Off topic- terrified

Hi Rose,

I know I have not responded to many posts here lately but I do read them every few days. I am sorry your son is having such a difficult time and you as well. I would definitely call his pediatrician and see what she says as well. It sounds like you have done the right thing by calling the Children's metabolic clinic, and trying to get the results. You are a good mother and doing what you can on top of trying to get better. I cannot know what you are feeling. If it continues definitely call the Pediatrician to get the baby admitted. Check his weight. I know this is stuff they say and could be an issue they have said in the past. I hope all is ok. Try to hang in there.

Leta

We too him into see his pediatrician. The doctor said it is possible he has a food allergy/intollerance since he didn't handle milk based formula and isn't keeping the soy down well either we are to try Simil@c Aliment^m for a week. He also said gastric reflux is a possibility as well as a problem with the intestinal tract but no tests can be done for the intestinal issue for another week or two. As for the reflux he wants to see if the hypoallergenic formula works to correct the problem before we try medications. After 1 feeding on the hypoallergenic we have not seen any spitting up, no vomiting, and no screaming like he is in pain. But to know for sure if this is working we have to wait 24-48 hours minimum a week maximum. If this is what killed my other children then I am going to be royally ticked because that would mean that all my visits to the doctor asking for help with these same symptoms could have been solved simply by trying hypoallergenic formula and maybe something for reflux issues or a simple test to check the intestinal tract for very narrow areas or swelling. The metabolic clinic said without records on at least one of my other children and an autopsy report on my son there are no real clues on what to look for. Both sets of metabolic screenings were completely normal so this is not any of the problems that everyone assumed were the probable culprate. I am tired and have a headache from the high pitched screaming all day today. Since he is sleeping I am going to take something and get a nap. My husband is staying home since he has less than an hour left on his shift. He will watch Alexander for me. I am hopeful but still skeptical because I do not want to believe it was something so simple that everyone missed in the past.

My thoughts and prayers are with you and your family. You know we don't always know why things happen the way they do. Just try to relax while the baby is having a good day. You need that right now. I know you want answers but you need sleep/rest as much as you can get right now.
hugs
carol

The new formula seems to have helped considerably but he is still showing signs of reflux problems. I am picking up a special positioner that will allow him to sleep on an incline instead of flat since that is supposed to help a lot. I found a used one for 1/3 the price of a new one and it looks good. Just have to take the cash and pick it up tonight. I just want him to feel better and for the scary stuff to stop. He hasn't thrown up again since starting the new formula and spits up very little now. He also is not screaming in that high pitched pain tone anymore. BUT he still arches his back, makes choking noises, and acts like he is bringing something up only to swollow and cry. If we have to use zantac drops we will because I will do anything to make him better. Reflux at least can be managed. Food intolerances/allergies can be managed too.

The biggest problem will be the fact that the new formula is almost $30 a can. Really expensive, though WIC will cover 7 cans a month minimum maybe more. I got enough sleep I don't feel like I am ready to drop anymore and will be resting this weekend too.

Hi Redrose,

 

I'm so sorry to hear that there are complications with Alexander.  It's good to hear that the new formula is working better for him.  My sister was on Similac when she was a baby. She had horrible D whenever she breast fed.  The Similac worked wonders for her apparently.  I hope it's the answer for Alexander too.

 

Ginny

Hi redrose--
I'm so sorry you are going through this with Alexander. I can't imagine the terror and anxiety you feel. I'm glad the new formula is working and that this doctor seems to be producing some positive results. Metabolic disorders are awful, especially for babies. And formulas, though they try hard, cause so much gas and problems.

I would definitely seek a second confirming opinion on his condition from a good medical center, even if he seems well. And maybe even another after that. You are totally justified in asking for full and complete testing after what happened to your other children, and they can make the paperwork work so medicaid or whatever insurance pays for it. The main thing is to go through with the testing even if the symptoms seem to go away. Otherwise, you'll just worry and that won't be good for you or Alex.

I understand your potential total anger at considering that your other children's problems could be the same thing and their deaths have been prevented with simple changes. I would be going through the roof at the sheer incompetance and lack of value of human life, especially innocent babies. I hope it helps to know I sympathize and though I don't know exactly I feel your pain and anger and hurt and if I could take it away, I would in a heartbeat.

I have a really good feeling about Alex and this doc, from what you have explained and him getting so much better with the new formula and hopefully with the incline. My son had high pitched shirll crying and ended up having epilepsy and I didn't know it. I often wondered if those times were seizures and not colic. I would pay close attention to those cries (like how can you ignore them;)) and if he keeps crying in such a manner, confront his doctor about it and the possibility of other problems too.

Those formulas just make so much gas usually, its hard to burp enough and you don't want them to throw up if they are throwing up, so its just really hard to know how bad it is. I hope they can give him some good medicine for it and stop the spasms.

Please know I'm praying for you both.

Redrose, my heart and paryers go out to you and your family. Like every one else I could not imgaine going through what you are going through. And it so sad that when our children are that young and some thing is wrong with them we can't help them because they can't tell us where it hurts.

Please give him a kiss on his head for me.

Veronica

Hi, How is Alexander doing? I am praying, I pray by thinking, its the only way I know how,
I am thinking of wee Alexi and praying nice things for him
My thoughts stillwith you rosie and the baby.
xxAnn

Three times today he refluxed formula out his nose-it has to hurt given his reaction. Yet even with all that he is still doing better than he was before. Today he met his sisters which may have made the reflux worse because usually he has a quiet day. He loves the sleep positioner. We have a bouncy seat with vibration and he seems to like that too. He is so small his car seat is not a good sleep option. At least he can eat more than 2ozs and not vomit now. If he continues refluxing Thursday his doctor will order tests and meds. I am worn out today and my feet are so swollen they hurt so I am planning to lay down the rest of the night.

Hi Redrose--
glad to hear Alexander is doing well. I understand about the formula, I nursed mine and when I switched to formula to wean them, they got really colicky, but that was regular old formula, still, I think it must not sit that well. My kids as little babies liked that swing thing you wind up. It kind of kept them in a sitting up position more. And I had a basket made to keep a baby in, I don't know what they are called, a relative gave it to me, I used all the time so I could lay down and keep the baby near me and I would raise the head of that up when my kids got stuffy and such. I loved that basket.

Well, I'm happy to hear that things are going okay and you all are managing. Will keep you in my prayers.

Hi, Redrose,

I'm glad to Alexander is doing better. I had a horrible reflux problem when I was a baby. My mom said that it took a long time for the doctors to figure out what was wrong, but eventually they did. It turned out that the little flap between the esophogus and the stomache was under developed. They didn't do anything about that problem back in the 70's (don't know if they do now), except for seepling on the incline. They said eventually it would heal itself, and i guess it did, because by the time I was a year old I didn't have the reflux problem anymore. Sometimes the simplest things can cause the biggest problems. I will keep you and Alexander in my prayers.

Take care,
Robin

Redrose,
I wish you a few hours rest and a little time to yourself. I hope you are doing good and good news about Alexander. Hopefully the xantac will work. know that I'm praying for you.