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I am in desperate need of prayers - Jakob

boyohboyohboy wrote: I am not sure how much time I am going to be spending here, although lately this is the only place I feel some comfort....
jakob is doing poorly. he has cont to lose weight, and is now at 18.15
The dr's have started all kinds of blood tests, which are terriblely hard on jake, he is dehydrated and its difficult to get a vein, so they have to dig around in is arm with a needle. All kinds of things and words have been thrown around lately as what could be the reason behind his reason of not eating, but for now I am waiting for some kind of conclusive test results...

Please pray that Jakob soon starts to eat, right now he is considered failure to thrive, and has major weight loss...

we are scared for him.. it seems like he is wasting away..
i am feeding him as fattening foods as i know how, so if anyone has any suggestions i am sure open to hearing them...

i am still trying to get the pediasure in him, he only accepts about 2 ounces a day. we are trying the carnation instant breakfast, and pudding and icecreams..

Jakob just wont eat...

1lilpeanut2love replied: OMG! I am SO very sorry. I hope he is alright and makes it through. Poor baby boy! I hope he begins to eat and gain weight and everything is A-Okay! MAny and lots of prayers and pt's coming Jakes way! I am very sorry again. I sure hope things are okay with him. Good Luck!!!

kit_kats_mom replied: I'm really sorry. Believe me. I know exactly what you are going through and it's no fun at all. Food and weather or not a person whom you have really very little control over eats or not can take over your life. And if you are like me, a woman who expresses her love in meals, then it's hard to not take it personally. I clearly remember being ticked all day if K didn't eat and being beyond happy when she did. We practically threw a party when she'd eat like 20 gold fish crackers. Pitiful really. Weather or not Katherine eats is still a big issue in this house and we have tried everything. At this point, I believe it's a power struggle more than anything else but OMG is it frusterating. Today was what I consider to be a good day. She ate 1/2 C fruit loops, 1/2 c milk, 8 oz carnation instant breakfast, 10 bow tie noodles with parmasean cheese and butter (yes I counted), a few bites of my cheesecake & whipped cream, half a pb&j, half a peach, a small yogurt and she's now finishing off her second 8 oz of carnation. She gets that twice a day & has since she was 2. Most days however, she eats less than half of that and it drives us all crazy.

As long as it's nothing health related with Jakob, (heart issues, absorbtion issues etc) then they can, and probably will insert a feeding tube. K never got to that point but we came very close. Our old sitters son had "issues" and he ended up with a feeding tube. K saw that and for awhile, it encouraged her to eat better. The girls are all over me right now and DH is working tonight so I'll have to come back to post more when I get a minute.

One quick thing that worked for us for awhile...we let her eat at a kid sized table in front of her favorite video. It's like the video distracted her so she'd just keep shoveling food in.

hang in there and try your best to not take it personally or let it take over your life.

Can you describe to me how/what a typical day is like for him? How is he fed (self feeding, you feeding, what's he eating, textures he likes and seems to not care for, where she sits, what's going on around during feedings etc?

kit_kats_mom replied: Oh, and how old is he exactly? At 18 mos, K was 18 lbs 8 oz. And is he meeting his milestones? If so, there is probably nothing to worry about.

C&K*s Mommie replied: From a non-experienced mother to you, I can only offer prayers and my thoughts.

But reading Cary's words seem to be encouraging. I hope they are just as encouraging to you.

jcc64 replied: I'm sure my comments are on some of the threads that Cary posted. I've btdt with Corey too. She was somewhere around 17lbs at a year. I'm sorry- I can't recall how old Jakob is. I can tell you that generally speaking, pediatricians are not as knowledgable about feeding issues as you would expect them to be. It's just not something that is emphasized in their training. I would request all the relevant medical tests, just to be thorough and conscientious, and then if and when you are satisfied it is not a medical issue, I would seek out a qualified nutritionist who is experienced with kids. It may also be a sensory issue- I explored something called sensory integrative disorder when Corey was having these problems. That was brought to my attention by my gf who is an occupational therapist. Apparently, it very often manifests itself in feeding issues. You may want to explore that.
Take a deep breath- chances are he'll pass through this stage. Keep seeking out answers until you find someone you feel comfortable with. It might take a few drs before that happens. Good luck and kup.

