Posted By Posting
Jun 30, 2008
bigdaddy
Liz, mom to Donnie 12/2005
Surgery for Pyloric Stenosis at 5 weeks old
GERD since 4 weeks old
Colic until 13 weeks old
Delayed Gastric Emptying
MSPI
Surgery for Tubes and Adenoidectomy at 14 months old
Anemic since 9 month check
Febrile Seizures
Speech Therapy
MEDS: Zyrtec, Nasonex, Xopenex,
Vitamins with iron, and back on Prevacid as of 12/2008
What the ped said
Well we are back from the ped and my suspicions were confirmed. Our regular ped is on vacation until the end of August so we had to see another ped, whom we have never been to. Fortunately, Donnie was having a really bad day with the eye blinking so she got to see first hand what we were talking about. There is nothing worse than taking a child to the doctor and they seem fine!!! Anyway she said right away that it was a tic and he needed to be evaluated by a ped. neurologist. She also had 3 tubes of blood drawn and they are evaluating him for PANDAS (pediatric autoimmune neurophsyciatric disorders) which is what I was concerned about because he has developed a very strange OCD tendency. We will know by Thursday the blood results from that. He will see the neurologist in 3 weeks. In the meantime she gave us some eye drops ($50 for 2.5 mL!!!) to see if they will help with the blinking until he is seen. Ugh, I am so upset and my husband is the type that deals with things with complete denial. Well I just wanted to update really quickly. Thank you for all of the support!!! -Liz
Jun 30, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
Photobucket
I am glad you were able to take him in and he "performed" for her. Sorry about the news though. Keep us posted on the results. J
Jun 30, 2008
amber f
I'm so sorry to hear this. But it was nice he did it in front of the ped. I know how frustrating that can be. My dh is the same way in denial or he just lets me deal with everything medical with the kids so he doesn't have to worry about it. Keep us updated when you can.
Jun 30, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Liz I am so sorry to hear this! I am glad that the ped got to see what he was doing, it is frustrating when our lo's act fine when we're really concerned. If you can, you may want to consider video taping him for the ped neuro, just in case he doesn't do it that day...
Jun 30, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
WOW! I don't know what to say...Morgan still does that! Should I have hers evaluated? I will mention it to the new ped when we go in a couple weeks.

Can I ask what ocd tendency he has? Hugs!

Jun 30, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Oh Liz...I am so sorry your suspicions were true. I agree...nothing worse than taking them in and the ped seeing them for 2 minutes and saying they are FINE. My dh is sooo the same as yours...he is always in denial. Please keep us up to date. You know, my sister's son does the eye blinking ALLL the time and SHE is in denial. I think I better tell her about this...thinking of you girl :)
Jul 01, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Liz, I will be praying for you. That is very scary but it is good you followed your "mommy instinct". Stinks to be right sometimes though. I had never heard of PANDAS before. How do they treat it?
Jul 01, 2008
bigdaddy
Liz, mom to Donnie 12/2005
Surgery for Pyloric Stenosis at 5 weeks old
GERD since 4 weeks old
Colic until 13 weeks old
Delayed Gastric Emptying
MSPI
Surgery for Tubes and Adenoidectomy at 14 months old
Anemic since 9 month check
Febrile Seizures
Speech Therapy
MEDS: Zyrtec, Nasonex, Xopenex,
Vitamins with iron, and back on Prevacid as of 12/2008
Thank you soooo much for all of the support!!! I don't really know anything about PANDAS except that it correlates to a very recent strep throat/strep infection (Donnie had strep throat 2 months ago). I don't know how they treat it either. Thanks again and I will post when I hear on the blood work. -Liz
Jul 01, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Liz, I hope that you are able to get answers. I searched PANDAS on-line yesterday and came across this article describing a patient with the disorder and her treatment: http://ajp.psychiatryonline.org/cgi/content/full/155/11/1592

I had never heard of PANDAS before. I pray that if it is indeed this disorder the doctors will be able to effectively treat it. Please keep us posted. Donnie will be in my prayers.

Jul 01, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry you are going through this. It reminds me so much of my Dh's cousin. He's more like a nephew b/c there is a large age difference. He had lots of ocd tendencies and a severe tick. He also has ADHD. He is now treated for the ADHD w/ medication and is a completely normal 16 yo boy. I hope you get it all figured out soon.
Check with your
doctor first!