's big Graduation next month or 2 ! Let us

know & keep us updated.

Debbie Abby's mom DOCGrad

MI

> Just wanted to drop a quick post to update everyone on (5

1/2

> mos.), who received his DOC-Band a month ago today. At his appt.

> today, we were told that he has significantly improved and that

he'll

> probably only need to wear his helmet for 4-6 more weeks! And we

were

> told at his casting that his plagio was severe! We're a definite

case

> study for early diagnosis and treatment. The only hang-up we're

> experiencing now is finding time to do the neck exercises.

> ( doesn't have tort but does have a tight neck muscle on

> his left side.) We're supposed to do them 3-5 times a day, but

> realistically I've only been able to do them once in the evening

> during the work week. Our mornings are so hectic trying to get

> ourselves and ready for work, and we're typically only home

in

> the evenings for about 45 min. before goes to bed. I'm

trying

> to do the exercises 5 times a day on the weekends, though. Hope

> everyone else is doing well.

>

> Holly &

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Holly what wonderful news that is so great-graduation already woo hoo. You

must be thrilled. Heck I was home and found it hard to remember to do the

exercises- I know mornings are hectic but maybe you could do them first thing

when waking up - I always did them at diaper change- and that made it

easier change the diaper stretch the neck is in daycare during the

day- if so show them one simple exercise to do and see if they can do it with

diaper changes and then at night do one set when you get home and then one

right before bed. If you can add one more set this week maybe in 2 weeks you

can add more. They are so important so just keep trying and congrats- cant

wait to see photos! Post some soon.

Beck

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Holly,

Great news on the improvement for so far!!! I know how you feel about those neck exercises, it is a huge chore and its not always easy, especially with a squirmy child! was dx at 3 months, and I found that at night, when he was asleep, was the best time I could get those deep, long stretches in. I really only was able to do the same, maybe a little in the morning, and then overkill at night during the week. I also showed my daycare how to hold him, and to try a few exercises with my guidance, as well as to make sure they kept him midline as much as possible. But, whenever you can sneak them in, the better. I also found going to a pt 2x a week, albeit only for 1/2 hour sessions, helped to sneak in a little extra. It is so worth it for you to continue to do your best, and believe me when I say that at 5 1/2 months, this is the greatest chance at stretching him you'll have! I don't know what I would have been able to do had been older and more active! Good luck and keep plugging away- your doing a great job! I will attach a link that shows a great hold for anyone that wants to hold - make them help him too!

' Mom

Stretches/ Holds

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  • 2 weeks later...
Guest guest

Kerri:

That is TERRIFIC news! I'm sure you're very very relieved. Glad to

hear a good ins. story for a change.

You're right, the casting is far more difficult on mom & dad than on

baby. will be pretty p.o.'d during the casting,but she'll most

likely quickly recover & be back to her old self once it's done in no

time. Especially with a warm bath afterward.

Good luck....let us know how it goes!

Debbie Abby's mom DOCGrad Chicago (they're GREAT!)

MI

> Well, good news! CT really came through for us and got our

insurance company

> to cover treatment at the in-network, 90% rate. Including the

deductible, we

> will only have to pay $525.00. I am soooooo relieved.

>

> 's casting is this Friday, July 19. Of course, I am the one who

is now

> scared to death. I know it's only minutes and she will be no worse

for the

> wear, but you all know how it feels, I'm sure. Worse for Mom and

Dad.

>

> Thank you again, everybody...for all your support and caring. I

have

> definitely found the right place.

>

> Kerri & Baby (Chicago)

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Kerri,

That is terrific news about your insurance, I am so happy for you!!

Good luck on Friday with the casting. You are absolutely right that

it is much harder on Mom and Dad. Just remember that the casting

won't hurt . If she cries its because she royally ticked off,

but all will be forgiven in a matter of minutes! Let us kjnow how

it goes!

Niki

Kaylie & Danny (STAR grads)

Phila., Pa

> Well, good news! CT really came through for us and got our

insurance company

> to cover treatment at the in-network, 90% rate. Including the

deductible, we

> will only have to pay $525.00. I am soooooo relieved.

>

> 's casting is this Friday, July 19. Of course, I am the one who

is now

> scared to death. I know it's only minutes and she will be no worse

for the

> wear, but you all know how it feels, I'm sure. Worse for Mom and

Dad.

>

> Thank you again, everybody...for all your support and caring. I

have

> definitely found the right place.

