In answer to your question about seeing changes on this dosing regime, Yes big differences as I posted in another thread somewhere below?

 

4 yrs ago Ash was raised in his hct dose from 12.50mg to 15mg.  This I presume was because he had outgrown the 12.50mg dose.  Therefore it needed to be a little higher.  When I say little, I as a parent would hope that they would just raise it as the least amount they could possibly do.  I.e. just enough to suppress the adrenals and stop escape, but not so much that it would affect bone growth as it did and all the side-effects.  However, if you look at his dose as it was then at 12.50mg and take the dose rise that they put it to and work out the percentages that they raised the dose it was a large 20% of his total daily dose.  It did affect his growth and eventually his scans were coming back as 21/2 to 3 years immature on one scan from my looking at them here now.  As all children’s levels of CAH are different and they would need anything from 10-20mg then a kid on 20mg per day would have just been having a 10% dose rise with 2.50mg.  My point in most posts (because it doesn’t appear clear) is that some kids are not going to respond too well to such a dose increase.  Like I said my doctors probably thought that asking me to split tablets into four at that point may be ludicrous.  To me it is, especially when there is suspension that a pharmacist can make that enable one to go up just 0.5mg or 1mg as opposed to 2.50mg as they did.  It was some time until they would see the results of such a raise, in fact it was a few years in fact and although Ashley did grow, it was very slow and he has always been a great deal smaller than other kids in his class at school.  Not to mention that he was often emotional and this as we know is a side effect of too high a dose of corticosteroids.  Such side-effect would not apply for a child on a dose fine tuned closer to their needs except perhaps occasionally when they have illness and the parents has double dosed to err on the side of safety and it was a little too much.  One has no choice in that situation but to double or triple dose and consequently it is better that the child is a little stroppy for a few days than put them at risk of an adrenal crisis.  At s

 

At some point two or so years later a consultant was approached in Auckland and he flew out and assessed Ashley and calculated (I say calculated as he is not God and can only guestimate what is needed) that Ashley needed less HCT.  Of course the coincidence is that 2.50mg is the norm here in dose increments up or down (not 1.25mg as I have seen herein) so he dropped it to 12.50mg.  As far as I understood it, this was to be followed up, because I would certainly of kicked up a fuss back then as I was I remember quite nervous about the cut back.  I could work out that he had grown some so his needs must have now extended beyond the 12.50mg, but I knew that the 15mg was too much.  I assumed that they would tests regularly until things were safe to be left three month at the most.  However, I was told to come back three months later with him.  At that appointment the doctor just did height, weight and the usual physical checks.  The height on his chart just for three months had took a steep pitch upwards.  The doctor declared the reduction a success but failed to check what the 17OHP was and did no blood tests.  He said in fact after I had worriedly said Ash has adult BO in his armpits that smells like his Dad’s that he expected ALL boys of Ash’s age to get smelly!  I as the parent felt this was wrong.  My husband had not come along to the appointment that day.  I was several months pregnant and did not want to argue.  I wish I had.  We went back 6 months later as he recommended and had blood tests.  It took three weeks for hi to ring with the results and he said that we needed to raise Ash’s dose to 15mg.  That’s all.  No double dosing.  When I later obtained blood tests results I figured that at that point his 17OHP was 336*nmol/L.  The normal range here is 110-50nmol/L.  You have the ng/dl there but this would give parents here a rough idea what they were dealing with at that time.  We increased to 15mg and took him for bloods a month later.  The levels came back worse three weeks later.  Then 426*nmol/L they rang us to say pick up this script for dex at 00.25mg.  Yes that dose is equivalent to 20mg HCT but they went to that dose to then stomp on the adrenals as they enlarge when they are hyperplasic and need to regress in size and they need to silence them.  This took a month as we were promised.  We had bloods done at the fourth week and they indicated his bloods were in the normal range though at the top end of such being 47*nmol/L.  So we wanted to either convert back to HCT but on suspension so that we could avoid all this under and over stuff and control Ashley.  At this point I was very upset that in all his years here in NZ, compared to his 2 in the UK, they had not even tried to fine-tune his doses to his needs.  It just seemed like they had dosed him as near as damn it to keep him alive actually!  I supposed they thought “a life” was better than none at all which is what the case may have been if there had been no HCT to treat these kids.  I was angry and complained.  Now we are surmising that doctors can do as they please (even when it causes these kids harm like this in two different directions) in fact the support group people here seem to be indicating that ALL doctors are different.  I have had NO support where my son’s condition is concerned actually from NZ group.  Basically everyone looks up to this guy like he is “the bees knees” where CAH and kids is concerned.  Perhaps he is, but sometimes there is a certain common sensical attitude that one can have to treating and monitoring these kids and that simply was not adopted her for Ashley at a time in his CAH life when they decided to “play” around with his doses.  I do not know how far things have gone.  I do not know that they even have any drugs to treat central precocious puberty here for the stuff ups they caused.  I say this because HCT suspension made by the pharmacy is even not subsidized and you have to apply to a special panel that deals with subsidizing them.  Guess who is in charge of the panel?  It’s PHARMAC!  I think I am right in thinking am I not that PHARMAC are the major providers of this drug or corticosteroid and that they are linked or have amalgamated with UPJOHN?  I am angry because no doubt they are trying to spend money getting drugs approved by the Ministry of health here that are not tested as much as HCT and that HCT has been around since the 1940’s.  Still these idiots here decided to turn down the claim for the meds anyway!  I mean my son has it on his hospital records all over them that he is not suited to large dose raises or drops and I feel like I am banging my head against a brick wall here.  Every governmental department that I contact seems to be run by clowns that just don’t care.  Even my local MP has done sod all.  A boy with CAH has had the meds approved and this is because his doctor scripted doses that were not obtainable by splitting tablets.  However the ecpanel (Pharmac) decided to turn our application down.  Perhaps they are so ignorant on these issues they feel he is a big boy now and can take the 5mg tablets????  Perhaps they think like I said ANY life is better than NO life!  Who knows???  Then some CAH Expert here (same one that cut the meds back BTW) says that he is considering adrenalectomy in kids with CAH.  I wrote to a support group last night here and was told they are SERIOUSLY thinking of this for their daughter aged 11 or 12 or something!)  I mean, hence as of this morning, I am no longer using that support group to derive support as it seemed like they were more in support of the doctors here and what they had done for Ash the last few years than support me to get these issues addressed.  The support person here e-mailed me and said that since Ash was not responding to treatment satisfactorily what is it that I want or expect.  I mean he responded alright!  His damn body responded in the only way that it could to these STUPID decisions aroung dosing him and monitoring him.  What do I want.  Better support from the group in this damn country---better control of his condtion and as it SHOULD BE.  Better treatment and respect when I take the time to raise my knowledges instead of having it implied in correspondance from the hospital that , “Mother is becoming confused with the information she derives over the Internet!”  I mean what kind of damn comment is that?   Is that what you get when you start asking sensible questions about your childs care?  It seems so here!  

So the dex and now all this different dosing is just I guess my way of saying, “This is MY kid, and I will do as I damn well think is best AFTER I have derived the knowledge and sifted through what’s important ad what’s NOT important!” 

 

I have to say sorry here to parents on the MB if I am sometimes cranky.  It’s the total frustration of living here with this medical system the way that it is.  If I had not settled with a Kiwi and had three children and was otherwise not happy in my marriage, I would have flown back to the g****** UK years ago!  To be honest the system just SUCKS here and I want to change it and make a difference.   However, I need to compare notes with others and ask all these wacky questions!  So please be patient with me!