New Here and Confused

[Guest guest]

Hello. Do most people who are trying have not had success with DAN? I've

been reading old posts and I would appreciate some clarification here as to the

exact differences to approaches here. My son has done the whole Valtrex and

yeast parade thing with no results. He's don many IV chelations and after the

first couple he tried to speak and then he lost this and we've seen nothing with

subsequent chelations--this also is the same story with HBOT at 1.5 and stem

cells. We are about to try IVIG but after that I fear we are lost. I would

really love to get some feedback here. Is Dr. Goldberg the only or best

doctor to go to? What exactly is his story? I've watched his lectures and am

still unsure on how he is different than DAN. Thank you very much.

[Guest guest]

When my son was just diagnosed around age 3, I met a great parent's support

group. They had two speakers, one a DAN! doctor who outright said he didn't

know what he was doing, that he had not recovered anyone and another mom

whose son was a patient of Dr. G's who went from SEVERE to Asperger's (and

she was very happy with that). She wrote a book, " A Real Boy " and after her

presentation we made an appointment with Dr. G and have not looked back.

My son is not yet recovered, but he is 99% healthier than when we started,

fully included in regular classes since kindergarten, talking and making

friends.

For those who have challenging cases..this is a long road. I know from

experience that diet is HUGE in my son's progress. Some of his culprits have

been soy (the protein in soy is almost identical to cow protein), corn,

organic grains and nuts. Anything he wants to eat all the time is usually a

problem.

Kristy

From: [mailto: ] On Behalf Of

georgiasand32

Sent: Wednesday, September 16, 2009 1:31 PM

Subject: New Here and Confused

Hello. Do most people who are trying have not had success with DAN?

I've been reading old posts and I would appreciate some clarification here

as to the exact differences to approaches here. My son has done the whole

Valtrex and yeast parade thing with no results. He's don many IV chelations

and after the first couple he tried to speak and then he lost this and we've

seen nothing with subsequent chelations--this also is the same story with

HBOT at 1.5 and stem cells. We are about to try IVIG but after that I fear

we are lost. I would really love to get some feedback here. Is Dr. Goldberg

the only or best doctor to go to? What exactly is his story? I've

watched his lectures and am still unsure on how he is different than DAN.

Thank you very much.

[Guest guest]

Thank you for your response. So I am wondering if there are those here who

failed with DAN but then finally had a responder to , and, if so, what

exactly were the treatments that turned it around for them? My son has

basically already been on the diet for over a year and we've seen nothing

from this.

>

> Hello. Do most people who are trying have not had success with DAN?

I've been reading old posts and I would appreciate some clarification here as to

the exact differences to approaches here. My son has done the whole Valtrex and

yeast parade thing with no results. He's don many IV chelations and after the

first couple he tried to speak and then he lost this and we've seen nothing with

subsequent chelations--this also is the same story with HBOT at 1.5 and stem

cells. We are about to try IVIG but after that I fear we are lost. I would

really love to get some feedback here. Is Dr. Goldberg the only or best

doctor to go to? What exactly is his story? I've watched his lectures and am

still unsure on how he is different than DAN. Thank you very much.

>

[Guest guest]

I have had more success with and it is slow, but true recovery is a light

at the end of the tunnel.  Did DAN! 18 months and been on 2 years.  I have

argued with Dr.G and thought the med increases were too minimal.  But, after

much intervention and struggle, Noah's immune response is better and he is doing

extremely well.  We did almost everything DAN had to offer and it wore us out. 

G is on the right path. 

From: georgiasand32 <georgiasand32@...>

Subject: Re: New Here and Confused

Date: Sunday, September 20, 2009, 2:28 AM

 

Thank you for your response. So I am wondering if there are those here who

failed with DAN but then finally had a responder to , and, if so, what

exactly were the treatments that turned it around for them? My son has basically

already been on the diet for over a year and we've seen nothing from this.

>

> Hello. Do most people who are trying have not had success with DAN? I've

been reading old posts and I would appreciate some clarification here as to the

exact differences to approaches here. My son has done the whole Valtrex and

yeast parade thing with no results. He's don many IV chelations and after the

first couple he tried to speak and then he lost this and we've seen nothing with

subsequent chelations-- this also is the same story with HBOT at 1.5 and stem

cells. We are about to try IVIG but after that I fear we are lost. I would

really love to get some feedback here. Is Dr. Goldberg the only or best

doctor to go to? What exactly is his story? I've watched his lectures and am

still unsure on how he is different than DAN. Thank you very much.

