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Old 10-08-2010, 05:31 PM - Thread Starter
 
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I posted this on another board, and many re-directed me to here. With Matthew, I'm not sure what I'm dealing with - maybe sensory issues, maybe allergies, but I'm looking for advice for where to start helping him.

Matthew (a twin) born 4/26/2010 has had some version of colic since the very beginning. He cries for hours on end, nothing will calm him down, etc etc etc. When he cries he grabs at his chest so much that he gives himself bloody scratches.

We discussed this with his pedi at his 4 month appointment, and he let us know that after 3 months, it's more of an "immature GI issue". He suggested that we go on very expensive Neutomigen treating it as a cow's milk allergy, even though Matthew probably doesn't have that (because he doesn't have bloody stools) ... he also referred us to EI, because we are concerned with Matthew's lack of cooing and how stiff he is all the time in his arms and legs. (He does make eye contact and smiles, so those are good signs developmentally.) We haven't met with the therapist yet to get him evaluated, but "we're on the list".

He might be happy for a few minutes, but if he hears a noise, or if we drive over a bump, he is screaming like someone poured boiling water over his head. I've never heard anything like it. Other people that I've spoken to about this think he might have sensory issues ...

We were on the expensive formula for a few weeks, but didn't see enough of a difference to justify the cost. We went back on Genlease, but he's worse than ever and I think I'm ready to try the hypoallergenic formula again. (Any difference between Neutramagin or Allimentum?). He is on Prevacid solutabs, but I'm not sure that's helping or making a difference. I'm working to get a pedi GI referral. A separate, but maybe related issue - we've tried rice cereal for about 3 weeks now, and he refuses to swallow it. No matter the consistency of it, it comes right out. He cries through the entire process, which probably doesn't help any ... but I'm not sure if he doesn't like the texture, the taste, or if it's a swallowing issue ... he does fine with his bottle.

He NEEDS to be swaddled at 6 months old to even get to sleep. He needs to be reswaddled 3-6 times a night, because he gets his arms out and pulls out his paci. He NEEDS a paci to sleep, but immidiately spits it out when he falls asleep and then wakes up wanting it back. I'm so tired from getting up every half hour to reswaddle or put the paci back in, I can't even see straight. I've tried skipping the paci, but honestly, the crying goes on and on and on and on ... and letting him cry it out doesn't work. He doesn't stop. He won't resort to sucking his fingers to calm himself down. How do I deal with the paci in-out-in-out all night long?

Most importantly, what do I do to get a happier 6 month old? His twin brother, Jacob, is just about perfect, and it kills me that Matthew is so evidently miserable. It just seems like he's in pain.

My two year old daughter had some similar issues the first few months, but she grew out of them by 3 months of age. The intensity with which he cries, combined with the frequency, and the fact that it's continuing to almost 6 months just has me worried that it's something more chronic. I'm not sure how to handle this, and need something to be done immediately to help him/us.

Please. Help.

Sarah (31), DH-James (31), DD-Grace (6-16-08), DSx2-Matthew & Jacob (4-26-10)
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Old 10-08-2010, 06:29 PM
 
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Hugs to you, Mama. I don't have advice but wanted to let you know you are in my thoughts.

Weary SuperMama superhero.gifto my  amazing neurodiverse 6 y.o. DD hearts.gif and to my on-the-go neurotypical 3 y.o. DS wild.gif

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Old 10-08-2010, 07:27 PM
 
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There is no reason to force the cereal. Its primary value is as an iron supplement for a formula fed babes (whose formula is already supplemented), and it is sometimes helpful with reflux.

As for the getting up often, have you tried co-sleeping with him? At least then you would not have to get up to help him.

Also, you could try using a Moby Wrap (tight) to hold him during the day.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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Old 10-08-2010, 08:44 PM
 