boyohboyohboy replied: Jakob is almost 13 months old. he gets up at 6am and I attempt to feed him in his highchair, usually stage 2 baby foods, he is only taking the smooth consistancy foods...mainly the bananas. he is also accepting the yo baby yogurt, he will take anywhere from 1 tbs to half jar...at a feeding. and a few sips of pediasure from a sippy cup...he started to self feed this week, he would feed himself the bananas and i would add in spoons of the yogurt...he has been refusing a snack, which usually consisted of a veggie...
i have been nursing him to sleep for am and noon nap, and offering the pediasure all day....kept readily available..but he only sips...

sometimes he refuses one or more meals...

he is tall, and thin. we see the occupational therapist once a week, she also mentioned the hypersensitivity issues to me, that he is hypersensitive in his mouth and to touch...he doesnt like to be held or cuddled.
we have just been exploring what this means..

right now, the dr is running all kinds of tests. we also have a history with caleb of a polyp that did cause almost all these same symptoms, so a gi consult i am sure is in the works..

i so desperately do not want a feeding tube, but would do anything to keep him alive of course.

my dr is wonderful, he is one of the top drs in the usa. he has written many books, and is well known, dr christopher ryder...he is also the top asthma specialist in the usa.

he has saved calebs life, adn there is no one i trust more then dr ryder..
and not to start a debate, here, after all i am here for support of jake, but dr ryder did say, that dr's and other professionals should tell bfing mothers that its best to introduce a bottle to a bf baby, with pumped milk at 1-2 weeks of life, because he said the number one reason for eating issues in children and weightloss is that they were strictly bf....he agrees the milk is best, but not the boob itself..i wish someone had told me that..

i am very scared for jake, we have gotten out some bottles with larger nipples to try and he accepted 2 ounces tonight...so that was a total of 4 ounces of fluids today...

in a typical day, he takes 2-4 ounces of fluid, and about 2 jars of food.

i think that was all the questins you asked...i have to look at the links you posted yet, but i will do that tomorrow..thank you for the support.

i was thinking of making some pudding with some heavy cream, and getting the avacado, anything that has high fat ...

gr33n3y3z replied: I hope everything works out for him and I'm sure it will let them run all the test and maybe you should seek out a qualified nutritionist who is experienced with kids
And saying prayers
Keep us posted

Kirstenmumof3 replied: My heart goes out to you! I hope that Jacob starts eating soon and that the doctors are able to find out what is wrong with him!

amymom replied: Gosh Stacy! I am sorry you are going through this. My advice (if I knew you in real life, I would push this) is to see a PEDIATRIC Gastroenterologist immediately. Before any more tests are done. My dd had many similar issues you have with Jake. I have listened to things you have done and you are doing many similar things I did. I think they are all good and did them all myself. My dd is now 9 yrs old. We survived the failure to thrive hurdle at 15 to 18 mos when she was only 18 lbs and going down (birth wgt of 8lbs.) I finally took her to a GI doc this year and am sorry I waited so long. I too trusted my peds office and had a better than good working relationship with them, BUT I now KNOW that they are GREAT pediatricians and the gastro guy knows just that the system that Mary Beth has had trouble with her whole life... so what better place for her to be. Everybody can not be good at everything!

And sorry to compare but all the times that I gave MB Boost and pediasure and ice cream and all those milk products, I now know was making her worse because of her lactose intolerance. And all the pasta I fed her may have been making her worse too! I wish I had complete answers for you but I do not, but know that the one thing (this is Monday morning quarterbacking it) I regret with my care of my children is that I did not take Mary Beth to a gastroeneterologist when she was an infant. It would have saved much misery.

