About My Lillie :)

Several of you know that my three year old Lillie has been having some medical problems and was admitted to the hospital last week. Most of the time she is fine, but each winter she gets a little cold or runny nose or whatever and every little bug turns into a major respiratory illness. I truly believe she has asthma that is triggered by viruses. Anyway, several of you have written to check on her since chat last week, so I wanted to post a little update. Yesterday she was tested for Cystic Fibrosis and the test came back negative. So, at least we have ruled out one thing. She has been healthy and happy the last few days and has been overjoyed to get outside and play while it has been in the eighties. :) Thanks a bunch for your thoughts and prayers.
Michele and Family

Chele, that's very good news! Hope Lillie stays healthy and happy (along with the weather).
Cecelia

I'm glad to hear things are better. and real glad about those test results.

But are they checking why she gets sick so much? Asthma? Don't misunderstand me....I'm absolutely THRILLED that she's doing better, but........

Sounds like it could be allergies. Maybe having her tested would either rule it out or lead you to some meds that might help her. My Bethany has allergy-induced asthma, although we have never pinpointed what triggers her problems. She's on Flonase and Zyrtec (just like mom). :)

Chele I am so glad she is feeling better. I sure hope you find some answers soon. Give her a hug for me.

I am so glad she is better; my grandson, Gavin, will be four in a few weeks, and like your Lillie, he just had a really rough time with respiratory infections, etc, and they also did a Cystic Fibrosis test on him last year that also was negative; he has asthma and he is much much better the past few months, and the bright spot is that many times children can outgrow asthma. I really know how you feel, and all my thoughts are going for you and Lillie.

Thanks for all your well wishes. We have an appointment with a pulmonologist on the 24th. They will try to find out if it is allergies or something else and we are hoping she will be put on a preventative medication. The hope is that she won't get this sick anymore. She has had some really awful spells and scared us horribly. She has been like this every winter since she was three months old and got RSV. They told me then she may end up with asthma but they have never done a single thing to find out what causes it or to prevent it. After she had to be hospitalized, I was the mommy from, umm way down below. :) They are trying much harder to help us find answers now.

I am so glad to hear that Lillie is doing well. Sometimes, youngsters simply outgrow the yearly process you describe, and I hope that will be true of Lillie -- am praying for the best treatments to be found for her, at all times.

I know someone with similar problems, it ended up being a sensitivity to household cleaning products/chemicals..

I am glad to hear that Lillie is doing well and enjoying the beautiful weather, bless her heart.

When my Kelly was a baby, she had similar problems and was diagnosed with asthma. I remember that they seemed to be having trouble coming up with a dx. Finally, one Dr. saw her and listened to her chest and said "this baby has asthma!" Later they discovered she had allergies and the two kind of went hand in hand. I think that is why they had such a hard time figuring out what it was. Having the allergies didn't make the asthmatic symptoms "textbook". Luckily that Dr. looked beyond the norm. The asthma was treated successfully with medication.

The asthmatic symptoms were only with her for the first winter, but she was a very sick little girl. The allergies stayed with her until she was about 5. Thankfully, she out grew it.

I hope that they find out what is causing your baby to have the respitory problems and are able to treat it for once and for all.

Hi Michele..thanks for the post about Lillie...(I very obviously spelled her name wrong in my email and I apologize). I'm so glad she is doing better but I know all these tests hanging over your head aren't fun either. Take care, get rest when you can, and I keep you all in my prayers...hugs to all

Chele,
When you go to the pulmonoligist, tell tehm that you want a PFT (Pulmonary function test)it is not invasive, she just has to blow into a tube several times and then they give her some albuterol (I am sure she has probably had this before) and then they do the test again. That will help determine if she has asthma. They can also do a blood test for a "tendancy for allergies" that will tell you if she is susseptable to things like pet dander, smoke, grass, etc. If it comes back positive, they can do more extensive tests to determine what exactly she is allergic to.-
(check came today, thanks)

Chele you know I'm hanging on your every word about Lillie. It must have been lovely to see her play outside with the girls. I'll be in touch soon. Take care love and rest when you can.

Michele I'm glad Lillie is feeling better. Hope they find out what's wrong and can help her. When I was a child every cold I got turned into bronchitis. I was tested for allergies and was allergic to many things including most animals except dogs. I had allergy shots, medication and until I moved out of my parent's house I had bronchitis twice a year. In my early twenties I went to an allergist - I'm very allergic to dogs. There were dogs in our house from the time I was born until just recently. I don't know why the allergy to dogs didn't show up earlier, but I think that's why I was so sick when I was younger. Just recently I had two bouts with bronchitis and I think it's related to something I'm allergic to at work, possibly perfume.

Good luck with the tests.

Here we go again. I am ready to scream! Lillie woke up with croup again last night. A doctor from our practice said she would have a standing order for the only med that works. I called, he was off and the doc that was on said if he wanted her to have the med, he would have given me a script. So she would not give me the meds. Sent hubby out for a fan at 2am and Lillie and I slept in front of it, with me dozing and jerking awake when I didn't hear the croaking breath she makes when she has croup. I am seeing a different doc at the same practice today and managed to get her pulmonology appt moved up to tomorrow. Maybe we will finally get some answers. At any rate I will be looking for new doctors!! This is insane!

Oh good grief...how pathetic. You will look for a new dr for that child. Please keep us up to date.......

You go right ahead and scream. You'll feel better. Do not tolerate someone not completely telling you any/all info regarding this child. You are entitled to that. And get names, dates, etc in writing. I know from experience that I should've done that several times over and didn't...wish I had. Documentation is very key.....

