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parents of LOs who have chronic health issues...

  1. Mrs Green Grass

    pomelo / 5628 posts

    @lizzywiz: I am so sorry! I think you are right though, you know what you need and it's a specialist to over her case. Then hard part is that you often have to do the leg work to find someone who does research into whatever issue she has. I have a friend whose son has a rare genetic disorder which took almost 4 years to diagnose. Soon she will have a specialist in a different city who will coordinate with local docs. I hope you can figure it out and I hope we can support you through it. (Where do you live if you don't mind sharing?)

  2. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @lizzywiz: ugh, I'm so sorry. That sounds so scary, don't chastize yourself for it being a "good" episode - we get desensitized to this stuff, it doesn't mean it isn't awful!

    I'm sure the disjointed care is frustrating. I would think maybe a pulmonologist would be a good specialist to be the coordinator, given that it's (mostly?) a lungs issue? But what do I know. D's GI/short gut doctor is the head honcho for us (although he also sees his regular ped, a hemotologist, and a PT regularly) and it has been helpful. I would think even having a network of specialists (outside of the hospital stays) would be better than just the ped + hospital docs.

    Another thought, have you ever had her IG level checked? D gets IVIG infusions every 5-6 weeks to boost his immune system (since his short gut causes him to loose some of that good stuff in his blood).. and I wonder if your LO may have some of that issue as well? Not to be an armchair pediatrician or anything...

  3. lizzywiz

    persimmon / 1178 posts

    @BlueberryPie: @Mrs Green Grass: @Mrs. Tiger: thanks so much for the kind words, ladies! We have been to an ENT (that's the only specialist we've been referred to), but there were no abnormalities in her structure or function at the time, since she was healthy when we did the appt. This was also before her lymph nodes blew up.
    The truth is I've been waiting for too long for some Dr, some specialist, to tell me what to do. I am so embarrassed to say this but I waited 9 months for that ENT referral- those 9 months included 5 legit emergency room visits and/or hospitalizations. I guess I figured that the doctors would tell me what to do and they just haven't. They treat her and send us home with no further guidance- well, the pediatrician tells me to take her to the hospital and the hospital tells me to make sure to contact our pediatrician after discharge . I have been wrong for accepting that for so long.
    Thanks for giving me a place to talk about this. I don't really have that in real life because I don't even really know what to tell people and I don't want to seem like a drama queen, and I've already cancelled work and social engagements and I guess I just figured, on top of that, my employer and friends don't want to hear about it, you know?

  4. lizzywiz

    persimmon / 1178 posts

    @Mrs Green Grass: NM

  5. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @lizzywiz: I would def ask for a pulmonology referral. don't be embarrassed! You were trusting the docs but it's not working out, so do what you need to do.

    Vent all you want, girl - we've all done it. I'll listen to you all day long

  6. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @BlueberryPie: thought of you when I saw this cute video!

    http://www.lovethatmax.com/2014/10/an-extra-chromosome-does-not-define.html

  7. lizzywiz

    persimmon / 1178 posts

    @BlueberryPie: OK, kinda weird but I was thinking of you, too!
    http://timsplaceabq.com/about-tim
    This is one of my favorite places, owned by an amazing gentleman with an extra chromosome.

  8. BlueberryPie

    cherry / 105 posts

    @Mrs. Tiger: Thank you so much for thinking of me! It warms my heart to know there are accepting, kind people in this world -- they make the idea of sending my baby out into it far less scary. I've been struggling with my emotions today and you taking the time to think of me and reach out instantly helped me cheer up.

    @lizzywiz: Thank you for also thinking of me! As I said above, I needed a little boost today so your post came at exactly the right time. I've seen Tim on a few different TV shows and am always so impressed with everything he has accomplished, regardless of Down syndrome. I hope that any children I may have can make a positive impact as great as Tim's. Thank you again!

  9. Mrs.Someone

    pomelo / 5228 posts

    @BlueberryPie: Sorry to bust in here, but I saw the post about Tim and I wanted to share another story I saw a while ago. There was a woman with Downs that graduated college and was working in child development (or something related). I wish I could find the story, it was really inspiring! And have you read Kelly Hampton's blog? http://www.kellehampton.com .

  10. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @BlueberryPie: I'm sorry you needed a little boost but I'm glad you got one! I know what you mean though, when you have a kid with special needs all of the ugly comments and assumptions of the world are brought to the surface. Especially when they are too little to broadcast their needs or people just don't realize they're talking to someone with skin in the game.

    @Mrs.Someone: this is not a closed club, come join us whenever you'd like

  11. lizzywiz

    persimmon / 1178 posts

    @BlueberryPie: we love going there because the customer service is REALLY amazing- it's not just a gimmick.