>

[Guest guest]

welcome to the group. My daughter had brachy and wore a starband starting at age

5 mo. She did very well, and I wouldn't hesitate to do it again. Our doctor gave

us the option of waiting, but I'm glad we didn't take it. By waiting you miss

the faster growth they have while young. Also it is hard to keep them off their

heads, especially when they sleep. If you want to compare shapes look in the

photos section for this group. My daughter is in Our Plagio Babies S/Sydney M.

Here is a link:

Plagiocephaly/photos/album/1577428621/pic/16158696\

44/view?picmode= & mode=tn & order=ordinal & start=41 & count=20 & dir=asc

I cried a little when my daughter got scanned for her band, but honestly it was

much easier than I thought it would be. And within 2 weeks we started to see

improvement, so I was quite happy to continue.

-christine

sydney, 4 yrs, starband grad

>

> Hi there I am new here, have a 5.5 month old son with I guess brachy - his

head is kinda flat in the back and wide, but it isn't uneven and we don't have

any assymetry issues. We were referred to a plastic/neurosurgeon who said she

recommends a helmet but said to try keeping him off the back of his head for a

month before we decide - see if it rounds out at all.

>

> Meanwhile I am obsessing...half of my friends and family say we should get the

helmet, and half say his head is fine and it's a waste of money. Me and my

husband don't know what to think. I don't think his head is all that

abnormal...a little big maybe, but his dad has a big noggin'. I need some more

opinions from people who know what they are talking about. I'll try to post some

pics. His name Is Jack...

>

> Also, I know this is ridiculous, but I keep tearing up thinking about his poor

little head being in a helmet for 4 months. I know it's not that big of a deal

and it will probably fly by, but for some reason it hurts me...I'm scared he is

going to hate it!!

>

[Guest guest]

I know it's a difficult decision.  Just keep in mind that time is of the essence.  For my son, we noticed his plagio at 4 months, and decided to try positioning.  We got him a helmet at 6 months after positioning didn't work.  I wish we had just gotten him the helmet.  The younger they are the more chance for growth and correction with a helmet.  By the time he got his helmet he already had his biggest growth spurt.  So now he has to be in it longer to catch more growth.  To me, the money is worth it.  It can only help, not hurt getting the helmet.  But if you wait it may round out on its own or it may not.  

As far as feeling bad for him being in a helmet I wouldn't worry too much about that.  Many children have a little difficulty adjusting.  Luckily my son had no problem with it at all.  After the adjustment period many kids think of it as a kind of security blanket.  You should see my son when I take his helmet off.  It's so cute how he puts his hands to his head in wonder at where his helmet is:)  

Anyway, good luck in your decision.  On Tue, Mar 16, 2010 at 9:25 PM, mandeejewell <mandeejewell@...> wrote:

 

Hi there I am new here, have a 5.5 month old son with I guess brachy - his head is kinda flat in the back and wide, but it isn't uneven and we don't have any assymetry issues. We were referred to a plastic/neurosurgeon who said she recommends a helmet but said to try keeping him off the back of his head for a month before we decide - see if it rounds out at all.

Meanwhile I am obsessing...half of my friends and family say we should get the helmet, and half say his head is fine and it's a waste of money. Me and my husband don't know what to think. I don't think his head is all that abnormal...a little big maybe, but his dad has a big noggin'. I need some more opinions from people who know what they are talking about. I'll try to post some pics. His name Is Jack...

Also, I know this is ridiculous, but I keep tearing up thinking about his poor little head being in a helmet for 4 months. I know it's not that big of a deal and it will probably fly by, but for some reason it hurts me...I'm scared he is going to hate it!!

[Guest guest]

Hi!! Welcome to the group!! I know what you are going through. My daughter has plagio and some brachy. When we were referred for a helmet at first I was mortified!!! I cried on the way home. I couldn't stand the thought that she might be uncomfortable and frankly I couldn't stand the thought of my beautiful baby with this band on her head. We also (and still do!!!) got conflicting "advice" (opinions!!!) from family and friends about what to do. We sought a second opinion from another specialist who also said we should get it.

At first I didn't think her flat parts were so bad until I developed more of an eye for it. Some friends and family said they didn't see anything. (My mother-in-law was deadset against it until she went to Cranial Tech with us for the evaluation, now she goes to every appt with us!)

