discharged!?

[Anonymous]

We have been seeing a well-regarded pediatrician (he is chief of pediatrics at a local hospital) who specializes in feeding and nutrition. He has helped many non-eaters or kids with feeding problems. He is the one who switched Hailey to prevacid.

Well we saw him today and first we saw his dietician. Hailey started screaming hysterical as if she was having a panic attack and she wouldn’t stop. She was crying for over 40 minutes when the dietician suggested we take a walk and see if that helped. While we were walking she said that she hopes I don’t take this the wrong way, but it seems like I get really stressed out and upset when Hailey cries and that it probaly only makes things worse. I just got so annoyed at this comment.

Then the doctor saw us and told me that if I’m not willing to cut out her night feed then he doesn’t really know what else he can do for us right now. I told him that if I cut it out then she’s down to 7 ounces of formula with nothing to replace the calories, so he suggested a hospital admission. The dietician said that she doesn’t think we should cut out the night bottle and she doesn’t think that Hailey will do well with a hospital admission because she’ll just cry the whole time and nothing will be accomplished. She said that Hailey gets about 50 percent of the needed calories from the bottle. He asked her to leave the room. Then he told me that Hailey obviously isn’t suffering from calorie loss because she looks fine, and that he felt that she had other issues that needed to be resolved. He said that someone else can prescibe the prevacid. He gave us the name of a pediatric psychologist, and he said that either her crying is behavioural and we both need counselling on how to deal with it, or she has an underlying developmental disability that hasn’t entirely emerged yet. Then he told us that he doesn’t know what’s wrong with her, he’s not entirely sure if her pain is controlled or if there’s something more serious going on with her. He referred us to a pediatric nephrologist, who we are seeing next week for a kidney workup. He noticed that she has an ear tag and told us that the ears and the kidneys form at the same time in the development of the fetus, and so maybe there is something wrong with her kidneys that has been overlooked. Then he told us that when we’re ready to cut out her night bottle or when her social behaviour has improved to facilitate a hospital admission we can call him and he’ll see us again in the future.

Then I got home and there was a message from the dietician saying that she wants to discharge Hailey because she feels that we have enough food ideas of our own.

Then we saw the OT again today, and as soon as she came into the house Hailey started crying. Not just crying, but going nuts crying. I waited for her to crawl over to me before comforting her, and the OT said “Oh good, I’m glad that you’re getting more comfortable watching her cry.”

So here’s my question: Am I crazy for not wanting to let my baby cry hysterically and watch her turn blue and vomit up the entire feed I worked so hard to get into her? I don’t know if I am or not, but three professionals told me today that I seem to be stressed out by her crying and seem to respond to it too much. What do the rest of you do when your babies are screaming and crying. Do you leave them there until they stop? Hailey cried on and off for the whole time the OT was at home, but I didn’t feel too bad about it because it seemed like a normal baby cry, so I just comforted her and tried to support her through the therapy. But the other crying at the docs was hysterical shrieking and turning blue, choking and sweating and pulling my hair going nuts. She would not let me put her down, even though I tried. They made me feel like a terrible mother for comforting her.

Anyhow, I guess I’m just having a pretty bad day after being told that I make Hailey’s behaviour worse, and that she may have some underlying developmental problem. Sorry for the rant.

[Anonymous]

OMG…if they think there’s something wrong with you, they’d have me committed. I simply cannot stand to hear Myles cry and I do not let him cry unless I absolutely have to. I was the same way with my first two and they turned out to be very well adjusted.

And let’s face it, when you have a child with reflux, you quickly learn that crying and screaming aggravates the reflux, and you do become conditioned to respond quickly. That’s simple behavioral psychology. And they can’t see that??

I’m so sorry they are treating you this way. I just don’t understand why. I can’t believe they discharged Hailey because of her “social behavior”. She’s 11 months old for pete’s sake. Since when are there standards of social behavior for infants?

I think they just don’t know what’s wrong or what to do about it and so they are blaming you to protect themselves.

