Anne-Marie,

 

I feel that I must respond to several of your recent statements and accusations to do with me, if only because silence feels like I am agreeing with what you are saying, and that is not at all the case.  However, this is the last I will say of this, if only because you have demonstrated in the past that you are tireless in your ability to come back again-and-again at an issue, and I have neither the time, nor the inclination, to do the same. 

 Well first of all when someone is silent after such issues have been raised, and then they go on to raise anything BUT the issues, I would have thought that it was obvious exactly WHY they were not replying.  One reason would more than likely be because they simply do not have the answers.  If you don’t that is NOT my fault really is it?  Why it would be twisted or interpreted as statements “about” you and accusations towards you would make me wonder about whether you have a problem with ANYONE posting a valid  opinion or issue that opposes your valid opinion.  That is all yours is here—a valid opinion.  I responded with one likewise—though through this cleverly orchestrated smokescreen—I could see that it would so easily be lost exactly why I posted to begin with. 

I’ll get down to the bones of it here and say that had it not been for yourself touting the efficacy of dex the other year, I would have no doubt have done what is best for my child at that time after the four weeks of treatment and put him BACK on his normal medication. 

However, no thanks to yourself and selling dex like it was some wonder drug, I delayed that action by some further 6 weeks.  Not only that but I made a complete fool of myself where my childs Doctor was concerned in INSISTING that dex was THE drug for him to be on.  Then some weeks later after thinking things through, we came off it because of the VALID issues that I have raised within that thread.  Issues that I raised with yourself in email, and had no answer to later.

That was because I am a site owner and needed to research the dex further to be able to write about such on there.  Despite what you may feel---which seems to be that anyone having a question or issues that opposes something you have said---I reserve the right to hold my own views and thing independently of you on issues where it concerns bone advancement, catch up and catch down growth and dex or any other corticosteroid treatment in children!  If you don’t like what I have to say, then that is just YOUR opinion as another parent, NOT the sole authority on advice and help to this message board! 

 

At the end of the day, you seem to think different with the tone of this post.  To such an extent that you now childishly feel the need to a.) downplay any email friendship and buddying thatwe did and use this time now to totally denounce me as anyone with a valid opinion in the way you state below that you have now “revised your opinion.”

At the end of the day, it does not concern me what your opinion is since you are just a parent with a biased view of the issues that we raised due to being starved of any opinion to the opposite it would seem.  The issues that I raised were valid, and if people feel that in this post now that there is absolutely any power in what you feel is right due to your “revised opinion” then it is entirely of their own decision.  However, what I would caution you on is making assumptions with regards to my intentions because at the end of the day, if one has to wirte such in ones defence instead of spending that time broaching the questions I raised, then one has to ask oneself exactly why you are doing that!  It is either that you don’t know the answers and are angry that I raised them here because it has made you wonder about your own childs treatment.  Or because we are no longer in contact as we were and you have some grudge against me posting anything on here that remotely opposes anything you say.

I am sure others will realize here that many people got themselves into trouble through the course of history in the name of many a good cause.  I do not use the message board to hurt people as your post here also seems to imply—or to “get myself into trouble” as you so conveniently at this point in time choose to remind everybody.  I would hop that you will realize how ludicrous that sounds in the face of what occurred in the thread about dex.  Just a normal thread about “a treatment’ regarding “a drug” that any parent with knowledges had the right to contribute to.  Except somehow because it was me that did that, and despite valid points they opposed your view, you take this personally in some way and feel it is just ME choosing to oppose you for pig headidness.  NOT because the questions or issues I raised where valid.