Many prayers for Jakob, you and the family. My thoughts are with you.

redchief replied: I'm so sorry you're having such a struggle there, Stacy. There's no way I can fully comprehend how you're feeling, but I can say prayers for you and Jakob.

PrairieMom replied: I hope they get you some answers soon.

coasterqueen replied:
That is exactly what Megan has. This is one reason why our feeding team is very diligent in keeping me nursing Megan for as long as I have and they are going to watch her very closely during the weaning process when we get to that point.

As of now Megan has not eaten solid foods since the day before Thanksgiving. The doc thinks it's stress, too hypersensitive to what is going on around her. So we are trying hard to calm her surroundings. I thank my lucky stars she at least nurses so I know she can survive on that.

Anyways, Stacy if he will not eat solids have you considered nursing him again? I am not trying to tell you what to do, but IMO if he's at the point of failure to thrive and he does like nursing I'd do whatever it took to get him as much nourishment as possible. As my PED has always said babies can live on breastmilk alone til at least 2 years of age.

I also have to wholeheartedly disagree with everything I have about your PED saying that a solely breastfed baby will have eating issues (not your exact word). Why? Because my niece never ever took a bottle no matter how much my SIL tried to get her to take one. My SIL used to drive clear across town (20 miles each way) 3 times a day to nurse her child for well over a year. My niece NEVER had an eating issue. I personally think your doc is using that as an uneducated excuse because it's very easy to blame something like that. You'd never hear a doc blaming formula like that.

and pt's for your little man. I personally would take that child and nurse him 24/7 if that's what he wants to do. Take me as an example, Megan had extreme feeding issues and after months and months of feeding team appointments we've come a long way. How many visits have you gone on? It takes time. It does not happen overnight, you have to be patient and IMO give him whatever nourishment he'll take until then. Breastfeeding does NOT interfere with eating habits, I assure you that will all of my life.

I hope you don't take offense to my post. I wanted to give an honest opinion w/o sounding harsh, but sometimes words don't sound very well when read by others. I feel like I've preached my spiel many times but I think your doctors have done an injustice for you and your son.

coasterqueen replied: I also agree with Amymom about seeing a pediatric gastro doc. I can't believe your doc hasn't suggested that, if he hasn't. We actually went around our ped and saw the ped gastro ourselves because we, although we love our ped he doesn't know everything, and we were glad we did that. Our ped gastro is a part of our feeding team.

boyohboyohboy replied: Karen and Anne marie thanks so much for responding...
I am looking into getting Jake into see a GI guy asap. We are lucky to live near hershey medical center that has a large very good pediatric center. I had to take caleb there and they fixed him right up.

I know that the allergy tests should be back in a day or so, that was test for the milk allergy, I assume a lactose allergy too? and also the wheat and others....
he is going to be tested today for celiac disease, but everything I have read doesnt really sound like Jake.
The ped just wanted to rule it out.

My ped did recommend seeing a GI specialist but he said that he would give the referral if there was anymore blood in his stool, which there has not been. However our insurance does not require referrals, so dh and I decided last night to get him checked just to be sure its not a polyp. as caleb had.

Karen, I am nursing him alot more. I dont feel like I have much milk there now, but he is nursing every two hours thru out the night again, and he is nursing before naps during the day. he really isnt asking to nurse more then that. He seems to want to eat the solids, the stage 2 baby foods, and yogurt, he comes to his highchair rather easily, and he likes his own spoon and digs right in, and makes a huge mess. he also really like the kixs cereal, however he puts it in his mouth chews it and then spits it out when its all soggy. The occupational therapist thought that is part of the sensory issues.

My ped has recommened that jake start with a feeding team. however it sounds like other then having a larger team of professionals at hand, that the occupational therapist we have coming to the house would do the same things......we are not sure that jake would respond to being taken into an "institutional " setting and seeing strangers. we are afraid that might make the feeding issues worse. I was thinking I would like to talk to a nurtrionalist though.

Jake honestly seems happy, he doesnt act lethargic, he doesnt act weak. he plays and runs around after caleb like nothing is wrong. Petes entire family is skinny. so we wonder how much genetics has to play here.