[Anonymous]

Sometimes Aidan really lets loose, he did it today at my son’s class picnic (granted it was different crying he was hungry) so I walked with him over to the flowers and calmly told him the color, what they were, talking very calmly and softly, soon he wanted to touch them and forgot about the crying. My oldest was more like Hailey, if he was uncomfortable with the situation he would seriously flip out., I did the same thing with him, I picked him up and walked with pointing out things and telling him about them, eventually he would want to hear what I was saying (which he could not do while screaming, and he KNEW I was talking) and he would start to calm down and listen. It seriously does help a ton if they know that their crying is not going to get you all worked up. Sometimes (although hailey’s sounds more like frightened crying) it’s a control thing, yep even young babies can learn that they can control the situation with crying ifthe parent lets them. (my oldest started doing this at around 9 months) he would scream and I would get more and more anxious, the more anxious I got, the more he screamed, when I began trying to be totally calm when he did this, he slowly stoped. I think he realized that he was not going to get the negative reaction from me and gave up trying? Like I said it truly sounds like Hailey is fearful and crying b/c she is truly scared. If Austin ever sounded that I would be doing the same thing you do, a mom knows when their child is crying b/c they are afraid and I don’t think there is a mom on this board who would not comfort their child if they hear either that or the “I hurt” cry.

[Anonymous]

Thanks for the replies. Jill, I don’t actually give off any vibes that I’m anxious that I’m aware of, but of course, when you know that they’re going to be crying for hours, you’re not thrilled about it. I don’t think she’s trying to manimpulate or control anything. I try to calm her calmly by talking to her, or offering her a toy, or a distraction, but this quickly escalates to hysteria…she’s so worked up that she can’t even hear you. Nothing anyone does will calm her. I can’t do anything to make it stop. It makes you feel like an awful parent, and all these docs are going what’s wrong with her? Why can’t you calm her down? After almost 2 hours of hysterical screaming, Hailey covered head to toe in sweat, her hair soaking wet, snot dripping all over her and me, the second we leave the building after the appointment she suddenly stops crying and starts cooing and babbling and playing. It’s almost like she’s having a panic attack.

[Anonymous]

Oh Lori

What is wrong with these doctors? Obviously if you could calm her down you would and if you could always control your feelings, you would really not be human. I am sorry you had to hear those comments.

Matthew is manipulative – but i know when he is being so, because his crying is so different, so i know you know your daughter. When Matthew wants something, he will cry but he will stop the second he gets it. His stranger anxiety is at its peak. We had a crying baby for over an hour yesterday while he was examined by all the people, and he was pretty hysterical. In the past, i have never let him cry. Well, yesterday i told myself that he was pretty safe in the hands of those people so i stood 3 feet away from him and just spoke to him. I hate seeing my baby cry (i think that they thought i had kind of created the no crawling because we hold him whenever he wants to be held – what the h*** that is why i had a baby, to pamper and love him!!), but they said that he would need therapy and the exam so i just let them be. I have decided i am going to let him cry a little bit from tme to time. When i know nothing is wrong with him, just not go running towards him. Maybe start with a couple of minutes and then increase that because i think that he is old enough to learn that i will not come. He also is very good at throwing up, but i believe he will learn that throwing up changes nothing.

Good luck with the kidney stuff… our ped also made us go through the tests and he was fine, so i am hoping she is fine too!

OK – now what you do not want to hear – been thinking about the sleep feeding. What if you just decreased it by let’s say 2 ounces? So if she takes 2 5ounce bottles, you can give her 2 4 ounce bottles for 2 weeks (unfortunately, i think it takes 2 weeks to really observe a hunger reaction). If she loses weight it will be minimal i would hope and you can see if she makes any of it up at the end of those 2 weeks. I know it is probably scary, but maybe it is easier if it is controller by you than by hailey (ie one day she decided to drop a whole bottle?). We decided to drop all of matthew’s sleep feedinng at once and it did not work, but maybe a more gradual approach would do? i have been doing a lot of thinking lately and i really think that these babies will eat when they want and if they want. But your life has to go on. If you stay at home any longer you are going to be bitter and you are going to regret it – it is impossible not to. I think that the only way to control a bit more of your life is by trying…. Sorry if this is not what you wanted to hear – don’t mean to tell you how to do things but i know that you are suffering adn i am just trying to give you the best advice i can come up with.

