• Profile photo of jaybirdjaybird
    Member
    #171205410198

    Oh goodness…!!!!
    1/ As posted… she should be getting labs yearly. This has truly been NEGLECT not to do so for so long (edited to add: on the doctor’s part, not yours of course!!) I agree that thyroid disease sounds quite possible when considering the weight gain and constipation and needs to be checked into, along with the rest of the “cf annuals.”
    2/ As posted… she should be getting sputum cultures every 3 months. How have they known what to treat and when without keeping up on these?
    3/ she should get an X-ray yearly and as needed with illness. You only get exposed to ONE WEEK worth of “background” radiation when you have a chest film- so there is really no excuse here. It’s not the huge dose you are exposed to with a CT scan. Benefits far outweigh risk.
    4/ It’s good you are doing manual cpt and that’s fine if you are comfortable with it, but why doesn’t MGH believe in the vest for a 5yr old?
    5/ I would strongly recommend trying CHB. Their CF center is very highly rated. Even if you have to go into the hospital, at least you’ll be getting care that is up to recognized standards for CF patients. call them and tell them your 5 yr old has not had labs in 4yrs, hasn’t had sputum cultures as she should, has had no imaging, has no vest and is on few treatments, etc and I have the feeling they will get her in pretty fast.

    Wishing the best- I hope you can get help for her soon!

    Profile photo of jena120406jena120406
    Member
    #171205277459

    I totally agree with the others on here. I cannot believe she has not had any blood work since she was one. My son is 11 and he has bloodwork, X-rays every year. Sputum cultures every three months or if sick docs will check then also. I do have a 7 year old that does not have cf and he has gained over 10 lbs in about a month and half. His LEDs doc is running blood work on him for thyroid and the works. He is 78 lbs. so go with your gut and make sure they check her out thoroughly. I would rather find out its nothing than to wait and find out there was an underlying condition going on. Good Luck!

    Profile photo of welshwitchwelshwitch
    Participant
    #171205422037

    Ditto on what Jenny said. Also, you don’t mention Albuterol or Xopenex and I didn’t think you were suppose to do hyper-tonic saline with those. And what about the vest? Also why isn’t the CF Center doing the blood draws and the cultures? I guess I’d recommend sitting down with the CF Center you and the doctor and explaining what you are doing and ask what they want you to do. And request the CF Center to handle the blood draw orders and culture, since they know what you are doing and they should be overseeing those anyway. Do you have copies of the letters they send your other doctor? We receive copies of those. If so, if there is something inaccurate, you should discuss that with the doctor.

    Profile photo of lady01shadowlady01shadow
    Member
    #171205421974

    Does she not do Pulmozyme? I thought all CFer’s in the US were on Pulmozyme, I could be wrong though. I do find it odd that they have her on Vitamins with them not checking to see what her body is absorbing. If she is just now on enzymes then she might not have issues absorbing the vitamins. I would want them to check her blood work for sure, and ask about Pulmozyme as well when you go in.

    Profile photo of GEDRGEDR
    Member
    #171205424571

    Im thinking maybe the letters that go to her PCP from her cf Dr. might make her think im doing something wrong? or maybe because shes not on alot? she is on saline, viatmins, minerals, pre and pro biotics, enzymes (from nutritionist). she has finished her antibiotics that we did to try to rid the mrsa and the cf doc would like to wait until she needs antibiotics again prior to doing more for the mrsa. so I am lost as to what the problem is. I never miss any apts we are there every 3 months shes done tobi cipro bactrim every time they have ever said we needed to. So I am thinking how ever he words his letters to the pcp makes her think I am not doing things right. I am just going to demand he do blood work at the next visit like it or not I am also going to make sure to increase her activity level even more. shes 5 she bounces off the walls from 7 am to 7:30 pm.. The thing I do like about boston is the cf clinic is not inside of the hospital the last clinic that we were at was in the hospital and you had to wait in a waiting room with the walk in sick clinic for children. we have done 2 chest xrays once at the prevois clinic when she was one and one when her mrsa was really causing alot of congestion this year.The cf doc says xrays annually for kids is to much they will get plenty throught there life.They stated her on the beathing machine for pfts this last visit and said they will do this every time she comes.

