Update

preggersINschool25 · March 2013

Oh goodness where do I begin??

Genetics: we are waiting on the preauthorization to get the genome sequencing done. His microarray showed a duplication on 5p, but it is of unknown clinical significance. The sequencing is more detailed and will tell us more.

Endocrinologist: She ran some additional tests and based in those results she wants to treat him for hypothyroidism. We decided that we are going to go with her recommendation. I got really good vibes from her when we met with her.

G.I. doc: I was worried about this visit because it was local and not at the Childrens hospital we normally travel to. Also, I googled him and found horrible reviews. He wasn't bad at all. He was a little difficult to understand. He took his time with us and said based on what we told him that Grant's lack of eating is behavioral. He could have other problems, but he does not display these symptoms. We could do an upper g.I. if we wanted to, but it is likely to come back negative. We left with a few cans of elecare Jr. and decided to try an elimination diet for 10 days.

G tube: we are in the process of trying to schedule to surgery. Now if the elimination diet or thyroid medicine helps, then we will cancel, but the doctors don't think it will make a difference.

Allergist: we were given instructions to stay away from peanuts and anything made in a place with peanuts. We were told that with his number as high as it was that there a 50 50 chance that peanuts could cause him to go into anaphylactic shock. We also got an RX for episode pens in case of an emergency. We were also told to avoid penicillin and amoxicillin because of the rash he broke out in after getting it for an ear infection. We go back in a year to recheck things.

I am looking into getting Medicaid and Children with special healthcare insurance as secondary insurances for Grant. I'm also trying to find out all the resources that we qualify for.

There is more, but those are the big things

lancyjo · March 2013

I'm glad you're starting to really get answers. [[hugs]]

Mar5195 · March 2013

Another Mama that is glad you are getting more answers. I really hope the elimination diet helps.

k3montel · March 2013

You are a wonderful mother! It is so great that you are doing everything in your power to help him early!! My little sister has Medicaid and Children with special Healthcare insurance b/c she has Cerebral Palsy and a brain disorder. She sees LOTS of specialists, and my mom never has to pay anything. Good luck with everything, and keep us posted!

jmccall79 · March 2013

Sounds like progress! Yay!

pinkshades05 · March 2013

Sounds like a lot of progress has been made!! How are YOU doing?

NatnDyl · March 2013

Sounds promising and like you guys have a plan. I hope you are doing well too

btartaroind · March 2013

Wow! That is a lot for you to take in, I hope you are doing well yourselves. I am glad you have a solid plan in all these areas, and that you are getting some answers. Keep us updated, we think about you often!

MollySm · March 2013

I agree with PPs, I'm so happy you are starting to get some answers. What is an elimination diet?

JessieJH · March 2013

That's a lot of info to absorb- hope you are okay. I hope the elimination diet goes well. they can have amazing results. Also, I wanted to mention that since you are having to stay away from some anitbiotics you may want to get a prescription for the ear drops that numb their ears. We have been able to avoid antibiotics through two ear infections thanks to those drops and from what I've read the infections will clear on their own with the pain resolving drops alone. Waiting out an ear infection without them would be tough!

preggersINschool25 · March 2013

Pink: I'm doing okay. I feel like I am working some serious overtime, and I don't even have a job right now. I see the foot doctor tomorrow. I'm in a shoe, but every step I take is painful and I can't go down the stairs normally yet. I hhaven't drove yet either. Hubby won't let me.

Molly: Elecare is a non dairy based formula. We are eliminating dairy from his diet to see if it has any effect. It is doubtful, but it is relatively easy to check. Intolerances don't show up in allergy screens. They can only be checked by guessing and testing by changing your diet.