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Colsophnel
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Incomudrox
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Are you working with an approved CF center? What are the doctors saying? Do they know he hasn't gotten a treatment in a year? I wan't diagnosed until I was 7 almost 8. It probably wouldn't have made much difference if I had been diagnosed at birth. I didn't really have any problems until I was 14 anyhow. Answer those questions and maybe we can help you better.
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Colsophnel
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Incomudrox
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Hmmm this is tricky. Especially because he's so young. I know social workers can go NUTS and do a lot of damage if you aren't careful. I've seen it first hand. I am inclined to say if they can't tell the difference than keep doing what you're doing. What is the prescribed treatment regime that they have prescribed? Do you know his mutations?
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Colsophnel
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Incomudrox
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If it was me, (I am NOT a doctor) I would give him the albuterol and Pulmozyme. Skip on the Pulmicort. There is a lot of research suggestion cortisteroids in CF are useless and leave us more prone to infections. Especially if they can't tell. In theory the MSW (Medical Social worker) has the power to take him away if they wanted. However he is doing fine. If you were not doing anything and he was having many issues than it would be a lot different. Hopefully some others will chime in with some good advise. What clinic do you go to?
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Colsophnel
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Incomudrox
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Is he pretty active for 17 months old?
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Colsophnel
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I would start back into the habit of getting his meds slowly if it seems overwhelming to you. Like Frank said, the albuterol and pulmozyme are pretty important, so start with those. After awhile, it will be like second hand and your son will become accustomed to this. This is the perfect time to get him into the routine. What do you do on a typical day with him? Perhaps you could sneak in a treatment when he gets up, incorporate them in along with his feedings, bathing etc. Pulmozyme is once a day, so get that in in the morning along with his albuterol... Do you do any chest physio? You could turn on his favorite cartoon and give him physio once his breathing treatments are done. These are just suggestions.....you will find something that will work for the both of you.
Do the same thing every day if possible, and it will soon feel normal.
If your doctor is intimidating, perhaps go to a different one in the group. Feeling comfortable with the doctor is important to his treatment as well.
I hope everything gets back on track soon,
Jenn 40 wCF
Do the same thing every day if possible, and it will soon feel normal.
If your doctor is intimidating, perhaps go to a different one in the group. Feeling comfortable with the doctor is important to his treatment as well.
I hope everything gets back on track soon,
Jenn 40 wCF
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Colsophnel
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Incomudrox
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<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Colsophnel</b></i> Yeah he is. He's a rambunctious kid.</end quote>
A good sign would be to worry when he is not. Activity is key in young children with CF. If you do anything make sure to keep him active. I also second seeing a different doctor. Patient doctor relationships are a neccesity to CF patients. If you don't like your doctor things aren't going to work well. Don't feel bad about hurting anyones feelings, see a different doctor or goto a different clinic all together.
A good sign would be to worry when he is not. Activity is key in young children with CF. If you do anything make sure to keep him active. I also second seeing a different doctor. Patient doctor relationships are a neccesity to CF patients. If you don't like your doctor things aren't going to work well. Don't feel bad about hurting anyones feelings, see a different doctor or goto a different clinic all together.
Don't worry too much about divulging information...your IP address is trackable as you've posted to this site. If you're looking for advice, I advise that you voluntarily let your son live with a family member or other who has the time and devotion to help him. A missed treatment here or there is excusable. A year of missed treatments is deplorable. Your son can't care for himself. That's your role. "Look what I'm dealing with, man, I'm dealing with fools and trolls." - Charlie Sheen
<em>**Edited by forum Administrator Incomudrox**</em>
<em>**Edited by forum Administrator Incomudrox**</em>
Incomudrox
New member
@kitomd21 Your negative sarcasm will not be tolerated. I would prefer not seeing it again. This IS a warning. You are bashing someone who, 1. Admits they have a problem. 2. Is asking for help. Which you advised what you would do and that's fine. But the latter comments are not constructive criticism.
I understand you may need to edit the following - I would've sent it to you in private, but private messages are disabled. I may have spoke too harshly...but, I find it highly concerning that this person isn't being approached directly. This is SERIOUS. Not taking care of your child is SERIOUS. What's more important? Getting the point of severity across by not treating a child whose life WILL BE shortened if they aren't cared for appropriately OR risking hurting someone's feelings? I'm sorry...a sympathetic attitude isn't warranted. A year of lying? A year of refilling meds and not giving them to their child? It sounds very improbable. BUT...I do hope that this person gets some kind of help. Really, I do. Why hasn't anybody mentioned the danger this person is putting their child in? Let us convey as much as allowed how they are shortening their child's life. That's the simple truth. There is no choice when it comes to the health of our children. There is no excuse. No excuse.
