Regression?

[Guest guest]

I think the first question really are a few questions:

what was her protocol?

What pressure where the treatments?

Does she take any meds?

Did she have any other therapies with her HBOT?

Best Wishes,

Ed Nemeth

At 09:20 PM 4/12/2002 -0500, you wrote:

>My question is for the group. My daughter has had

>over 150 treatments in both mono and multi chambers.

>She improved much on the second set of 40 treatments.

>We have seen regression in spasticity and speech.

>when we can we get a couple in New York at Brewster.

>Why would she be regressing so much?

>We have done 40 then 6mths later another 40 and so on.

>then 12 then just 2. All this since 1999.

>What could be the problem?

>

>rhonda mom of a 16 year hemi cp

>

>

>

[Guest guest]

Just a guess here, am relatively new to this myself, but I wouldn't think the

enzymes would have " kept working " that long, but maybe the gut healing had

started and it took that long off of the enzymes for the gut to deteriorate back

to

where it was before you started them. I would try to get him on them again if

you could. I can certainly understand the not liking to take them though, my

son started on the biomedical interventions very late because I just couldn't

get things into him. Since he can now swallow caps it is SO much easier and

we're definitely making progress.

Laurie

> Hi,

>

> I had my son on Peptizyde and Zyme Prime for about two months

> starting in January. I thought I saw improvement in the first few

> weeks and then I wasn't sure if I was noticing any improvement. We

> took him off the enzymes and I didn't notice any changes until now.

> He's been off the enzymes for 3 months and in the last couple of

> weeks I'm noticing behaviors that I haven't seen in a while. He's

> fighting with his brother more, he's seems to be obsessing over

> things again, and I noticed him rocking back and forth.

>

> Could the enzymes have kept working for a few months and then

> stopped working? I'm not sure if I should start them up again. (He

> really hated taking them).

>

> Please let me know any imput you have. Thanks, Liz

[Guest guest]

Hi FD, I wondered how you and your daughter were doing! It's almost always

a good sign when someone " disappears " around here LOL :-)

Welllllll, summer is a long way off. OTOH pdocs all seem to have their own

ideas of med holidays, if so how long and so on. My dd's doctor does not

recommend drug holidays and asked me plainly when I asked, why on earth

would I want to fool around with something that is working??? A good point,

if you ask me. Of course it is a different story if your dd herself is

wanting to try to come off the meds. At her age, of course her wishes have

got to be part of this kind of decision. IMO, now is a good a time as any

to find another pdoc who is not a horror story, and the new one may not be

stuck on the idea of taking yearly medication breaks.

20mg Prozac is a low dose for OCD. At one point my little girl was on 80mg!

If you are seeing some OCD creeping back, I think it's time to consider

increasing, not decreasing or coming off the Prozac. The holidays are

fun-stressful-some combo of both of these for everyone, and not surprisingly

our OCD kids are more likely than most to feel this.

Even if your dd is no longer in formal therapy, I hope you are keeping up

the ERP lifestyle at home! On the spot exposures, paradoxical humor and

general deflating of OCD and its dumb worries and rituals is a great way to

cut a worsening trend short. I hope your other dd (the not-sick one LOL) is

staggering around the house like she's at death's door, all in the name of

helping her sister :-)

Happy holidays to you! Remember is your kid and you know her

best...don't feel pressured to take advice from *any* doctor, much less one

you consider " horrible " , if it goes against your better judgment.

Kathy R. in Indiana

----- Original Message -----

From: " Lovin Life " <thiin_white_duke@...>

> Hello folks,

>

> Good to be back (?). Actually, not really, but I'm here again none-

> the-less. I see a few old friends still posting (Kathy & Pam) and

> bless you for keeping up the good work!

>

> I see some postings about others regressing after a while, and some

> if it sparks my interest. Our dd (12 years old now) has done 1000x

> better since she's been on Prozac (20mg) for over a year now. I

> don't know what state we would be in if it weren't for the meds.

> One thing for sure, going through adolescence is much better if you

> have a healthy state-of-mind!

>

> Unforunately, OCD rears it's ugly head once in a while just to let

> us know it's still hanging around. Recently she's begun her typical

> seasonal (wintertime) fear of her sister being sick. It reminds us

> all too much of days of old. She used to bring up her fear in " I

> know she's sick, , are you sick? You said your stomach hurt -

> oh no, now I'm so worried! " In the past, her fears have been short

> lived, fleeting just for the moment. But lately they've been

> lingering around far too much. Tonight she wouldn't eat her

> mother's birthday cake because her sister helped her blow out the

> candles, and of course she's convinced her sister is sick (not a

> thing wrong with her).

