Saturday, April 4, 2009

Lilly's problem

First of all sorry for the absence and I'm sure there are some blogs I'll never catch up on so you'll have to forgive me if I missed something.
This is my daughter's story (at least part of it) :
When she was three months old she got sick with what was diagnosed as RSV. She eventually got better but has possessed a cough ever since. It's a dry hacking cough and doesn't seem to have any correlation to where she is or what she is doing. We asked our Dr. about it and he just shrugs and says oh it's nothing, it's just allergies or something.
Skipping ahead several months we took Lilly in for her year check up on the 20th of Feb. He was concerned that she didn't weigh enough. We had been giving her our food, soft stuff. Peas, cooked carrots, potato, noodles, and even some small pieces of meat (although these we normally ended up having her spit back out since she never swallowed them). He decided that the reason she wasn't gaining weight is that she couldn't chew well (she only has 4 teeth) and was quitting before she was full. He suggested that we puree everything we're eating and give her that. I don't have time for that so we bought her organic baby food. He wanted to see her in a month again (the 20th of March) for a weight check.

We get home and the first week and a half go okay(although she is sick with a fever and cough during this time) . She doesn't like the texture of the food but is eating it. Then she starts coughing again. Bad. Typical mealtime: We put her in her highchair, put the bib on her, put the tray on, and start feeding her spoonfuls, about halfway into a small jar she starts coughing, hard, she throws up.
This goes on for several days until we figure out that if she gets grabbed really quickly when she starts coughing and pulled out of the highchair and set on the floor we have about a 50% chance of saving lunch. We start doing this. Liquids she keeps down fine.
The 20th comes: She's a pound lighter (big surprise) he sends her to the lab for bloodwork and wants us to see a dietician. He also puts her on an expensive antacid to see if that helps the vommitting. He's thinking acid reflux. He also wants to see us the following week on Friday (27th).

Interjet mothers opinion : Yes she's little, but her dad can eat a cow and not gain a pound (high metabolism) and is skinny as a rail. He's 6'2" and weighs only 165 lbs. I don't think the weight problem is a problem since she only dropped to the 3rd percentile from the 30th and only dropped when she started crawling and moving. To me the real issue is her throwing up and not keeping the food down. Acid reflux?? In a 13 month old?? Let's go back to the allergy theory Doc.

So we go in and talk to the dietician, who, other than suggesting a different vitamin, says we're doing great. We give her the baby food, as much as we can keep down then feed her our stuff after. She sees no problems with what we're feeding her. On Friday she has gained her pound back (we fed her all day everyday that week, the kid never stopped eating and drinking, the tiny meals were all we could keep down her). The Dr. is concerned about her bloodwork, her white blood cell count is high (she was sick the beginning of the month, of course it is) and her protein is low (she's throwing up everything we're giving her). She's still throwing up and has a slight fever. We ask about the cough, is there something we can give her for allergies?? He ho hums for awhile, and finally gives us some Singular.

I gave her that friday afternoon, she promptly lost it. From Friday afternoon all the way through Sunday we couldn't keep anything down at all (liquids included). This was always preceeded by her cough. She ran a fever and spent the entire time in our arms moaning. (why is she sick again, she was already sick just a month ago??) On Sunday we stopped getting diapers. We would change them at the times we would normally have to and it was like we were pulling dry ones off as well as putting dry ones on. Monday morning I was concerned that she was probably dehydrated and I called the Dr. We took her in. She was admitted to the hospital and started on IV fluids. She was also placed on Oxygen since her O2 level was only 88%. She tested negative for RSV and Infuenza. We had a chest xray done (which the Dr. didn't bother to let us view) and he decided that she has the beginning of a viral pneumoniua. (Okay that explains the low O2 but not the coughing and vommitting for her entire life!) Tuesday morning they took her off of O2 and let the IV bag finish. She had 1000 ml in 24 hours. She was well hydrated again. We were sent home Tuesday night. I asked the Dr. about the vomitting, he looked at me like he didn't have a clue and reasked us every question he's asked us already. When does she vomit? (Everytime she eats, she starts coughing and then throws up) Does it have anything to do with what food she's eating? (no) Does she do anything right before she vomits? (yes, she coughs) So she coughs before she throws up? (YES!)
Frustration takes over, hasn't he listened to anything we've been saying for the past 9 months??
We get sent home with a list of Bring her back if she starts coughing, bring her back if she throws up, bring her back if she cant breath, bring her back if.....
SHE DOES THOSE ON A REGULAR BASIS NOW! ISNT ANYONE LISTENING!

Since Tuesday we've been doing itty bitty meals constantly, praying very hard, and managing to keep lots of fluids but not much food down her. We've decided to seek a second opinion and to have her allergy tested. The problem is that the nearest town that has a pediatrician is 45 miles away and most of them aren't accepting new clients. We got told by one clinic that they "don't do second opinions", got told by another that "we only take newborns as new clients", a third "we'll give you a second opinion but we wont take you on as a client". I'm at my last nerve, ready to bawl. I want my little girl back!
We did manage to get an appointment with the only allergy clinic in Casper (we have no idea if they're a good clinic or not) and she's going to be allergy tested. They said it would be $300-$500 dollars. Tim is still laid off. We're praying that her insurance will cover it since we cant afford it but we have to do something...we can't just sit around and watch her fail while her Dr. doesn't have a clue....

