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Chronic roll call!

  1. Ms. RV

    pear / 1930 posts

    @lilyofthewest: So not quite the same thing, but when I was 20w pregnant with DS, they found a heart defect. After that I was essentially getting echos every two weeks. They really couldn't assess how bad he was going to be, how many surgeries he would need, etc in utero. So I spent the next 19 weeks in limbo. I just kept myself busy. I only let myself think about his health during doctor appointments... which, if you are in the NICU, is going to be hard to do. But maybe not try to think about it unless it is during rounds?

    Sorry I can't offer more advice, but if you need to talk I'm here! DS was in the hospital for 8 weeks after birth (but only like 5 days in NICU, so my experience is much different) so I know what it is like for the most part.

  2. luckygirl

    grape / 75 posts

    @ LILYOFTHEWEST: Being in limbo is hard. We have experienced a fair amount of uncertainty about our son’s health, as he has chronic leg pain and stiffness that doctors were not able to diagnose for three years. The doctors’ predictions ranged from him growing out of it to testing him for specific life limiting conditions (ie they had no idea what it was or how to figure it out).
    What helped me during those times was that in some ways we were no different than any other child or family – while yes he has some symptoms that were concerning, all of life is somewhat of a gamble. We are all lucky to be here together while we can, so let’s enjoy what we can.
    We finally got a diagnosis after three years, which has helped with peace of mind. But we still don’t know how severe his orthopedic condition will be and what exactly it will look like as he gets older.
    I mentioned earlier in this thread that during waiting periods I have found it helpful to try to do something else related to helping with my son’s health - whether that’s making some calls to other doctors to check in with, scheduling other appointments, adjusting something with his diet or sleep – it helps me to feel better if I can accomplish something else positive towards his health, channeling my worrying energies elsewhere.
    I hope that you can get some answers soon!

  3. anonysquire

    cantaloupe / 6910 posts

    We just got out 2yr olds whole gene genome test results back and got a whole lotta nothing! They had told us that 60% of people don’t get any answers, so I should have expected it. Just sucks. I wanted more of an answer about my sons dwarfism. But also to figure out what him and my 3yr old have going on genetically. They both have frontal bossing, giant heads, poor appetite, chronic diarrhea, can’t gain weight. They are both way below the 1st percentile for weight. The 2yr old has always been that way and the 3yr old dove off from 20th percentile a year ago. I don’t know, just wanted answers. Just want them to gain weight. Both of them have lost weight this year. Ugh!

  4. Ms. RV

    pear / 1930 posts

    @anonysquire: Ugh It sucks not having definitive answers. How are they doing with their feeding tubes?

  5. luckygirl

    grape / 75 posts

    @anonysquire: I’m so sorry that you didn’t get any answers. The not knowing does suck. And I’m sorry that your boys have lost weight too. Please keep us posted as to how you and they are doing!

  6. anonysquire

    cantaloupe / 6910 posts

    @luckygirl: @Ms. RV: both boys are doing ok with the feeding tubes. They are having way more output than what I’m putting in them, so that’s our current problem. Neither of them are gaining weight because their chronic diarrhea is so bad. It’s frustrating. We had a GI appt yesterday and the poor GI is still baffled about it and wanted to admit my 2yr old because he looks really sick. He’s going to run a pancreas function test and a test for cystic fibrosis. And then will probably admit and start the 2yr old on tpn. Just feels like a crappy route. It’s just frustrating to be following the feeding pump protocol to a T and it not even matter because it’s coming out in 5 minutes anyways.

    This is a pic of my 2yr old. He’s in a newborn sweater and newborn pants. I mean I wouldn’t say he looks like he’s starving. He’s small from
    His dwarfism.



  7. jhd

    coconut / 8073 posts

    @anonysquire: what an adorable little guy! 😍 I hope you get some answers soon. That has to be so stressful.

  8. Ms. RV

    pear / 1930 posts

    G-tube is coming out on Friday!!!!!! In the three months he has been off of it he has went up 50 percentiles in weight so it was pretty easy to convince the doctor he is doing fine by mouth.

  9. jhd

    coconut / 8073 posts

    @Ms. RV: yay yay yay!! Such awesome news!!

  10. Ms. RV

    pear / 1930 posts

    Hey chronic mamas... has anyone had experience taking their LO to urgent care? DS developed a wicked double ear infection while we were out of state, and I was so worried that an urgent care wouldn't do anything given his history. The urgent care around here is associated with the hospital system, so they (generally) have access to all of his records.

  11. jhd

    coconut / 8073 posts

    @Ms. RV: we have only been to the walk in clinic associated with our peds office and they can see and share all records. No issues. I hope your little guy feels better soon!

  12. QueensBee

    pear / 1718 posts

    Hi Bees,

    I’ve been on this site for a while but just now realizing that I should probably be on this board!

    My 3yo daughter was recently diagnosed with a rare bone disease. It’s usually a genetic condition but we believe she has a spontaneous mutation as no one else in our family has it. The orthopedic specialists told us that she needs to come back once a year to be monitored and they will only treat it (with surgery) if it becomes painful or malignant (very unlikely). It didn’t seem like such a big deal at the time and I was just relieved that it was benign!

