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Nov 11, 2009
happy2bjustmommy
Melissa, mom to 3 girls ( 2 with GERD as infants) 1 boy, GERD, Apnea,seizures, Microcephaly, craniosynostosis.
5 month old, reflux flaring
I am rather shocked i am back here, after we were doing so well. My son was doing great. I had him off his meds, were were nursing and all was well. We were ready to take him off the apnea monitor, stop seeing all the specialists, and getting on with a normal life. Then.... When D hit jut before 4 months his reflux flared up big time! he started being very fussy, spitting up all the time, his apnea alarm was buzzing, and things just changed with him. After weeks of trying to get somewhere with his GI and apnea clinic, i finally got in to GI today. Th Nurse practitioner told us to stop breastfeeding again, to pump and thicken and supplement with thickened formula. She told me to NOT give D any solids. He had applesauce a week ago, and while he ate it, afterwards his chest was rattling, and i felt like he has aspriated. He has been coughing and choking more when he eats, either from breast or bottle. She is ordered an ASAP MBS to check him for fluids as well as up to pudding thick solids. He is very fussy. I dont Notice any change with the prevacid. He was on 7.5 mg once a day. then it didnt work. then we went to twice a day, no difference so they dropped us down to once a day again. I wound up taking him off since it wasnt helping. When all flared up again. we put him back on, 2 times a day, per dr orders, and no difference after a week. They want him to stay at the same dose. He also recently started having seizures, and the GI is now saying the reflux is neurological. However, the Neuro is saying the seizures are related to GI. I give up!!! LOL He also sees a neuro surgeon for craniosynostosis, and microcephaly. And just today he was accepted into Early intervention, as he is 5 1/2 months, is not rolling over at all, or sitting, crawling, scooting, plus all his medical issues. They are starting out with physical therapy, but will be sending out an OT and Speech pathologist eventually. Anyway. I guess that is a long story to say, anyone else have their kids get better on their own, then all of a sudden, everything flares up? I am wondering if i am even going down the right road. The MBS will likely be next week, and i will know more then. Any ideas?? Thanks
Nov 11, 2009
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
This is probably one of those instances where the meds were doing their job and a GI wanted the child of off meds. Alot of times, Drs will see a child is doing well and will want to do a med wean. When in reality, the child is doing well because the meds are on board and doing their job.

I'm sorry you are going through this. I'm sure it's frustrating to say the least. The good news is, the meds worked last time, they should work this time once you get to the proper dose. It's the waiting until the kick in that is hard.

I would go back to the twice daily dose and stick with it for a bit to see if it will kick in soon. How much dose he weigh?? The dose might be a bit low but that all depends on a weight.

Don't give up!!! Keep fighting GI and Neuro!!!!!! They should get their act together. LOL We got stuck in the middle of GI and Cardiology. Our horrible old GI kept saying Jedd's NON eating was due to his unrepairable heart defect and ME and the Card. kept saying NO he has GERD fix him with meds....It was awful, so I know how you feel.

As far as E.I. They did a fantastic job with Jedd. We got O.T. and S.T. If we had done our eval when Jedd was little we would have gotten P.T. as well. But Momma and Daddy worked hard on that part and barely skimmed by needing it. :-)

You will be amazed at what those ladies (or men) can do to help children. Jedd was pretty much NOT speaking and was NOT eating anything, not even one bite. In 6 months of S.T. he was completely caught up. It took 2 years of extremely HARD work to get him off his feeding tube and eating normally to some extent. But he had extensive feeding issues, so that's not really bad actually.

I really think that things were "better" because the meds were doing their job and once you get back on high enough meds, things will get better. I must say, I am NO doctor though, this is JMHO. :-)

Nov 11, 2009
happy2bjustmommy
Melissa, mom to 3 girls ( 2 with GERD as infants) 1 boy, GERD, Apnea,seizures, Microcephaly, craniosynostosis.
THanks Jessica, D weighs 15 lbs as of today. I am keeping him on the meds, as long as i need to, but i wonder if he needs some more help. He had applesauce last week on Tuesday, and a week later, he is still extremely contispated. His diet is mostly breastmilk, so that seems just wrong. I brought it up today, but the NP i saw, was more concerned over the apnea, and aspirating. I am just so ready to be done with all of this. Really. My son is my life, but i am so tired of dealing with all these docs, specialist, home health companies, and yet nothing is being done.
Nov 11, 2009
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
They were right to be really concerned about the aspirations and apnea. Why don't they admit him and do all sorts of tests to determine the source of the breathing issues. That would be a very safe thing to do at this point.

Have they talked about tube feedings??? Kids with swallowing issues are normally not allowed to eat by mouth, until they get a clear MBSS. And even then, they sometimes will only be cleared on a certainly constancy, so the protocols for feeding after a MBSS is done need to be followed strictly by everyone feeding the child.

If you are seeing many different specialties at the hospital, try to get what ever tests done that need to be done by each dept., and then see if you can do a "team meeting" with them. That way, everyone can have their say at one time. Not sure if this can be done at your hospital, but I know others who have accomplished this.

Did the NP address the constipation?? If you feel she/he is not answering your questions, feel free to push to see THE GI, not a nurse no matter how trained they are. KWIM?? Your referral for for a GI I assume, not the NP, so push to see the GI since that is what you are paying for.

I am sorry you feel exhausted, I do know just how you feel. There were days when I felt like giving up and staying in bed and weeping till I had NO more tears. Keeping reminding yourself, one day you will look back and things will be better. They may not be "normal" but they will be better. We've all been there and sometimes, just a 5 min break as you walk around the block is just what's needed. Even if the little one screams for your DH while you are gone.

Nov 11, 2009
happy2bjustmommy
Melissa, mom to 3 girls ( 2 with GERD as infants) 1 boy, GERD, Apnea,seizures, Microcephaly, craniosynostosis.
d had a clear mbs in august. however i learned that doesnt mean anything. the gi we saw in the hospital said all it means was there was no aspiration during that study. he has also had upper gi, and bronch, and endoscopy done. nothing mind blow9ing was found. the np i saw today told me to take d to the er if he is choking. they had mentioned tube feeding before, when he wasnt gaining wt. he has gained a pound since october 7. so that is good. i am going to be looking into going to a gi from a different office. i am worried, if he passes his mb again, they wont take him seriuos. i know what he is doing is not normal!
Nov 11, 2009
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
What state are you located in?? There are many of us here from across the states, you may be closer to one of us than you think and we could suggest someone.

can you use a video camera??? We did with Jedd at one point. Can't really argue with video footage KWIM??

Nov 11, 2009
happy2bjustmommy
Melissa, mom to 3 girls ( 2 with GERD as infants) 1 boy, GERD, Apnea,seizures, Microcephaly, craniosynostosis.
im in arizona... we see the GI at phx childrens.
Nov 11, 2009
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
Well, I'm all the way across the country in VA near the water. :( I am trying to wrack my brain but....I don't think anyone is in AZ...oh wait I know someone....let me pick their brain and see, it may take a couple of days though. I'll get back to you on this thread if I here from this person. They are not on this site, I know them from elsewhere....I'll ask them for you.
Nov 12, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Most of us have been down the road early on of "oh they are all better. Time to take them off the meds" only to have it rear its ugly head again. Then we realize.. "oops it was the meds that made them better" and we get back on them. Ryan is 18 months old and I have just begun the ween down process from 30 mg of prevacid daily. I am down to 24 right now and am in no hurry. Slow and steady wins the race.
Check with your
doctor first!