    Profile photo of welshwitchwelshwitch
    Participant
    #171205425077

    I’m a little confused. Why would the doctor’s say that you decided to take a hands off approach? Did you tell the doctors you are doing all of the treatments? What treatments are you doing? Are you doing the holistic approach in addition? Just trying to think through a proper response to the doctors because that weight gain seems unfathomable for her age absent a medical issue. So maybe you need to see a GP to address other concerns. But it sounds like you and the CF clinic are having mixed signals if they are saying you are taking a hands off approach and you are saying you are doing all of the treatments. It might warrant an appointment with just you and the doctor where you ask why they think you are taking a hands off approach and you can correct any misunderstanding and then you can insist on the blood test, cultures and annual xrays.

    Profile photo of GEDRGEDR
    Member
    #171205429378

    We went to my daughters PCP on friday. She stated since you chose to take the hands off approach to her cystic fibrosis and not have her on any meds like my other cf children then why should they even bother testing her and if it were an issue(liver) she would not be constipated. She stated that it is proberly just her diet and lack of physical activity. Ok so when she was one we were at a clinic where she caught psuedamonus and mrsa so we decided it was best to go to boston (world class) 45 mins away clean compared to our hospitals. I have followed every medication and anything and everything they have told me to do except for…. enzymes from them because last she was tested at one she was pancriatic sufficiant.she does take enzymes but only recently stated( since may) from her nutritionist They said we should start them and I told them to test her poop they said no need to ???. We just got done doing rifampin and fucidic acid which I had a Dr bring in from europe to try to get the mrsa to go away and this was something her cf Dr. Recommended and wanted to do. She is on plenty of vitamins glutathione minerals pro biotics pre biotics miralax. Her Dr. does not use the vest so we do it by hand and alot of bounce house time we are active. The only difference in her activity level is swimmimg less. Our lake had a major sewer spill which the town has not and will not fix so the ecoli levels are to high to swim. but that is her only difference in activity and as for the hands off approcah I have spent thousands of hours resarching natural holistic nutritional things that all benefit her.We rid her of pseudo with glutathione still something her Dr. cannot believe due to the amount of meds they used which did not work they had givin up and deemed it cronic. So im not sure why I am all the sudden the bad one. I have asked about blood work and so have fellows when in clinic her DR. always says I dont think she needs it I take a more hands of approach with her… We are currently waiting for her to have an issue so that we can due the rifampin and fucidic acid along with more to try to rid the MRSA which she had since she was one and thay always said to leave it now they say of its becomming an issue that is all new to cf we could control cf but now with mrsa it is a whole new thing.I do not want to due the rifampin and fucidic acid with out liver testing since both can greatly effect the liver??UGHHHHH sorry to keep rambeling. Went to dentist on friday also they will monitor her adult teeth comming in every three months because of all of the areas that do not have enamel they said later we could veneer them once she is old enough if she wants to.

    Profile photo of mom2boysmom2boys
    Member
    #171205429354

    they have not done any blood work on her since she was one.

    What the… ?!?! And you were told her liver functions were off at one and…. NO BLOOD WORK?!

    Change doctor/clinic.

    Profile photo of mollimolli
    Member
    #171205429348

    Everyone here has excellent answers. You and your daughter deserve better! (This is worth reading: http://www.newyorker.com/archive/2004/12/06/041206fa_fact)

    I just wanted to add that my kids are pancreatic sufficient and weight gain is NOT an issue like it is for people with insufficiency. My daughter (40 KG at diagnosis less than a year ago – 16 yrs old next week) has gained over 17KG in half a year. In our case, she looks healthy now; but , the dietitian did tell her she didn’t need to worry about gaining more). I did see my 8 yr old lose 2 kg when he got sick last month, so I see it goes down easily. But he bouced right back.

    I am in Israel, and they use that EMLA cream here. My daughter didn’t want to do the blood tests for the research they asked her to participate in and they mentioned using this cream to convince her to join….

    Good luck and down with guilt!

    Profile photo of my2girlsmy2girls
    Member
    #171205054429

    That is a huge weight gain…the first thing I think of when I see that is thyroid disease.. Does she have any other symptoms such as fatigue, skin changes, even hair changes? I have Thyroid disease and weight gain was part of it, and quickly I might add. I was also tired all of the time and constipation was also a big problem…perhaps your daughter’s constipation isn’t CF related but related to a severely underactive thyroid. I know there are other conditions that will cause a rapid gain, but it’s best to get a thorough examination by a PCP at this point.. Sometimes I feel that CF centers become tunnel visioned, they look at every symptom as CF related but that isn’t always the case. Good luck ,I hope that you find the answers soon!

