I'm on the edge….

[Anonymous]

After a pretty rotten Dr. appointment, and still no answers, I’ve decided just to take my daughter to Albany ER, where they have the resources to start testing her.

At almost 7 months, she’s 12pds 6 oz, and has only gained 2 oz in over two weeks, her weight gain is at a halt. She’s been failure to thrive for a month, with an even worse decline, no height/brain growth, just a whole whopping 7oz. She’s on prevacid x3 daily, and it’s just not working anymore, at least as well as it was in the beginning. She’s on nutramigen, which she drinks fine, WHEN she drinks. She’s down to about 16 oz a day (about 4- 4oz bottles), she refuses solid foods… She’s so developmentally delayed, and the longer it takes for them to figure this out, the more chance this severe growth retardation could have permanent side effects. Her head is 39.5cm, she was BORN at 35.5, her head has grown like 1-1/2 inches! IN 7 MONTHS! And these Dr.’s keep wanting me to wait …. “Wait for her gastro appt on April 28th… wait for the developmentalist on May 19th….”

If she keeps this up, I’m afraid her little body will start attacking its own fat reserves, and SHE DOESN’T HAVE ANY!!! I live in a rural area, getting in for specialist appts is about as hard as winning the lottery. I call, put on waiting lists, cancellation, you name it….

Now, Andy’s back to spitting up with crying, and I’m not really sure how to describe it. It almost looks like a cupful of water/saliva mixed with old formula… more saliva than I’ve ever SEEN in spit up, it’s pretty bad. Her nose is stuffing up, so it’s forceful enought to be entering her nasal cavaties again- at 7 months! The lack of sufficient weight gain doesn’t bother me, some babies are small… She’s just so far behind at this point, and moving backwards, no more rolling over… I just got her to giggle for the first time the other day! Her voice was hoarse, and she hasn’t done much of it since. It was a wonderful moment, but I felt like crying, because we’ve waited too long for it….

Sorry, just had to let it go… So. My son is going with Grandma #1 tonight, because he’s on spring vacation starting tomorrow, and my 2 yr old daughter is going with Grandma #2, so I can devote all my time in the hospital to either taking care of Andy, or politely telling these Dr’s how to do their jobs. My husband drives tractor trailer, he’s gone M-F, and sometimes into Saturday… he’s coming home earlier, if Albany says anything. I’ll do just about anything to get them to figure this out!

AND I’VE HAD IT.

[Anonymous]

First, I can’t believe you do this virtually alone with 3 kids, so give yourself a huge pat on the back!

You sound like you will do great at the er! you know what you need to do. I agree, something doesn’t sound right and you are certainly justified in wanting to help her not be any further delayed. I would deal with what you are doing at the ER first and then call Early Intervention when you get back. They should start services now and be an additional resource to you!

I am sending great vibes to some long awaited answers for you!!!!!

Ann Marie

[Anonymous]

I’ve TRIED early intervention, when she was almost 5 months old. They said she was delayed, but not enough to qualify. But, back then she was rolling over, making some noises besides just crying… now, she doesn’t roll over, and doesn’t make much of any noises. They won’t come out and re-evaluate her until there’s a diagnosis made. Because of all these specialist appts, they believe this could be medical in nature, and first we need to solve the medical mystery before attacking the physical therapy. No point in putting her in therapy if there’s an underlying problem that will hold back her progress. Andy just had her cardiology assessment, no heart problems at all…. So there is something more severe internally going on, and every Dr wants the other Dr to find it. Gee, talk about a horrific game of monkey in the middle.

[Anonymous]

Have any of these docs suggested fortifying her formula? She obviosly needs more calories. My son also would only take about 15 ounces per day. He completley quit taking a bottle at 7 months of age. He would rather starve than eat. Fortunately for some bizarre reason he would take EBM or formula from a spoon, so I spoon fed him all of his EBM or formula. I concentrated one of his feedings (extra formula, less water) and I added cereal to one feeding to give him extra calories. He was prone to consitpation so I could not concentrate all of his feedings or give him too much cereal, but adding calories to those two feedings did allow him to gain weight adequately. (I’d ask the doctor first because fortifying/concentrating can cause constipation….but maybe it’s an option for you to try).

I am so sorry that you are going through this and that you have to do it essentially alone. You are doing a great job and you deserve lots of respect and admiration. I think your idea of going to the ER is good if you are being forced to wait so long for specialist appts. It does sound like your docs are trying to pass the buck, so to speak, which is a really lousy thing to do when a small baby is at risk.

Please keep us posted on how the ER visit goes. I hope you get some answers and some help for your little girl.

