discharged!?

[Anonymous]

Lauren,

Thank you again for your detailed reply. You don’t need to apologize for anything you’ve said. I appreciate anyone’s opinion. I just wanted to clarify a few things.

The feeding doc who suggested an inpatient visit was not suggesting it to observe her or to investigate further. It is because he has a specific technique to help kids to eat… He admits them to the local hospital where he works for a week. About halfway through the stay, he cuts the bottle intake in half and then has the parents leave the room during meal times. At that time he wil put a tray of food in front of the child and let them choose to either eat it or not. He does this every day until the week is up, and then he continues to see them as an outpatient. It is not to investigate further. Even if it were, you would not want tests done at that hospital…it is an adult facility, not the children’s hospital. I know someone whose child went through this admission at 18 months, and it did work well for him. They cut him down to 16 ounces of formula and he did start to take some bites of food, and eventually eat. Hailey only takes 12 ounces to begin with, and she does not have the self feeding skills yet to make that up with anything. The doctor himself feels that until Hailey’s social issues and medical issues have been investigated that a hospital admission WILL NOT help her, but will make things worse. I think that in a few months, Hailey may be ready for this. Right now, our SLP who is our feeding therapist and the dietician who works with this doc do not feel that this is the answer. Our ped is also against it. Further, our ped works at the children’s hospital and he has not been in favour of a hospital admission and has said that the hospital would not even admit her, that there is no way. As I have said, it is not for medical intervention, and they are not observing them for more than an hour a day. They get 15 mintues at each meal.

I have worked with many doctors on a professional basis, and I do not believe that they are all god even though they might. I believe they have the medical answers, but that they do not live with your child. Since this journey with Hailey, I often do not even believe that they have all the medical answers- I seem to know more about reflux than they do. I am not the type of person to agree with everything a doctor says- I work in a hospital, I have medical knowledge, and I know that they are not always right. I think that you have to work together in treating your child. At the same time, I am not going to refuse recommended medical advice that can help my child. If I agreed with everything that they told me than I would still be sitting here on zantac with a hysterical child every day, and waiting for the day when she would miraculously outgrow this.

Hailey’s feeding is an issue because she is almost a year old and does not take solids, and she sleep feeds. Weight is not the issue. It never has been. The problem is that she does not demonstrate age appropriate feeding skills, she doesn’t have hunger, and she doesn’t know how to recognize hunger cues when she does have them and to realize that eating will satiate this. If this is left untreated she will not develop proper eating skills.

As for the psychologist, I have no problem with this and was quite happy when he was able to recommend someone. We are now waiting to be contacted with an appointment date.

As for SPD, I do believe that Hailey has sensory processing issues- that much is obvious. Our OT wanted to work on the motor stuff and get her crawling before doing a sensory profile. It’s hard to get accurate results on a child who is just screaming and crying all the time. Hailey rolled over at about 4 months, sat well at 5.5 months, bum shuffled at 8 months, but didn’t start to crawl, pull up, sit up on her own and cruise until she was almost 11 months. We are now going to look at the sensory issues. Her speech is good- she babbles non stop, and she says daddy, mama, yay and hurray. Her fine motor seems adequate.

I too am leary of diagnosing PDD at such a young age for the same reasons you have mentioned. Our ped is as well, but has wanted to voice his concerns. I also think that the kidney workup is a good idea, but am frustrated that no one has mentioned this until now. I am also frustrated that everytime Hailey goes hysterical in a doctor’s office the docs discharge her. It happened with this doctor, it happend with our first GI. It is very upsetting.

Again, I thank you for your reply, and hope that I have not offended you with my own. I just wanted to clarify that I am not a neglectful parent who is in denial and won’t listen to what doctors say. If anything, I have listened to their advice and followed it too much… that is why we are in this position in the first place.

[Anonymous]

I’m sorry you had such a bad day at your appointment yesterday. It sounds as though your Ped is getting frustrated with the whole situation too. Is he basically dismissing Hailey from his care until you are ready to follow through with his recommendations on omitting her nighttime feeding?

As for her crying and you comforting her, I think there is absolutely nothing wrong with that! What’s wrong with these docs?!

[Anonymous]

Lisa,

It’s not our ped. It’s a pediatric feeding specialist- He’s chief of pediatrics at a local hospital, but he’s known for his training in feeding. We are still being followed by our pediatrician and he’s great and very supportive of the situation. Yes, the feeding doc is frustrated. I also think it’s much like what happened to you at your feeding clinic. He can’t stand the crying so that’s part of it, but the other part is that I’m not ready to cut her formula intake in half (that would be 6-7 oz a day). I want to get over the sensory issues first, and for her to show interest and be proficient in self feeding. I guess if you don’t like the recommendation then they d/c you. As for the crying, I guess I don’t believe in tough love, but I don’t think that’s a crime.

s&h’s mum2006-5-18 17:22:38

[Anonymous]

Lori

Im dont really have anything to add, but just wanted to say that I hope you can find the right people to help Hailey. She will build up confidence over time and become more trusting of people, but in the meantime she is really lucky to have such caring parents. Trust your own instincts and take whatever advice you think is in Hailey’s best interests. We will keep our fingers crossed for some answers soon.

[Author]

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