Question about symptom my step-son is having

[jenniferp]

Hi,
My step-son (11) stays with us through the summer, he is on the pulmozyme and albuteral (neb) and does the vest twice a day plus other oral meds.
He started complaining of a head ache last night and some pain in his chest. I gave him two advil before bed to see if it was just from playing hard all day. Well, this morning when my husband came home for lunch he is complaining his head is still hurting and now he has burning in the right side of his chest. He is taking him to the hospital right now but I'm wondering if any of you might know what this is or could be?

 

[jenniferp]

Well my husband just left the hospital, they did an x-ray and saw a spot on his right lung? They gave him flonase and Ibuprophen. Could this be the start of something? I hate for him to get sick while he is with us, I feel terrible. I wonder if we let him do too much. He pretty much does everything my 12 year old does. They play basketball outside, swim in the neighbors pool, go to the beach, jump on the trampalene. Should we limit his activities?

 

[Purplelungs]

No never limit his activities...Its great he is able to do those things and if you limit him he will just resent it. What you may do is maybe just check on him more often. Make him stop for 5 or 10 minutes for frequent drink breaks. He maybe playing so hard and getting hot and not drinking enough...I know when your having fun you dont think of getting a drink or resting for a few minutes. I am wondering why the doctors put him on flonase when they saw something in his lung? It makes sense to have flonase to clean out the sinuses maybe help with the headaches. Just keep an eye on him. If it doesnt get better in a day or so pain wise call his cf doctor or his mom and seewhat needs to happen. Sometimes er docs are clueless on how to treat a cf patient. I dont mean to scare you but its better to know that then find out on your own.
Amanda

 

[JRsmom]

I also question why they gave him flonase. My son takes that for polups in his nose but never for his chest. He takes albuteral and flovent for air way clearance. He has had headachs when he plays to hard and doesn't watch things like rest, water and even salt intake. The pain could be any number of things from muscle strain to a virus but don't feel bad if he does get sick while with you it happens at anytime and anywhere. If he is still having trouble by monday I would see a specialist with cf. Hope he gets better.
God Bless.... Becca mom of son w/cf (also a step mom)

 

[anonymous]

Jen, you can never do the "wrong" think by letting a kid be a kid. He really needs to feel normal, and he'll let you know when he gets worn out or just doesn't feel good enough to go out and play. IYou can protect him as much or as little as humanly possible, but in the end if it is "time" for him to get sick, it is going to happen-regardless of what you did or didn't do. I am also a bit cofused by the flonase??? It's mainly for sinuses, but that doesn't sound like the issue he is having.

I hope he starts to feel better!


Julie

 

[anonymous]

I think you should contact his mother and his CF Clinic doctor. Is the hospital you took him to where his CF clinic is located? Sometimes other hospital ER's do not understand CF. He should probably be seen at his CF clinic for a checkup. When was he last seen there?

 

[anonymous]

Make sure he is well hydrated too. My CFer gets dehydrated very easily especially during the summer which can bring on headaches and such. He needs to up his salt intake especially if he is outside a lot. Have him drink gatorade. Do not limit his activities, just be sure he is hydrated! If he doesn't improve call his regular CF doctor.

 

[JazzysMom]

To Jen:
Whats up with your step-son? Did things improve? Hope all is ok.

 

[anonymous]

Thanks everyone for responding-

Since he was seen on a Friday they told my husband that the radiologist would not be able to tell us anything until Monday? Which I think is bogus.
His regular CF Team is out of state because he lives with his mom, we just get him for the summer and christmas vacations. So, we don't really know if this could be something that has been there? I'm not very experienced with how the viruses and bacteria live or grow but I do know that he has been treated for the psudomonia for a long time, he has been on TOBI every other month for about 3 years. So could this just be the psudomonia, kinda sitting there?
We have a CF clinic near by and we have an appointment on 8/1 so I'm sure they can give us much better info then, but until we get there I'm gonna be worried about it. I'm worried that not jumping right on top of it right now might cause it to get worse.
Any info is appreciated.
Jen

 

[JazzysMom]

This might be a touchy thought depending on the relationship with his Mom, but have you talked to her? She would be able to tell you if the "spot" on his lung is a usual thing &/or if the headache etc is normal for him. Since you have to wait a whole week to get him into a CF doctor, I would inquire. If this isnt feasable, what about his Dad contacting his regular CF doctor?

 

[anonymous]

We have been trying to contact his mom she lives in NM and we are on the east coast, she hasn't answered her home phone or cell all weekend and my husband and step son have left several messages. I don't know whats up with her or where she could be. She has never been very up-front with my husband about their son, she never tells him anything. I've posted about this previously, I asked what kind of questions my husband should ask her and after we got some responses from all of you we asked her things like what his FEV1 and PFT results were and she said, "Oh, I don't have that information." So, that was that. She only ever tells my husband when he is hospitalized but never any information about why. I use to just leave it alone but since I found out my baby will be born with CF on 9/5/05 (maybe sooner) I started demanding that my husband get some information from somebody, after all he is his father not just some stranger on the street. And he carries his insurance (Tricare). But, to make a long story short it won't do much good to talk to her, but she needs to know whats going on, and if she will call us back or at least answer the phone we can tell her.
Jen

 

[anonymous]

Jen, I may be way out of line here but have you and your husband considered full custody of him. I don't know the whole story, but it seems that his boi. mom may not bee as involved as she needs to be at his age. For his own health and well being he may be better off (health and mentally) to be an a family full time with you and your husband. Just a thought but considering all the issues I have heard you mention, I feel bad for this child when he is with his mom.