>

> Kerri & Baby (Chicago)

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Kerri,

Hooray!!! I'm glad that your insurance company is going to pay. This is

fantastic news!

The casting is definitely worse for mom and dad, but it is quick and painless

and will be over before you know it!! Let us know how it goes!

Marci (mom to )

Oklahoma

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Kerri,

Great news on the insurance covering 90%! Don't worry too much about the

casting- it really does sound (and look) horrible, but it is such a quick

experience and the babies are usually all smiles after- you may get lucky and

have a sleeping baby or a calm child the whole way through- some have! Good

luck and let us know how it goes! (try to bring a musical toy that she can

hear- bottle, paci, any comfort item that may help!).

' Mom

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  • 4 weeks later...

Dear ,

I haven't heard of your syndrome but I have a clot in my portal vein that could prevent me from transplant. It seems so ironic to have a liver disease that affects your platelets so much and yet to have clotting problems. I hope a liver comes to you soon, too. We sound like we have some common issues.

I know we aren't supposed to talk religion and many folks do but I think this group is accepting of each of us and what gives us the strength to carry on - that is each person's own miracle of faith. Look for beauty around you in the kind act of a friend, a poem or even a view of something that touches you, hang on to these things and don't stop analyzing, we need that, too :)

Take care, . Keep in touch and let us know how you are. We all come from different spaces joined by some commonality and need each other for support.

Thinking of you,

Amy

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  • 3 weeks later...

,

That is so great that didn't have to go through the casting process!

Let us know when it comes in how its going. I am not very familiar with

STARbands, so I'll leave that to the expert moms/dads out there dealing with

that, but we also had to go in weekly for adjustments since the rate of

growth is much more rapid at that age.

Stickers are great too because a lot of parents like to change up their

themes- I was not as creative! Awesome news that the plagio road has been

pretty smooth sailing for you and the ins. is paying 80%- it takes some of

the worry off doesn't it?!!! Keep us posted on 's visit this Friday-

I hope to hear great news :)

' Mom

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Good for you -

It sounds like youa re so fortunate to have everything

go so smoothly!

& Vivian

--- kllyblngr <tkbel@...> wrote:

> Hello,

> I don't know if you all remember me... I am ,

> 's mommy

> (fairly new to the board). got his scan for

> his STARband

> almost 2 weeks ago and we go to pick up his band on

> Friday! The scan

> went well, so much better than having to go through

> a casting. He

> was really squirmy at first (they have to stay

> perfectly still for

> 1.5 seconds), but then he actually fell asleep and

> they were able to

> get a perfect scan on the 3rd try. The ortho told

> us to be prepared

> for 2 bands, he said he would set up a course of

> treatment until

> is 1 year old (he is 1 week shy of 6 months

> now). Is that

> unusual for him to know already that he will

> probably need 2 bands?

> He said we would evaluate after he was done with the

> first and decide

> then whether to proceed. We were told that we have

> to go back for

> weekly adjustments. I asked him about decorating

> the band and he

> said that he doesn't recommend painting because of

> the risk of

> getting paint on the inside of the band that would

> irritate baby's

> skin. I have already bought a bunch of stickers to

> decorate with.

> But the best part about this whole process is that

> we had none of the

> difficulties that a lot of people on this board

> seemed to have. We

> got the Rx for the band with no problem, and our

> insurance is

> covering 80%, no problem. I feel so fortunate! I

> am also very

> grateful to the people on this board. Because of

> you all, I knew

> exactly what to expect, and the whole thing was less

> stressfull...

> THANKS!

>

>

> Mom to and (plagio/tort)

> NY

>

>

__________________________________________________

- We Remember

9-11: A tribute to the more than 3,000 lives lost

http://dir.remember./tribute

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Congrats on getting banded!! I hope things progress very well and look forward to updates. Also, that is wonderful that your insurance gave you no hassles. I am sure it makes things a lot easier for you. What insurance do you have, by the way? We have Sagamore and the lady I talked to said the doc would have to submit something in writing stating needs helmet therapy and we would know within a day or so if we are approved for it. If anyone has had any experience with Sagamore I would really appreciate any advice you can offer.