In your own words on many occasion, “Most parents have not got the intelligence to understand what is going on anyway within such debates and know so little about their children treatment that they just switch off.”  I guess that means they are lacking in the ability also to see this for what it is here then?  Someone badgering on about something well AFTER the fact in a vain attempt this time to discredit my efforts as a parent where it comes to advising people or sharing my knowledges?   Doing this by declaring to all that if I am to understand you correctly here, only ever corresponded with me as an individual because you “felt sorry” for me and felt that I was “misunderstood?” How ironic that you now feel when I start ehaving myself and acting intelligently and notably helping other’s that YOU have now “revised your opinion.”  This in NO WAY surprises me at all Carol.  Because as civil as you are ON the board, I have a different impression off it and at this point in time, that is ALL that matters really. 

Should I post in any thread from here on out where YOU are posting, I would suggest that you note, that ANY post that I make disputing anything is solely to dispute something, and not to be turned into this stupid charade whereby you FEEL that because I had the intelligence to dispute something you actually posted, this MUST mean it is because I am somehow doing this to be accusatory or diss you in some way.  As I posted below, it seems to have been lost in the translation somewhere now, the board is about parents networking with eachother about their childrens treatments and ALL the pro’s and cons.  There are many parents giving their kids HCT and accepting all the pro’s and con’s.  So I suggest when someone posts the pro’s and con’s in a post about dex, that that is ALL it is.  Whatever you perceive it to be or cook it up to be on that side of things in your head is up to you.  It has absolutely NOTHING to do with me.  Also, it does not reduce the issues I raised to a pile of useless meaningless questions just because YOU cannot answer them here.

I am painfully aware since sometime ago when a post was removed that your Doctor uses this board and reads threads.  Perhaps you and he can then know that whatever he perceives is the case where Doctor/Patient relationship is concerned here---you need to get your head around the way it should be.  I have it in email and I will NOT discuss it here---but I can say that, yes you rarely did say much about your family, but what you did say was quite enough and even to the point that I was almost disappointed in you.  I did perceive you to be an incredibly strong person and someone in control up to that point and thereafter, I did see you err and are therefore human. 

I am not posting here for you or any other individual to keep battering me into a corner everytime I have valid questions about the treatment and monitoring.  That is why I took the time to raise my knowleges so that I could involve myself actively in any debate or issues  discussing such things as we did.  Up to the point where one person decided to start barraging me with accusations about my oppositional opinions, everything seemed fine.  Whatever you have resolved yourself to now where I am concerned, I would suggest to others here that it was purely because you snapped at me in email at the wrong time for me.  I snapped back and hence things were said on  BOTH sides that offended here.  That is at this point as far as I am concerned not repairable.  However, that has absolutely NOTHING to do with how I post and what I research and any issues I have.  There are many parents using this board whom have differing pinions on how things should be.  We ALL learn from each other here in that sense.  You may think you have all the knowledges that are needed for a childs on dex.  I may feel I have all the knowledges for a child on HCT.  We ALL have our own opinion WHY we do things in life and why we don’t do other things that others do.  We ALL have the right to push that forth without being BADGERED to death and have it implied we are accusatory.

To iron out the accusatory thing here.  You are telling parents dex is this and dex is that.  But in email I had a different impression.  At the end of the day if you want to take that as accusatory when I perceive it as a truth and am just merely reiterating why I FEEL confused then that is entirely YOUR assumption here and that of others.  If they would like I can forward copy of said email to let them see WHY I would be confused when reading your praises of dex.   To accuse someone of being accusatory in those circumstances is not good enough given that both YOU and I know that you did discuss his height at one point and we were comparing Ashley’s height gains to his, and they were most definitely NOT the same.  Irregardless of treatment Carol, a child should grow at a reasonable rate if you are dosing Lupron to take care of the other issue such as bone maturity.  If Nick is not, then I would have a right to assume that despite what you say about growth being ok and bone maturation not advancing, that it is the dex that is slowing the growth down here.  YOU haven’t got anything to convince me it isn’t and either does your Doctor. 