I just panicked when the dr wrote failure to thrive on his paper and malnurished. it sounded like a death sentence.
I am anxious to get these labs done this am, and get the results.

I would really appreciate any ideas on fatty foods.

thanks for hanging in there with me..

and karen I didnt take your comments as harsh at all, I know you are going thru similair issues, and have the experience of dealing with it a lot longer then me, I have been wanting to stop bfing so thats always a guilt factor for me. but i have said and cont to feel that I would do what ever i have to, to keep jake healthy. I certainly never wanted this. so I do appreciate your two cents even if we dont always agree.... thank you

A&A'smommy replied: I'm sending eating vibes and LOTS of prayers!!!!!

boyohboyohboy replied: I am interested in more info on the sensory intragrative disorder but when i goggled it there is tons out there, does anyone have a site that is good?

gr33n3y3z replied: here is a list for you

http://www.indiadiets.com/foods/food_nutri...h_fat_foods.htm

Edited to add that along with high fat foods you have to have his cholesterol checked bc it will raise it.

coasterqueen replied: Stacy,

I have some information on it, but not here at work. I'll see what I can dig up at home tonight. Also, our feeding team got on my bum for not reading the book they recommended as it would do a great deal of help for Megan, so I need to get it. The paperwork is at home ,I think, so I'll let you know later on the name of the book.

I'm telling you, I really think he has sensory issues. Everything you say reminds me of Megan. One thing our feeding team told us to do is buy the Magic Bullet and blend up all sorts of foods in it. Megan could not take the stage 1 baby foods, she puked it immediately. She did better with stage 2, but the docs thought she'd benefit from better nutrition from regular foods blended to a certain consistency, which you just have to keep working with until you find the consistency he likes. You can put all kinds of healthy foods (IMO far healthier than the crap in jarred baby food) and this really helped Megan too. Also give him a bowl and spoon as much as possible. Let him make a mess out of himself with mushed up foods. Yes, you have to be right there because they can choke easily and even vomit, and it freaks us out, but it will help them further their progress. Also, one thing the team told me is when Megan chokes or pukes, I would ALWAYS freak out and start patting her, sticking my finger in her mouth, etc and they say the thing to do is not react at all (emotionally). Just sit there, pat them on the back and talk them through the gagging process til they are fine again. The team told me the more I overreact the more Megan would be afraid to swallow and thus more gagging and puking.

I know you say your supply had dwindled but the more you nurse him it will come back up.

I didn't necessarily focus on really high in fat foods, because that didn't seem to help Megan when we did try it. I think she's got a hyperactive metabolism too. The girl eats like a horse now (when she will eat ) and it does nothing for her. I mainly focused on healthy foods that would give her the vitamins, etc her body really needed, since they aren't eating much I think that's very important. Although he gets what he needs from you as well.

Hang in there. It will get better. I promise. Oh and genetics really does play a roll in this. Kylie was a MONSTER of a baby and still is of a child, lol, and she just takes after my side of the family. Megan is just teeny tiny and most of her weight size is really because DH's side of the family are just so super tiny.

Hillbilly Housewife replied: Good luck... I've talked the mom of the boys I watch to talking to her doctor about the younger one's eating issues... he doesn't eat at home at all, but he will eat here. Maybe because I don't cater to his whims and I make him eat even if he's just being picky... (as opposed to not wanting to eat because he's not hungry)

He doesn't like to eat, and seems that he doesn't know how to chew. He just moves his jaw up and down until the food gets all squishy, he keeps it in his mouth forever. Drives me bonkers.

boyohboyohboy replied: karen is the sensory intergrated disorder primarily seen in bfing children?

its so weird to think how close and touchy bfing is, that thats what the kids dont like...its just so hard to get my mind around it.

i am anxious to see what the name of that book is.