11 comments:

Amy said...

Hugs for you, poor baby!

Jennifer said...

Oh my, {{{{big hug to you}}}, when it comes to children Dr.'s really get to me.My brother went through a similar situation with his little girl. When she was drinking her bottle she would kind of start to gag and choke and then stop breathing for a second. They took her to the hospital and they diagnosed her with acid reflux. She was only 3 months old. My SIL didn't buy that either.
My son has this snort thing that he does, every time I question the Dr. about it they always say "it's more than likely just a habit". Whatever, he does it in his sleep even. My husband has slight asthma and as a child I had major allergies and we both think his snort could be due to one of these, but the doctors won't even try to find out why. Anyway, I hope the allergy testing turns up something. If not, maybe it would be worth the trip to the clinic that said they'd give a second opinion, but not take her as a patient. If someone else found the root of the problem, then, hopefully,her Dr. could treat her for it. I can't imagine the stress you all are going through. Hang in there and most importantly, keep praying. I'll be doing the same for you.

Christy said...

I'm sorry for the stress. I have a friend whose daughter threw up almost every time she ate until she was 2, then it just stopped. She never did figure out why her girl was throwing up, the doctors were equally as helpful to her too.

fullfreezer said...

Oh dear!!! I can't imagine how much stress you are under right now. I understand your frustration. My oldest son (middle child) has always had 'issues'. He didn't do the typical babbling as a baby and was slow to learn to talk. He still has odd speech patterns and a lot of trouble with social skills. We asked every check up about it and were told he was fine. We finally shelled out last fall for psychological and educational testing. He has been diagnosed with ADHD (inattentive not hyperactive) and a speech disorder. Personally, I think he has Asperger's syndrome because he also has some of the odd overly intense interests in things but does anyone listen to me? Actually he has an appointment on Friday with a psych resident that I have worked with before so I may have better luck.
I do hope you figure out something with your little one soon. Best wishes.
Judy

Hot Belly Mama said...

Thank you so much for your comment about our chicken Limpy! I know that we live in a litigous (sp?) society and it's so unfortunate. I will certainly add you to my favorites and keep you in mind next time.

Thank you again...

Anne Marie said...

Oh dear....I cannot tell enough you how much I sympathize with you....in a small way I can relate to your problem....our last son, for the first 5 months would constantly cough, and was so terribly thin...all I did was nurse him, and for awhile I thought maybe he had contracted 'whooping cough', but no, according to the doctors he was 'fine'...but coughing, thin, and not much in his diaper....I learned through homedics and my own research that his esophogus was slow to develop and that until he started sitting up more and able to control his swallowing better, he would be coughing- sure enough, now that he is older, able to sit up he is chubby, healthy and such---but still has a problem swallowing a large amount at one time....he is still fed by a baby spoon and only given raw milk in small doses.....

You will certainly be in my prayers- I will not forget to pray for you and your poor little honey....

stop by whenever you get the chance- don't worry about catching up- your life is more important :)

Blessings.
Anne Marie

LillySue said...

Bless your heart!! What a time you are having! It is soooo hard when it is your little one. I am so sorry the doctors are not being very helpful, insiteful or really, even interested. How frustrated you must be. I will keep all of you in my prayers. Keep us posted on how she is doing. How are YOU feeling? I wish I could reach thru here and give you a hug and a cup of tea with a homemade cookie (gluten free of course!) Hang in there, we are thinking of you!
Blessings~ LillySue

Lola Nova said...

Just sending you good thoughts and hoping a doctor will listen to you!

Michael said...

Hello JLB
Sorry to hear about your little ones problem, I hope she gets over it. We were freakin out when our first born had RSV.
I have a post request for you. My buddy and I want to move our families to either South Dakota or eastern Wyoming (low taxes and cheap land) and have farms and live off the land. I can only find so much information about these areas on the net (rain & snow totals, wind & sun amounts, temps and well depths), it would be great to have a personal account of that info. The counties we are mainly interested are Butte County SD, Carbon, Albany, Natrona and Converse county Wyoming.
My request when you have time. Could you blog on the seasons and tell about rain & snow totals, wind & sun amounts, temps, bugs, snakes and garden growing and anything else that would help us learn more about the area you live in.
Again I hope Lilly starts to feel better.

Michael in Kansas

Cat said...

I would def. go down the allergy road. I had horrible allergies when I was little. I got shots for a couple of years and things got much better. Then they hit me again as an adult. I'm back to shots and thankfully getting relief. I know when mine do act up and I have a lot of drainage, I want to vomit too and I almost always have an upset stomach. Hopefully an allergist will help her. It's terrible when a little one is sick and you don't know why. Hope she's better soon.

Jenny said...

I hope you find out something soon. It's so hard when doctors don't seem to listen or tell you anything helpful. It's also especially hard when the little patient can't tell you what is wrong and you have to do all the figuring out.
~Jenny~

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