    We had another rough but survivable night. Spasmodic croup is a bitch but it's not gonna kill her- absolute worst case in miniscule % is trach and i can handle that. My head is back in the game, so it didn't bring me down like last time.
    Perspective and mood changes everything for me, as always

  12. BlueberryPie

    cherry / 105 posts

    @Mrs.Someone: Thank you for sharing! I love hearing positive stories, especially when it can be so easy to be swept up in the negative. I tell LO all the time that he can be or do anything he wants -- he might just have to work a little harder. And I do read Kelle's blog. I've read and enjoyed it for years, but it took on a whole new meaning once we received our diagnosis. Thank you again for thinking of us and posting!

  13. lizzywiz

    persimmon / 1178 posts

    Happy Friday!
    I wanted to edit my above post but can't because it has been so long. I just wanted to clarify something because I thought it might be confusing if you hadn't seen my posts from like 8 months ago.
    So, I said that LO doesn't have a diagnosis and then I said she has spasmodic croup. The clarification is she has spasmodic croup and what some (but nor all) Dr.s have labeled 'respiratory inflammation' (and rashes and all the other stuff). The why to her junk, and how/ if it is interconnected is still a mystery. We know it isn't structural, asthma or allergies, but that's it.
    Anyway, just clarifying because it is something that would have made me scratch my head if I had been reading, but I wouldn't have wanted to be insensitive and ask,... so there ya go .

  14. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @lizzywiz: I'm sorry you had another rough night. Is she on continuous oxygen at home, or just when she has an episode? My understanding was that she had spasmadic croup but the underlying reason/overall problem was still undiagnosed - is that what your clarification was?

  15. lizzywiz

    persimmon / 1178 posts

    @Mrs. Tiger: you are so sweet to respond to my ramblings.
    You are exactly right. Spasmodic croup, unknown etiology (which is normal for spasmodic croup) And repeated lung infections, which may or may not be related to the croup. I was just thinking that people who haven't been on the thread since the beginning would be confused because I kind of contradicted myself.
    Oxygen during bad attacks or compromised lung function but at that point we are at the hospital, anyway. We have had oxygen at home before, and suctioning, but we don't right now. They treat each episode and illness as its own separate thing and our medical supplies come and go accordingl. In fact, they actually used to prescribe only 1 dose of her emergency medicine. If it didn't work we had to take her to the emergency room for her next dose and if it did work I still had to take her to the doctor or the hospital the next day to get another prescription to have on hand. The amount of work I missed was insane. This probably sounds crazy to someone who hasn't experienced it. In some ways I'm lucky - I've talked to parents whose concerns have been dismissed from the get go, as in implying that their kid isn't even ill. My daughter's illness is so obvious that nobody dismisses our concerns as far as her being sick, but they do kind of treat me like I'm crazy when I keep pushing that there must be something more wrong than spasmatic croup and bad luck.
    But, like I said, I've been passive, so I can't blame it all on the doctors. The good news is we have an appointment with the pulmonologist in 2 months.
    and I've been completely monopolizing this thread, so if anyone else wants to gripe, or brag, please do!

  16. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @lizzywiz: I'm glad you'll be seeing the pulmonologist! good luck!

    @BlueberryPie: another link for you (for all of us really).. the blogger has a son with CP, I follow her personal blog but just realized she also blogs for parents.com:

    http://www.parents.com/blogs/to-the-max/2014/10/16/down-syndrome/what-people-cant-tell-about-kids-with-down-syndrome-from-looks-alone/

    Going on a work trip tomorrow - wednesday and I am PUMPED to get some solid nights of sleep! Total 180 from how I felt about work trips when DS1 was this age, but whatever, I'm not going to make myself feel guilty

  17. lizzywiz

    persimmon / 1178 posts

    @Mrs. Tiger: oh, have fun! Sleep, eat good food! Get dressed in peace. Sounds like heaven.

  18. jhd

    coconut / 8079 posts

    Can I join in here? I feel liked might not fit because I know some of you are dealing with more serious health concerns than we are, but I feel like I don't really fit elsewhere!

    LO was born in April with Pierre Robin. He spent 3.5 weeks in the NICU at our home hospital before transferring to another NICU 4 hours away where he had corrective jaw surgery and stayed another 4 weeks. He has a cleft palate & surgery to repair that is scheduled for January.

    We have had a lot of appointments lately, some of which required travel to the other hospital out of state. That's in addition to our weekly EI. And today he failed his follow up hearing screening so now we have yet another appointment for this week to see the ENT about the fluid in his ears.

    I'm just tired and discouraged and need a safe place to share so I hope you ladies don't mind. I know I have a lot to be thankful for, but some days it's hard to stay positive!