    But now, as I do more research, I realize that it can be quite debilitating and devastating diagnosis for some. It can cause a variety of skeletal issues and pain. Of course I hope she has a mild case but we won’t know for decades and it’s been challenging for me to face this new uncertainty. She’s already in physical therapy and wears orthotics, likely because of this condition.

    I did find a specialty center in Florida that is considered the best in the world so we will try to get her there at some point. There’s also a clinical trial with a new drug to treat this disease so we have to think about whether or not we’d be interested in having her participate. Has anyone here ever participated in a drug trial? Would you consider it?

    In the meantime, she is a delightfully loving, active, and wonderful little girl who has no idea about any of this!

    Thanks in advance for listening, Bees. Sending love to all your LOs who face medical challenges as well.

  13. Ms. RV

    pear / 1930 posts

    @QueensBee: Hi! Welcome! Uncertainty is the worst part, I am sorry you are having to deal with it. Is the drug trial going to be for an orphan drug, or a regular release? That makes a big difference in the risk level.

  14. QueensBee

    pear / 1718 posts

    @Ms. RV: Thanks for the welcome! Yes, the uncertainty is quite difficult. I think I just need some time to adjust and accept. Parenting is hard!

    I believe the drug is classified as an orphan drug. It's in Phase 3 of trial for a different bone disease and in Phase 2 for this particular disease. Would you mind elaborating more on the different risk factors between the two types of drug release (or send me in the right direction to research it myself)? I'm having trouble finding information on the internet.

  15. Ms. RV

    pear / 1930 posts

    @QueensBee: Orphan drugs generally don't have to be as statistically rigorously tested because they can often not find enough participants to do so.

  16. QueensBee

    pear / 1718 posts

    @Ms. RV: Makes sense, thanks!

  17. jhd

    coconut / 8073 posts

    @QueensBee: just wanted to say hi 👋 and I hope you get the information you need to make decisions about your daughter’s care.

  18. MrsADS

    nectarine / 2262 posts

    How do you all handling all the juggling of appointments, information flow between providers, insurance issues, etc.? I feel like all of that is literally a full time job. I am incredibly overwhelmed and exhausted managing everything. My son sees GI, ENT, neurology, cardiology, allergist, PT, OT, about to start speech. Some of these specialists are for minor issues or rechecks that will eventually resolve, I hope, but for now it's so much.

    Not to mention work (I'm only working 3 days a week), appointments for my older son (about to start OT and therapy), and all the regular household stuff. We have no family or support where we live and I am not coping super well right now.

  19. Ms. RV

    pear / 1930 posts

    @MrsADS:
    Juggling appts: Back when DS was seeing tons of specialists, OH and I split them up. He was responsible for card and PCP, I got ENT and ped surgery, and we split ophthalmology because it is local. Talking to other chronic mamas at the hospital, a lot of them will also just set up days where they just jump appts.

    Information flow: All of my LOs' specialists except ophthalmology are under one health system, so usually record sharing is pretty good but sometimes I have to manually do it. It is also all electronic for me to see, so I always check the information after it is posted to make sure everything is there. If not, I send messages to get the information loaded.

    Insurance issues: I call while working. I work five days but have a very understanding boss.

    Regular household stuff: Every bill is on autopay. We have a Roomba. Our house is generally a little yucky but not disgusting. There are more nights than I would like to admit where dinners are pizza rolls on paper plates and lunches for DD are a PB sandwich and an apple. We are fortunate that it is only five minutes longer to walk to the grocery store than to drive, so that is my exercise when I exercise.

    I am pregnant with #3 and now I am going through a ton of appts myself. PT goes to daycare to see DS every other week instead of always coming to us, OT is going to start going to daycare exclusively. I couldn't handle having to go to them and I am so lucky EI comes to us in our county.

    Lastly, not something you asked about but probably still relative- our social life is non-existent. We will BS with our neighbors when we see them but neither one of us can remember the last time we went out with a friend.

    I am on an SSRI. I really truly couldn't handle any of this without that (had anxiety issues since I was 7 but only medicated after my oldest's birth).

    Any time you need someone to talk to I'm here Hang in there.

  20. Ms. RV

    pear / 1930 posts

    Oh, also regarding information flow, I have known people to keep a color coded binder of information. Every specialist gets a different color, but they go in chronological order in the binder.

  21. QueensBee

    pear / 1718 posts

    @MrsADS: Hugs. That sounds hard. We don't have as many specialists as you (yet!) and I can totally see how you might feel overwhelmed! I am a teacher so I have a lot of time off during the year but it comes in chunks. Personally, I prefer scheduling as many appointments as possible during a short time span (one week or one month) and I prepare myself for a miserable month. I did that last January. But then it's over and I feel like we can have a mostly normal schedule for a few months before starting it over again. We still have weekly p/t and the occasional specialist, but it feels good to have most of it knocked out during a short time span.

    I haven't thought about keeping track of complex medical records yet- that color coded binder idea sounds like a good one!

    Could you possibly find a local teenage babysitter who can help watch the kids occasionally, to give you some time to care of this stuff as well as take care of yourself? It's very hard if you don't have anyone nearby for support.

    It's so nice to have this board for support. I felt better after typing out my intro post a few days ago. Sometimes it just helps to get it out and know someone is listening.

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