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Some of this sounds very similar to what I went through with my son when he was a baby.
The only difference was that he was breastfed. We used to call him "the grump". I know that's bad, but he really was that grumpy ALL the time. Right from day one he needed to nurse every 1.5 hrs and he would nurse for 40 minutes. Night and day. I was originally committed to not giving him a soother, as I was advised not to, to get the nursing going well. After 3 days I couldn't take it any more, I was so sore from him using me as one. The soother did help, but he still woke up 5-6 times each night. We co-slept as he would not sleep without being held.
He screamed, especially in the evening for 3-4 hours each and every day for 6 months. After that things improved, but he was still really cranky each evening.
My son did turn out to have a dairy allergy, I did not find out until we gave him yogurt for the first time around 8 months and he got hives. Not having bloody stools does not mean your son is not allergic. In retrospect, I do think he was likely in pain. I drank milk throughout nursing him right from day one, and the proteins in my breast milk were probably just enough to make him miserable.
Once I found out, I stopped drinking milk, and the grumpyness improved immediately.
My son would not drink Nutramigen, it tastes disgusting. If Allimentum tastes better, I would try that. I did put him on soy formula until he was 2 after I quit nursing at 15m, because he would not drink the Nutramigen, which the Dr had recommended. It worked for us, and luckily he never did react to soy.

My son has grown up into an awesome, pleasant 9 yr old.

I would follow your instincts. If you feel he is in pain, he probably is, I would insist on a referral to an allergist that has experience with children. Most family dr's don't really know enough about allergies in infants.
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Old 10-08-2010, 10:38 PM
 
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a lot of that sounds like my middle daughter when she was an infant (I have three daughters, and all three had/have reflux to varying degrees. my middle daughter had screaming episodes- not as frequent as your DS, but very severe when they happened. I remember one or two times being sure that I'd have to get to an ER because she seemed to be in so much pain. Around 3 months, we switched to Alimentum. She didn't have bloody stools, but did have bad eczema, which (along with the screaming if that was related to reflux) did seem to point to a milk protein allergy. She got much better on the Alimentum, and at the same time, we added Zantac to her Prevacid (which she was taking 2x a day). One GI we consulted said that zantac provided better relief of night symptoms, which seemed to be the case for us. LIke your DS, our DD liked to be swaddled much longer than we expected- I ended up modifying a miracle blanket with many feet of velcro to make it impossible for her to wiggle out of- maybe you could try that? around 6-7 months, we stopped swaddling, though, because it seemed to be more worthwhile for her to be able to replace her own pacifier. Also, she did (and still does) the same thing as your DS- would scratch at her stomach (and sometimes her upper back/neck area) so hard that she drew blood. I think it was SO itchy from the eczema.

We kept her off ALL dairy until about 14 months, when we started regular milk and yogurt- she was fine- had outgrown the allergy. we weaned her off her meds at about 17 months, with no problems so far.

A tip about Alimentum/Nutramigen-- they do taste awful- my DH (he's a pediatrican) says that often kids over 4-5 months won't switch easily. Sometimes they switch over a week or so by mixing more and more of the Alimentum in with what the baby is used to.

good luck!
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Old 10-09-2010, 12:12 AM
 
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I am so sorry you're going through all this. You may end up ruling out a sensory problem, but it can't hurt to check into it. There are people who can pick up on sensory issues in a 6 month old. If there is an issue, treatment is not invasive or difficult.

We have been getting great support (after local EI missed the sensory issues) from a clinical psychologist and an OT. They work within a particular framework (called DIR, I won't go into it but you can check it out if you want) and have colleagues in Georgia.

You might contact these folks and see if they think they can help you or refer you to someone who can. They may not charge you much for an initial visit (our psychologist did not charge us at all for the first visit, but I don't know how common a practice that is.)

Don't be alarmed by all the autism stuff you'll see when you look into sensory issues. Kids with autism have sensory problems but not all sensory problems are autism.

The other option besides an OT or a clinical psychologist (with experience with infants) would be to see a developmental pediatrician. But I don't know how to find one of those in your area.


Milagros J. Cordero, Ed.D., O.T.R./L, B.C.P., Occupational Therapy, Special Education, DIR® Faculty
2320 Perimeter Park Drive, Atlanta, GA 30341or Floortime Atlanta, Blackstone Centre, 1777 NE Parkway, Atlanta, GA 30329
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Kathleen A. Platzman, Ph.D., Psychology, DIR® Faculty
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Old 10-09-2010, 12:53 AM
 
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That sounds like reflux to me. It probably hurts really bad. My son had it. With reflux it can be apparent (child spits ups ALL the time) or silent where the reflux comes up but the child swallows it back down, or it doesn't even make it all the way up. Silent reflux is actually a worse condition because it passes through the esophagus twice, once on the way up and another on the way down. Can you ask your pediatrician for an rx for tagament or other acid reducer, and try it out for 6 weeks. It takes 6 weeks for the errosion in the esophagus to heal. When we finally got my son on tagament when he was 15 months old the first indication it was helping him was he slept through the night for the first time. He used to wake up all the time because stomach acid was washing up in his throat giving him pain. And then, after 6 weeks on the meds he began to eat for the first time without tears. Anyway, from my own experience, I would say your little guy may be dealing with the same thing.