  19. Mrs Green Grass

    pomelo / 5628 posts

    @jhd: I think anyone belongs here. I don't post often because we don't have too many specific issues anymore. That many appts must be really overwhelming!

    So after a season of illness, we now have a nebulizer and a pulmonology referral to check for asthma. This is by no means a shock, but again, just more more thing!

  20. jhd

    coconut / 8079 posts

    @Mrs Green Grass: thanks. i'm sorry you are dealing with so much illness. i love this time of year but it brings on a new set of concerns when you have to be so careful about your LO and germs.

  21. lizzywiz

    persimmon / 1178 posts

    @jhd: this is definitely the place to share your struggles! To me, regardless of severity, it is easier to share with parents who have experienced the realization that, "My child is NOT healthy' in the typical sense. And whether for a short time or for a life time, we experience the world a little differently than parents who have never had reason to worry about the things we worry about.
    So, welcome and vent away.
    All of that travel sounds very hard and expensive. And w/ cleft I am sure you have had to deal with feeding issues and the like- that is tough! And now to have one more thing....the fact that you are even TRYING to stay positive is amazing. I feel like sometimes we just need a moment (and maybe a friend) so we can be angry and sad and scared, and then we can get back on the positivity horse.
    How is your support network? Any IRL cheerleaders?

  22. jhd

    coconut / 8079 posts

    @lizzywiz: thank you we do have a lot of feeding issues. we see a SLP for help with that. he has special bottles and has thickened feeds. not sure if his swallowing issues are related to his cleft or not.
    DH and my mom are wonderful support and the ones i talk about stuff with most. i usually try to stay positive with any other family members. we had awesome support from friends while in the NICU (texts, emails, cards, etc.) but i think most people assume everything's ok now. which obviously things are much better, but i'm not recovered from it all yet, if that makes sense. i feel like i made a lot of progress in healing from everything we went through. we had september and october basically at home and only well check ups & EI. but then november/december have been crazy with appointments and i guess it just has reminded me how different things are from what i expected and how i perceive the parenting experience is for others with more healthy babies.

  23. lizzywiz

    persimmon / 1178 posts

    @jhd: "it just has reminded me how different things are from what i expected and how i perceive the parenting experience is for others with more healthy babies."

    This. Exactly this.
    I think all of my 'bad' days come from having to reset my expectations and also not compare.

  24. jhd

    coconut / 8079 posts

    @lizzywiz: yes! Comparing always leads to trouble! It means a lot to know that someone understands. Thank you!

  25. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @jhd: on my phone and will reply more later but just wanted to say please feel welcome to join in on this thread! It's a crap club to have to join but we give lots of hugs

  26. jhd

    coconut / 8079 posts

    @Mrs. Tiger: thanks

  27. Mrs. Twine

    blogger / nectarine / 2608 posts

    @jhd: Welcome! You absolutely belong here.

    I think for me, personally, it's a little hard to find people who really understand that I go through so many places with regards to my feelings and how I am coping. I really appreciate having places where there are people who understand what it is like to have to live with some of these challenges long-term. Anyway-- you can vent or use us for whatever you need.

  28. jhd

    coconut / 8079 posts

    @Mrs. Twine: thank you. i guess what's hard is that sometimes these feelings seem to come out of nowhere. other times i expect them so i'm better prepared to cope!

  29. Mrs. Twine

    blogger / nectarine / 2608 posts

    @jhd: I know what you mean. I have days when I feel like I am just like anyone else, days I feel so mad I could scream all day, and days that I just feel lost and drowning. And sometimes everything all in the same day. I have found over time I get better at being able to ask for or do things that help me, but it's an evolving process. What seems to work best for you for coping right now? I am very much a yoga person when I am doing my best and really caring for myself. I find that it helps me with mood and exercise both, and just with remembering to slow down.

  30. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @jhd: I'm sorry you have so many appointments to deal with. We've gone through stretches like that, when you feel like all you do is sit in waiting rooms and get bad news all day. I'm glad that your DH and mom are so supportive, DH has totally been my rock through this, one of the very few people I am comfortable letting it all out with. I completely understand on the supportive friends but not forever. How long can an "emergency" go on, you know? We'll be dealing with our LO's issues for many years to come, and it sucks that we're supposed to just take it in stride and move on. I've noticed that even small mentions of what we've gone through in the past make people uncomfortable - the hospital gave me an ID badge clip which has their cute bear logo, and when I get asked about it at work and bring up the fact that D was in the hospital for about 4 months, they immediately change the subject, like it was rude or something for me to bring it up. I haven't recovered from that part of my life yet either, and I've got several months lead time on you! All that to say, we got your back. Big hugs mama, you're doing a great job under a lot of pressure.

