Just wanted to touch base and see if anyone had any pointers for an MRI. We are scheduled to go in Tuesday morning. This will be Adeline's first. Met with her neurologist six months ago and we both agreed it is time to take a look. She is still having lots of trouble with her balance. It comes and goes. It is often affected by the weather and the seasonal changes in Virginia and then at other times i have no idea why. She has been working on a four week ear infection with increased irritability and meltdowns. She can not tell us that she is hurting. Her right ear started draining and culture came back positive for aspergillus fumigatus/fungal/mold. We are going to do a CT scan too of the sinus area. Had never heard of this. She had her right nostril opened back in October and adenoids removed and tubes put in. The ENT checked the ear on Friday and it was clear. We have been doing antibotics, ear drops and now an antifungal. Please let me know questions to ask or things to look for with an MRI. Would love to go in prepared. Adeline is signing some, we have been working with the GO TALK 9 and two of out sitters that are OT students just put together a communication notebook and picture schedule board for her. LOTs and lots of frustration starting to build with no speech. Looking into a behavioral therapist. She is pulling hair and banging her head on the floor. Think it is behavior, but don't want to rule out ear stuff too. We have had her hearing checked each year and will do another hearing exam the end of May. Has been fine. Would love any advice that you parents may have. Adeline will be four the end of May. Thanks! Lindy, mom to adeline, 4q21.22q21.23

My daughter has almost the same deletion! She will be 5 in September. She had a lot of ear infections when she was little. I didn't want the tubes or surgery so I took her to the chiropractor. Hasn't really had one since. I also have her on a regular allergy med daily. She also was "acting out". I would say more with frustrations from no communication. I started sign with her and it did take time, but she is now progressing wonderful. Her balance is still off, but not as bad as it was. When Brooklynn had her MRI, didn't show much. Not really much to prepare for. But I can tell you, it gets easier. You need to look into community resources like AEA, and preschool for the developmental disablity.All Free!!!! Also she will be approved for SSI. Let me know What other questions you have and What you find out! Good luck!

thank you! we have been taking adeline to the chiropractor since she was three months old. makes a big difference. try to go once a month. think it does help alittle with her sleep issues. we also have done craniosacral work. have not done it since her surgery, but saw good results with that too. what allergy med do you use? discussed zyrtec and dye free benadryl the other day with the ENT to do seasonally. she has had allergy testing done and negative to all that was pricked on her back, but think she has some sensitivies. would love to hear more about her balance issues. adeline has been like a drunk sailor for the past two days.

Brooklynn is on zyrtec and singular. Seems to help. Her balance was off way more when she was little. But she starting wearing AFOs (braces on her legs) that made a world of difference+ pt. I also did the ear candling and that helped too. Brooklynn couldn't even hold her head up when she was 6 months old. I started with the AEA and outside pt. Since she was 8 mths old. She now walks, runs, feeds herself, and is signing. I would say that if she is walking, but drunk sailor like, Maybe a walker would help keep her balance. Brooklynn used one for awhile. Hope this helps. If you need help finding resources, let me know. I would be Glad to help.

My Savana had some balancing issues too, after getting the tubes in her ears it was much better. Last spring she had many, throat, ear, and sinus infections, so the Dr. had us put her on Allergy meds to dry her up so that all of the secondary infections would heal up. This was a big mistake, her behavior changed for the worse, physically she was "drunk like" and her speech became slurred. As soon as I stopped giving her the Allergy meds she was back to normal. She did end up getting her tonsils and adenoids removed, and that was a huge help...wish we would have done it sooner, to avoid all of the antibiotics. Anyway, this fall we had her allergies treated by a Chiropractor, and it has been life changing! I highly recommend it. We also went to an Allergist, but Savana had "Sensitivities" not "Allergies" so there was nothing we could do. Anyway, the Chiropractor that treated her is in Arizona, if your interested in getting some information for your little ones you could look at his website, and see if there are any Doctors where you live that do the same noninvasive treatments. The website is www.becomeallergyfree.com. I had 3 of my children treated, and had awesome results. It sounds to good to be true, but everyone I have referred to the Dr. has had amazing results. I think it is worth looking into, and seeing if anyone in your area is doing the same kind of treatments. Also, Savana did really well with sign language and a picture/word book I made her with velcro. She really did not become verbal until age 5. She is doing great now at age 8, especially since she has had a really healthy year! The only time we have a hard time with communication is when she is over tired, she becomes frustrated. This does not happen often.