Now I don’t particularly like to discuss the above but you chose to draw it in in your post so I responded.  See Below:     

1. Please do not put words into my mouth.  I have NEVER said anything about dexamethasone being some sort of magic drug, that does not cause side effects.  Like hydrocortisone, or any other glucocorticoid, it most certainly WILL cause side effects, if given in too great doses. The response was NOT to yourself here.  So how the hell could it be putting words into your mouth?  The response regarding this part of the thread was to Sue who seemed to be under the impression that dex was suitable but then did not go on to say why.  It is easier to overdose a child with dex (and especially doing so every single day first thing in the morning—and this is FACT---)than it is to overdose with HCT.  

"Perhaps dex is so magic it starts off high--nut not TOO high---just enough not to causes side-effects--- then it drops slowly in the blood serum  to low in the blood, then as a finale --for dex’s next trick---it magically boosts itself so that the the levels at 3-4am in the morning are adequate and sees the kid through to 6-7am!  

 

If I had my druthers, I would prefer that my son not have to take either hc OR dex.  But given that there is no choice in the matter, the issue to me is simply this: Do I believe that dex can do as good a job as hc, IF it is handled correctly? (Yes.)  Do I believe that it will eliminate all the usual problems that people go through with CAH treatment? Of course not! My son can get undersuppressed and oversuppressed on dex, just like anyone on hc.  The "easier to monitor and treat" part has to do with the fact that, with only one dose a day, compliance is superior and there is much less guesswork---and, therefore, less room for potential error---when raising or lowering doses. Well a.) I don’t think anyone here really would CHOOSE to have their child on these drugs.  So YOU are not the exception here.  However, this does NOT iron out the differences between treating with one or the other.  You do it your way, I’ll do it mine---we will always DISAGREE on what each other is doing.  This does NOT give you the right to profess to all that somehow, now that we don’t see eye to eye for whatever reason, my views are not valid when a verbalize them just because Carol says so.  I don’t think that people are that easily led Carol.  I admit you are knowledgeable but no more so than I or others who come here to help.  Let’s get this in perspective.    

You have only to read these message boards to understand the confusion that can result when trying to figure out how to raise/lower hc doses.  "Which dose do I raise, and by how much?"  "Should I move the time of the doses up or back?  Which ones and when?"  If you are talking about 3 hc doses/day, given at 3 different times, then (if my math is right) there are approximately 27 different ways that you can move things around (3 to the 3rd power), every time you want to adjust a dose.  The number of combinations are even greater, if you take 4 doses a day. How do you know that you are making absolutely THE best choice, unless you systematically compare all the different combinations of sizes and times? You really don’t.....a lot of it is guesswork, hopefully, educated guesswork.  But, no matter how much one tries to micro-manage those 3 or 4 doses, it will never be possible to EXACTLY match a person’s need for cortisol.  Even the studies that compare different dosing regimens usually change only one variable at a time.  NONE of them have systematically gone through every single possibility.

 

You can’t make an exact match with dexamethasone, either.  I never said that you could.  However, with care, I do believe that you can do just as well as 90% of those 27, or more, different hc dose combinations.....but with much less headache.  So, from a purely practical point of view, IF one can achieve the same results with one dose per day, rather than 3 or 4, why WOULDN’T one do it?

 

And giving a single morning dose of dexamethasone is NOT the same as giving a day’s worth of hydrocortisone, all at the same time.  The two drugs have completely different biochemical properties.  This is absolutel rubbish.  Dex peaks within one and half hours.  That means ALL the dose you gave that is to cover for the whole day is at it’s highest.  That means it was like giving a stress dose of HCT by giving the whole of the HCT doses in one place.  I suggest you discuss that with your sons Doctor and have him check the 17 OHP every hour or so after Nicks typical dex dose in the morning here.  Shoving urine in a jug and mixing it all together gives you absolutely NO idea whatsoever that that is occurring.  You need a 24 hour profile.  Also, in doing the above, at that time of day you are giving the child MORE than they really need at the cost of it being around for longer so that at the end of the day there is still hopefully enough of it left around to cover them.  I am sorry that you wish not to delve into that one here or keep insisting that this is not what happens.  Without bloods, how would you know anyway?  You would know nothing.  Oh and he needs to compare what the childs 17 OHP levels are alongside a child on HCT for 24 hours to SEE the difference here. 

