SEE UPDATE REGARDING MAKAILYN BEING PI AND NOT PS, AND WHY,, DATED 11-03-2009 POSTED RIGHT BELOW THIS POST!!! <img src="i/expressions/face-icon-small-shocked.gif" border="0">
My grandbaby had all the symptoms of CF except she is pancreatic sufficient,so far,even though she has had big issues with trying to keep weight on,we've been told that this can change,in time.It is possible that you may need more than one sweat test, and poop test, and especially GENETIC testing...Even though she grew pseudomonus,staph Hib, had RSV,and had a borderline high sweat test ,a borderline low, and they said a high abnormal which was in the 80's something (i don't remember ),it was when they redid the genetic testing that I feel the doctors nipped it in the bud...My grandchild, had the most common gene which was the DF508,on the test that looks for approx 200 genes.Since the father is not involved in our life,they retested my grandbaby for more genes and found a rare gene that so far has only been found in 3 other people.But, they had to see if Makailyn's mother had both of these genes,,and if she did then she would of been a carrier,since the father is not involed in our life they couldn't test him.So, they testing Makailyn's mother and if she only had one of the genes then that meant the father had to be the carrier of the rare gene.Which we waited and prayed that the father wasn't a carrier of the gene it turned out that Makailyn's mother only had the DF508,so this meant the bio man had to be the carrier of the rare gene.ALSO,I NEED TO LET YOU KNOW WHEN THEY RETESTED FOR MORE RARE GENES, IT WENT TO A DIFFERENT LAB,( that does more extensive testing)I know,, it's confusing !!!!
I would like to stress to you,,be persistant on genetic testing,,because the sooner treatments are started the less lung damage!!! Makailyn was almost 3 when they started her on treatments,,and she has tested positive for ALOT OF PATHOGENS (BUGS),as time has gone by..She is on a very aggresive treatment plan,and we do alot of praying...She also has had the sinus problems that some CF kids have, and it seems to keep her sick alot..She has had polyp's, and adnoids, and sinus clean out done, which helped for awhile, but she constantly has bacterial infections due to the mucous being so thick it drains down the back of her throat.It's so thick, she can't get the mucous out of her nose...She also has the asthma componet.
You state your child has asthma,PS,MRSA,a high borderline sweat test and starting him on growth harmone shots.Has he ever had a chest xray? And if so, what exactly did the results say?Was there any peri bronchler thickening?
I would do what ever you have to do to get more genetic testing done...I know the insurance only covers for the basic genetic test, and we had to pay more to get the other test done,but it was alot less invasive then what they seem to be wanting to do on your child...My grandbaby is Pancreatic sufficent,but had normal weight and did a major drop down to the one percentile,,and she has terrible problems with constipation,and has to take medication daily for that.Now she is in the 8to 10percentile,and their still trying to figure that out,and have discussed several times of putting in a feeding tube.
Here's the big key I believe,,I do know I've been told more than 1000 times CF is a COMPLEX DISEASE, so it may take many doctors putting thier heads together to figure out how to diagnois certain children...It seems some kids case's are cut and dry ,2 of the same genes, PI, sweat test first time in the 90's. As time goes by , they are realizing there's alot more children now that are more complex to get a correct diagnosis,and even though this is true, for those children that are not cut and dry ,the out come of this horrible disease is the same. I guess that is why I'm so concerned that with all you've said about your childs symtoms,I would hate that, God forbid, that he might have CF and is not getting the treatments that he needs !!!! I hope I was of some help,,this is an everyday, every min. learning experience with this disease..I pray that he doesn't have CF, but if he does , we will still pray and be there for you... Please keep us posted , and God Bless you..
