Please READ we don't know whats wrong with our daughter

[JFriskie]

I have a 22 month old daughter Tieler. She has had problems from birth that have sent us to multiple specialists and are now awaiting Genetic Testing. Tieler started loosing weight in my last  six weeks of pregnancy. I was on bedrest and lost about 12 lbs the last month for some odd reason. When she was born at 39 weeks she weighed 5.2lbs. Immediatley after birth she was projectile vommiting and spitting up EVERYTHING she ate. One night it was so bad we rushed her to the nearest childrens hospital in our area ahe was kept in the surgical unit for 4 days and released because what they thought she had after testing was incorrect about three weeks later she was admitted again Tieler could not keep any food down and had begun loosing weight rapidly her second stay at primary childrens was for 5 days till they decided once again she didnt have what they thought she had, About two weeks later she ended up in the PICU at the childrens hospital with a severe case of CDIFF ( virus you get a hospital) She was so sick that we were twelve hours away from putting in a premanant feeding tube when she began to keep down about a half ounce of nutramigen formula. they did m ore testing and discovered she had severe GERD and a very severe milk allergy. after our third 9 day stay at the hospital she was released weighing in at 9 pounds one ounce at 5.5 months old. Tieler has always been small she sees a Gastroenterologist an allergist, an immunologist, ENT, and now are awaiting to see the genetisis. Tieler has a large amount of sever food allergies to Eggs, Wheat, Milk, Rye, Peanut, Almond, Cashew, Pistachios, and Hazelnuts. she suffers from esophigitis from the Gerd and has had random losses of hearing, that comes and goes. She didnt sit without support till she was 11 mo. old and walk at about 17months. she has Global Delay so speach, motor, communication, all of the above are delayed. She does not speak at all. She had one very severe seizure a few months ago and has random eye twitiching were her eyes roll back in her head. which could be small seizures we have no idea whats wrong researching the internet is so hard there is so much information any suggestions or simularities would be appreciated please help us we just want her to be ok and are trying to care for her but its hard when doctors have been unable to diagnose!We have an excellant team of docs but are looking for answers wherever we can get them sorry this is so long!!! DESPRATE FOR ANSWERS!!!

[JFriskie]

Thanks for the compliment she looks like her mom what can I say... Just kidding :) I appreciate your response we have not looked at either of those. I was on bedrest for High BP and Preterm contractions This was my second pregnancy and I have very horrible pregnancies my body doesn't take to it well! they were concerned I would develop Toximia again as I did with my son and the high BP. They did an ultrasound of her at 34 weeks were she weighed 4.6 lbs they thought and when she was born over three weeks later after being induced at 39 weeks she weighed only 5.2. The actual Labor went well compared to my first. She also had meconium but next to being small she did well till we left the hospital. They are looking at her possibly having a metabolic disorder? or enzyme deffeicency? if she is having the these daily "absent seizures" but we have about 4 months to get into the genetisist. And still waiting for the pediatrician to let us know about nuerology. Are there any other symptoms of diabetes?

[Dr. Kokil Mathur]

Hi
Thanks for writing to the forum! You have a very cute daughter!!
Diabetes and birth trauma are two vey common causes of seizures and GERD in infants. Diabetes also causes delayed gastric emptying, hearing defects etc. You lost weight in the last month right? This could also be due to diabetes. Also you were on bed rest. Why? Due to high BP? Maternal high BP and diabetes can cause poor fetal growth.
At one go and on net it is difficult to reach a diagnosis or know what is wrong. I’ll be glad if you could provide some more details.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!