[Anonymous]

Oh Lori – I don’t have much to add but I’m so sorry you’re going
through all this. So your Ped isn’t taking you/Hailey as a patient
anymore? Who are you going to see? Argh… Big hugs to you both.

[Anonymous]

Hi Lori, I just wanted to offer some advice and I may be way off base, but it might be worth a try. I have worked with special needs children a lot. My last job was as a nanny/tutor for a boy with sever developmental delays. Whenever his mom had to take him to an apt. he would freak out, but when she was not there he would fuss a little and be fine. I don’t think that meant that she was doing anything wrong. I think it was more of an out of sight out of mind thing. Mom means comfort and security so if he saw her he wanted her to “save” him from the bad situation. If she was not there then there was no point in crying for her. Obviously that is only my guess, as he could not tell me what he was thinking.

It may be worth a try to have someone else there for OT and for you to stay out of sight. I know as a mom that is asking a lot, of course you want to be there for your child especially in a situation where you know she is going to be upset and scared. I would try it with OT first, as she seams a little more used to that. I have been following your posts so I know you have been through a lot with Hailey. The important thing is to get some answers so you know how to proceed.

I read that your ped. suspects Autism. I would do a lot of research if I were you. Of course it is a possibility, but I believe that Autism is getting WAY over diagnosed lately. She is still young and from the sound of things she has had these anxiety problems for a while. Autistic traits usually do not show up that early. She may have sensory or perception problems that cause “normal” stimuli to be overwhelming. Have you ever consulted a Neuropsychologist? They may be able to help you determine if there is an organic issue of if it is a psychological/behavioral issue. They also may have some great ideas on how to work with Haily to get her over her anxiety.

I am sorry to hear that you got treated so badly. It is always easy to blame that mom when the “experts” don’t have the answers. It sounds like there is definitely something going on with Hailey and it is going to be hard to treat the symptoms without knowing what the problem is. I hope you don’t feel like I am overstepping here. I am certainly no expert. I just want to offer whatever help I can.

[Anonymous]

Thank you Thais. I know what you mean about manipulative crying vs. other… Hailey will pout and sulk if she doesn’t get her own way, and I’m usually pretty good about not giving in to that. Good for you for letting him cry while they were treating him. I know how hard that is. I can’t do it. When I’m in the same room and she’s hysterical and reaching out to me and screaming, I have a hard time just standing there watching. I know it’s for her own good, but I also think that these are not normal baby experiences… normal babies don’t have to go through endless testing and poking and prodding and constant doctors appointments and medications. They don’t have to be taken away from their parents and manipulated and contorted into all kinds of positions for assessments and diagnoses. I don’t know that I would like it as an adult, so it’s hard for me to sit and watch it for her, even though I know I have no choice. Especially when she’s suffering like that, and I know things are fine, but she’s turning blue and choking on vomit, and drenched in sweat, and the doctor or therapist says “well, we can’t really assess her like this.” Anyhow, I know you’re right and I know I have to try not to get so bothered by it, but it’s very hard for me. I don’t think that babies have to be let cry when they are genuinely upset all the time. As for the comments that you got about the holding too much preventing the crawling, we were in the exact same circumstance. I think the danger of it, as we’ve seen with Hailey, is that they develop muscle weakness in various muscle groups from being held too much and not getting a chance to crawl. It sounds like Matthew is strong in other ways, like walking around which is certainly a good thing.

Thank you for your advice about the sleep feeding. I really do appreciate it so you don’t have to apologize. If I didn’t want to hear it then I wouldn’t ask. I was thinking about moving her down to 20 cal/oz instead of 30 cal/oz instead of cutting out actual fluids, cutting out calories. Do you think that will have the same effect? I really don’t think that I can cut out any more fluid… she’s barely getting enough for hydration and for the most part her diapers are really not very wet at all (which is a concern). The dietician yesterday also advised against cutting out bottles saying that she’s only getting about 50 percent of the calories that she needs now that she’s crawling especially. I think we partly created this situation ourselves. I was so scared of getting a tube, which would have taken a lot of the burden off of feeding, and I now understand that it can still happen at any time, she can be two or three and still need one, so all this suffering may have been for nothing.