MaMa "T"

(((((Chele and Lillie))))) Jo

chele
I have asmaticbronchitis(sp)that flairs up in the winter and early spring-ive had it since i was a kid!(LIKE IVE GROWN UP)
Its a real pain in the behiny!!! She sounds just like me. Dayme gets it all the time too! I have a breathing machine and when we get sick i put a sheet up on the living room door and we live in there with a warm vaporizer running.
I was also tested for allergies when i was 2yrs old-im allergic to grass when it ripens grass when it seeds different trees,and weeds and what a PAIN it is!
Im praying for all of you!

Oh Michele...bless your heart. Keeping you and Lillie in my prayers and also that you get ahold of a dr. that picks up the clue phone. Take care...((((hugs))))

Please let us know about Lillie; I find myself looking for any new posts you may have about Lillie all during the day. I am waiting to hear what the doctor says. Why do doctos want to hesitate diagnosing asthma in little children, I will never know, but they seem to do this. With Gavin, my grandson with the same problem, I would make him some hot tea, or warm tea, with cream and sugar, and it did help him some; it was soothing. My youngest son, Michael, had asthma, the same symptoms exactly, and outgrew it; I had it and outgrew it, and I can still remember my dad fixing me some hot tea when I was little and gasping and he was just scared to death. Your Lillie is going to be better.

This could have been a life-threatening lapse of good judgement on the doctor's part, and I find it (at best) very serious and worrisome. The doctor on call needs to be reported to your regular doctor, and a definite, indisputable plan worked out for Lillie whenever she has a problem. My prayers continue for you and your sweet child, and for the medical situation to be worked out fairly, quickly and with the best result for Lillie.

This message was edited Thursday, Apr 17th 8:20 PM

I am so happy to hear your replies and what you have to say. It is nice to have things to compare to, and it is overwhelming that you all care so much. I got a different doctor today and first thing she wanted to do was the albuterol. That makes steam come from my nose! LOL At first I thought it would be another breathing treatment, hey that helped, send us home, go back in a day or two, much worse, finally get the steroids. As much as I hate the idea of steroids, they do help and the thing we need most right now, is her breathing. Well, we did the albuterol then she agreed she would need steroids, then even did one better. I finally got the darn prescription for Singulair-something to prevent this from happening! I was told last week, her windpipe xray looked good, maybe just a bit too much mucous. Today I was told it was not okay, and had classic signs of asthma. WELL DUH!!!! On the good end of things, this doc, did finally give something preventative, as well as the steroids for five days. She said it NEVER should have gotten this bad and she NEVER should have needed steroids. Darn shame, I have said this for a few years now, but at last, FINALLY someone is on top of things. I still intend to question everything and demand good care! Heck, they made over $3k off my kids last year alone! When I couldn't get the meds last night, I threatened to switch practices and also threatened to sue them for lack of care. It didn't get me anywhere last night, but I am feeling better today. Lillie is doing okay too. Bad thing about croup, it rears it's ugly head in the middle of the night. If we can get her through a few more days, maybe things will look better. Thanks so much to all of you that wrote. :)

Oh Chele what an awful night. Bless her heart. Sounds like this doctor will be better and is listening to you. Sounds like you are on the road for some answers now. I sure hope so! I hope you both have a restful night. (((Chele and Lillie)))

Chele....there is a saying...."the most dangerous place to be in this world is between a Mother and her Child" Keep up the good work!! Jo

'Chele, I am so glad that she is better. You may be BAD *grin* but you are such a wonderful Mom. (((( 'Chele ))))

Chele keep boxing darlin',
we had a wee problem with Joe for a few years, when he seemed to be allergic to everything, which all came to a head when we had to rush him off to the hospital during/after an asthma attack. The next morning they checked his allergy rating for about 150 substances, then that evening he was let out of hospital after we got instructions to keep him away from ALL trees, (Hamburg has the most trees of any city in the world /square Km), not to let him near bread, (seemingly even the German brown bread gives of spoers), and nowhere near Corn Flakes. I asked the doc if she was crackers, but she said, "It's easy to do if your child would wear a mask" ... have you ever heard of anything so stupid??
My wife and I took him to a specialist the next morning, and he gave him another allergy check, and suddenly he wasn't allergic to even 10% of the stuff the hospital claimed he was. He mixed up a wee injection for him, and since then he hasn't had any probs.
You probably know yourself what is wrong with your wee lassie, so don't take any nonsense from these so called "angels in white", since they are only going by what their sponsors are trying to flog-off to you, and sometimes don't have a clue about what they are talking.
I hope your wee girl will be better soon, and I wish you all the best ... from my heart.


Wintermoor

Thank you! :) I really can't complain. I have five kids and with them all, there are so few problems and just minor illnesses usually. I have spent a fair deal of time at Children's Hospital and the outpatient center lately and I sure have seen some stuff. Some of those little kids bring tears to my eyes and I have to force myself to smile through it. Seeing them is surely a reminder of how well off we really are.

I am glad to hear that Lillie's condition is under control now, and that someone in the medical profession has finally come to understand what is needed. There is far too little communication in large medical practices between patients and doctors, and doctors and doctors. My ongoing prayers are with you, Lillie, and your whole family.

I am so glad you got the singulaire for Lillie; the breathing treatments may help if it is not too bad, The albuterol made my kids wild, but it was necessary. So glad Lillie is on her way to being able to rest all night, and Mama too.

I've said for years that there's a reason doctors are "practicing medicine". That's cause they still haven't gotten it right.

I truly hope and pray this dr get's Lillie healthy.

Michele, Just reading all the above , have been away from computer for a couple of days. Sorry to hear about the health problems with your little Lillie. Hope you finally have contact with a doctor that be more helpful. I remember when my oldest son had croup and it is very scarry. i co hope everything is under control now. Good Health to all of you. Donna

Wow, Chele, big sigh of relief ~ I am so glad this new doctor is on top of things! Love you guys and thinking about ya!