Question about Diagnosis

[Shavon]

I got Garrett's test back from the doctor today and his sweat test was borderline 40. They did the test twice so my doctor says that this doesn't mean he has cf but it could mean that he does. They will do more testing in New Orleans. She says to continue the pulmicort 2xs per day and the Nasonex. He has been doing really good as far as his cough goes since we started the pulmicort. We did albuterol for 1 week with it because he was fighting a sinus infection but she said now that he is better to use it as needed for an asthma attack or what we think is too much coughing. I am glad we are going for more test in New Orleans I just hate the wait. The what ifs kill me. I am putting it in God's hands. Whatever the outcome I know that all is well. I just wish I could tell that to my stomach and my nerves...LOL
What about my 2 year old daughter....should she be tested...she is very healthy with no problems like Garrett but what do you all think?

The hospital in New Orleans is back up and running...to what extent since hurricane Katrina I don't know but they said that they were able to take care of what we needed so that is really good.

Does anyone of you or your children have the IgA problem with or without cf? This is another problem the doctor is concerned with. Garrett's IgA count is <5.9 and the normal range should be 25.0-154.0. This is the part of the immune system that fights ear, sinus infections, and a few other things. They are suggesting immoneglobelin theorpy (sorry spelling?) which is a shot of someone else's antiboties to help build his up. This could be for just a few times or indefinent. What puzzles me and my peditrician is that his count is actually lower than it was in 2002 when he was tested for this problem and his infections have gotten better and now he is in school around more germs...anyway I was just curious if any of you guys knew anything about this.

I just want to say I am so thankful for this help and if you only know how much it helped me to talk to you all.
Thanks and may God bless you and your lil ones! I will keep in touch.
Shavon


Garrett & Kyla's mom

 

[Shavon]

I got Garrett's test back from the doctor today and his sweat test was borderline 40. They did the test twice so my doctor says that this doesn't mean he has cf but it could mean that he does. They will do more testing in New Orleans. She says to continue the pulmicort 2xs per day and the Nasonex. He has been doing really good as far as his cough goes since we started the pulmicort. We did albuterol for 1 week with it because he was fighting a sinus infection but she said now that he is better to use it as needed for an asthma attack or what we think is too much coughing. I am glad we are going for more test in New Orleans I just hate the wait. The what ifs kill me. I am putting it in God's hands. Whatever the outcome I know that all is well. I just wish I could tell that to my stomach and my nerves...LOL
What about my 2 year old daughter....should she be tested...she is very healthy with no problems like Garrett but what do you all think?

The hospital in New Orleans is back up and running...to what extent since hurricane Katrina I don't know but they said that they were able to take care of what we needed so that is really good.

Does anyone of you or your children have the IgA problem with or without cf? This is another problem the doctor is concerned with. Garrett's IgA count is <5.9 and the normal range should be 25.0-154.0. This is the part of the immune system that fights ear, sinus infections, and a few other things. They are suggesting immoneglobelin theorpy (sorry spelling?) which is a shot of someone else's antiboties to help build his up. This could be for just a few times or indefinent. What puzzles me and my peditrician is that his count is actually lower than it was in 2002 when he was tested for this problem and his infections have gotten better and now he is in school around more germs...anyway I was just curious if any of you guys knew anything about this.

I just want to say I am so thankful for this help and if you only know how much it helped me to talk to you all.
Thanks and may God bless you and your lil ones! I will keep in touch.
Shavon


Garrett & Kyla's mom

 

[debs2girls]

Sandra, what dr does your son see? Is it Dr Royall? We were seeing a dr in OKC but decided to try one in Tulsa, I think we are going back to Dr Medhi in OKC because I dont think we are getting anywhere in Tulsa. Do you live in Oklahoma?

 

[debs2girls]

Sandra, what dr does your son see? Is it Dr Royall? We were seeing a dr in OKC but decided to try one in Tulsa, I think we are going back to Dr Medhi in OKC because I dont think we are getting anywhere in Tulsa. Do you live in Oklahoma?

 

[imondeck]

Deb, my son sees Dr. Reyes (who used to be the director of the cf clinic in OkC before Royal). Sometimes I feel like we are getting nowhere too. Don't get me wrong, his doctor has done all the tests that can be performed/required. It's just I feel like he is "falling through the cracks".
I see children on here getting aggresive treatment and such. We are getting no treatment right now for my son. I honestly don't know if that is good or bad???

My son has had a t/a a month ago and now is sick with a bad sorethroat - he had an infected tasted bud the past week and now the sore throat. Anyone know if it is normal to get a sorethroat so soon after a tonsilectomy?

