Parenting resources for helping my difficult preschooler?

[eternallytired]

I've pretty much given up on the medical community, but I'm holding out one last hope that Dr. Hive will pull through for me.  I'm looking for anything that can help me effectively parent my soon-to-be-four-year-old.  I'll try to give his life summary as briefly as I can in case it's helpful.

• Full term, very fussy at birth but we discovered within days that I was hardly producing milk.  He was allergic to several formulas and ended up on Nutramigen, which we had to thicken with oatmeal or it came right back up.  Doc also prescribed reflux meds.  He was then a super happy, laid-back baby.  Everyone commented on how happy and easy he was.
• Started reaching for solids around 6 mos, so we let him have mushed fruits and veggies, graham crackers.  About a month later, he started sleeping horribly--waking 5-10 times a night arching and writhing.  He went from happy and content to perpetually grumpy and screamy. He continued this pattern for about 6 mos.  Had an endoscopy and an allergy test, both of which came out clean.  Every doc we saw said it was a phase.  I journaled everything I could think to track, and we couldn't find any patterns.  We also tried eliminating gluten and dairy for a couple weeks with absolutely no effect.
• Went to a vitamin store in desperation and bought their recommended items--probiotic and digestive enzymes (plant-based).  He gradually started sleeping better, progressing only waking a few times at night and sleeping on his own between-time again within a month.  He continued to be screamy and grumpy, though, going from playing happily to throwing a fit instantly.

 

Currently:

• I gradually weaned him off his supplements this year, but I questioned that for a while because he woke increasingly from October-end of Dec, at which point he was waking hourly starting around 11.  But we did a sleep study mid-December AND HE SLEPT THROUGH THE NIGHT.  They said he has no issues.  Suddenly this week he's only waking 2-3 times, but he's crankier than ever.
• He has a consistent bedtime (7 pm) and a calming routine (brush teeth, read, pray, lights out).  He's now in his own room because he was waking his brother so much.  He doesn't get out of bed, just wakes up and calls me.  No bad dreams, no consistent issues.  (Sometimes potty, sometimes drink, sometimes blankie on, sometimes a snuggle... Mostly I think he doesn't know why he's up.)  He doesn't nap.  He's awake by 6 am.
• He's always either shrieking with laughter or screaming with anger--he has pretty much no middle ground when it comes to interacting with others.  (He can play calmly on his own, though.  And he seems more even-keel when he's slept well.) 
• He's also become an increasingly picky eater over the past couple years, to the point where he eats peanut butter toast almost exclusively.  I've now got him smelling different foods and choosing one to touch to his tongue at every meal, but that's been an uphill battle.
• He's very sensitive to touch.  He always wails as if desperately injured if someone bumps him (and requires a bandaid, which can then NEVER be removed until it's causing a sore of its own), shoves other kids who try to hug him unexpectedly, is very upset about the sensation of having a BM, and he doesn't like to wash his hands or drink from an open cup.  If he does the latter, he drinks all he wants in one long gulp and demands to have his mouth wiped instantly.  He's even taken to wiping his mouth on his sleeve after each bite of PB toast.
• He's 95th%ile on the growth charts for both height and weight (which shocks me given that I estimated his daily calorie intake to average around 900 calories).  He's developmentally on-target, he can be super sweet and charming, and he's generally well-behaved.  He even has excellent social skills--he CAN play very nicely with others and have great give-and-take, and he tries to negotiate EVERYTHING (future politician? salesman?) and is sometimes obviously aware of how his voice and facial expression have an effect--but often it's like something overrides those skills and he hits and screams instead.  More than anything, he CANNOT handle any change in his world, whether its a new situation, a change in plans, being contradicted/corrected, or even transitioning from one activity to another.  These can all spark long screaming fits.

I have asked the last three pediatricians we've had (we moved and then our new guy retired), and all of them pretty much scratched their heads or said he seemed bright and there was no issue.  The newest one (saw her late December) kept saying how bright he was and how big he was and suggested preschool or daycare, saying her daughter behaved the same and was much better once someone else was caring for her--it was a parenting issue.  She suggested a counselor for my parenting.  DH was livid.  I was willing to try since perhaps a different technique is needed with this personality, but DH is wary of counselors.

 

If any of you have had a kid like this and can give me suggestions of resources you found helpful, I will be eternally grateful.  I'm tired of being shouted at all day.  The other kids are tired of wondering what will set him off (both of them have recently--and separately--voiced a wish that he wasn't in our family, which makes me sad).  I know he's little, but he's far more volatile than either of the other two, and I'm not sure how to help him handle his big emotions.

