ginab
New Member
Posts: 47
|
Post by ginab on Dec 3, 2008 17:11:57 GMT -5
So we finally had the pediatric endo appointment today. It was ok. About what I expected.
It wasn't a complete waste of time, but mostly. He did order some tests, but not everything I'd like for him to have ordered. I'll be getting their blood drawn tomorrow or Friday.
Here's what he is doing. ACTH, plasma Cortisol, Serum Plasma Renin Activity IGF-1 T-4, Free TSH Chem 7 Aldosterone
He said the ACTH Stim test wasn't necessary yet. He didn't think my son's Aldosterone of 7 was bad. (?!?!?) He didn't seem concerned about the almost complete lack of cortisol that my boys have because they didn't have the appropriate symptoms. Ugh.
One good thing is he ordered the same tests on my daughter, even though she didn't have an appointment.
I got disheartened early on in the appointment so I guess I gave up a bit. I felt like it would be futile to tell him anything I knew. I did ask a few questions but didn't really get anywhere. Of course, I am still trying to heal myself so my self-esteem and confidence are lacking quite a bit, not to mention I have major brain fog. I just hate that about myself! ARGH!
Well, I just wanted to let you know how that went. Thank you for helping! Gina
|
|
|
Post by Chris Jackson on Dec 3, 2008 19:52:45 GMT -5
That looks like a pretty good set of tests considering he's an endo. See if you can get the free T3, TPO and Tga squeezed in. He's right about the stim. It's an expensive test, so ACTH and cortisol is looked at first.
That endo is probably only considering Addison's and doesn't see other levels of AI.
Don't get upset, not worth it. He's an endo, part of a group that I've seen help no one very well with thyroid, adrenal and pituitary issues.
You could an appointment with an osteopath when you get the test results.
Thanks for the update.
You're welcome, Chris
|
|
ginab
New Member
Posts: 47
|
Post by ginab on Dec 24, 2008 2:52:53 GMT -5
So, I'm continuing in this thread even though it's not completely the same subject. I just need to vent a little.
I'm really having issues with my 13 year old. He has NEVER been able to tell the truth. My understanding is this is part of FAS/AI. Is that correct? It is the ONE thing that bothers me the most about him. You ask him a simple question that would never in a million years get him in trouble and he lies. He lies even when he knows we know the truth! When we've watched him do something, he will lie about doing it! It is EXTREMELY frustrating.
We are waiting on his lab results, which I think should be back now. I'll be calling tomorrow to find out if they are ready. I can't wait to get him on some cortisol or something. I may have to order it online, but I'm ok with that.
My husband is ready to give up on him because of his behavior. I used to be that way too, but now I understand more why he does what he does so I'm more patient with him. I know he can't help it, but it doesn't help my stress level when he acts like a jerk. He got into some pretty serious trouble on Sunday - the cops were involved, but apparently he really didn't do anything wrong because they let him go. A victim of circumstance it seems. A neighbor mom knew what had happened and came to my house to let me know that he didn't do anything wrong. The problem remains that we don't trust him because of his complusive lying. If he can't tell me the truth about the little things, how am I supposed to believe him about the big things?
I was looking forward to Christmas, despite the fact that I lost my mom this year, but now I almost don't care. If it weren't for my 2 little ones I'd call off Christmas this year. I'm just glad at this point that my adrenals are pretty well supported. I am WAY more calm than I normally would be, but I'm still upset about all of this. I'm just tired of telling my son the same thing over and over and over and him NEVER getting it. Hopefully we can get him on some cortisol soon so we can maybe get past that.
I hate what doctors have done to us. I hate that our kids are so messed up. It burns me up to think that all this is avoidable. All this stress and pain doesn't have to happen, except for someone is getting rich off of it and doesn't care about who gets hurt. It sickens and saddens me.
Pray for me and my family, please.
|
|
|
Post by Chris Jackson on Dec 24, 2008 10:47:10 GMT -5
His low cortisol/high epinephrine is probably causing his lying. Behavior is hormones. Next time, calmly tell him that he needs think carefully about what he's going to tell you and that it has to be the truth. If you confront him for an immediate answer, the lie will spill out of him. It works pretty good with my son who used to be like that, but that he's older not a problem anymore.
Does he say stuff like "I know", "I heard you", "you don't have to tell me", etc. That is also because of AI.
Did you have an epidural with him? Does he have asthma and when did it start? Does he have a short list of foods he'll eat?
Yep, kids are messed up before they are even born. It's criminal.
My wife and I pray for everyone on these forums, but will put in a special prayer for you and your soon. Sending you a PM.
Chris
|
|
ginab
New Member
Posts: 47
|
Post by ginab on Dec 25, 2008 3:32:51 GMT -5
Actually he's adopted. My brother's son. His mom was/is a heroine addict and an alcoholic - he has an FAS diagnosis (fetal alcohol syndrome). I think FAS is AI personally. All the symptoms are the same.
I'm sure she probably had an epidural. He has never had asthma to my knowledge. He's lived with us for 6 years and he's been sick maybe once or twice. I don't know how he is so healthy! He used to have a short list of foods he'd eat, but he's gotten better. He'll eat just about anything now.
