It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


Chacha,
Well we saw the ENT friday, they wanted to do surgery that day. I did see her scans and there are absolutely no air pockets in her Maixllary and only a tiny bit in her ephnoids, which are about 95% blocked. They checked her ears and said that she has so much fluid behind her ears that her eardrums are bulging and they think she has lost some hearing in her left ear. The could not get a reading on friday. She has a major infection in her left ear as well and they put her on Lobrid,(spelling?) and want to see if they can get it under control before they do surgery, She said her sinuses are blocked and she needs to do the surgery to open them. She also said the tube form her war to her sinuses is very narrow and she believes it may not be formed properly. She also said she wants her tested for an immune defeicency. On the 23rd when she goes back we are going to ask for a CF test. I was so blown away when they told me she may have lost her hearing that I drifted off, dad could not make it to that appointment so I was by myself and cried the whole way home. I am praying for her please do the same.

thanks!!
Chacha,
Well we had some issues with the antibiotic, it wasn't covered under her insurance but we opted to pay for it ourselves and found out that she may be allergic to it, so after that breakdown, we gave it to her and pheww she was not alleric to it. But she started pulling at her ear. So if she continues I will call the ENT to see what we should do. I can't help but read so much about CF due to her similiar symptoms. It makes you wonder. How are you so informative on CF? The ENT did say she wanted Emily tested for an Immune Deficency, but felt maybe she was to young and would not get and accurate result. But she feels like me that Emily cannot fight anything on her own. Within a day of getting sick it is very bad. Even with antibiotics she has to be on them for at least 30 days to bring the sickness under control, it typically doesn't completely go away, and if she does get better one week off meds and she is sick again. I just got copies of her records from Pediatrician and it dawned on me she has never had one full month without being sick. The longest stretch between visits on 6 days. Something has to be going on. So I will keep you posted.
Thanks
Melissa
Hi Melissa, It is so disappointing to think that your daughter might be allergic to the antibiotic they put her on. What made you/them think that? Was she having a reaction or is she allergic to others and it is in the same family?

You ask how i am so informative. I guess just from experience. We have two girls with CF, ages 16 and 13 years. My husband is a PA, first in family practice and now specializing in ENT. When he went through his ENT training he learned so much about, well obviously, the sinus' and how they effect (or vice versa)CF. Like I mentioned before, we were not likely candidates (so to speak)to have children with CF. We both do alot of searching for info. We've lived in Europe and received care over there too. So we've had the chance to experience how another country, The Netherlands, treats CF. I tend tolook beyond the US when I'm looking for answers. Meds, treatments, studies, just how they do things.

I know how exhausting it can be to look back and see how often your child has been sick. Anna had one of those years, well I guess I should say two of those years just these last two. She is doing good right now and we are just keeping our fingers crossed. Last year she seemed to be sick every other month, no sooner would she get off or finish antibiotics, IV, and within 6 wks she'd be getting sick again. She was hospitalized in Aug, Oct, & Dec, she had home IV in March. Missing three weeks of school at a time. It's hard. The year before she was in twice in a two month period. You just want them to be well. I don't know how religious you are but I found myself praying all the time, in the car, in bed, in my sleep. I swear, I'd fall asleep praying and wake up praying, even if I woke up during the night to listen to her cough.

I really do hope that this oral antibiotic will do the trick for her so that they can get that surgery done. I don't know what is involved in a immune deficiency test. Do you? If only they can just figure out what it is. I know she is usually pretty ill, and I don't think that aspergillus (a fungus) can make you extremely ill but I don't know. Aspergillus is a fungus that can grow in the lungs and sinus' of CF patients (and others as well) The problem comes when the patient is allergic to it. Anna grew it two years ago, well one and a half. You might want to do a search for aspergillus, I can't post a site here. Just to see if any of those symptoms are similar to your daughters. When Anna's got under control she did much better, sinus wise, but she was still sick alot last year. (school year). Well I have to go. I'm sorry, I guess I just gave you one more thing to look up.

I hope all is going better today. Keep posting.

Chacha
Chacha,
Yeh she had an allergy to Ceftin and the Lorabid is in the same family. But thank gosh she is not allergic to it. She started it on Monday and now she has her cough back. It is this god awful wet bubbly cough. So I am not sure who to call the ENT or the Ped. She also has been so dang crabby and had low grade fever tuesday night. UGH! I am comfortable with the ENT that we are seeing. She works out of Joe Diamggio's Children's Hospital which is a very good hospital down here. She said it seems Emily can't fight anything on her own, so she asked if we ever had her tested for an immune defiency. I told her no and she said she would like to but feels she would not get the proper results due to her age. We go back to see her on the 23rd. I am not sure if she is the one I should ask to test Emily for CF or if I should go to her ped. But too many things lead me to think of that, even though my boyfriend and I do not have it. Like the chronic diarrhea, at 6 weeks they determined that she could not asorb the fat from her formula, she has always battled the weight gain problem and she eats like an adult. She had GERD, which I read can be associated with CF and she had Esophagitis at 4 months. So yeh we will figure it out, but I am so impatient now, it as been so long of her being sick. I understand that there are processes but man oh man so hard to grasp that when it is your child.
I will keep you updated though.
ANd thank you for all your support, help and advice.

Yes Pedi-sure is a supplement but the one I talked about is much more compelete. It has helped children with many different kinds of problems. It is a food and when you get pure food in your system it helps your own body fight diseases. It starts on the cellular level and builds from that, the immune system is what needs to be built up so the body can do a much better job fighting. Yes I spelled the medicine wrong but I didn't know for sure how to spell it so I guessed. A lot of CF children have had results, it doesn't cure CF but it makes symptoms not as severe. I know you must be worried, my prayers are with you and your child. Keep us posted.
Well we saw the CF Dr. I actaully misread her test..oops. i saw the Total Value of 55, which was the amount of fluid collected. But the Dr was very nice and caring. He said he did not believe completely that if was CF he is thinking more along the lines of an Immune Deficiency. He has ordered an Xray of her chest and also blood work in the IgG, IgA, IgM and IgE as well as lots of other immune tests. He feels something is nto working right with her. He said after he sees the test results then he may order a genetic CF test. He told us he was Pulomanry Dr but she has been sick for way too long and wants to figure out why. I gave him her med records from peds office and he is getting her records from the Hospitals she has been in as well as talking with her ENT. I am soo happy we found this Dr. He is the first one to be genuily concerned about my baby. So of course I will keep you posted





All times are GMT -7. The time now is 02:21 AM.





© 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!