 

TIA for your input.

[Desert Strawberry]

Have him screened for ASD. I do have one like this. That's what we ended up with.

[PhotoGal]

Also have him checked for sensory issues. Some of what you said sounded like that to me. 

 

Hang in there! It is tough when people don't believe you when you are trying to get help for your child & for your family.

[Rosie_0801]

What they said. In the meantime, read up on retained primitive reflexes and consider seeing a paediatric chiropractor.

[kiwik]

Get an ASD and IQ assessment if you can. The pain - could it be stress or anger? I only ask because my borderline ASD/EG kid makes almost the same sound when he is frustrated as when he is hurt. When he was little I had to explain on many occasions that he wasn't seriously injured it was just his toy had slipped under the couch. He also gets stomach or headaches when he is overtired or needs some quiet time

[Tsuga]

I've pretty much given up on the medical community, but I'm holding out one last hope that Dr. Hive will pull through for me.  I'm looking for anything that can help me effectively parent my soon-to-be-four-year-old.  I'll try to give his life summary as briefly as I can in case it's helpful.

• Full term, very fussy at birth but we discovered within days that I was hardly producing milk.  He was allergic to several formulas and ended up on Nutramigen, which we had to thicken with oatmeal or it came right back up.  Doc also prescribed reflux meds.  He was then a super happy, laid-back baby.  Everyone commented on how happy and easy he was.

Sounds normal except for the allergies.

• Started reaching for solids around 6 mos, so we let him have mushed fruits and veggies, graham crackers.  About a month later, he started sleeping horribly--waking 5-10 times a night arching and writhing.  He went from happy and content to perpetually grumpy and screamy. He continued this pattern for about 6 mos.  Had an endoscopy and an allergy test, both of which came out clean.  Every doc we saw said it was a phase.  I journaled everything I could think to track, and we couldn't find any patterns.  We also tried eliminating gluten and dairy for a couple weeks with absolutely no effect.

I would pursue this, of all things, further. There is not, AFAIK, a 7-month fussy phase, UNLESS he was getting teeth at that time. I would consult a specialist. I have tried with my own, eliminating dairy, wheat did nothing, but I hear the Feingold diet does wonders, for whatever reason. I'm not really into naturopathy or anything like this but this of all the things you say makes me wonder if there is an uncommon allergy there. The people I know who do the Feingold diet swear by it. It's strict but not insanely so, and there are resources.

 

• Went to a vitamin store in desperation and bought their recommended items--probiotic and digestive enzymes (plant-based).  He gradually started sleeping better, progressing only waking a few times at night and sleeping on his own between-time again within a month.  He continued to be screamy and grumpy, though, going from playing happily to throwing a fit instantly.

So is this at seven or eight months though? My second didn't sleep through the night until she was 2.5. She eats anything and never complains/complained of stomach issues (my kids spit up probably 10 times in my entire parenting experience) but she doesn't sleep through the night. So at seven months to EVER sleep through the night sounds fantastic.

 

Currently:

• I gradually weaned him off his supplements this year, but I questioned that for a while because he woke increasingly from October-end of Dec, at which point he was waking hourly starting around 11.  But we did a sleep study mid-December AND HE SLEPT THROUGH THE NIGHT.  They said he has no issues.  Suddenly this week he's only waking 2-3 times, but he's crankier than ever.

Well, I would go back to that sleep study and see what they did and how the heck you can imitate that. Do you have a heater / water heater that makes noise as it turns on at night? Do you have a computer that beeps? Do sirens pass your home? Any lights, noises, that could possibly wake him? A pet that could sleep near him? What was the pillow like? Temperature? I mean if we are looking at first sleep through the night in a year or two, that is a huge deal. I'd ask for 100% of the conditions and do my best to imitate them.

 

• He has a consistent bedtime (7 pm) and a calming routine (brush teeth, read, pray, lights out).  He's now in his own room because he was waking his brother so much.  He doesn't get out of bed, just wakes up and calls me.  No bad dreams, no consistent issues.  (Sometimes potty, sometimes drink, sometimes blankie on, sometimes a snuggle... Mostly I think he doesn't know why he's up.)  He doesn't nap.  He's awake by 6 am.

11 hours sounds great! My daughter did that, as I said, until she was three. I think that is somewhat normal. I don't think "goes to bed at 7, wakes at 7, doesn't wake, from 6 months" is normal. I think it is held up as ideal in parenting books because it's so convenient! But it's not a realistic goal for many kids.

