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Sep 27, 2009
wenbomama
scope
As some of you remember from my last post, I've been really worried about my son. His problem started having blood in his stool when he was five months old. Today, I just checked his stool, and the fecal occult card test positive again. I am pretty sure it's not from rectum tear. He is on 100% neocate for almost two months now, and very simple solid food, prevacid 7.5 mg twice a day, zantac, periactin, diary free probiotics, miralax. I am so depressed right now, it's been almost five months, he dropped from 90% to 25% on growth chart, severe feeding aversion developed, I have been trying to avoid getting him scoped because I am so scared of having him fully sedated. But it seems to be the right thing to do. GI suspects him to have EE, I am really scared too. Thanks for listening, I really need to vent.
Sep 27, 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
I know it is scarey to think about them being sedated but it is even scarey to not know what is wrong with your child. The sooner you can find answers the better it will be for everyone. It is really hard to over coming feeding aversions if they go on too long.
Sep 27, 2009
wenbomama
Thank you for your reply. You are absolutely right, I desperately need to find out why he's still bleeding and the reason he is not eating. I am going to call GI first thing in the morning. Our GI is fairly young, I hope he is experienced enough to do the procedure. I will keep you updated with scope result, thank you so much for your support.
Sep 27, 2009
mommato3
I know it is scary to put your little one under anesthesia. My son went under at around 5 months old. It was way harder on me than it was him. I was a basket case. I did ask them to give him some antinausea medicine b/c he is always so queazy/gaggy anyway. So right after the procedure he woke up crying and a little out of it. He drank some thickened pedialyte and then drank his formula right after. He didn't get sick or anything. We were then allowed to leave. It was really no big deal and we found out a lot of information from our scope. I am sure he is knowledgable enough to do a scope I would just make sure he knows about EE, what to look for, and make sure he gets enough biopsies. Keep us updated and let us know when the scope is.
Sep 27, 2009
mommato3
BTW-Did you notice a difference on the periactin?
Sep 27, 2009
lovemypies
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
I too was a train wreck during the scope, but honestly it was reallly no big deal. He cried after but as soon as he was allowed to eat he chugged 5 oz and slept for about 40 minutes. They told me he would either cry all day or sleep and he did neither... he laughed and smiled all day like nothing had happened! We got lots of info from the scope and I am glad we did it. HUGS mama!!!
Sep 27, 2009
wenbomama
Thank you ladies for great support. I really need it. He has gained a few ounces ever since he's on it. The first day he was on it, he did great, he had more than 20 oz that day. The second day, he got so sleepy (I started 1.5 ml once a day before morning nap), he was too sleepy to eat, even sleep feeding didn't go well. So I stopped giving him for a few days since he is so sensitive to it. Then his teething, reflux got worse last week, he didn't want to take his bottle at all, so I started giving him 0.8 mL periactin right before bed again on Friday. He hasn't been eating well, and the gagging, vomitting is back even though he is on both Zantac and prevacid, which is consistent with blood shown up in the stool. I gave him diary free probiotics yesterday made by culturelle, could that be the cause in the blood? other than that, he didn't eat anything new. I looked up on-line about EE, his symptoms match perfectly with EE, I couldn't find anything that he couldn't fit in. Well, at this point, a scope is a must now, my GI is aware of EE, I hope we can have it done as soon as possible. Again, thank you ladies, hugs to you all.
Sep 28, 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
As someone whose son has gone under general anesthesia 7 times, 6 for surgical procedures, I can tell you, it is scary, I am always nervous, but every time it has gone off without a hitch. Your child will be in VERY good hands.

With a scope, the sedation they give is just enough to make them really really drowsy, and it will only take about 15 mins. all together. It's a fast procedure.

A new GI may not be that bad, just get a good feel for them. Being new means they may know the latest on GI reflux, GERD issues. KWIM?

I have heard that with Periatcin, you need to stay on it for a bit allow that tiredness to subside and then you *can* see results. Not all kids see results though. You also have to cycle this med, three weeks on and one week off is what is normally recommended.

I'm not sure about the dairy free probiotic though. If it was the only new thing, I would blame the probiotic by process of elimination though.

Also, Zantac and Prevaciad will not stop blood in the stools. I am just guessing, but I am better you are dealing with more than just reflux. It could be EE or it could be severe food allergies. The scope would be a fantastic idea to give you all some direction.

HUGS it will be OK, try not to worry about the scope and try not to really do any changes in diet, or meds until the scope is done. That way you can get really good reliable results.

Sep 28, 2009
mommato3
Agree with Jeddsmoomy. You have to take the periactin consistently for a couple of days. If you noticed a difference the first time it may have been a fluke. It took about 4 days to see a difference. You have to also work through the tiredness after a couple of days of being on it he wan't so sleepy KWIM? I give my son 1/2 teaspoon twice a day. Before AM nap and before bed. He was 8 months old when we started it. It works like a charm for us but you may need to play around with your dosing and not all kids get the hunger side effect but most do. He does take a much better nap and is a little more out of it at nap time but after the first week of being on it he was much more use to it. He began eating so good that we didn't have to sleep feed anymore and he was slept fed since he was an infant. Let us know what your GI says about the scope!
Sep 29, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hi. My son is now 3 1/2 and has been diagnosed with EE, food allergies, asthma, reflux, & seasonal allergies. He just had his 5th scope yesterday at Children's Hospital in Philadelphia. We found his EE last August, after his 2nd scope. His very 1st scope didn't show it, because he either wasn't eating trigger foods yet or didn'tquite develop it yet. You said your son is on Neocate & simple foods - what are the simple foods? Common EE trigger foods include rice, chicken, beef, egg, soy, dairy, wheat, nuts, and others. Do not try to remove these foods if you are going to have him scoped, because you could end up with a false result on the biopsy. That is because approx. 98% of kids with EE will have clear scopes if they are on Neocate or Elecare only for a couple months. Please do not be afraid to have your son scoped if the GI suspects EE. You need to know what is going on before you can have him properly treated. My son use to choke on little bits of food (before his dx) and feeding problems/pain are not unusual before an EE dx. Keep in mind that all of this could be severe reflux too, but there is only one way to know for sure......El
Sep 29, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I forgot to mention that blood in the stool can often be a sign of food allergy (particularly milk), but also there are some eosinophilic disorders (other than EE) - like eos. colitis - that can cause the bleeding down there. Just be aware. El
Check with your
doctor first!