my2girls replied: Have you tried researching Crohn's disease? That is what my newphew has. He was 1 1/2 years old when they found out he had that. Bananas are a main staple in his diet. So are eggs. He is highly allergic to everything!! He was on breast milk for a long time but when they would try to give him baby food he refused. Well it was because it upset his stomach and bowels. He would eat bananas/eggs all day long because they would feel go to his stomach. He lost alot of weight and was very small for his age.
Your Dr.s will probably say that it can't be it ( like they told my SIL) because Crohn's disease in children is considered rare. Blood in the stool was also found alot. Especially when he ate "illegal" food. Crohn's disease also mirrors Celiac disease. My nephew was tested for milk , gluten, Celiac ,Colitis...all came back yes because Crohn's disease you are allegric to gluten, milk, soy (in some cases) and processed food ( there is no one test to detremine Crohn's its just the elimations of the others diseases). He was treated for each one but would flare up again and again. Well it was Crohn's because you have all of those allergies!
I highly recommend the Crohn's testing.
Here is a link to help you:

http://www.ccfa.org/info/about/crohns

Just scroll down and it will list some symptoms and detail what is Crohn's disease.

coasterqueen replied:
No, I do not believe it is. I don't see any coorelation between the two. Megan was born with it. She had sensory issues the moment she was born, seriously. Her sensory issues affect not only her eating but the whole nervous system thing itself. The doc calls it an immature nervous system. Not sure exactly what that means. It's all about how the brain processes information brought in by the senses. That is not something that comes about because of BF. BF does not control the brain. It is something they are born with, really. Another term for SID is IMO what many call Spirited children.

Kylie is on one end of the spectrum and Megan is on the other. Both are very spirited and have sensory issues. Kylie can't stand tags on her clothes or for instance when she puts her socks on 3/4 the time there is always something in her sock that itches her so I have to take her sock inside out to show her nothing is in there. She needs attention 24/7 in order to function and you have to keep her busy 24/7.

Megan needs deep pressure, has from the time she was born, in order to calm down. She closes herself off to people, even us at times, because she doesn't like the ruckus being caused. It's hard to keep her world simple and ruckus-free when Kylie's world NEEDS ruckus. :roll eyes: Megan has sensory issues when it comes to food and is extremely oral.

A lot of the kids w/sensory issues or are spirited often get mistakenly labeled as ADHD/ADD later in life. Sad, but true. I have done enough research to know that if I ever encounter this problem I know what to do before I ever agree that my child(ren) are the case.

I'm not sure what you mean about your second sentence. Honestly, BF has nothing to do with it. I know your doc has told you that and it's a good "excuse" for his issues, but it's just that, an excuse. BF does not make the brain process what is brought by the senses. The two just don't mix and I honestly think if you have a very good OT she'll be able to tell you your doc is WRONG.

mysweetpeasWil&Wes replied: Hope they figure something out soon...KUP

coasterqueen replied: Stacy,

When I was trying to search for the title of that book, I also found this great piece someone wrote about Sensory Integration Dysfunction as well as about the book, The Out of Sync Child, which is the book our feeding team recommended. http://www.kid-power.org/sid/sidsynopsis.html

I highly recommend reading this piece. It doesn't talk alot about the eating issue, as this lady's daughter didn't have that issue to severe, but it talks alot about SID and how it happens, etc.

In my case, I have it. Our OT clearly says I have SID, unfortunately it was not diagnosed at a young age and my parents didn't know how to handle me, which explains my crappy past. So my 2 girls more than likely got it from me, although Kylie was a c-section baby after 30 hours of labor and Megan was born a month early with issues and 20 hours of labor. These types of trauma can contribute to SID.

HTH.

CantWait replied: Sorry I have no advice or suggestions. Just stick with everything you're doing, sounds like it's all you can do right now. I hope it's nothing serious.

boyohboyohboy replied: karen, my dr doesnt know I am asking about the SIO, he hasnt mentioned it to me and I havent told him the occupational therapist mentioned it to me, she didnt say he had it, she just mentioned that some of his issues sounded like they fit into that.