I think that you are doing a great job with Matthew. I know how awful all of the feeding problems can be, and I think that no one can really understand how bad it is until they are in the situation. I hope that the feeding therapy helps him to turn things around.

Karen, it is not our ped that discharged us, but a pediatric feeding specialist that we were seeing. Our ped has been very supportive and has told us numerous times that he thinks we’re doing a good job with Hailey. I am so glad that we have his support.

[Anonymous]

Ah, I misunderstood. Well I’m still really upset that the feeding
specialist discharged you but very glad your Ped is still supportive –
I was concerned because I know he’s been one of the only people in your
corner the whole time and my Mommy brain misread and thought he was
changing his mind. I really hope things start to turn around for you
soon – you are a GREAT mom and are fighting so hard for your daughter.

Katey – I know what you mean. When Marisa is feeling sick or tired or
anxious she definitely ramps it up when she sees me. And I don’t think
it’s a manipulative thing – she associates me with comfort and if she’s
not feeling well she wants that comfort. Like during this current virus
she’s very whiny and not herself but she was playing a bit with my SIL
the other day until she heard my voice and then she started crying and
only wanted to be held. I’m the same way – if I’m upset or sick it
actually is harder for me to talk to someone like my MIL (whom I’m VERY
close with) as it just reminds you that you are under the weather,
depressed, etc. I can distract myself better around people I’m not as
close to.

[Anonymous]

Thanks Lori… my opinion, again… going from 30 cal to 20cal is too much. I think that you are going to get scared, because if she is going to eat, it is going to take some time, so taking out 30% of the calories at once can put too much pressure on you…. does that make sense? You are probably right about hydration… Matthew takes water just fine, so i think we are not going to get there again, or i hope so at least. BUT i keep thinking that right now it is sleep feeding which is your concern… i don’t know. As you said, whatever will happen, will happen… maybe trying it right now is not a bad idea???

I know nobody understands feeding until they see a problem – i am so happy that the feeding clinic finally said we have a big issue in our hands…and they said that anorexia etc are bullsh*t. So i do feel a bit better…. if they are able to recognize a problem, then i know i am not hallucinating anymroe (sometimes i, too, go crazy).

My thoughts on letting him cry – well, for one, they are not allowing me to be there while they will be doing OT… so, he is going to cry for one hour at a time, so he sure can handle a few minutes here and there. I know about the holding but everyone at the clinic was supportive and they understood that if your baby has formula coming out of his nose everytime you leave him on the floor, then you are not going to let him suffer? So they were truly good… just wanted to really go slow and i am all for that. We are stuck with the tube for a couple of years and as you have heard many times in the other forum too… it has given us our sanity and our lives back in many ways. One more thing to consider: when Matthew’s tube comes out, sometimes he eats but not as much as with the tube and he is so irritable, crying, sleepless etc. You know, Hailey may be hungry sometimes? Matthew is sometimes – we just get the tube, fill him in (one of my friends got him a BP (gas) tshirt…. because he likes thinking of him as going to refill his tank every few hours (i thought it was awesome) and then he is so happy….

[Anonymous]

Oh Lori- I am so sorry! How would they react to a screaming baby all of the time. It is so easy for them to tell you not to get stressed about it. I will be praying for you and Hailey!

[Anonymous]

Thank you everyone. We just saw our feeding therapist and she was very supportive. She reassured me that she doesn’t think I overreact to Hailey’s crying and seemed to be a bit more on my side.

