Can anyone help me to help my son?

W

WMom

Guest
Hi...my son, age 13 does not have CF. He has a lung defect called Yellow Nail Syndrome. It is very rare, and even most doctors have not heard of it. It causes his lungs to not be able to clear, as well as frequent illness, infection, fainting and fatigue. He has had pneumonia 4x.

He sees a pulmonologist, and takes a bunch of resp meds every day. He also uses the vest 1x per day. Before he started with the vest, he was so tired all the time, he collapsed at school a few times, and at home, and actually was too tired to do anything besides school, even eat. He would fall asleep on the rug as soon as he got home, and not be able to wake up until the next morning. He was losing weight and losing energy and it was a mess.

The Vest slowly helped him regain some energy - at least enough to make it through school and meals most days. He has a 504 plan at school, which means his frequent absences will not be held against him.

However, we are really struggling with the concept that on the exterior he appears normal, and the expectations of him are that of a typical kid, but he has about a third of the energy level. He has to constantly modulate, monitor his activity, food intake, or he will collapse. As recently as this past weekend, he passed out just doing normal stuff when we were camping, not hiking, just walking around .

I am sorry to pop in where I don't really belong...I am not in fact a CF mom. However, reading this, I am guessing we have some of the same struggles , and I wonder if you have any suggestion where to turn for support. Thanks. Heidi
 
R

Ratatosk

Administrator
Staff member
How are his pfts? Would it help to add an extra vest treatment. Also does he need extra calories? If so would it help to add a high calorie drink with meals such as carnation instant breakfast, boost, ensure..?
 
W

WMom

Guest
How are PFT's measured? Can you tell I haven't been doing this very long? As far as I can recall, he did a PFT, which was the test that caused the doctor to prescribe the Vest. I also think the PFT put an end to further testing for CF. Originally he was scheduled for the sweat test, but I believe that as cancelle ddue to the numbers on the PFT.

He hasn't had one in over a year. The doctor is very hard to get an appt with (on top of everything else). He has an appt in November where I guess they re-test , see how the Vest is improving stuff.

But what i'm really looking for here is coping strategies. Just wondering, do moms with CF kids just disclose that to schools and your kdis tell their friends? We are dealing with some shame (my son) and isolation (me not knowing anyone else in this situation or what to do), and I could use some sort of help building a road map.

I am in NYC, btw.
 
2

2005CFmom

Super Moderator
Welcome WMom, hopefully we can be of some assistance. So is fainting and fatigue just part of this syndrome? Or is it an indication of low oxygen levels? Although my daughter has CF, she has good lung function / oxygen level so we don't have to deal with fainting and fatigue. If that did occur, I would want some kind of stress test done to see what oxygen levels are doing during exertion.

My daughter is homeschooling now, but when she went to school she did not want to be singled out as being "the sick one", so I can understand your sons feelings. I don't know what would help with that.
 
W

WMom

Guest
Thanks 05 ..must be a big challenge to home school. My son fatigues very easily, and tough to track. Different tolerance every day. But once he gets past his limit, he turns white and shuts down pretty quick and just hits the deck. He can feel it coming, at this point, but he can't stop it. But at least he has learned how to be safe and hopefully avoid hitting his head.

There is very little known about his syndrome, since it's so rare. Maybe one day. We had years of misdiagnosis before hitting the right therapy and treatment.

I am particularly concerned, because in our area (NYC) kids have to apply to high school the way they apply to college. Test, portfolio, and interview. I am concerned he will come across as lazy and unmotivated, since he doesn't have extracurricular activities to back it up. He's pulled an A average through middle school, he's in 8th now.

But it just came to my attention he is going to be judged for admission to high school, based on his extracurricular and community service. He has some....just not much.
 
M

mommy w/ cf

Guest
First, you do belong here! This is a place where we can help others! Who cares if he has a slightly different condition, we are all going through very similar things, and it seems unfair to say you don't belong here just because your burdens fall under a different name!

I'm sorry you feel isolated! Hopefully you will find some help, perhaps you can talk to the pulmonologists you see to ask to be connected with other moms of kids with lung problems. That is what the docs did for my mom when I was a kid, and even though she never met face to face with some, she was very encouraged being able to call and talk to moms in the same situation as she was. It is so nice to know you are not alone in your struggles!