[Anonymous]

I’m so sorry you are stuck in this terrible waiting game with your baby. You’ll be in my prayers.

[Anonymous]

Packing up things right now, trying to make plans. Cleaning the house so I don’t have to when I get home, laundry, dishes, vacuuming…

I’m sure they’ll admit her for tests seeing her problems… It’s just hard, doing alone.

I appreciate all your responses, thank you for keeping us in your thoughts. I will post what they find when we return home.

[Anonymous]

GOOD LUCK! You are a great mommy!

[Anonymous]

Good luck!. I hope that you get some answers. . Keeping you in my prayers.

[Anonymous]

Best of Luck you are being a great advocate for your child and that is all that you can do.

[Anonymous]

Best of luck, I really feel for you. I hope the ER does better for your little girl. You are so strong and are fighting for your little girl, she’s very lucky to have such a great mommy!!

Are you sure the spit up is saliva and not mucus? I always assumed that Dagney’s spit up was saliva, but she did it at the doc’s once, and he said it was mucus. She was moved finally to Neocate. It doesn’t taste good, but you can add things to make it better, but maybe she needs the Neocate instead of Nutramigen?? Just a thought. Hopefully you’re at the ER now getting help for her.

[Anonymous]

Did your doctors give you any insight on anything?

[Anonymous]

I’m sorry, I accidentally pressed enter.

I wanted to know if the doctors gave you any insight. My worst time through my child’s reflux problem is the waiting! I go to my doctor , ad they love to tell me how we’ll call you if there’s a cause for concern. Luckily her main problem is just acid reflux, but I’m more concerned about the things that can happen BECAUSE of that…

[Anonymous]

Thank you all for your thoughts! Well, they tried to admit her into the pediatric ward, but because they were full, they couldn’t take her for “optional” testing. The ER Dr really argued, I’ll give him a thumbs up. He gave me all the referral numbers I needed, and told me I should switch to an Albany Medical Center primary pediatric Dr- they have more pull getting her in for testing ASAP. I went Thursday morning to her new primary Dr’s, who of course, were appalled by her delays and such. She’s going to have an MRI next week, see a geneticist/metabolic disorders Dr. on the 21st, her Gastro is the 28th, and of course, Albany called and YELLED at Early Intervention in my county for letting this go on so long, her new Dr. went so far as to say if they didn’t make it out within 2 weeks, she was calling the State Public Health higher ups to report them! They wanted to wait to start the Elecare formula, wanted to see what the gastro revealed. They re-ran her newborn screening blood test, just to be absolutely SURE there wasn’t a false negative. This could all be from a disfunctional thyroid, how sad if it was, and it took this long to find. They are REALLLLY concerned about her head size, only 39 cm, (born at 35.5) and she weighs completely naked a whole whopping 11pds 14 oz …. AT 7 MONTHS OLD. And, you’ll ALL love this…. mysteriously, all her medical records from the time she was 2 months old and showing signs of distress…. BASSETT HOSPITAL CLAIMS THEY LOST. I’m SOOO not joking… from the time she was 2 months (She was doing pretty OK until 2 months), she was having problems! Every Dr. she’s seen after Bassett Hospital said this SHOULD of been caught between 2 months, at the LATEST 4 months… I bet when I requested a primary Dr. change, something “mysteriously” got shredded, those records would prove they didn’t take the necessary steps to safeguard my daughters declining health. So now I have to go and RAISE HOLY HELL at the hospital on Monday, demand those records. I just COULDN’T believe it. My new primary Dr. is furious over this, because they need to show the geneticist and all the other specialists these records!! They have NO clue whats wrong with my little girl, but at least they’ve started the testing. I’m just sooo stressed out lately 🙁 Thank god I don’t work, I’d either quit or be fired at this point! But once again, thank you for all your thoughts… as soon as something is found, I’ll let everyone know. ~heather :)~

[Anonymous]

Hi! I’ve been thinking about you guys and hanging around for an update from you. It sounds like you made TONS of headway in getting her treated. Thank GOD Dr’s are taking this seriously now. How totally CRAPPY of the other hospital to “lose” those records. That is completely unnacceptable!!! I’d be down there on Monday raising hell about that too. It sounds like things are going to get answered soon. Hopefully it is an easy fix (meds or something if it is her thyroid) I am sure once it’s figured out, she’ll catch up on everything else. HUGS to you!!! You are such a great advocate for you lil girl.

[Anonymous]

OH MY GOODNESS is all I can say! Are medical records not all kept on computer now?? I work in a hospital and all of our records are, but it’s a pretty big hospital. That sounds like trying to avoid being caught in the wrong!!!!! I’m hoping you get answers and SOON!!!

[Author]

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