Yea, he says all those things. Or I say, 'do you understand?' And he says 'yes'. He tells me he 'won't do it again' and such. He can recall and repeat it, but can't DO it. Frustrating.
I know it will get better soon. I need to start him on meds, but our doc appt isn't until the end of January. Actually that doc doesn't take his insurance any more, so I have to find another one. After I did their bloodwork is when they called to tell me that. Oh well. On to the osteopath!
Thanks! Gina
|
|
|
Post by Chris Jackson on Dec 28, 2008 11:09:24 GMT -5
You're welcome, Chris
|
|
ginab
New Member
Posts: 47
|
Post by ginab on Jan 11, 2009 22:31:53 GMT -5
Here are the boy's most recent labs finally. Drawn 12/16/08.
13 year old boy IGF-1 393 (142-855) Testosterone, Total LCMSMS 161 ng/dL (420 or less) Sodium 140 (131-145) Potassium 4.4 (3.8-5.1) Chloride 103 (98-110) CO2 27 (22-31) BUN 10 (7-20) Creatinine .66 (.5-1.3) Glucose, Fasting 98 (65-99) Calcium 10 (8.9-10.4) TSH, Ultrasensitive 2.61 (.5-4.3) Testosterone, total 166 ?? don't know what this one is for ACTH, Plasma 16 (7-50) Cortisol 8.8 (3-25) Aldosterone 16 (< or = 21) Renin Activity, Plasma 4.7 (16 or less upright sitting) Free T4 1.3 (.8-1.8)
5 year old boy IGF-1 112 (32-259) Sodium 140 (131-145) Potassium 4.1 (3.8-5.1) Chloride 107 (98-110) CO2 24 (22-31) BUN 16 (7-20) Creatinine .38 (.5-1.3) LOW Glucose, Fasting 94 (65-99) Calcium 9.8 (8.9-10.4) TSH, Ultrasensitive 2.91 (.5-4.3) ACTH, Plasma 17 (7-50) Cortisol 8.5 (3-25) Aldosterone 4 (< or = 9) Renin Activity, Plasma 2.2 (15 or less upright sitting) Free T4 1.2 (.8-1.8)
Thanks for any comments! Gina
|
|
ginab
New Member
Posts: 47
|
Post by ginab on Jan 20, 2009 17:00:54 GMT -5
I finally got my daughter's labs done and back, so here they are:
2 year old girl IGF-1 74 (99-254) LOW Sodium 141 (131-145) Potassium 3.8 (3.8-5.1) Chloride 109 (98-110) CO2 22 (22-31) BUN 19 (3-14) HIGH Creatinine .30 (.5-1.2) LOW Glucose, Fasting 80 (65-99) Calcium 9.5 (8.5-10.6) TSH, Ultrasensitive 2.85 (.5-4.3) ACTH, Plasma 20 (5-27) Cortisol 11 (3-25) Ferritin 53 (10-143) Aldosterone 1 (2-37) LOW Renin Activity, Plasma 1.7 (10 or less supine, no range for sitting) Free T4 1.2 (.8-1.8)
We had an endo appt for my 5 year old boy and my little girl today. Here's what he said about them.
He said the low IGF-1 was 'normal' for my daughter based on dad's history - of course I found out that what I told him of dad's history was wrong! Anyway, even if dad's history was right, how can that low a number be normal??? He wasn't concerned about the relatively low number for the boys.
Of course he said their TSH and Free T4's were fine and we didn't need to test T3. UGH! I asked him what he looked for to find thyroid resistance - he said he only had one patient that was thyroid resistant (HA!) and that he looked at the 'recommended' labs for that. He didn't say what those were. I pretty much left it at that. (Got to get some research for him!)
Said my daughter's low BUN and Creatinine was from being dehydrated. She drinks like a fish, but she could have been dehydrated that morning. Boy's were w/in range.
I asked about my daughter's relatively 'high' ACTH compared to the relatively 'low' cortisol and he said 'your body only makes what it needs'. I would think that if it's been stimulated that much that the number would be higher. I may be wrong, but it just seems off to me.
He says her low Aldosterone and Renin was also from being dehydrated. I just don't know about that! The boy's were also of no concern to him.
He didn't seem concerned about her low ferritin.
The one thing about him is he at least listens to my concerns and reasoning. Last time I shut down pretty early on because he didn't seem receptive. But this time I came in with a better plan and more knowledge and (better supported adrenals!) so I was able to ask more questions and state my reasons for wanting to know everything. He actually went over every lab result line by line with me for EACH of my 3 kids! I was impressed with that. He said something that I really appreciated - he said 'mamma's know when there is something wrong with their baby' and that he was willing to work with me because I'm obviously passionate about this, but he wants the whole picture - clinical and symptoms and labs and everything! I told him how much I appreciated his willingness to listen to me and my concerns.
And because of my concerns he is ordering an ACTH Stim test for him! And that is per HIM!! I didn't even bring it up! He said to put my mind at ease that my son should have a Stim test to make sure! WOW! Even though I don't totally agree with all he said about the other labs, I think I can work with this guy!
Chris, I haven't heard from you about my previous post of the boy's labs, so I'm hoping you'll comment on them and on my daughter's labs too. Your expertise would be greatly appreciated!
Hope everyone is having a great new year. Mine is going pretty well so far... :-) Gina
|
|