Julie (wife to Mark 24 w/CF)

 

[anonymous]

Julie-
We tried, $10,000 later we got visitation and she has to pay half the airline ticket, which was better than what my husband had before, which was just whatever she wanted, when she approved it, and he paid for everything plus child support. The waters have only recently calmed in the past couple of years because it was real bad. And honestly, I do believe she takes good care of him she just is not fair to my husband, she likes to be in control and she does not want him to have any information, she feels impowered by the fact that his physicians are way out west and my husband can't get any information from them. Its ridiculous. But I can't handle another custody battle, we have to fight out in NM because they have jurisdiction and the last battle ended with her divorced from her husband and me and my husband really close to it.
But, its a nice thought. I just wish she was normal and we could actually talk about important things, such as his health. I don't think I'm that difficult to get along with, I just won't stand for someone pushing me around, or my husband.
Jen

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I use to just leave it alone but since I found out my baby will be born with CF on 9/5/05 (maybe sooner) I started demanding that my husband get some information from somebody, after all he is his father not just some stranger on the street. And he carries his insurance (Tricare).
Jen<hr></blockquote>

I'm sorry Jen, but you make it sound like you didn't care to know about your stepson's CF or CF in general until you found out YOUR baby would be born with it.

 

[anonymous]

Last anonymous poster, have you ever had to be a step parent to a child? Have you ever come into a previously broken home where there were children from the previous marriage and you were to be the step parent? Have you ever had to try and make friends, or the very least aquaintences with your new spouses EX? I can't imagine that would be the case from the tone and comments in your post. It's completely logical that she would take MORE of an interest now that her own child has been diagnosed with CF. When she only has visitation rights with this child it's a bit difficult to have a complete understanding of everyting CF entails. Nice you signed your name too-very gutsy.

Jen, sorry to hear about the whole custody thing. It's always worth asking though. A question about your sons insurance coverage... Is he covered under your husbands tricare insurance? If not, you can get a court order to have your step-sons doctor disclose information about his health. If you can't get full custody of him, I believe the next best thing would be to at least get more information about his health while he is not with you-especially since his bio. mom doesn't disclose anything to you.

Take care,

Julie

 

[anonymous]

Julie,
I am not a step parent but I am a step child and have cf. so i do know something about a blended family. i was just making a comment about my opinion.

 

[anonymous]

Julie (who always signs on anonymously),

This isn't the first time you've overreacted to a post from (again, usually another anonymous poster) who claims to be the 2nd wife/stepparent of a CF child. In every case, you are very very quick to advise suing for custody.

How do you know that the anonymous stepparent is giving us the real story.

Sorry but I think you're way out of line on this...and given the fact that you've done it before (more than once), I'm starting to question your ability to be objective on this topic (at the very least).

 

[LindseyRose]

"Julie (who always signs on anonymously),"



Julie ALWAYS signs her name...so what's that about??

 

[anonymous]

If someone always posts anonymously, you have no idea if they 'always' sign their name.

 

[anonymous]

So, are you the one who posted the rude comments to Jen. Please do correct me if I am wrong. Please do tell me when I have EVER responded to a post from a 2nd wife/stepparent of a child with CF in the same manner as I did this one with JEN? I am really curious to know. By the way in case you haven't noticed, because your post takes the stance that you know SO MUCH about me, you would know that I LOVE COURT.

I must toot my own horn here so you understand me a bit better and quit making assumptions. I have won two landlord lawsuits (one because of Mark's health/toxic mold growing in the apartment, the other not getting our deposit back), I won his social security case after 27 months of appeals, I won three food stamp denials and set a presidence in washington and california to allow extra food expenses to be considered medical expenses when counting income and giving deductions to see if someone qualifies for food stamps (and by they way those court documents have been given to other CF families and helped them with their CF/Food stamp cases) and I am considering going back to school for pre-law.

Also, Jen and I have had conversation off of this board so I do know a bit more about her than you might think. You are right, I don't know the whole story and I don't know both sides, but I am OFFERING my ADVICE from what I DO KNOW. It doesn't mean that Jen is going to necessairly listen to or act on everything I say. And there are no rules in life, or on this site that say you have to be objective about a subject to give your opinion. What kind of world would that be? I don't believe in divorce (of course, I have never been there) but I would also not ever judge someone who was divorced, or was getting a divorce-to each his own. I don't understand custody battles either, but when it's clear that a child may be getting better care in a certain setting, full custody of that party ought to be considered.

And what the hell does me posting anonymously, or me responding to an anonymous poster (like yourself who didn't have the balls to sign I might add) have to do with ANYTHING. I choose not to log in because I have 4 computers in my home and I use computers at work (I have access to 10 of them depending upon staffing/usage) but I always sign my name. If you choose to think otherwise, that's your problem, not mine or anyone elses. And by the way, earth to clueless, you can log out just as easily as you can log in so signing in really doesn't matter. If a person wants to post anonymously, it's that easy. If I was posting offensively, the moderators could track my IP address and block me from this site, get a clue. Plus, you posted again, yourself, oh surprise surprise, ANONYMOUSLY, so who are you to talk.

People like you really annoy me, you bi%^h and moan about someone someone is doing, and then your dumb self goes and does the same thing, I just don't get it. I am really aggrivated right now. Sorry if I offended anyone else.


Julie (wife to Mark 24 w/CF)