 

2.      Why do you find it odd that I have expressed concerns about my son’s growth in the past?  With a very advanced bone age at diagnosis, growth is our biggest issue. I am ALWAYS concerned about my son’s growth.  During periods of POOR growth, I worry.  During periods of GOOD growth, I worry. It would be odd if someone consitently touted dex all over the place and made HCT out to be inferior occasionally when they know little about what it will effect for their child or you have KNOWN them verbalize their concerns. THAT is what I find odd here Carol…not as you so put it, “that you would have AN concerns at all…”  It is the fact that you HAVE had concerns but then go recommending this drug to everyone else when so LITTLE is known from your perspective about the end results and there have been problems already.

3.       

 

However, I think that one needs to evaluate growth, relative to where a child has been, and where he’s yet to go.  When a child is late-diagnosed, like my son, and has been growing at an accelerated pace for a long time, growth will often slow down to below normal, once treatment commences.  If he is being adequately treated, this will happen whether he is on dex , hc, or any other glucocorticoid.  It is called "catch-DOWN growth." 

 

Likewise, a child who has had a history of oversuppression and has been growing very slowly, will end up growing at a quicker pace than normal, once the problem is corrected.  This is called "catch-UP growth." Catch down, catch up…whatever you like to call it, kids will only grow to a certain extent, and if they have reached a bone age advanced, then I doubt very much no matter what you do you can catch it up or down…but whatever you say…let’s see the end result and then we will get into this argument shall we?  Because at this stage, I fail to see either of us reaching an agreement at all when we are talking about something that is not yet complete.

 

In BOTH situations, NEITHER child may be undersuppressed OR oversuppressed.  They may both be optimally suppressed, though one is growing at a SLOWER pace than normal, while the other is growing at a FASTER pace, than normal.  It is the body’s natural system of checks and balances.....a way of evening things out.  However, it would be eminently unfair, as well as inaccurate, to compare two such situations and conclude that a specific glucocorticoid or dosing pattern is all that is responsible for the difference, if indeed, there are differences in the way that each case is being treated.  The situation is much more complex than that.  Well I am sorry I disagree here.  If you feel it is ok to be exposed to higher amounts of something at either end of the day though and feel it will achieve the same thing (and lets hope your right for Nicks sake here—because I am not that selfish that I would wish shorter than normal stature on any kid ) I feel and have a right to feel that a good balance all day round and getting as near to the physiological amount one needs to replace 24 HOURS per day is better than shoving something in in ONE part of the day and getting two vast extremes where hormone levels are concerned.  Before you go berating me here—I suggest you get a 24 hour profile or something and publish the results.  Because without it, it is hardly convincing at all. 

Both catch-down growth and catch-up growth are supposed to improve final height.  However, with catch-down growth, the gratification is delayed.  Until final height is reached, growth can sometimes come in dribs and drabs.  But the way that this whole growth thing is supposed to work is that, as long as one can make gains in height at a more rapid pace than one advances in bone age, one is supposed to end up ahead.  No matter how small the incremental gains in height, and if it feels like Chinese water torture, at times. 