Katey, thank you for your comments. I appreciate anything that anyone can offer, so don’t worry. I am an OT and so I know a bit about autism, but have never seen children this young who are suspected of having autism so I don’t know. In my heart of hearts, I don’t believe she has it. I think that I was stressed out during my pregnancy and that she was born stressed out and high needs. I think that all of the early experiences in her life involved medical appointments where people were doing things to her that she didn’t like, and she has had very bad uncontrolled pain due to her reflux for 9 months. I also think that because of her temperament and her needing to be held for 6 months straight and her reflux and feeding issues, she has not had the social exposure that babies typically would get so she’s very afraid. We’re going to take her to a psychologist and I hope that they can help her. When we are at home, she is such a beautiful sweet child- she is so loving and playful and has a laugh that can melt your heart. When we are out, she is a devil-baby. I think that’s a learned behavioural response moreso than autism, but I am no doctor so maybe I’m just a mum talking herself into a state of denial.

[Anonymous]

I am glad you fond someone who is more supportive.

Don’t underestimate your instincts as a mother you are the ultimate expert on your child. You are probably right on, she has just been through so much in her young life.

Getting discharged by the nutritionist was probably the best thing. Now you can have someone who will work with you and listen to you.

[Anonymous]

Lori,

How about making her night feedings with 1/2 30 calorie formula and 1/2 20 calorie formula? This way you are reducing the calories but not the volume of fluids, so her stomach stays accustomed to the current volume, and she gets the same amount of fluid, but fewer calories. Then you can gradually add more 20 calorie and less 30 calorie, a little at a time. Hopefully you’ll reach a point where she starts to experience some hunger during the day.

I don’t think your are trying to talk yourself into a state of denial. She probably has a phobia about doctors. She’s anxious to begin with, and then she’s been through so much with all of these doctors and hospitals, so it’s no wonder she’s so scared. Liza, my least anxious, most easy going baby, had lots of minor medical procedures done to her as an infant and she developed a terrible fear of doctors, nurses, hospitals, or anything that reminded her of such. The doctors and nurses at our clinic still laugh and remind me that they knew Liza was here as soon as we walked into the waiting room! The ear piercing scream began the moment she noticed where we were and didn’t stop until we left! And this is a kid who’s first word was ‘Hi!” because she loved people so much. She was a very outgoing, social, calm, non-anxious baby, but she developed a full blown phobia of “people in white.” And even with her non-anxious termperament, it still took until she was at least two years old to get over her fear of doctors and nurses.

ndrose2006-5-17 19:55:54

[Anonymous]

Some thoughts/ideas….Please know that I have only the best intentions & want only to help you & Hailey.

The first is this: The docs have mentioned a hospital admit previously to work on feeding difficulties. Personally, if my child at almost 1 yr was crying that often & seemed in such pain, I would have her admitted. First, in hopes of them identifying the source of pain or crying (tests would get done in days vs. week or month waits outpatient). Second, would be for the experts to see my child 24 hrs a day & figure out the best feeding schedule or plan for her.

I’m still not sure why there is concern with her feeding. I may be mistaken, but I thought she was in the 40%?? If that’s the case, then I would just gently continue with what you are doing. Doctors won’t even contemplate any form of intervention until a child is Failure To Thrive, usually for months. Over the course of several months, Emma slipped from 25% to 10% to 3% to OFF the charts for weight, her height followed the same path. Only after she was off the charts, was aspirating (as per video swallow), had an enlarged kidney, & severe GERD (as per endo & ph probe), THEN the docs went ahead & said Emma required a gtube (& fundo). We tried every possible step to avoid that–medicines, dietary changes, lots of oral motor & feeding therapy, time, etc. Emma has a lot of health issues, & it became obvious that her growth & feeding problems were complicated & intervention was necessary.

It sounds like you have found an expert pediatrician. I have worked hard & have a wonderful team of docs who care for Emma. I trust them 100% & if they suggest something or advise me in anyway, I take it to heart. Yes, I always think of Emma first & listen to my gut (I am the mom of course!), BUT I also feel like I have ‘hired’ these docs to be the experts in their fields. So, I would go with what this pediatrician says, IF you trust him. If you do not, then perhaps find a new doc. But, that doesn’t always look too good if you are constantly changing doctors & it can also impede you child’s care.