Oh, we live in Moore, Oklahoma. Do you all like the CF clinic/Royall? Our doc. says he can send us there for a second opinion if we like, but overall
we really like Dr. Reyes.

Good luck Deb.

 

[imondeck]

Deb, my son sees Dr. Reyes (who used to be the director of the cf clinic in OkC before Royal). Sometimes I feel like we are getting nowhere too. Don't get me wrong, his doctor has done all the tests that can be performed/required. It's just I feel like he is "falling through the cracks".
I see children on here getting aggresive treatment and such. We are getting no treatment right now for my son. I honestly don't know if that is good or bad???

My son has had a t/a a month ago and now is sick with a bad sorethroat - he had an infected tasted bud the past week and now the sore throat. Anyone know if it is normal to get a sorethroat so soon after a tonsilectomy?

Oh, we live in Moore, Oklahoma. Do you all like the CF clinic/Royall? Our doc. says he can send us there for a second opinion if we like, but overall
we really like Dr. Reyes.

Good luck Deb.

 

[debs2girls]

Sandra, I dont live too far from you....finally someone else from Oklahoma.....we have never seen Royall, but Medhi...I like her but she said Cheyenne was only a carrier and not to worry...we saw her for three years and in all that time she only did one chest xray..and that was in the beginning...
I too feel like we are getting nowhere really fast...we started going to T. L. Carey and Associates in Tulsa because a lady I go to church with takes her son to him and said he was really aggressive in treating Blaine and if Cheyenne has cf, he will be that way with her too....I am not too impressed so far...we are in the crack with you..lol...I would love to visit with you some time if you want to....just pm me and let me know then I will give you my info, k?
Debbie

 

[debs2girls]

Sandra, I dont live too far from you....finally someone else from Oklahoma.....we have never seen Royall, but Medhi...I like her but she said Cheyenne was only a carrier and not to worry...we saw her for three years and in all that time she only did one chest xray..and that was in the beginning...
I too feel like we are getting nowhere really fast...we started going to T. L. Carey and Associates in Tulsa because a lady I go to church with takes her son to him and said he was really aggressive in treating Blaine and if Cheyenne has cf, he will be that way with her too....I am not too impressed so far...we are in the crack with you..lol...I would love to visit with you some time if you want to....just pm me and let me know then I will give you my info, k?
Debbie

 

[anonymous]

Hi all
I got the results of my boy's blood tests back-- he has low iron and the other thing that confused me was that he has normal white blood cell counts but 2 of the components - leukocytes and something else- are elevated. Apparently normal leukocyte counts are 0.23 , but Stephen's were 0.57... The doctor says that he just has a cold but Stephen never gets colds. When he catchs a cold it morphs into croup and then a chest infection... not once has he ever had a cold that went away when it was supposed to - nor has he had one that stayed appparently on the inside with very few symptoms on the out. GRRRRRR I hate "patpat" doctors!!! (FYI those are the ones that take one or 2 symptoms and tell you that your child is just fine)
On another note, have any of your children ever started to look "yellow?" When he was an infant , he had bad jaundice but it seemed to go away. Now , it seems to have gotten worse and he is still losing weight - I took his shirt off and laid him on my lap and he looked like a little skeleton... there is not one shred of fat on his body. The other thing I noticed is that his muscle tone is getting much worse - he is much flabbier than he was a few months ago. I just don't know what to do and I don't want to come across like a hypochondriac mom but I wish they would figure it out!! Talk to you again!! Sherayna and Stephen<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Hi all
I got the results of my boy's blood tests back-- he has low iron and the other thing that confused me was that he has normal white blood cell counts but 2 of the components - leukocytes and something else- are elevated. Apparently normal leukocyte counts are 0.23 , but Stephen's were 0.57... The doctor says that he just has a cold but Stephen never gets colds. When he catchs a cold it morphs into croup and then a chest infection... not once has he ever had a cold that went away when it was supposed to - nor has he had one that stayed appparently on the inside with very few symptoms on the out. GRRRRRR I hate "patpat" doctors!!! (FYI those are the ones that take one or 2 symptoms and tell you that your child is just fine)
On another note, have any of your children ever started to look "yellow?" When he was an infant , he had bad jaundice but it seemed to go away. Now , it seems to have gotten worse and he is still losing weight - I took his shirt off and laid him on my lap and he looked like a little skeleton... there is not one shred of fat on his body. The other thing I noticed is that his muscle tone is getting much worse - he is much flabbier than he was a few months ago. I just don't know what to do and I don't want to come across like a hypochondriac mom but I wish they would figure it out!! Talk to you again!! Sherayna and Stephen<img src="i/expressions/face-icon-small-confused.gif" border="0">