    Jenn 40 wCF

    Profile photo of cfbloggercfblogger
    Member
    #171205296407

    OMG!!! Do not let them let you feel like this. A ‘larger’ CFer is great. I myself was/am a larger CFer. At one point I weighed 210 pounds on a 5’9 frame. I lost weight at that point to get down to 190 which was still considered bigger but CF clinic said to leave it be. Now I struggle to keep 160- I’m at 42 percent lung function and each month lose 2-5 pounds. DO NOT LET THEM SCARE YOU. I think the constipation thing has a huge amount to do with it. I can easily lose 10 pounds in a day just because of this and I know many CFer’s (like myself) who have jeans that range up and down by 2-4 sizes for the constipated days or the prednisone days. I suggest a new clinic, miralax daily and starting now with making your daughter understand that she can’t afford to be skinny like her friends. Shes storing reserves for later- even if it is 20 years down the road!!! I don’t mean to rant but this is one thing I hugely regret- I can’t keep weight on now.

    Profile photo of welshwitchwelshwitch
    Participant
    #171205296660

    Jenny & Rebjane totally nailed what I missed. No blood work?? And also thyroid issues would seem like a huge possibility. Re the blood work and culture–our son is younger (3), but what we do for the blood work is bring a “t-shirt materials” (stretchy and comfy) full sheet and pretend he is a catapillar while I basically wrap his legs and arm up to his shoulders tightly so he can’t thrash and then dh holds the “draw” arm. The last time we went, the lady pointed us to a room with a chair only and I said “we need one with a cot” and she’s like “oh, can’t you hold him on your lap?” hellllllooo people–he’s 2.5. He ain’t gonna sit there calmly while you did for a vein! He screamed for the first 10 seconds but then calmed down and did better as it went. Re the culture–he hates that but I hold him on my lap with an arm around his forehead and basically grasps the jaw and the nurse gets it in. Last time he actually opened by himself but then clenched when she went in, but the nurse is a pro and got it in and out.

    If possible, you might really want to check into the other Boston center given that this just doesn’t seem right. But you are on top of things and I’m sure you’ll get back on track soon. I can only imagine how frustrated, angry, worried, and exhausted you are. hugs, hugs, hugs (and lots of prayers too).

    Profile photo of GEDRGEDR
    Member
    #171205296659

    Thanks for listening and giving advise I love all of you for supporting us.

    Profile photo of lady01shadowlady01shadow
    Member
    #171205296706

    Oh bless your heart!! We have been fighting Abby since birth with blood work and cultures, but they as dr’s should know that that is what keeps our littles ones healthy. We don’t do it to torture them we do it to keep them with us. My heart is aching for you right now. Abby has had 15 surgeries so has been poked and prodded more than the law should allow! She is very muscled up and it always takes 4 to 5 nurses including her muscled up dad and I to TRY to hold her still for all of these unpleasant necessities! Now that she is 7 she is finally getting use to it and is being more of a big girl about it, but I don’t think she would have without the experiences that she has had. She has learned that they are gonna do it whether she likes it or not and that it goes much easier if she just cooperates. And I have heard numerous times that CF effects the teeth, I’m not sure what about the teeth but I know I have read that it does. I have trouble with Abby’s teeth chipping, but she grinds her teeth too. You are a good mother!! Shame on them for making you feel other wise!! Sounds to me like they should be shamed for not taking a more proactive approach in your daughters well being! CF does stink and is not fair to anyone, mother or child :( Abby cultures MRSA as well and has for about 2 years now. I can’t believe that they are not keeping a closer eye on her liver function if she is already having problems. Please keep us posted! This just brakes my heart! :(

    Profile photo of sugarmagsugarmag
    Member
    #171205296705

    That does not sound right at all. The CF Foundation recommends blood work once a year for vitamin levels for accredidated CF centers. Is your child frequently on Prednisone or steroids? That can cause weight gain.. Children’s in Boston also has a CF center. Also, I would want a thyroid blood test just to rule out any thyroid issues. You have every right to get a second opinion. There is NO child that I know that will lie still for a blood draw(well except my daughter:))…I am sure they have heard of EMLA cream…Numbs up the skin prior to a blood draw and they do NOT even feel it…..My daughter cried once for a blood draw when she was 1 year old and now she is completely used to it……Unfortunately blood draws are a part of CF and they get used to it…..

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