Have you spoken to Hailey’s OT about sensory processing? Since she is seeing Hailey in her home setting (her comfort zone), spends chunks of time with her, & has witnessed her crying, she would be the best person to speak to about SPD. If she feels Hailey’s issues stem from sensory issues, she may be able to offer suggestions & therapeutic intervention. At her age, it could be so many things causing the crying–from stranger or separation anxiety to physical pain. I would speak to the OT about it, & also start keeping a diary of her crying fits. When do they occur? Is there a pattern? Does she do a specific movement, etc. when she is crying? Also videotape the episodes. After 2-4 weeks, take that to the docs & see if that helps them anyway.

How is Hailey’s development? As far as gross & fine motor skills? Speech? Is she enrolled in other therapies in addition to OT?

I think for anyone to really mention autism before the age of 2 or 3 is not the best idea. The doctors have said things like “autistic-like traits” with regard to Emma. And, it is likely that by the age of 3 one of her diagnoses will be “PDD-NOS” which is in the autism spectrum. BUT, some kids have sensory issues or other problems that can appear like autism early on. I would not get hung up on any label or possible diagnosis. Kids change A LOT in the first 3 years…Emma up until 14 months or so appeared to be very disabled. She had low-tone, had trouble sitting, crawling, etc. She would drift off & stare, she had odd postures, etc. The neuro was very concerned. We honestly didn’t know if Emma would ever progress. Then, she blossomed! And, has continued to do so. While she is delayed & will always have some issues, she is doing amazingly well. There is a grave danger in taking a diagnosis to be so concrete. Years ago & some still today, children with special needs were institutionalized. Your child had down syndrome or autism & therefore could never achieve anything above a certain age & should be put away. That is so far from the truth. Every child is different, regardless of a diagnosis, EACH child will make their own path & follow their own course. Every single day, there are children with illnesses & disabilities who astound & even confuse the experts. These kids go against the med school training, they don’t go ‘by the book.’ It happens all the time. Do not limit your child in any way, regardless of what diagnosis is being contemplated now or in the future.

Sorry, I feel so strongly about this, I am very passionate.

I think it is good, if the doctor feels it’s worthwhile, to have the kidney work-up. Perhaps that is the root of your daughter’s issues. And I honestly have to say that if my doctors suggested counseling or a psychologist, I would follow their advice. It’s worth a shot. I’m not sure why you are very willing to follow their guide when it comes to ruling out physical causes, but not when it comes to emotional or psychological roots. I would want to walk down each path until I found the answer, whatever that answer is. Especially, after your sessions with the psychologist or psychiatrist in the past–he too felt Hailey’s issues could be helped with therapy–right?

Sometimes it is hard for us to step back & truly know how we are feeling or reacting in a moment. It often takes someone, usually an outsider (someone who is not close to you) to tell us how it really is & how we really are. If 3 medical professionals are all offering you the same advice & seeing the same thing, I think it is worth looking into. When we had our first daughter, she had colic & my husband would pace back and forth with her, almost frantic. She would cry more & he would say “what’s going on?? why isn’t she calming down?” I looked at him & realized, he had no clue how stressed he was. We talked about it, & even worked on our relationship, & he was so much calmer. I’m so thankful for that–because Madison’s crying was nothing like Emma’s. Children respond to everything about us, our facial expressions, our eyes, our heartrate, our breathing, our voice, etc.

It has sounded to me in the past that you are under a lot of stress & that is understandable. You have spoken about how you have cursed & yelled at your daughter and around her, because of the situation. You have said your husband has voiced concern over this. That is nothing to be ashamed of, that you are overwhelmed & stressed out. What is key, is that you find an outlet for yourself. Whether it is walking, exercising, yoga, journaling, going out, etc. You have to take care of YOU first & foremost.

I hope I don’t sound mean in any of this…I am genuinely concerned for you & your daughter. I hope you are able to get the answers you want, & SOON. I pray your daughter can find some relief soon.

I do have to reiterate that I think you should follow the doc’s advice. And, that an inpatient visit may lead you to some answers & guidance. It could be that there is an underlying medical condition & that should be ruled out. Simultaneously, you can look into other causes of her pain and/or crying.

[Author]

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