    @lizzywiz: yes, the comparison trap. I struggle with this. My coworker's LO is 3 weeks older than D and just flying past her milestones. I even find myself constantly comparing D to what K was capable of at that age. It's such a hard habit to break!

    @Mrs Green Grass: I just made D's pulmonary appt for next week! He hasn't been since just after his 1st NICU stay when he was on the apnea monitor. Hope both our D's will make it through this cold/flu season safely.

    @Mrs. Twine: I feel like the times when I'm rudely awakened from my fantasy that I'm just like everyone else are the worst!

  31. Mrs. Twine

    blogger / nectarine / 2608 posts

    @Mrs. Tiger: Sometimes it feels like the expectation or goal for most people is some sort of "cure." Like that it's okay to struggle, but that there should be some defined end to that. I feel sometimes that the fact that we still struggle sometimes makes other people uncomfortable. I get it-- I am sure it's hard sometimes, heck, often, for people to know what to say or how to be supportive, but I often feel like people I know shut me down when I am not feeling like everyone else and a little more raw. I try to do a good job of being proactive, but sometimes I'm not great at that. And yeah, being snapped out of feeling "regular" is the worst.

  32. jhd

    coconut / 8079 posts

    @Mrs. Twine: exercise is best for me. I like to walk with the dog and LO in the stroller. I'm trying to get better at leaving LO with DH so I can go to the gym.

  33. Mrs. Twine

    blogger / nectarine / 2608 posts

    @jhd: I think that it's really important to know what is good for you when you are feeling stress. It's a tremendous thing to know something proactive that you can do that can benefit your feelings and your outlook and your overall health. I know when I slack on fitting self-care (like the yoga) into my schedule, everything else really takes a nose-dive. Does it still feel stressful to leave him at all? I had that with both girls; I have always had issues with anxiety and am a real bear for the first few years. But it might be good for all of you to really feel like you can put 100% of his care on your husband even for a little while. And if you aren't ready, that's okay, too. You'll get there.

  34. jhd

    coconut / 8079 posts

    @Mrs. Tiger: yes to others the "emergency" has passed. The texts and emails stopped as soon as we brought LO home for the most part...and that was when I finally was able to breathe a little and realize everything we had been through.

    Although we are MUCH more settled and confident as parents now than we were this summer there are weeks when we are really just struggling. DH gets swamped at work and LO has tons of appointments so we eat pizza rolls and no chores get done! Haha

  35. jhd

    coconut / 8079 posts

    @Mrs. Twine: I started by going to the grocery store five minutes down the road. At first I used to text DH several times to check on him. This week when I went I didn't text at all. I would like to go to some group exercise classes. I managed to do it once and have been a few times just to work out on the elliptical. DH does great with him and my mom will help me too I just have a lot of anxiety still about leaving him. But it's much better than it was.

  36. Mrs. Twine

    blogger / nectarine / 2608 posts

    @jhd: You're mking progress, though, which means that you are making a real effort to replace that anxiety with trust and confidence. It's taken me with both girls until they were about three to not feel as anxious whenever they aren't in my sight. Silly, but everyone is different and that's okay. I bet you'll be able to fit in some group classes before you know it!

  37. jhd

    coconut / 8079 posts

    @Mrs. Twine: thank you sometimes I get frustrated at myself for making such slow progress but it'll happen!!

  38. jhd

    coconut / 8079 posts

    @Mrs. Twine: @Mrs. Tiger: @lizzywiz: @Mrs Green Grass: a heartfelt thank you to you ladies for all your comments. I feel 1000 times better than I did the other day. I hate that you all have been through so much but it means so much to know that someone understands.

  39. lizzywiz

    persimmon / 1178 posts

    @jhd: well, thanks to you, too! For sharing. Because (and I mean this in the least selfish way possible) it helps to know other moms have 'bad' days, too.
    Good luck to everyone in the next several weeks as we all enjoy/ cringe our way through holiday mingling (aka the parade of possible new germ exposure). LO had an episode at 12am Thanksgiving night and while I was grateful that we were BOTH off work (never happens) to take care of her, I am definitely hoping to get through Christmas Dr. free.

  40. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @jhd: so glad you feel better! come here to vent or whatever any time, we all do it!

    @lizzywiz: ugh yes, fx for a smooth holiday for all of us. I don't even think I mentioned that D dived off of his high chair the night before his 1y bday and we took him to urgent care (he was fine, wanted to check for a concussion since he landed on his forehead). We joked he wanted to get ONE more emergency in during his first year.

    I'm a little nervous since apparently the flu vaccine doesn't match the strain going around this year that well? A coworker and his three kids all got the flu despite getting the shot

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