Kim. My heart is full! Wife to Ray, Mama to 3 boys!  "Big C", our boy with designer genes, "Little C", and "Baby M" 11/2010.
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Old 10-09-2010, 06:45 AM
 
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Your instinct that your baby is in pain is likely right. I had the same instinct about my son (also a twin). He did have severe reflux. It took 18 months to get his pain under control and all the bad that went wtih that because he wasn't dosed properly on the medications. Look at the marci kids site (I can google it for a link if needed) and make sure he's on the proper dose the proper number of days for the Prevacid. My son responded really well (finally) to properly dosed Zegerid.

If it's reflux pain and it doesn't repsond to PPI's you might read up on EOS disease and make sure whomever you see is well versed in that condition. Hopefully this is just a matter of reflux that can be controlled with medication until he matures.

Is he meeting his gross motor milestones?

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Old 10-09-2010, 02:52 PM
 
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Prevacid solutabs have some amount of some part of milk in them. You'll have to research further, but it does list on the ingredients.

Apparently, Alimentum tastes nearly as bad as Nutrimigen, my son didn't tolerate Nutramigen well, but tolerated Alimentum fine. When he was 16 months old he went onto Neocate, which also tastes bad, but he's always taken them all.

Good luck, this sounds like an awful situation. Do you have a Child Development facility nearby? Maybe he needs more than early intervention to get to the root of the problem.

"Listen, are you breathing just a little and calling it a life?"~Mary Oliver

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Old 10-11-2010, 11:11 PM
 
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It sounds like the next step might be reflux meds. Did you also post in the allergy forum? Might be some more insight on there too.

Good luck mama!

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Old 10-12-2010, 12:52 AM
 
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One thing to look at is the actual dose of reflux meds your babe is on. My littler twin struggled with reflux and was on the prevacid solutabs. Doctors do not (typically) prescribe a strong enough dose to adequately treat the reflux, in addition to it being difficult to time with feedings so that it gets absorbed properly.
http://www.marci-kids.com/ is a GREAT resource.

My twin has very very similar traits, though... I call it "stiff-limp." He's wobbly, but sort of locks his joints a lot, if that makes sense? He doesn't smile a lot, or make a ton of eye contact, but he does at times. One night, we even went to the ER after an "episode" that we thought looked like a seizure... but was blamed on REFLUX! (After MRIs and EEGs, etc...) Mine gets eczema, too, but I can't pin down a particular "allergy" - it has improved as he's gotten older. He thrashes at his ears every night until they bleed, though - everything is stained.
The shrieking has gotten better, but some of the other "questions" remain, so maybe the reflux is still there, though we stopped treating it when he stopped smelling like acid all the time. I'll keep peeking here, as I'm still considering contacting EI over my concerns.

Mama to twin boys, Oct-'09 and baby girl, Apri-'12!