 

Because my son was diagnosed late, with a very advanced bone age (6 years in advance of his chronological age), we are in a situation where we will be seeing catch-DOWN growth, rather than catch-UP growth....in other words, it is not unexpected that his growth rate may be slower than normal.  It is not as if the extra inches that he gained, when his growth was accelerated for so long, are some sort of bonus that he now gets to keep, free-of-charge, just because his CAH is now under control.  Can we expect that he will just grow happily along the 50th %ile line,from hereon in?  I doubt it.  If it were that easy, there would be no more need for new studies or experimental approaches, to improve height in those with CAH.  Not only that, my son would probably end up being 7’-0" tall.  Being late-diagnosed carries with it a penalty, NOT a bonus, where final height is concerned. There is a reason for that.  I am not deluded enough to believe that my son will somehow magically escape this penalty of late diagnosis, no matter how well his CAH is controlled. Well it would seem that your saying here that you expect him to turn out the same height anyway despite whatever treatment that he has.  Not that I really want to also say this but you really are deluded if you think I suggested that you are deluded.  I merely suggested you need to CHECK these things and the issues that I raised by means of blood tests before accusing me of coming up with silly suggestions Carol.  I would have thought it would be pretty important to do that as you only get ONE chance here.  What are a few blood tests to check ad some other profiles…I know  would want them.  Sorry if you feel your Doctor is doing everything…but in my opinion if he hasn’t done those things, he has not “quite”covered everything has he?  No matter how silly it seems…these sall niggly things count. 

This is the same idea why Lupron is supposed to help improve height in those with Central Precocious Puberty.  It slows down bone maturation, while allowing for incremental height gains.  The problem is that height gains can then slow to a painful crawl, as well.  Which is why Growth Hormone is sometimes added back in, in those treated with Lupron.  The whole thing feels sometimes like a catch-22 situation.  You’re damned if you don’t and you’re damned if you do. 

 

My son also has CPP, and is taking Lupron, too.  So---dex or no dex---there are at least TWO other factors which can cause him to grow, at times, abnormally slowly---late diagnosis and treatment with Lupron.

 

While I may understand this idea intellectually, I am by no means immune from "freaking out" about it, during periods when growth seem exceptionally slow.  During these times, am I ever afraid that it is the that dex is making him grow so slowly?  Absolutely. That is why I have made it a special point to look up as many articles on previous uses of dexamethasone with CAH, as possible, ESPECIALLY the ones that warn about the side effects of dex.  But I make sure to read the WHOLE article, and not just the summary or the conclusions, so I can understand the methodology and the approach behind the study.  So far, I have found nothing that contradicts the notion that dex can work, as well as HC, IF given at the correct doses. 

 

Like I said earlier, my son’s overall gains in height have been much greater than his gains in bone age. In that way, the dex has served us very well, by keeping bone age advancement at bay.  As a result, his height prediction has improved significantly, since start of treatment. 

 

So I completely stand behind what I said earlier.  If you do not believe it because you do not understand all the issues at play here, that is not my problem or concern.  You may find it "suspicious," but I am SURE I will worry about periods of poor growth again, in the future, no matter how good or bad the prognosis is at that point.  That is why I used the modifier "cautiously" in front of the word "optimistic," in my earlier post.  I love my son tremendously and we only have ONE shot at getting this growth thing right.....how am I supposed to NOT worry that I am doing the right thing????

 

3.  Re. your statement, "Carol is awe-struck with her Doctor.....She adores her sons Doctor, and adore is an understatement here."  I don’t think "awe-struck" is accurate, but I’ll give you "adore."  In fact, I’ll even add "admire" and "appreciate." I greatly appreciate the fact that my son has a physician who is intelligent, knowlegeable, and can think "outside the box."  I also admire the fact that someone of his stature and with his list of accomplishments can remain down-to-earth; seems to truly care about his patients; and maintains a completely hands-on approach, when it comes to patient care.    What’s there not to like or adore about that?   Really.  Well I am sure he will be OPEN to doing any test if you ever feel you need to check these issues then will he?  Oh as far as I understood it, there was more about this you admired anyway…

   

