Posted By Posting
Jul 19, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Next step in the plan...
...a pH Impedance Probe and blood work to rule out nutritional deficiencies and some sympathetic nervous system abnormalities. We also have a meeting scheduled with both of his alternative therapy providers to develop a plan that works more closely with his western medicine care providers.

I've also come to see that Sensory Processing Disorder is an enormous elephant who has been standing quietly in the room waiting to be noticed, so we are proceeding with some conventional OT therapies as well as continuing with his alternative therapies to try to resolve some of those issues.

Thank you all for your support and information, which I will continue to refer to as we proceed...

Jul 19, 2010
samsam
I am curious how the doctors test for sympathetic nervous system problems. Please elaborate.
Jul 19, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
They can check for cortisol and epinephrine levels, which, if elevated, can be indicative of high activity in the adrenaline glands, which is suggestive of chronic stress. It wouldn't tell us WHY he was having a stress response (which is of concern due to his frequently elevated heart rate during sleep), but it would help us understand the severity of it, and assist in guiding us in how quickly and thoroughly we need to dig to find out what's going on.
Jul 19, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
YAY for moving fast, that's good. Praying they all go well for you. Do you have a date for the Impendance yet?
Jul 19, 2010
adelines mom
glad to read your post! have been checking to see how friday went. the sensory elephant has been creeping around our house too. the last time we meet with the developmental doctor at our hospital she recommeded reading Raising a Sensory Smart Child with foreward by Temple Grandin. It is written by Lindsey Biel and Nancy Peske. It is a good book! I am about 100 pages into and makes a lot of sense. I really do think Adeline has some sensory issues going on with feeding, tooth brushing, light, loud noises, etc. would love to hear bout some of the therapies they could do with lorenzo. i posted this update on adeline with my genetics group a few weeks ago and thought i would share with you. for the life of me i can't remember if i posted it here too. short term and long term memory is gone due to LACK OF SLEEP. this gives you an idea of some of the things we are looking at with adeline. "I just wanted to give an update on Adeline. She just hit two years old the end of May. 21.2 pounds, 29 inches long and head 19 inches around. She is really standing upright holding onto something and taking steps all the way around her pack and play and behind a little pushcar, but she is still not walking yet. Making babbling sounds sometimes, but no words yet. She has a wicked belly laugh and cracks herself up sometimes! We just met with an endocrinologist last week and loved him. Our genetics doctor had recommended that we met with him due to Adeline's small size and tiny feet (a byproduct of her 4th chromosonal deletion) She had fallen off the growth chart and they were a tiny bit concerned. We had done a blood draw back in April and her IGF-1 was 71ng/ml and her IGF–BP3 was 2.7 mg/L. We did another blood draw two days ago and it had come down. The IGF-1 was 51ng/ml and her IGF –BP3 was 2.6 mg/L. It should be going up, but is going down instead. He recommended a growth hormone stimulation test. Just read all about it on the Human Growth Foundation website. He said they usually don't like to do it on someone this small. It usually takes four hours, no food before hand, blood draws every 30 minutes and are given two differentmedications. My heart sank. Said they probably could do it in about two hours on her. Feel like the trauma from this draw would set her back months. She has TINY veins and it is always tough! She is still taking five bottles a day and purees three times a day and could not imagine what would happen without that first bottle at 6:30 a.m. I wanted to get feedback from any of you that have had to deal with this. He is VERY laid back and not pushing me at all. He was thinking about doing the test the beginning of August. Asked his opinion if we could maybe wait another three months and test again to see if it goes back up and he said yes that would be fine. Just need to try to digest this. Next I have questions regarding Zinc. I was reading the book The Kid-FriendlyADHD & Autism Cookbook by Pamela Compart and Dana Laake the other day. It was referenced in Jenny McCarthy's book. Adeline has not been diagnosed with either! I am just trying to educate myself. It was very interesting though. There was a section in there that talks about zinc deficiencies. "Mineral deficiencies are very common. For example, zinc deficiency is common in children with ADHD or autism; it is usually much more severe in autism. Zinc deficiency results in problems with growth and development, brain and sensory function, amino-acid metabolism, vitamin A function, and immunity. Zinc is critical in sensory issues such as appetite, taste perception; vision, vision perception; eye contact; hearing and auditory perception as well as perception of touch, pressure and pain." I have noticed that Adeline really has no interest in food. There is never excitement at meal time. She has a blocked right nostril and I imagine thatthat could affect her smell and taste. We checked her zinc level two days ago in the blood draw and she was at 55. The range is 50 -150. The endocrinologist said it would be fine to supplement a little. Again, has anybody done this before? Last question, does anyone do Epsom Salt baths on their children? We starteddoing that last week and really think it calms her." We have done a complete metobolic profile on her. Our genetics doctor did this at our request. Trying to make sure something wasn't way off. Glad you are going to do the blood work on Lorenzo and maybe you can get some answers.
Jul 19, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
We don't have a date for the probe yet -- they're supposed to call next week (and I have learned to ask the all important, "how long should I let pass before I call if they haven't" question, so we should have one set by the end of next week.

I actually just finished reading Raising a Sensory Smart Child, and I found the information on sensory processing fascinating for any child, whether their processing is problematic or not. We already started some of the exercises recommended, and I am already seeing a difference in some areas...

Jul 21, 2010
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
My son also has major sensory processing issues and that affects his behaviors and picky eating habit. Once we found the right therapist, OT has been a tremendous help for him. The book "Sensational Kids" by Lucy Jane Miller is wonderful source too. It is very interesting to know about the test for sympathetic nervous system. I'll definitely check with his doctor about that at the next appointment.
Jul 23, 2010
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
*hugs* good luck! i hope the tests are tolerated well and you guys can get some answers. I have a feeling we will be right behind you for an impedance probe.
Check with your
doctor first!