If I post on here that I burn my child with a cigarette once a day but, hey, I have a problem - wouldn't *most* people jump on me for child abuse? We each respond differently and with passion about many topics on this site...my concern is for their child's neglect - I'll always advocate for the child.
If I post on here that I burn my child with a cigarette once a day but, hey, I have a problem - wouldn't *most* people jump on me for child abuse? We each respond differently and with passion about many topics on this site...my concern is for their child's neglect - I'll always advocate for the child.
Incomudrox
New member
I understand where you are coming from, trust me I do. However what you just said is much better than sarcasm. That was my gripe. I am not going to edit anything you just wrote because there is no sarcasm. I do think that there are better ways than to tell someone all the bad they're doing. If she didn't care she would not be here asking for help, plain and simple. A side from telling her to see if there is a family member she can send the DS to live with I haven't see an constructive advise. Since you are a parent maybe you can offer some advise to help her get the treatments completed. Admonishment of her self esteem isn't going to change what has already been done. On the other hand encouragement that she CAN do it and do what her DS needs well that in fact could change the future.
If you believe (and you're entitled to your opinion) that she has caused damage and shorted the life of her DS. Then that is your opinion. On the flip side no amount of admonishment as I said is going to undo what may (or may not) have already been done. No one knows for sure what damage has or has not been done to DS, we can only speculate. Without CXR's or CT's there is no way to tell. You are making it seem as though she has killed her child and DS only has a year left to live life. Which I know isn't true. However her, being new to CF unlike yourself and most members on this board may not know this and could go into self loathing. You don't know if she is or isn't in a state of depression, you know nothing about the father or her living situation. Which is why I have asked questions to better understand what is going on instead of telling her she is a horrible person and needs help etc. While in your opinion you think it's true you should consider these things before voicing your opinion to someone you know nothing about.
My PM's are disabled, but I did list my E-Mail address w/ the site in my signature which I always check. I do not close my mail program ever and everything goes to my phone as alerts.
If you believe (and you're entitled to your opinion) that she has caused damage and shorted the life of her DS. Then that is your opinion. On the flip side no amount of admonishment as I said is going to undo what may (or may not) have already been done. No one knows for sure what damage has or has not been done to DS, we can only speculate. Without CXR's or CT's there is no way to tell. You are making it seem as though she has killed her child and DS only has a year left to live life. Which I know isn't true. However her, being new to CF unlike yourself and most members on this board may not know this and could go into self loathing. You don't know if she is or isn't in a state of depression, you know nothing about the father or her living situation. Which is why I have asked questions to better understand what is going on instead of telling her she is a horrible person and needs help etc. While in your opinion you think it's true you should consider these things before voicing your opinion to someone you know nothing about.
My PM's are disabled, but I did list my E-Mail address w/ the site in my signature which I always check. I do not close my mail program ever and everything goes to my phone as alerts.
Incomudrox
New member
To the OP, it has been brought to my attention that your child has been already hospitalized 5 times by 3 months of age? Is this true? If you don't tell us the whole story we CAN NOT help you.
Jasey is 6yo and doesn't do breathing treatments. Our cf specialist said there's no reason right now because she doesn't have lung involvement. I don't know if this is right or wrong but as far her lung function goes, she is good. It's her BMI and possible CFRD that we are concerned about.
there is no reason you shouldnt be giving your child treatments they are perscribed when something is perscribed that is neglect if you are not providing it ,it would be like not treating your childs cancer you are not treating your childs life threatening illness,now we have skipped a friday here and there just to give our child the sense of normalsee but to go a year wow i would never do that ,my child has 4 treatments plus a 30 min. vest treatment twice a day i would love to not have to do these but she is sooooo used to them that now when something is added its no big deal you will have your hands full when you really need to start doing them and then the doctors will catch on wondering why he isnt used to them, but it the end if you dont take cf seriously you and your child will pay the consequenses remeber it is a lifethreatening illness not to be toyed with im a foster parent as well and now definitly that your actions wheater your child is sick or not will be considered neglect so you really need to start doing what you are suppose to do ,my child is 4 and has been on all these treatments since age 1 month even though she was not very sick we did the treatment because lungs are nothing to mess with...