Taryn

's mom

Update on

Hello,I don't know if you all remember me... I am , 's mommy (fairly new to the board). got his scan for his STARband almost 2 weeks ago and we go to pick up his band on Friday! The scan went well, so much better than having to go through a casting. He was really squirmy at first (they have to stay perfectly still for 1.5 seconds), but then he actually fell asleep and they were able to get a perfect scan on the 3rd try. The ortho told us to be prepared for 2 bands, he said he would set up a course of treatment until is 1 year old (he is 1 week shy of 6 months now). Is that unusual for him to know already that he will probably need 2 bands? He said we would evaluate after he was done with the first and decide then whether to proceed. We were told that we have to go back for weekly adjustments. I asked him about decorating the band and he said that he doesn't recommend painting because of the risk of getting paint on the inside of the band that would irritate baby's skin. I have already bought a bunch of stickers to decorate with. But the best part about this whole process is that we had none of the difficulties that a lot of people on this board seemed to have. We got the Rx for the band with no problem, and our insurance is covering 80%, no problem. I feel so fortunate! I am also very grateful to the people on this board. Because of you all, I knew exactly what to expect, and the whole thing was less stressfull... THANKS!Mom to and (plagio/tort)NYFor more plagio info

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Thanks for the reply. Our insurance is Preferred Care. It covers

the band as " durable medical equipment " . I was so relieved that the

majority of the cost would be covered because they are charging $2800

and they say will need 2 bands! Whew, what a relief!

Mom to and (plagio/tort)

> Congrats on getting banded!! I hope things progress very

well and look forward to updates. Also, that is wonderful that your

insurance gave you no hassles. I am sure it makes things a lot

easier for you. What insurance do you have, by the way? We have

Sagamore and the lady I talked to said the doc would have to submit

something in writing stating needs helmet therapy and we would

know within a day or so if we are approved for it. If anyone has had

any experience with Sagamore I would really appreciate any advice you

can offer.

>

> Taryn

> 's mom

> Update on

>

>

> Hello,

> I don't know if you all remember me... I am , 's

mommy

> (fairly new to the board). got his scan for his STARband

> almost 2 weeks ago and we go to pick up his band on Friday! The

scan

> went well, so much better than having to go through a casting.

He

> was really squirmy at first (they have to stay perfectly still

for

> 1.5 seconds), but then he actually fell asleep and they were able

to

> get a perfect scan on the 3rd try. The ortho told us to be

prepared

> for 2 bands, he said he would set up a course of treatment until

> is 1 year old (he is 1 week shy of 6 months now). Is

that

> unusual for him to know already that he will probably need 2

bands?

> He said we would evaluate after he was done with the first and

decide

> then whether to proceed. We were told that we have to go back

for

> weekly adjustments. I asked him about decorating the band and he

> said that he doesn't recommend painting because of the risk of

> getting paint on the inside of the band that would irritate

baby's

> skin. I have already bought a bunch of stickers to decorate

with.

> But the best part about this whole process is that we had none of

the

> difficulties that a lot of people on this board seemed to have.

We

> got the Rx for the band with no problem, and our insurance is

> covering 80%, no problem. I feel so fortunate! I am also very

> grateful to the people on this board. Because of you all, I knew

> exactly what to expect, and the whole thing was less

stressfull...

> THANKS!

>

>

> Mom to and (plagio/tort)

> NY

>

>

>

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You are welcome...you know I was looking through my husband's insurance book and they cover DME also but I don't know if the band will be considered that. I hope it will but if they won't cover it we will still get it done regardless. I bet that is a relief.

Taryn

's mom

Update on > > > Hello,> I don't know if you all remember me... I am , 's mommy > (fairly new to the board). got his scan for his STARband > almost 2 weeks ago and we go to pick up his band on Friday! The scan > went well, so much better than having to go through a casting. He > was really squirmy at first (they have to stay perfectly still for > 1.5 seconds), but then he actually fell asleep and they were able to > get a perfect scan on the 3rd try. The ortho told us to be prepared > for 2 bands, he said he would set up a course of treatment until > is 1 year old (he is 1 week shy of 6 months now). Is that > unusual for him to know already that he will probably need 2 bands? > He said we would evaluate after he was done with the first and decide > then whether to proceed. We were told that we have to go back for > weekly adjustments. I asked him about decorating the band and he > said that he doesn't recommend painting because of the risk of > getting paint on the inside of the band that would irritate baby's > skin. I have already bought a bunch of stickers to decorate with. > But the best part about this whole process is that we had none of the > difficulties that a lot of people on this board seemed to have. We > got the Rx for the band with no problem, and our insurance is > covering 80%, no problem. I feel so fortunate! I am also very > grateful to the people on this board. Because of you all, I knew > exactly what to expect, and the whole thing was less stressfull... > THANKS!> > > Mom to and (plagio/tort)> NY> > >

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