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Brandon's weight again


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  #1  
August 31st, 2004, 12:05 PM
pattyandthemoos's Avatar Administrator
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I went to the health department for WIC today. They weighed Brandon at 17 lbs 11 oz and 27 in long. I think the length is off but the weight I am sure is right. I am so upset. They have him charted off the charts in his weight and height. I looked it up on several places online to confirm this and he is definitely underweight. The WIC people were really concerned about him and thinks he should be seeing a specialist.

The thing that is upsetting me so much is that none of his doctors will listen to me. I just took him to a new pediatrician a few weeks ago and they had him charted at the fifth percentile at 12 months. Well he was only 16 pounds something oz then. And now he is 17 lbs 11 oz. I looked that weight up for 12 months, even at 18 lbs he is below the fifth percentile so how could they have him charted at the fifth. I was worried about him then, that is why I brought him in. I was so worried. They were supposed to get him a referral for a feeding specialist but they have yet to call me back.

Well I still have an appointment with his original ped so I called and spoke with the nurse there. Long story short, more run around, b*chy nurse, and I am not going back there. I told the nurse to have the doctor call me. I am going to let her know that I am leaving her practice and how much I do not care for the staff there. I have an appointment with a new doctor.

Brandon has an appointment with a neurologist on September 8. I am so scared I am not going to like this doctor either. Please cross your fingers this goes better. I really, really need a good doctor. I am so worried about him and he needs to be seeing a specialist.
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  #2  
August 31st, 2004, 12:15 PM
TylerJ1029's Avatar Platinum Supermommy
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I'm sorry you had such a bad day with the Dr's . My thoughts go out to you and Brandon. I hope everything goes better at the new dr.
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  #3  
August 31st, 2004, 12:30 PM
ranidae
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Since I am so new I wouldnt know but have you contacted Early Intervention? I know for us they were wonderful about all our concerns and have tons of resources to specialists etc. The girls are even guaranteed payment for specialist appointments thru the county health department. So if our insurance doesnt cover the cost of a appointment (we have to find out long before hand, because they need at least 2weeks notice.)
You might try that, I hate getting the medical run around.
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  #4  
August 31st, 2004, 12:34 PM
pattyandthemoos's Avatar Administrator
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Quote:
Originally posted by ranidae@Aug 31 2004, 04:30 PM
Since I am so new I wouldnt know but have you contacted Early Intervention? I know for us they were wonderful about all our concerns and have tons of resources to specialists etc. The girls are even guaranteed payment for specialist appointments thru the county health department. So if our insurance doesnt cover the cost of a appointment (we have to find out long before hand, because they need at least 2weeks notice.)
You might try that, I hate getting the medical run around.
Yes Brandon has been in Early Intervention since he was about fourth months old. They are more helpful than his doctors. In fact, I am not sure if his vision loss would have been diagnosed as early as it was if they had not been involved. I am just getting a little emotional today about this.
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  #5  
August 31st, 2004, 12:42 PM
ranidae
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Quote:
Originally posted by mamatothreegreatkidz@Aug 31 2004, 01:34 PM
I am just getting a little emotional today about this.
Understood completely. If it hadnt have been for us having a great PA down in NC we would have been lost when it came to EI and therapy for their torticollis. As it is we most likely will need to take Elaina to a cranial specialist to round out her head. No matter how much of the PT we did with her and how much we worked to have her sleep in diffrent positions we never could get her flat spot to round out. Skyla has one too it just isnt as pronounced. I know it isnt anywhere near as sever as what Brandon is going thru but I still get upset when therapists and whatnot dont call back or treat me with indiffrence. The cranial clinic still has yet to call us back. Which reminds me I need to call them back again today.
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  #6  
August 31st, 2004, 06:11 PM
LuckyGirlx4's Avatar Mega Super Mommy
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((((((((((((Patty)))))))))))) I am shocked that Brandon has not seen anyone abouth is feeding issues yet, and your new Ped. is giving you the run around too? This is horrible. Where do you live that no one will help you? I'm so sorry, I wish there was something I can do. Let me know what state you live in and I'm going to see if I know anyone in your area (this all of Anika's stuff, we know of specialists almost everywhere, and they know other specialists, etc.).
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  #7  
September 1st, 2004, 04:42 PM
Natural Blessings's Avatar Mega Super Mommy
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Quote:
I just took him to a new pediatrician a few weeks ago and they had him charted at the fifth percentile at 12 months. Well he was only 16 pounds something oz then. And now he is 17 lbs 11 oz. I looked that weight up for 12 months, even at 18 lbs he is below the fifth percentile so how could they have him charted at the fifth.[/b]
It's partly because of the charts they were using. Most charts are ff charts but some use bf charts, it can make a difference on what % the child is in. For alot of dr's 5% means between 0 & 5%. Nadia was always small. She was 16lbs at 1 year. She has always gained 2oz/week at the most. Now at 2 1/2 she's still small(24lbs), but because all the other kids have slowed down she's actually on the charts and it looks like she's catching up when in reality they're just slowing down.
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  #8  
September 1st, 2004, 05:07 PM
zonapellucida
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HUGS Patty--I hope you find a competant Dr you like that can help.
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  #9  
September 1st, 2004, 06:13 PM
pattyandthemoos's Avatar Administrator
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Carrie, I have also read about the charts being off for breastfed babies. But even if he charted in the fifth percentile or better I would still be worried and upset with the doctors. I have been concerned about him for a while. It is not just his weight but his height. His height is below the 1 percentile. Plus if you look at his growth curve he has dropped dramatically. I personally, think he has some type of hormone deficiency. According to every thing I have read on his vision condition there is a sixty percent chance or more that he will have endocrine related problems. The area of his brain that is affected is located very closely to his pituitary gland. It is very common for kids with his condition to have other midline brain problems. So I have been asking for a referral to an endocrinologist for a while. I think his growth is related to a hormone deficiency. He had one hormone test come back abnormal that was related to growth and they have dismissed it saying that it was low because of poor nutrition.