And as far as you saying, "She never asked any questions as far as I am aware after that...."  Wow.  I have never even met you, Anne-Marie, and---while we may have become friendly in email---I certainly don’t recall you being a party to every conversation I’ve had with my son’s doctor.  In fact, I don’t remember you being present, EVER.  I am sorry to break the news to you, but there are LOTS of things in my life, of which you are not aware.  Just because you don’t know about something, doesn’t mean that it doesn’t exist or hasn’t happened. I addressed this above.  It doesn’t leave a lot to the imagination like I said Why you would want to denounce yourself from me now …though I see I am behaving myself these days.  Perhaps when I was a little less up with the play and easily influenced, it was easier to write of people using the message board and have me fire your bullets.  However, we ALL know that my skills and knwoledges have come a great deal further than that don’t we?  So how apt it is that you now see me as competitive as opposed to an ally.  Good one…actually, I never did like being treated like a puppet. I do have thoughts and ideas of my own and I’d like them recognized in their own right, not to be seen riding on someone else’s tail coats.

 

As a matter of fact, one of the reasons why I like my son’s doctor so much is precisely because he has always been able to answer my questions honestly, directly, and to my satisfaction.  Any other reason???  Another is his wide range of knowledge.  While

it appears that most people’s endos have never brought up the subjects of circadian rhythm or bloodspot profiling (two of your favorite CAH topics, from the sounds of it), he introduced both of those ideas within the first two weeks of treating my son. Yeh well if he understood circadian rythyms that well,m he would have broached the issues I raised before now.  However, I guess not..J As I mentioned earlier, one of his subspecialties within pediatric endocrinology is circadian rhythm, so I have complete confidence that he has considered this aspect of dex treatment, for CAH.  He is also co-author of a much-quoted paper on blood-spot profiling--- for kids treated with hc---so he knows about that, too.  Yes do know this.  Other Doctors have credentials to that I consulted with though…he is not the only one to publish his work amongst them… also other Doctors have done FAR MORE where research circadian rythyms are concerned since he has and that is exactly why I have posted as I have and raised the issues that I have…I don’t think that you would be any LESS thorough, so why should I?

 

Which is another reason why I adore him......he is extremely versatile.  Whatever…yeh yeh…  

 

4.      And, lastly, your statement, "She is a mere mortal---not a Doctor."  Again, please don’t put words in my mouth because I am absolutely certain that I have NEVER said that I was a doctor.  I am sure I would make a terrible doctor....I hate the sight of blood.  And, as for being a "mere mortal," rest assured that I fully agree with you there.  I make mistakes, LOTS of them.  And one of them was believing, when you first appeared on these message boards---and got yourself in trouble almost immediately---that you were just interested in discussing---with an open mind---all the issues surrounding CAH.  Even as you got yourself into trouble time and again, I befriended you and thought it was just because you were  "misunderstood" and did not understand the "customs of the country."  I’ve since revised my opinion.  Again we have out knickers tied in a knot here because to be honest I merely stated that to those that seemed to post making the obvious statements about me “Not being a Doctor” in the past and I did think I would return the statement in this case as it seemed that people felt that you must be.  I mean I realize your knowledgeable here Caro.. but no more so than others coming to the board...think I have said that..and to be honest, I think if you can sit by and watch as people rabbit on about how I am not a Doctor…and have it implied you have the knowledges of one…it is basically AS bad as barraging ME with the statement.   The point I raised is that none of us are.  Though I do know that your Doctor does read the board, I have to say now that no self respecting Doctor would be seen posting on it I think.  That’s because they are too busy and also,  although they may read it and glean information from it, it would appear that they have nothing better to do if they did.   I always perceived it as parents just researching and passing on their knowledges that they have gleaned…so if you don’t mind…I will get on with that as you seem to do and if I do post in a thread where you post, I would suggest it is self flattery to say I would be heel bent on posting just to make your life a misery as this post implies.  It also implies that your knowledges are greater, and I have to say here, this is by no mean the case.  I think we have BOTH taught each other a few things here…despite your revelations.

5.       

 

As I said, I make mistakes.  LOTS of them.  Yeh, well, I’d prefer they were not wasted on me thanks.  You learn by them…I changed.