I personally have CF, and I can tell you that when I was in elementary school it really helped me that the school leadership knew about my condition. They realized then that my slightly lower physical capabilities (due to the awful air quality in CA) were a health issue, not a lack of motivation. Those teacher actually became quite an encouragement to me, because they saw me have many health hardships and cheered me on in overcoming them.
it might actually be helpful in your sons case for the school leadership to be aware of his condition ( if your son is comfortable with it) so the school leadership (in high school) sees that he is excelling even though he has circumstances that make him have to work even harder to succeed. I hope people are understanding and gracious in their dealings with you and your son! I don't think that the school systems are allowed to discriminate because of health problems, by the way.

Keep encouraged! You might seriously want to look into finding out what his FEV1 number is. That is the fancy word for his lung function which is shown on the PFT test. You can ask the doc for a copy of it if you want to, and don't be afraid to ask them tons and tons of questions. If you pull out a note book and start taking notes, they will see you are super serious about this situation ,and often times will step up their game. At least that is what I have found! I have never had fainting problems, because for most of my life I have been relatively healthy (for someone with cf), but I know when my lung function starts to go down, my oxygen levels go down with it and I become extremely fatigued. To the point of not wanting to do anything and wanting to sleep all the time. Perhaps if that is the case, the pulmonologists can give him oxygen to use at night or something. again, just don't be afraid to share all your concerns with them!
Oh! When his lungs are having to clear so much stuff, it is perfectly natural that he is so exhausted. What I do when I get sick is up my vest therapy to three times a day. I know this is really hard with school and everything. I'm so sorry, but it is totally worth having the extra energy! Once before school, once after school, and once in the evening is what I always did.

Ok... So I have always struggled with gaining weight. There are these shakes called Scandi-shakes that are aGod send for me! They are pretty expensive, but if you can afford them, try having him drink one, even if he is extremely tired. These really helped my weight stop spiraling in a downward trend, and this helped my energy levels stabilize. If you can't afford those, ensure plus is another high calorie drink that has helped me in the past. It does not have as intense of a calorie count, though, so he'd still have to be extremely faithful with eating a large diet. He's also right at the age where he's growing so much, the more calories you can get in him the better. When I was growing, I had to take about two Scandi-shakes a day plus three high calorie meals plus three snacks a day to maintain weight. When my weight was low, my lung function always dropped, and so did my energy levels.

I wish you both the best, and hope this can help you a little. Please let me know if you need any other ideas! I seriously feel for you and your son! I understand how hard it is to have a chronic condition and keep up with life, and how hard it must be for you to watch him have to go through all these things. Just don't give up!

Be encouraged that things can work out for good for your family and your son! just so you can see there is hope, look at my life with CF. At at this point in my life, I have gotten my cf under control, have graduated college, gotten married and have even been blessed with having a son of my own. This journey has not been without its difficulties, but I am so much stronger of a person , because I have grown through my cf. Embracing my cf and doing hard things despite it. I know his condition is different, but take heart, because there is hope!
God bless.
 
N

Ninacato

New member
Since you are also concerned about his admission to high school perhaps you should talk to his current school about getting an IEP (Individualized Education Plan). Most people know this for kids with learning disabilities but my daughter had one for "Other Health Impaired". It supports and strengthens the 504 legally but it will also provide him with any modifications he may need at school. I felt like I was always taking on the school but once we had that in place things did get easier. It should help with his admission into high school as well as his time at high school because it should be in place until he graduates. Also, I don't know if you are happy with your doctor but maybe you should consider having your son see a pulmonogist at a CF accredited care center. Since there are many similarities they maybe able to offer more help medically and emotionally. When we were still up north my daughter went to the CF center at Mt. Sinai. You can find accredited CF care centers at www.cff.org. Just a thought!
 
R

randomgirl

New member
WMom- Sorry to hear that your son is going through this. I understand being fatigued although I have never passed out from it. I just felt like sleeping all the time and was never really felt awake. I understand CFers and people after a transplant (which I have had) get fatigued and will not have normal energy but I couldn't stay awake to study for classes and such. I talked to one of my doctors about my fatigue that I had for many years and she checked my cortisol levels. It turned out that my cortisol levels were very low. The standard range for coritsol levels is 7/25 UG/DL and mine was below 2. Although, I do take prednisone every day so that should help my cortisol levels. Now I take Methylphenidate (Ritalin) which helps very much to keep me awake. Anyways, this may be super confusing, sorry. My point is...maybe his severe fatigue is due to something else besides Yellow Nail Syndrome? I'm not saying he doesn't have that...I'm just saying maybe there is something in addition going on. I'm probably wrong. I hope you get the answers you need.
 
You must log in or register to reply here.
Top