I am now SO HAPPY we are doing it. She has had the DOC band for 5 weeks and it has NEVER bothered her. At least not as far as I can tell, her disposition is still wonderful and once or twice at the beginning she would touch it when I was changing her diaper but otherwise she is fine with it. When she got the imaging done, I started tearing up because they have to put a nylon over her head and she looked like a bank robber (!!!) from a movie and I just got emotional!!! But she is so FINE with it. And we saw major changes within the first week. The changes at 5 weeks are remarkable and her already beautiful face is even more so! I have heard of a few babies on here who had some issues adapting but for the most part it seems they do fine.

And for my worries about seeing my little love in that "dumb" band?............Seriously, she looks adorable in it!!! It really took only one day and I was so ok with it. So many people really know what it is for (I didn't believve it before but they really do) and the others I just explain. And I forget it is on now. Time is flying and it will be off in no time. (And I will be worrying about it not being on - ha ha!)

So I know what you are going through and trust me, it is worth it and you will all be fine. Make the decision that you and your husband are happy with. Good luck to you!!!!

mom to Willow 8months

From: mandeejewell <mandeejewell@...>Subject: New here and confusedPlagiocephaly Date: Tuesday, March 16, 2010, 7:25 PM

Hi there I am new here, have a 5.5 month old son with I guess brachy - his head is kinda flat in the back and wide, but it isn't uneven and we don't have any assymetry issues. We were referred to a plastic/neurosurgeo n who said she recommends a helmet but said to try keeping him off the back of his head for a month before we decide - see if it rounds out at all.Meanwhile I am obsessing... half of my friends and family say we should get the helmet, and half say his head is fine and it's a waste of money. Me and my husband don't know what to think. I don't think his head is all that abnormal...a little big maybe, but his dad has a big noggin'. I need some more opinions from people who know what they are talking about. I'll try to post some pics. His name Is Jack...Also, I know this is ridiculous, but I keep tearing up thinking about his poor little head being in a helmet for 4 months. I know it's not that big of a deal and it will

probably fly by, but for some reason it hurts me...I'm scared he is going to hate it!!

[Guest guest]

Hello and welcome.My daughter (4.5 mos) was diagnosed with severe plagio on Monday by the neurosurgeon and we are going to move forward with the Star band as soon as possible. He did suggest that we try repositioning, however it's not realistic at this age to constantly keep her off of her back and to repeatedly turn her head through the night (although I've tried night after night!)  I am a little nervous about the helmet and if she'll be comfortable, but I think after a little period of adjustment she'll get acclimated to wearing it and the time will be over before we know it. 

My main goal is getting it on her as soon as possible in hopes that she won't have to wear it as long. If I didn't get the helmet I would literally obsess over this every hour of the day! I know once her hair grows in, it will probably make her head shape appear less asymmetrical, however, I don't want to look back and regret not doing everything I can to try to help her early on in the process. I hope this helps.

Daughter, Sahana, plagio, getting fitted

[Guest guest]

It is your call, of course. But our situation is very similar to yours, and I

highly recommend the helmet.

Our first ped acknowledged a moderate brachycephaly problem at around 4 months,

and said that a helmet would be appropriate. Because we were moving, we had to

wait, and the extra delay just frustrated me. After a check by a plagio/brachy

specialist (at Cincinnati Children's Hospital), she was referred at 6 months for

a Hanger Helmet. (The brachycephaly improved only very slightly on its own

between months 4 and 6.) She started wearing the helmet at 6 1/2 months.

My daughter has only been in the helmet for 5 weeks, but the improvement is

already quite noticeable. Hanger has indicated that she'll probably be in the

helmet between 3 and 4 months. She tolerates it with only very minimal fussing

-- no crying at all. It's clearly not painful! At most there may be the

tiniest amount of pressure in the few days when it's tightest, which is before

the next round of foam is removed. A little infant tylenol twice a day takes

care of it. (She isn't comfortable sleeping on her stomach now, so she has

returned to sleeping on her back. But in the helmet it's not a problem, and she

sleeps fine.) Get it soon, and it will be over far before his first birthday.

Just FYI, we went with Hanger because it is the only facility in the vicinity.

However, the most significant determinate of the quality of care at a facility

is how many children's helmets they do there -- experience is key. Being right

near a children's hospital, this Hanger facility does many -- we see other

children in the waiting room each time we go. But, unlike CT, Hanger handles

other types of orthodics. So if the Hanger near you primarily handles adults

with other issues, then they may not be a good choice.