>

> She is majorly going through puberty. We stopped seing our

> psychologist, mostly at her recommendation. simply does

> not have a strong enough desire to get better so the therapy was

> really a waste of time and money. Thank God for the meds! But our

> psychiatrist (a horror story unto itself) wants to try taking her

> off the meds this summer since it's been a year. However, she's

> showing signs of regression, not progression! We're terrified of

> what's going to happen.

>

> Anyone have any experiences or advice?

>

> Cheers,

> FD

[Guest guest]

Thanks so much for everyone responding. To answer some - you're

right, no one knows her better than we do. I believe that if we

stay on the current track, we will not want to go off the meds.

However, our doc is really on what I would consider to be the fringe

of competence. She isn't willing to move up to what might be

considered standard doses for most meds. I remember trying Zoloft

and she said that 50mg was the max she would give her. That,

despite what our therapist, who consulted with another pdoc, and

other said was already a riduculously low amount for OCD. And you

are also right, that now is the time to search for a new doc. I

know we will be going through the same old problem of finding any

compent doc that takes our insurance.

Things are going very well at school. She's blossoming into a

beautiful girl and having typical adolescent issues. She's making

straight A's, which she even did while OCD was at it's height in the

hardest school year she's had to date (6th grade middle school).

Right now her OCD is confined to the fear that her sister is sick.

Gone are the days of ritualistic hand washing, bathing (literally)

in hand sanitizer, and obsessing and freaking out any time somone

was sick, or even rumored to be sick. I wish I could say it was

behavior therapy, but I have to say it's 100% meds. No, we don't

entertain OCD thoughts and we blame her issues on OCD, not her. But

OCD is so stubborn that all of this goes in one ear and out the

other. " , you understand that even though is not

sick, IF she were it not be the end of the world.... " , " SO YOU'RE

SAYING SHE'S SICK????? " " No, I just said that IF she were...OH I

KNEW IT, SHE'S SICK! " Telling her that really is sick is like

breaking news of a death in the family to another family member.

To answer the question about behavior therpay. In my own

experiences battling anxiety and panic attacks, it was always easier

for me to " get through the moment " than to try to do something about

it long term. It would have been a lot of work, and I just accepted

that I was that way (although I hated it), and I didn't have any

concept of what life would be like without the anxiety. So I didn't

have any faith in therapy, nor was I interested in trying it (still

aren't). But thanks to God, the meds I'm on now (low dose of

Celexa) and life's circumstances have made me so much better. I

think is in the same boat I was. Therapy was just going

through the motions and while she admits she doesn't like being like

that, she has no interest in changing, which is very frustrating (a

chip off the old block!).

I'm going to look for a new doc, we're going to insist on staying on

the meds (provided we don't have a new doc), and we will continue to

treat OCD like a pest, but not punish her. Keep the comments

coming, they really help!

P.S. I wish I could help more in this group. While I can seriously

sympathize with everyone, our own experience is that the only thing

that helps our daughter is meds. I know CBT works, but like our

therpist agreed, she's not going to get better unless she wants to

get better.

Cheers,

FD

> >

> > Hello folks,

> >

> > Good to be back (?). Actually, not really, but I'm here again

none-

> > the-less. I see a few old friends still posting (Kathy & Pam)

and

> > bless you for keeping up the good work!

> >

>

[Guest guest]

My son began taking Zoloft when he was 5 (will be 9 in Feb.) I hated

giving it to him, he seemed so young. It worked wonders! We decided

to take him off this last June to see if he grew out of the symptoms

(possiblity he could) Well sadly enough they returned. I resisted

for quite a while to put him back on meds. simply because I was

thinking if he's going to have to deal with these " issues " his

entire life then let's learn how to deal with them WITHOUT meds. In

late October we decided he was suffering too much and I began to

feel quilty because I was the one being resistant to giving him the

Zoloft. Now we are beginning to see improvements. He was stable when

we took him off so I felt very comfortable doing so. I would

question taking your daughter off since she is experiencing

difficult times. The summer is a few months away but I would ONLY

take her off if YOU and your daughter are comfortable with it.

Explain all that to your doctor and if they have any sense they

should listen and keep her on the meds. Therapy didn't work with my

son because I felt like he was too young when we went, age 5. Also

it was talk therapy which I learned after going for 2 years (still

paying for it) it isn't the way to treat OCD.

Good luck finding a new doctor - that's on " the list " . I hate that

insurance gets to choose who we go see.

> > >

> > > Hello folks,

> > >

> > > Good to be back (?). Actually, not really, but I'm here again

> none-

> > > the-less. I see a few old friends still posting (Kathy & Pam)

> and

> > > bless you for keeping up the good work!

> > >

> >

>

[Guest guest]

I've learned over the years that sometimes it's worth

getting a second opinion and/or changing doctors.

Also, if medications are helping your daughter there's

nothing wrong in continuing with them. I've read CBT

isn't always 100% successful. Sometimes meds are

necessary (or even a combination of meds with

therapy). Don't worry about being more helpful, by

sharing your experience you ARE helping.