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Old 01-21-2011, 08:35 PM
 
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I stumbled across this post and am curious to know how things turned out for you?  What did the Peds GI doc have to say?  I am a mother to 9 mos old twins (boy and girl).  From birth, they both had problems with "gas" pain.  I seemed like they were always crying though by definition is wasn't "colic".  At 6 mos, we started cereal and changed their formula to the 6 month + one (they are mostly breast but also given some bottle).  My son started to have even worse crying episodes, and it seemed like he was in pain constantly.  His bowel movements changed from 3-4 times per day, to 1 every 4 days.  At that time, it would be a firm poop, not rock hard but very firm.  It seemed like he was in tortuous pain when he passed one.  He was also diagnosed with reflux because his spitting up was still continuing, more like vomiting up his feeds after eating.  I saw the pediatrician a few times and was told that a poop at least once a week is normal.  I also read that this was normal in baby books and online, it being stated that babies are using up all of the nutrients so they don't poop as much...or that they poop less because the solid food is resulting in more compacted stools (or something like that).  The only problem was my daughter was having none of these issues, pooping 2-3/day, and her reflux problem was now resolving.  Things were becoming unbearable with the constant screaming and crying, both because of lack of sleep because he would wake up in pain, but also the feeling of watching your child suffer and you don't know why (actually the diagnosis was the reflux and he was on zantac but the doc wouldn't put him on the stronger medication).  Well after 2 months of this - pain, crying, vomiting after eating, having my daughter surpass him in size because she could keep down food, but mostly having my heart broken watching a broken spirited baby, I went into the emergency department when I felt one day that there was something terribly wrong because of his pure misery.  Well they xrayed him, and he was PACKED with poop from "mouth to anus" the doctor said.  His bowels were filled up like balloons with gas too.  The doc working said no wonder this baby couldn't keep any food down and was always crying in pain.  You can't put food into a space where there is no room because it is full of poop!!  Well the next day was torture as we cleared his bowels out with lactulose and milk of magnesia.  He had 3-4 episodes of rock hard poops, then for the next 24hrs, we were changing his outfits because the amount of poop was soaking through the diapers!!!  No word of a lie, once he started passing this liquid stuff, we had the happiest baby I've ever seen.  The guilt I felt was overwhelming that I let myself believe that 1-2 small poops a week was normal and "all the food was being utilized".  Since when is poop food??  It's a waste product!!  Especially since my daughter must have had 100 poops in those 2 mos.  That next day, he ate more than his sister, and slept almost through the night.  And his "reflux" was gone immediately, as in he didn't even spit up after his meal, bottle, breast or anything.  We were told to continue with the lactulose for a few months daily, but he was doing so well with only 5 mls (lots of poopy diapers) we decided to stop and control it by diet. For a week he did amazing, 2 wet/soft poops a day, then no poop for 2 days, and then the tortured painful cry started again.  Well we cleared him out again (less traumatic for him but it still was bad) and we are continuing that small amount of lactulose for many months to come.  

 

The reason I posted this is because the cry and behaviors he had were very distressing.  I was like the cry of autistic/"sensory" kids I have seen, and he was doing it all day and night with very little sleep.  No eye contact during that time, and lots of very strange/abnormal neurological movements, twisting hands, rocking, grabbing at me and clawing/pinching/scratching, pulling at himself.  I was convinced there was something neurologically wrong with him, I even video taped the behavior.  (It's very easy to note something is wrong when you have a normal baby sitting right next to him.)  When he finally was cleared out of poop, ALL of those behaviors I mentioned disappeared THAT DAY and he was the most normal beautiful pleasant baby (and still is!).  And guess what, when we stopped the lactulose for that week I mention above, and he became constipated again, they ALL returned (then disappeared when we cleared him out again). It makes me think that those neurologic/sensory behaviors were pain behaviors.  I wonder if a baby has to suffer like that for many many months if that has future consequences?  If we hadn't gone to the emergency department and cleared him out, I'm convinced he still would be having 1-2 poops a week and suffering daily with his "reflux".  Don't be afraid to go to the emergency department if you think something is wrong or if something doesn't make sense.  You are probably right.  

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Old 01-22-2011, 01:22 PM
 
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Quote:
Originally Posted by SarahMcMama View Post

We discussed this with his pedi at his 4 month appointment, and he let us know that after 3 months, it's more of an "immature GI issue". He suggested that we go on very expensive Neutomigen treating it as a cow's milk allergy, even though Matthew probably doesn't have that (because he doesn't have bloody stools) ... he also referred us to EI, because we are concerned with Matthew's lack of cooing and how stiff he is all the time in his arms and legs. (He does make eye contact and smiles, so those are good signs developmentally.) We haven't met with the therapist yet to get him evaluated, but "we're on the list".

Please. Help.



Alimentum & Nutramigen both have dairy ingredients, for babies very allergic to milk, they will react to both of those as well.  You can be allergic with out bloody stools.  The next step is an amino acid based formula like Neocate or Elecare.  Maybe ask your dr about those.  After we switched ds to Neocate, we saw a HUGE improvement, the same with my 2 younger girls.  The amino acid base could help rest his GI system if allergies or GI conditions are suspected.  Good luck!


Stephanie, mom to 3 big girls ('94, '99 & '02) and to my little guy (12/30/09) intact & CD'ed!
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