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Aug 28, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Russell Silver Syndrome and Failure to Thrive
Does anyone have a child with Russell Silver Syndrome (RSS) Basically it causes a lot of problems, mainly growth and feeding. There is a possibility my daughter has it. I just wanted some input. Megan weaned herself off milk, then cottage cheese, then slices of cheese, and now she is weaning off of yogurt. All of this she did on her own. After taking the milk from her diet, her sleep improved, her spasms are a lot less, her chronic constipation since birth is gone, and she is a much happier baby. She weaned herself off milk on her own initiative taking less and less every day till eventually none. Her allergist told us yesterday to go ahead and take yogurt from her too and give her soy yogurt and soy milk in place of dairy. Thank God they are finally realizes she is an individual with individual needs. She does not need a feeding tube, just a diet that agrees with her body and her pain to be resolved. Her upper endoscopy results are not all back yet, but looks like she may not have GERD at all (her diagnosis since 3 weeks old I think. She has nodules in her esophagus, and allergy cells in her stomach. Blood test have shown no allergies in the past, but something certainly caused her all the problems. We got a new geneticist and hopefully will get somewhere with her. She sat down with us for over an hour going over Megan's chart and medical records to try and get Megan on the way to good health. Not sure what will happen next, but I think we are on the right track which is great. Megan had lost 3.5 ounces last week. Does anyone know of a good diagnostic center? We are looking into Mayo, John Hopkins, Vanderbuilt, ect. Engi
Aug 28, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Well, I certainly wouldn't recommend Hopkins for any GI-related issues. We take Sebastian there and are NOT AT ALL HAPPY. The allergist team is amazing, so I sing its praises any chance I get (like right now, for example), but that's it. Wait- excuse my ignorance, but what is a diagnostic center?
Aug 28, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Diagnostic Center
Many Major children's hospitals advertise as diagnostic centers. When your child is sick and no one can figure out what is going on, or when there are multiple diagnosis but nothing adds up, they can help figure things out. John Hopkins says they generally have kids in and out in 6.6 days with diagnosis and plan of treatment. I emailed them specifics of Megan because we live in GA and it is a long way to travel if they can not be of help. Megan's allergist told us to try her back on Soy, that soy formula was different that regular soy. She said to start with yogurt. Oh ME! She literally looked like her diaper exploded 2 hours later. My husband doesn't think the soy would have hit that fast and suggest we try again in a few days. Hmm.
Aug 28, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
oh yes, the soy would have hit that fast. in fact, most delayed reactions will happen anywhere from 1-4 hours after ingesting the "foreign" protein. when is the last time she had soy? it could be her stomach just getting used to it or it could be an intollerance.

i've done a lot of reading on russell-silver during research to figure out why my son is so small. did you google it?

http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome

i suggest e-mailing the person on this page to ask for guidance. who is diagnosing her with this?
Aug 28, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Diagnosis
Megan's new genetics doctor thinks she might have Russell Silver Syndrome. She said it will be mostly a clinical diagnosis. Megan is certainly developmentally on target or ahead. She just doesn't consume enough to grow or she is not absorbing it one. I have googled RSS and I am doing research on it. I have not gotten very far yet as the previous genetics doc said she probably did not have it. They hardly spent any time with us though and have not seen her again. I have been so busy emailing anyone and everyone I can find that might possibly be able to figure out what is going on and help her get on the right track. I think the magic foundation is great. They even have some info on failure to thrive. I have learned that I have to educate myself. The doctors don't have time nor take the initiative to do that. Megan has not had soy since she was 3 months old when she tried soy formula. We only tried about 1 ounce of soy for today. We usually start very slowly and build up for in case she does react. As she does seem extremely sensitive to many foods. I guess we could try the soy again tomorrow in small amounts again. Maybe you are right and her body just didn't know what to do with it. Did you ever get a diagnosis for your son? What kind of symptoms does and did he have? Was he able to tolerate infant formula? Sorry for so many questions. It is just so nice to talk to someone who can relate. Engi
Aug 29, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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nothing to add on RSS (now I am intrigued though and will have to read about it) but for Elyse milk/soy would affect her literally in half an hour or less (vomit) and milk/corn still affects her within an hour or 2 (diaper). What a tiny girl! You are right about having to educate yourself...it makes you a better advocate, and can help steer a dr in the right direction.
Aug 29, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Things have gotten moderately better on the tolerance end. In the beginning he could not tolerate either moik-based or soy based formula at all. Always projectile vomiting, arching, etc. The only thing that helped that was the switch to alimentum. We tried to intro milk-based @ 6 mo and he vomited for hours. Tried yogurt @ 7.5 months and he vomited for hours. At 10.5 i tried bread-he was fine. now he seems to be tolerating all milk producs (well, he isn't projectile vomiting..)

His reflux is actually only terribly bad when he drinks a huge (6 oz is big) bottle on an emplty stomach.. like in the mornings. Or, when he is moving around too much on a full belly of liquids. Solids have been going better as well.. when he isn't refusing them.

i started writing down every morsel of food and every ounce of formula that goes into his mouth. that way i'm going to be prepared for the next GI visit and hopefully their nutritionist can tell me if it is either a) an intake issue or b) a metabolic/genetic issue. he was only 4.5 pounds @ birth and now weighs 16 so our pedi thinks growth is fine but GI thinks growth is not fine.... you know how doctors can be.

Check with your
doctor first!