I have also had serious problems getting him to eat. I have asked for a referral to a feeding specialist. I can't get him to eat anything other than rice cereal and fruits. Although, he is starting to eat more it is still a huge struggle to get food in him. He is developmentally behind. He was diagnosed with low muscle tone at nine months. He has a lot of other health problems. I get tearful every time I talk about him. I feel like I am getting really bad medical care.

He is still only nursing about twice a day and it is next to impossible to get him to drink milk or anything out of a cup. He can not hold a cup or bottle by himself. That is just not normal for a fourteen month old. I have been worried about him for a long time and no one will give me any answers. I want him in the care of a specialist. I want some help with him and getting him to eat.

I have gotten very depressed about this over the last few months. I have a lot of guilt issues because I took medication while I was pregnant and every day I feel guilty about this. I love my son and I worry about him all the time. I just want him to see a good doctor that will listen to me. I am tired of having to wait months for him to be seen.
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  #10  
September 2nd, 2004, 07:31 AM
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Patty,
I would be concerned too. We have had similar issues with Cade - not gaining, not wanting to drink anything out of a cup, not wanting to eat. We have been working aggressively with his ST, OT and also going to feeding clinic and it has helped alot. He will drink Pediasure now and that stuff is a Godsend - it was alot of hard work to get him to take it but now thankfully he does. I hope you can get some answers/help soon. I so trust the mommy instinct so don't give up until you are satisfied with the care that he is receiving.


Good luck and please keep us posted on it.

Jenn
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  #11  
September 2nd, 2004, 08:25 AM
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Dear Patty, I will be as frustrated as you right now. As a Mother YOU know something is not right so you go to the professionals aka the doctors and what they do not much or nothing at all. That would make any mother go nuts. Just keep up your spirits and remember one thing it is NOT YOUR FAULT about your son's condition, yes you may have took the meds that COULD have done the damage but without those meds you may not been able to concieve and/or be blessed with Brandon at all. That is how I had to look at it with Lexi-I had to take meds that could possiablly cause minor or major deformorities or worse to my daughter but if I did not take them I could have had a seizure and killed her and/or harmed myself. So, please don't blame yourself for having to take the meds. Even if you did not know the side effects it could happen to your unborn child, you are a great mom and you are so lucky to have him.

I hope you find a specialist that will help you with your needs soon!
HUGS

-Dori
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  #12  
September 3rd, 2004, 10:55 AM
Natural Blessings's Avatar Mega Super Mommy
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Quote:
I have been worried about him for a long time and no one will give me any answers. I want him in the care of a specialist. I want some help with him and getting him to eat.[/b]
Plant your butt on the chair of the dr's office and refuse to leave until you get your referrals. Waiting for the dr's to take the step isn't going to work.

I have been through alot with Nadia too. She went from being in the 10th % at birth to falling off the charts by 1 month. She didn't get on the charts until she was 18months and that was for height only. At 24months she was for weight(3%). I have been trying to get her hearing tested for almost a year now, my dr is now researching programs for children to find something to get her into.

She was unofficially IUGR due to a knot in her cord. At birth she became Small for Gestational Age which is IUGR after they're born. She's been delayed in everything except walking(1 week after she turned 1), jumping 25months, and getting teeth which really isn't a developmental/milestone thing. She didn't babble anything until she was 8 1/2months and only did for 2-3 weeks then didn't say anything but sounds until she was 2.
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