>

> I'm going to look for a new doc, we're going to

> insist on staying on

> the meds (provided we don't have a new doc), and we

> will continue to

> treat OCD like a pest, but not punish her. Keep the

> comments

> coming, they really help!

>

> P.S. I wish I could help more in this group. While

> I can seriously

> sympathize with everyone, our own experience is that

> the only thing

> that helps our daughter is meds. I know CBT works,

> but like our

> therpist agreed, she's not going to get better

> unless she wants to

> get better.

>

> Cheers,

> FD

>

__________________________________________________

[Guest guest]

I've learned over the years that sometimes it's worth

getting a second opinion and/or changing doctors.

Also, if medications are helping your daughter there's

nothing wrong in continuing with them. I've read CBT

isn't always 100% successful. Sometimes meds are

necessary (or even a combination of meds with

therapy). Don't worry about being more helpful, by

sharing your experience you ARE helping.

>

> I'm going to look for a new doc, we're going to

> insist on staying on

> the meds (provided we don't have a new doc), and we

> will continue to

> treat OCD like a pest, but not punish her. Keep the

> comments

> coming, they really help!

>

> P.S. I wish I could help more in this group. While

> I can seriously

> sympathize with everyone, our own experience is that

> the only thing

> that helps our daughter is meds. I know CBT works,

> but like our

> therpist agreed, she's not going to get better

> unless she wants to

> get better.

>

> Cheers,

> FD

>

__________________________________________________

[Guest guest]

Hi there FD,

Welcome back! I would be very careful about taking your daughter off her

medication this summer unless she has learned to deal with her OCD through CBT

with a therapist. Since you mentioned that she quit therapy, this doesn't

sound like she has learned enough about exposure and response prevention to be

able to handle OCD on her own. Medication does nothing to cure OCD, only treats

it as long as the medication is taken. So stopping the medication will cause

her OCD to return to its previous strength. The psychiatrist must know this.

Being on meds for a year means only that she has been better for a year. If you

or the doc want her to stop the medication, then you should get her back into

therapy with a good therapist and hope that she cooperates.

I hope you are experiencing just a temporary uptick in her anxiety, which

is completely understandable at this time of year. She may settle back down

again after the holidays. If not, you might discuss with her psychiatrist

whether her dosage is adequate. If she is going through puberty, then her body

is

growing and changing at a rapid rate and she may need to adjust her medication.

We did several changes and adjustments as my daughter went through puberty,

but she has been stable and happy since then.

Best wishes,

in NV

[Guest guest]

FD, well it does seem like has come a LONG way if she's

mostly concerned with just and germs/illness now. Does she

mind being hugged/sitting close to others now?

I also vote she should stay on medication and good luck in your

search for another doctor.

I'm asking this about you - you mentioned Celexa, a low dose. That's

what was on for almost 2 years. He was taking 50 mg. Do you

notice a tiredness with it?? That was his main side effect. He's

been off it since May and is doing well, but I thought the tiredness

would go away. I think his body is just sooo used to 2 years of

afterschool naps that he just still needs them.

[Guest guest]

You'll see a lot of ups and downs like this during chelation. We've

actually had cycles where he's been " off " in behavior until the next round.

Some adults have reported that they finished a round but knew it wasn't in a

good place. The next round brought them back.

My son started off being better off round than on. Then later, he was

better on round than off.

Just keep a sharp eye out for yeast . . . some of these questions I don't

know if any of us ever figure out.

Barb

[ ] Regression?

We did our first round of chelation last weekend with DMSA/ALA for

lead and other metals. He did excellent. Made huge changes. Was like a

different kid. This lasted up until about yesterday. I noticed he has

become fussy, defiant, and getting into things like he is 2 instead of

3.5 years old. Like pouring sugar all over the house. Dumb things he

hasn't done in a long time. He is on GSE and Probiotics and all

supplements on Andy list for Chelation. We are getting ready to do

round two tomorrow.

Could regression just be that it is time for another round? I know

that lead comes from the bones following a round. So I am thinking he

has released some into his body and is acting prechelation. Any

thoughts?

=======================================================

[Guest guest]

> Could regression just be that it is time for another round? I know

> that lead comes from the bones following a round. So I am thinking he

> has released some into his body and is acting prechelation. Any

> thoughts?

My son was like this. He was much better " on " ALA than " off " . I

eventually determined that it was because the ALA was helping to

eliminate minerals, and my son was mineral toxic. Once I added IP6 [a

demineralizer], things improved tremendously.

Dana

[Guest guest]

I've heard that regression doesn't happen often, but it makes sense that it would be more common in younger babies. If you do stop, just make sure that you do your best not to spend too much time on the back or previous flat spot side.