Very mild cases probably aren't noticeable once there is hair. But otherwise, I

suspect that even when people don't automatically connect a child with

plagio/brachy, they think that a child looks " a bit odd/off " .

>

> Hi there I am new here, have a 5.5 month old son with I guess brachy - his

head is kinda flat in the back and wide, but it isn't uneven and we don't have

any assymetry issues. We were referred to a plastic/neurosurgeon who said she

recommends a helmet but said to try keeping him off the back of his head for a

month before we decide - see if it rounds out at all.

>

> Meanwhile I am obsessing...half of my friends and family say we should get the

helmet, and half say his head is fine and it's a waste of money. Me and my

husband don't know what to think. I don't think his head is all that

abnormal...a little big maybe, but his dad has a big noggin'. I need some more

opinions from people who know what they are talking about. I'll try to post some

pics. His name Is Jack...

>

> Also, I know this is ridiculous, but I keep tearing up thinking about his poor

little head being in a helmet for 4 months. I know it's not that big of a deal

and it will probably fly by, but for some reason it hurts me...I'm scared he is

going to hate it!!

>

[Guest guest]

Two more thoughts:

(1) Our daughter was at 90% (on whatever scale they use for brachycephaly);

80-83% is normal. If your son's measurement is below 90%, it's probably quite

minor. But if it's well above 90%, it is definitely noticeable.

(2) Pre-helmet, my sister kept saying that it wasn't a big deal and " she is

beautiful no matter what " (as caring people will say). But after a month in the

helmet (only down to 88%), my sister saw my daughter again without the helmet

on, and she admitted that my daughter's head looked much more normal now.

>

> Hi there I am new here, have a 5.5 month old son with I guess brachy - his

head is kinda flat in the back and wide, but it isn't uneven and we don't have

any assymetry issues. We were referred to a plastic/neurosurgeon who said she

recommends a helmet but said to try keeping him off the back of his head for a

month before we decide - see if it rounds out at all.

>

> Meanwhile I am obsessing...half of my friends and family say we should get the

helmet, and half say his head is fine and it's a waste of money. Me and my

husband don't know what to think. I don't think his head is all that

abnormal...a little big maybe, but his dad has a big noggin'. I need some more

opinions from people who know what they are talking about. I'll try to post some

pics. His name Is Jack...

>

> Also, I know this is ridiculous, but I keep tearing up thinking about his poor

little head being in a helmet for 4 months. I know it's not that big of a deal

and it will probably fly by, but for some reason it hurts me...I'm scared he is

going to hate it!!

>

[Guest guest]

Hi there,I felt exactly the same way until this morning when my daughter Lucia was fitted with her starband. I was agonizing about it, stressing about how uncomfortable and unhappy she would be, because she is a VERY fussy baby in general. She is 7 1/2 months now, we noticed the brachy at 4 months and it didnt get better with positioning so we decided on the helmet. She also has a big head for her age and it seems that this was preventing her from rolling over, which she is still working on. Putting the helmet on is probably the hardest part but once she has it on she doesn't even notice it. Im SO relieved and happy i decided to go through with it. Our orthotist has been doing this for 10 years and has had rave reviews from others, so im optimistic that things will go well. From what i understand, a good orthotist with lots of experience is the MOST important criteria for where you should go. Thankfully our insurance covered 100% (with a $20 co pay) so it was better financially for us too. Good luck!!Patty

From: mandeejewell <mandeejewell >Subject: New here and confusedPlagiocephaly Date: Tuesday, March 16, 2010, 7:25 PM

Hi there I am new here, have a 5.5 month old son with I guess brachy - his head is kinda flat in the back and wide, but it isn't uneven and we don't have any assymetry issues. We were referred to a plastic/neurosurgeo n who said she recommends a helmet but said to try keeping him off the back of his head for a month before we decide - see if it rounds out at all.Meanwhile I am obsessing... half of my friends and family say we should get the helmet, and half say his head is fine and it's a waste of money. Me and my husband don't know what to think. I don't think his head is all that abnormal...a little big maybe, but his dad has a big noggin'. I need some more opinions from people who know what they are talking about. I'll try to post some pics. His name Is Jack...Also, I know this is ridiculous, but I keep tearing up thinking about his poor little head being in a helmet for 4 months. I know it's not that big of a deal and it will

probably fly by, but for some reason it hurts me...I'm scared he is going to hate it!!