Posted By Posting
Nov 07, 2008
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Keira and a Neurologist Appt :(
So we took Keira to the neurologist for the Hypotonia issues. She thinks that the neurosurgeon who diagnosed Keira w/ this type of external hydrocephalus that goes away at 18 months w/out surgery didn't see some other things on the CT report and she's now going to need an MRI, EEG and two trips to the lab for blood work. :( We could be dealing w/ a metabolic disorder or a chromosome issue. If chromosomes play a part then my dh and I have to be tested too. It takes a month to get the blood work back and the MRI she'll be sedated for whenever they schedule that. They now say she is "globally delayed" and that now they feel her speech is delayed in addition to the low muscle tone and gross motor delays. So of course as a mom I'm ready to fight for whatever Keira needs but I guess I just thought she was just a little delayed and all was now ok. I just needed to get this out so if you've read this far thank you for letting me post this. I know she'll be alright I just hate to have to put her through more testing and more therapy but I have to say that THANK GOD I pushed and pushed for that early intervention to make an exception to Keira getting services!
Nov 07, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
You are a great Mom. Keira is lucky to have you fighting her battle. You keep fighting and we will be here to listen anytime. Good luck with everything. We will keep her in our prayers. -Amanda
Nov 07, 2008
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
oh, I don't know what to say :( I'm sorry she has to go for more testing and therapies, but you should be so proud of yourself for advocating for her early on. She will thrive and achieve great milestones because of YOUR early intervention. Please keep us posted and stay strong. HUGS!
Nov 07, 2008
amber f
(((HUGS))) I'm sorry about the testing but hopefully with the early intervention she'll get back on track soon. You are such an awesome mother.
Nov 07, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
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I am sorry that she is more delayed than u realized and that she has to go through more testing. I hope that they will help u figure everything out and get her on the right track!

What symptoms does she have of the hypotonia?

As far as the external hydrocephalus, does that mean that they no longer think it will resolve?

U r a great advocate for your daughter. I am so glad u pushed till u got what she needed. U r a great mother too.

Nov 07, 2008
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.
Oh my gosh! I can't believe I missed this post earlier. I am sorry you are going through this. You are awesome!!! Keira is lucking to have you on her side. (((HUGS)))
Check with your
doctor first!