I will look at the link you sent me tonight.

jake is having a hard day, he isnt interested in anything today, the whole blood draw seemed to have really upset him.

quinnandjacob'smom replied: I'm so sorry you're dealing with this. We've always had major eating issues with Quinn and I know how all-consuming it can be. I hope the testing shows something to at least give you a starting point. I'll be praying for you and your little man

kimberley replied: many prayers to Jakob and you. i hope things turn for the better. please keep us posted.

lisar replied: I hope everything turns out okay for him. I hope he starts to eat for you. I am sorry you and him are having to go thru this.

boyohboyohboy replied: today was so frustrating! i just cant get him to eat. he cries at me and grabs what ever i am eating but when i give him some he puts it in his mouth chews it and spits it out. i literally had to lay him down and drop pediasure into his mouth with a medication dropper all day, every half hour...and all i got into him was 2 ounces!

i just feel like shaking him, why wont you eat!!! he looks so cute and smiles, and i just melt.

i am so frustrated..

i also spent the entire day trying to get into a GI, it turns out they dont take calls from people only dr's and the dr's set it up..so i had to get the ped to agree to call, well the nurse because the dr's never called back, so i am in limbo there.

did i mention i am so frustrated.
how in the world do you guys go thru this for years...worrying each min...wondering if its going to come to a feeding tube? wondering if this was something i did..

coasterqueen replied: Stacy, if you show your fear, frustration, etc then he's going to see it and it will make things worse. I know you probably feel like you aren't showing it around him, but I bet you are. It's hard not to, believe me I remember having the same problem. The team told me it will make them not want to eat even more. Also if you are forcing food (pediasure w/dropper) that can make matters worse. You have to do things that will make him want to do it. So let him eat your food, chew it up and spit it out. He's trying to figure things out. I know it's stressful while he's doing it, but your stress is only going to make him not want to try more. Honestly, hun.

You asked how I went through this..honestly I was nervous and still am at times. Less now than before, but knowing that my daughter was at least getting breastmilk relieved a lot of my stress.

And if you understood SID you'd understand that you've done nothing wrong.

amymom replied:

Wow Stacy! All I can do is send you hugs. Lots of them. Mary Beth's turn around was 24 mos. So I have since then lived with minor issues (Although the GI doc says they would have felt major if I had not lived through those first 24 mos.) I think Karen has given you excellent advice. I believe that you are headed in the right direction and I wish I could come and just sit and comfort you. But I can not. Please know my prayers and thoughts are with you.

On a side note ~~~ Karen that info on the SID is very interesting. I would bet my Mary Beth has a very mild (VERY mild) case of it. She hates to be hugged. Has a limit as to how much stimuli she can take, and the feeding, wgt gain issues have been ever present. Also forget about socks and shoes it takes about an hour some mornings to get something on that is comfortable. But she is about to hit the 50% on the growth chart. From below 1 % at a year old to now almost 50%. I am very lucky.

Calimama replied: Awww poor little guy. I hope you find out something soon.

jem0622 replied: Many many P&PT for all of you. I hope they find answers soon. Have they considered hospitalizing him to intravenously feed him? That way they would help keep him from losing?

HUGS

jcc64 replied: I have been searching and searching for a program archive on the NPR website that I heard a few months back regarding SID. It was an interview with the author of the following book:

http://sensationalkids.org/homepage.html

The author was relaying a story about a 5 month old patient of hers that was 1 day away from a feeding tube. She was inconsolable, colicky, and refused to eat. After being diagnosed and finally treated appropriately for SID, everything changed for this infant and her family.
I can't seem to find the interview, but I would at least check out the website for the book.

DansMom replied: I hope you get some answers soon to help turn things around for Jakob. I can remember the frustrated feeling---the desire to scream "EAT!!!" at my child (I did growl at him a few times in frustration). Mostly it was fear for his survival and anger at myself because I couldn't fix his lack of appetite. Our underlying issues were different and not nearly so troubling and persistent as yours---I feel for you. It sounds like you're getting some insight from other moms on this site who have BTDT with sensory issues.