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10/25/2009 06:42 PM

Advice from adult AI about a child with AI

lorajoy
lorajoy  
Posts: 338
Member

Hey all,

Just wanted to get your opinion about something. Since I don't have AI, but my 9 year old son does (PAI), it is hard for me to determine sometimes when he needs extra dosing.

Here is what happened Saturday. He had a soccer game (we don't usually stress dose him for this), but it was extremely cold. He was wiped out the whole day. We had some friends over that night and he and the kids jumped on the trampoline in the cold for quite some time. Ever since then he has been complaining of extreme dizziness and upset stomach. He said he feels like everything is spinning. He felt a little better this morning, but then it came back- not quite as bad. I have checked his temp off and on all day. His norm is about 97. 3. It fluctuated up to 99.5 and now is back to 97.7. He says he still feels dizzy with a little stomach upset.

My question is this: Could this be from extra stress to his body from playing in the cold? or do you think he might be coming down with something? He has never complained of spinning feeling,but has struggled with dizziness/lightheadedness.

Should we adjust his meds while he is feeling this way? Do you think he is just a little out of whack right now and needs some help?

This is the hard part about having a child with AI- it really is hard to know exactly how he is feeling and what we should do about it.

Thanks for any help, advice, suggestions!

Lora-Joy

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10/25/2009 07:06 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Lora-Joy

I guess you have read my dosing article so I'll be short..

Yes.... Cortisol is a resource that depletes. The normal body's system measures the level and produces more when it is needed, or to maintain a prescribed "normal" or "stressed" level.

Cold weather will use more up as more energy (calorific) is needed. Cortisol is part of the energy conversion equation. It might be interesting to do BSL's on him when he gets dizzy. That will be a good indicator for dosing decisions as well.

There is a good chance your son has been prescribed enough steroid to cover most exercise situations at the expense of being OD'd at other times. When however he gets indicators that his levels are low I suggest you go extra regardless.

Remember too he also has to contend with water/volume loss so watch his fluids as well.

My opinion!

Bob


10/26/2009 05:49 AM
lorajoy
lorajoy  
Posts: 338
Member

Bob,

Thanks for your "take". I did look back over your predictors and it looks like Landon had 3 of them (fluctuating body temp, fatigue and dizziness). I am just not sure how much more meds we should have given him, double? He takes 5 mg am, 2.5 at noon, 2.5 at 5 pm.

He is feeling better this morning, just complaining of a headache.

also, what is BSL. I can't remember what that stands for.

Again, thanks so much!!

Lora-Joy


10/26/2009 01:39 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Lora-Joy

I'd just take a min HC dose (say 5mg) and wait an hour, then take more if the indicators are still there. You will however get an idea from the severity of the symptoms. I actually took a single 20mg hit a few days ago but thats kind of unusual for me.

BSL=Blood Sugar Level - Glucose etc. Must be Oz speak!

Bob


10/26/2009 03:06 PM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Hi Lorajoy,

So sorry your son is having problems. I can only imagine how hard it would be to try to read your son's situation and figure out what to do, it's hard enough for an adult to manage their own symptoms and doses. God bless you. For what it's worth (I'm not an expert) here's my take: I would say that even if he IS coming down with an infection, it would benefit to top off his dose for stress. I have found this often helps me fight off something when I feel like I am coming down sick. Either that, or the reason I feel sick is cortisol low -- but let me say this. I truly believe I have not been sick as often as I was last year at this time, when I had one infection after another. I think it's because keeping my cortisol somewhat stable is helping my immune system. It's all related.

I also get some lightheadedness when I'm low. I was bumping into walls before my dx. Everyone always said I was the clutz of the family. I also get weak muscles ie drop things more often when I'm low. Explains a lot of very embarrassing moments (just this week dropped a glass of water on my hubby on our anniversary no less)! Recently, blurry vision seems my most common first indicator but it varies.

Hope he feels better soon! Oh - and I almost always need a little extra when I'm exercising (ie walking) in the cold...or even when I'm traveling and I'm in and out of the car in cold weather...

