Posted By Posting
Oct 29, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
loaded post with questions....What's going on here????
So I won't go into the whole detailed story here, but we are still waiting for Jazzy's meds to start working for her EC....in the meantime, she starting thrashing around in bed and throwing tantrums during the day, very often. I'm pretty sure it's not a behaviour thing. It also takes her a long time to fall asleep and lately, as she is drifting off, she stiffens, screams "NO,NO,NO" and either pounds my chests with her fist, or grabs my hair, shirt etc... Like a big freak out session, and then she's wide awake and just hugs me. Also, when she wakes up from naps or is inbetween sleep cycles, she sits right up says things, and throws herself back down. She has been wakng up and moaning a lot as well.

I am at a loss. Motrin doesn't seem to do much, I think mylanta helps a bit, but how many days in a row can I give her these breakthroughs?

Oct 29, 2008
bellaria
(Maria)Mommy of 2 beautiful boys
Raymond(3) Severe Trachialmalasia, very mild Cerebral Palsy, and Reflux. Currently only unsing neb and doing well w/o Prevacid!
William(2) Reflux, MSPI, severe food/seasonal/environmental allergies. Currently on Prevacid, Zyrtec, and very limited diet.
Picture:William just turned 2!
Will 2yr old
Are these sleeping issues new to her??? Is she having nightmares? I wonder if it could be a reaction or side effect to the new med? I know some can cause restlessness. :o( Poor thing
Oct 29, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
These aren't entirely new, but she definately usually sleeps better than this. I thought maybe nightmares too, but you never really know do you? This new med she's on is suppose to cause some sedation......I just don't know
Oct 29, 2008
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.
this is the same thing emily has been doing for months. the GI just put her on carafate and she has been seriously a different child for the past two days. it is an upper to mid GI med so i am not sure what it's helping to her feel better, but if motrin (ps- motrin has sugar in it) isn't helping and mylanta is- ask about carafate.
Oct 29, 2008
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.
oh i forgot one GI said we could mylanta 4x a day for as long as she has reflux and it won't do harm. Another GI told us that if mylanta has to be given daily then strong or different meds need to be tried. I tend to agree with the second doc- but that's just my opinion.
Oct 30, 2008
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.
I'm so sorry...for both of you... One of the tough things about sleep deprivation, especially in toddlers, is that it feeds on itself -- so being sleep deprived often leads to restless and insufficient sleep, which then makes it harder to get good sleep -- and many of the symptoms of it are hard to distinguish from difficult toddler behavior that has nothing to do with sleep deprivation.

Lorenzo has had many sleep issues in his short life, and has, at times, developed serious sleep anxiety, which looks a lot like what you describe about Jazzy's behavior before going to sleep. If sleep is either painful or frightening, or both, to her she may have developed a fear of letting herself go to sleep. I wish I had an easy solution for you for that. For us, each time it rears its head, it just takes lots of time and patience to help Lorenzo get back to being less anxious about sleep. ((HUGS))

Oct 30, 2008
azmom
Mom to Ian, 3/1/07
Used Zantac - 1.0 ml twice a day
Weaned at 1 year
Back on Zantac at 15 months
My doc said not to give Motrin for reflux kiddos. It upsets tummy and slows the gut. Could it be making the reflux worse?
Oct 30, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thanks all!!! UI'll let you know what happens!
Oct 30, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, 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.
My previous drivers license was also stolen. The new one has extra security features on it.
I am sorry Jazzy has been having so many issues. It sounds quite similar to what we go through with Meggy every day and night. I am sorry the meds r not working yet. I hope u find some answers soon. Meggy's does seem pain related and she is terrified of laying down. She will fall asleep often on our shoulder and we prop her on several pillows in layers to try and keep her upright.

Meggy has slept better these past 6 days while on Ultracare for kids, rice, canola oil, salt, very little sugar and nothing else. I hope that her sleep continues to improve and that her spasms and pain continue to decrease. We have not seen very many spasms these last few days. We are still having lots of gulping and crying though.

We are going to try this for 7 weeks unless something drastically changes and see if we continue to have improvements.

I will keep u updated on progress we make with Meggy as it seems Meggy and Jazz share many symptoms.

I have found that maalox actually increases Meggy's symptoms while carafate seems to help somewhat if and only if the timeline of nothing 2 hours before and nothing 1 hour after is ingested.

Have a good day.

Oct 30, 2008
michelle&aurora
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
ugh, I so feel for you and Jazzy, to still see her in so much discomfort. It's such a difficult situation to be in, particularly at this age, where EVERYTHING is blamed on their age. If she is 'violently' expressing herself, IMHO, it is PAIN or FEAR. I wanted to throw this out there, since Maria mentioned a med symptom of restlessness. If this is a side effect of her medication, her waking behaviour would make sense. If I take Nyquil, I will get tingly all over, drift between an awake and asleep state and generally feel wired. She might be fearful of that feeling, kwim? It says if restlessness occurs, to discontinue. If it's not a side effect, I would be asking why it is taking so long for the medication to take effect. Poor baby.
Oct 30, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thanks all!!
Check with your
doctor first!