That being said, I did think that I might be seeing regression in my daughter's head, even though she was older at the time. Because our situation was unique (she was almost 21 months old) and her head growth had slowed down, I resorted to putting the helmet back on her at night for another month. I wouldn't advise this without an orthos approval unless growth is as slow as my daughter's was. I could clearly see that there was still room for growth and we had no red spots the whole time.

Is the ortho not able to adjust the helmet to get rid of the marks?

Regression?

Hi,I was wondering if anyone had seen the plagio come back after helmet therapy was stopped? And if so, was the helmet completed successfully to begin with or was it stopped early? At what age did plagio come back? We're 2.5 months into a helmet and want to stop--we're satisfied with the outcome even though its not "perfect"--the helmet is leaving worse marks and even an abrasion that took 3-4 days to disappear--that's why we want to stop early. Thanks for the help!K

[Guest guest]

Hi,

I'm sorry. I've seen it happen on this list, but I don't recall it

happening at 14 months, and I think it is rare. Are there special

circumstances with your daughter that would make regression more

likely? Could it be that you thought her head looked really good, but

now that you've had the helmet off, you see there is still some flat

area? I think that could happen. Can you try to encourage her to

sleep on her back?

Good luck and let us know what happens.

Kathy, mom to , over 18 months

kara_baltuch wrote:

Hi,

My daughter is 14 months old and has had her helmet since May 31st. She

only wore it at night and naps because she also wears glasses and we

could not get them to work together. She has made great progress and

her head was looking really round. About 2 weeks ago I decided I was

going to stop with the helmet. It seemed to be getting too small. I

spoke with the Ortho and they said that if I was happy that was fine.

The past few days I have been noticing her head is looking flat again.

I'm feeling guilty now for stopping the helmet. I did not think this

would happen. She usually sleeps on her stomach but now she seems to be

on ther back a lot. She also is not sleeping well which I'm wondering

has anything to do with not wearing the helmet anymore. Did anyone else

experience flattening after they took the helmet off?

We have our exit scan at the Ortho Monday. I'm hoping we don't have to

start all over.

Kara

[Guest guest]

Kara,

My daughter was 21 months old and I thought I saw the same thing so I put it back on her at night. I honestly don't know if it was real or just an illusion. Maybe something about how the hair is without a helmet or something? I'm not sure. I put it back on her at night without the ortho's knowledge, but always watching for signs it was getting too small. If you are concerned, maybe you could try leaving it on during sleep for a couple of more months. Or, maybe do every other night. Or, you could just risk it. I felt like I didn't want to risk it, given my daughter's age. I knew that it would be too late to fix it if there was any regression. With only night and naps to deal with, the same may be true for you.

Discuss the concern with your ortho and see what the scan shows. It's possible that we are just seeing things. That's what everyone else told me, but I felt that I had spent months looking at her head and I knew it so well.

Having said that, I took steps and have been able to get additional correction since her graduation. She wore it at night for another month and then we did alternative treatments (which we are still doing). Good luck with your decision.

, mom to , 27 months

STARband grad May 2009

Chiro and CST

land

Regression?

Hi,My daughter is 14 months old and has had her helmet since May 31st. She only wore it at night and naps because she also wears glasses and we could not get them to work together. She has made great progress and her head was looking really round. About 2 weeks ago I decided I was going to stop with the helmet. It seemed to be getting too small. I spoke with the Ortho and they said that if I was happy that was fine. The past few days I have been noticing her head is looking flat again. I'm feeling guilty now for stopping the helmet. I did not think this would happen. She usually sleeps on her stomach but now she seems to be on ther back a lot. She also is not sleeping well which I'm wondering has anything to do with not wearing the helmet anymore. Did anyone else experience flattening after they took the helmet off?We have our exit scan at the Ortho Monday. I'm hoping we don't have to start all over.Kara

[Guest guest]

Hi Kara -

When my son graduated from his first DOC Band (at 7 months), he measured at 9mm cranial vault asymmetry. We debated about a second band and decided not to do it. For the next seven weeks, we looked at his head and finally decided we were stopping treatment too soon, so I scheduled an appointment with Cranial Tech to talk about a second band - and for him to be re-measured. Just before our appointment to be re-measured, I came across some photos from the day we graduated from band #1...and he appeared significantly rounder then. I thought maybe I was imagining it, but my husband agreed (which was unusual...I'm the really technical one!) Anyway, when they re-measured him six weeks after graduation from band #1, he measured at 10mm cranial vault asymmetry. Those were hand measurements by two different people, so I know there's some room for error there - but we definitely thought we could see a visual difference. My son was still sleeping exclusively on his back when he graduated from the first band. We just graduated from band #2 yesterday and whatever regression may have taken place in the 7 weeks between bands is resolved now.

Jill

Cade's mom (11months, DOC Band #2, 09.29.09 - 12.11.09)

Austin, TX