Deb


10/27/2009 05:52 AM
lorajoy
lorajoy  
Posts: 338
Member

Deb,

Thanks for the advice. You guys have helped out a lot. I think you are right about going ahead and stress dosing him just in case he is trying to fight something off. He just isn't himself- also complaining that his stomach feels weird. His temp is still fluctuating. I think we are going to stress dose him during his soccer games as it is getting colder now. It really wipes him out.

Bob, duh...I should have known what BSL was Smile We do have a glucose meter. I need to start checking him when he feels dizzy. we used to do that a lot!

Again, thanks so much. It is so helpful to hear your thoughts and ideas. I appreciate you a lot.


10/29/2009 05:50 AM
lorajoy
lorajoy  
Posts: 338
Member

Hey guys,

Just wanted to update you on what is going on. The truth is...we just don't know. Landon still is not himself. His temp is up and down...never over a hundred, but anywhere from 96.9 to just under 100. Yesterday, his neck was hurting really bad and his temp was 99.5. I started worrying about meningitis. We have been stress dosing him. He went to bed really early last night and got up feeling good, but within a 1/2 hour his stomach was feeling sick again. His temp was 98.6. We sent him to school- just don't know what to do. He has not been dizzy for a couple of days- so that has gotten better. It seems like if he doesn't have a high fever- we don't need to take him to the doctor. But...he has not been feeling good since last Saturday after playing soccer in the cold. I am going to get out our glucose monitor this afternoon and start keeping a check on that. Thanks for listening! I will keep you updated!

Lora-Joy


10/29/2009 02:24 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Lora-Joy

Something to keep in mind that may or may not be relevant....

Stress dosing to a higher level will tend to stabilize body temperature.. ie you go from "not enough" to "just enough" Cortisol and the whole temperature range narrows.

Bob


10/29/2009 05:06 PM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Lorajoy,

I do hope that Landon is feeling better and made it through his day at school just fine. Bob is right, the most minute changes in cortisol level can have very strange effects on body temp. Sounds to me like he's had an infection (maybe viral) and so it's put him into a bit of a cortisol spin. He'll stabilize, it's a very good sign the dizziness is better. In the meantime, do all those things I know you do so well - make sure he's rested and that you try to avoid stress (ie being too cold) as much as you can.

Post soon, we're all keeping you in our thoughts and prayers,

Deb


10/29/2009 06:00 PM
lorajoy
lorajoy  
Posts: 338
Member

Bob and Deb,

Thank you so much! I just can't tell you how you have helped me stay sane these last couple of days. I just worry so much about him. I even set an alarm at night to get up and go check on him. He got sick with the flu about 1 1/2 years ago and was in the hospital for the week, staying 24 hours in the PICU when his sodium dropped drastically and fluid accumulated around his brain. It all happened so fast...he was ok and then he wasn't ....crashed! I sometimes worry that we will wake up and find him dead...I know- extreme, but he is my child and I feel so out of control.

Anyway...sorry that I have "vomited" my emotions to you all...but oh I feel much better SmileSmile

We have gone from double to triple dosing him. he put himself to bed an hour and half early tonight (7:30 pm). He is exhausted. When he gets home from school he comes in, immediately puts on his pajamas and lays around. He did eat a good supper and then his stomach was hurting again. His temperature is hovering right now around 98.8. If he is not better by Monday, we will take him in for some blood work. It has been a long week- I think now half of my head is covered in gray SmileSmile

Again, thank you, thank you for all of your ideas, advice and suggestions. It is much appreciated!!!

Oh...his BSL has been normal the couple of times I checked it today.

Deb...I will be praying for you to NOT get the SWine flu. A couple of weeks ago we had 20 % out at our school. I had kids sneezing and coughing on me constantly. I would spray disinfectant on me before I came homeSmile It hasn't really hit Landon's school yet. And... congrats on the weight loss!! Woohooo!!!

Bob.... you just crack me up/and amaze me all the time! I love reading your posts!!

Lora-Joy

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