 

• He's always either shrieking with laughter or screaming with anger--he has pretty much no middle ground when it comes to interacting with others.  (He can play calmly on his own, though.  And he seems more even-keel when he's slept well.) 

Is this a literal 13-hour-scream, or is it whenever he's interacting with someone--like, he's just loud? The "loud to get his way" and "excitable" would be normal in my book, or rather, within the range of normal. He might take longer to learn inside voice, but that's okay. On the other hand, if the child is like, waking up, grabbing a toy and screaming, and then screaming as he walks to the breakfast table, screaming as he gets buckled in the car--well that's a problem.

 

• He's also become an increasingly picky eater over the past couple years, to the point where he eats peanut butter toast almost exclusively.  I've now got him smelling different foods and choosing one to touch to his tongue at every meal, but that's been an uphill battle.

This is normal during the 3 - 4 age range for sensitive children, in my experience. Also, for some kids, EVERYTHING is an uphill battle. If you'd have chosen, for example, touching different pieces of cloth, it could have been exactly the same narrative. This is also why I'm opposed to late toilet training... for some kids, if you told them to eat ice cream at the age of three, you'd have the battle of a lifetime. The battle is the goal, not the end of it. We just let this go. "Eat what you want, don't eat what you don't want, be polite or leave the table." End of story. No touching, nothing. But we don't serve refined sugar after meals to people who weren't hungry enough to eat.

• He's very sensitive to touch.  He always wails as if desperately injured if someone bumps him (and requires a bandaid, which can then NEVER be removed until it's causing a sore of its own), shoves other kids who try to hug him unexpectedly, is very upset about the sensation of having a BM, and he doesn't like to wash his hands or drink from an open cup.  If he does the latter, he drinks all he wants in one long gulp and demands to have his mouth wiped instantly.  He's even taken to wiping his mouth on his sleeve after each bite of PB toast.

My older daughter is like that. Her cousin is like that, and an aunt. They aren't ASD, unless the ASD is so incredibly broad as to include literally everyone who has any kind of problem relating to anything. They are sensitive, yes, but they do not have autism or an autism spectrum disorder; to say they do would be very odd. It would strain the limits of the venn diagram that aims to find the common ground between all the people diagnosed. They are just super, super, sensitive.

• He's 95th%ile on the growth charts for both height and weight (which shocks me given that I estimated his daily calorie intake to average around 900 calories).  He's developmentally on-target, he can be super sweet and charming, and he's generally well-behaved.  He even has excellent social skills--he CAN play very nicely with others and have great give-and-take, and he tries to negotiate EVERYTHING (future politician? salesman?) and is sometimes obviously aware of how his voice and facial expression have an effect--but often it's like something overrides those skills and he hits and screams instead.

Again, sounds like my sensitive, intense older daughter. I like to think that, with her great musical skills (is he learning an instrument? Has he got access to a keyboard or piano?) and gift with words and social skills and intuition, she will make a superb ad executive someday.

• More than anything, he CANNOT handle any change in his world, whether its a new situation, a change in plans, being contradicted/corrected, or even transitioning from one activity to another.  These can all spark long screaming fits. 

Part of this is being four. You know how some kids can't ride a bike until they are like, seven? But some can at three? Some kids are about as able to deal with change at four, as other kids are at two, and they are just not there yet. They will get there. But they are not there. We can't all ride a bike at four years old, we can't all write our name forwards at four years old, we can't all deal with change at four years old, we can't all negotiate intelligently at four years old--but most of us can do one of those things.

• The newest one (saw her late December) kept saying how bright he was and how big he was and suggested preschool or daycare, saying her daughter behaved the same and was much better once someone else was caring for her--it was a parenting issue.

 

That has been my experience with the older one. She is GREAT in school. She is GREAT at lessons. I mean she is a dream. I get so many compliments. They do note that she can be overly sensitive and high-strung, but they will also say things like "creative", "loving", "caring", "passionate", "tries so hard", "great leader". As a parent, I need to hear that. I am not ashamed to say that this was the kid that made me give up my dream of homeschooling. I really do think it is better for her. She needs to argue, so better she spreads that among 25 classmates, a teacher, and three specialists (art, music, library), a gymnastics teacher, a German teacher, and a piano teacher, than all on me. All on me is TOO MUCH.

 

It's not that I can't do it. It's that her personality is too big for just a mom or a family. She needs to deal with the whole village. She was born with a million negotiations and love songs in her soul and I can't take them all. So I had to bring her to the whole world.

 

That said when she was four, obviously, I didn't outsource nearly that much and I was in tears daily. It was so hard. So, so, so, so hard. I felt like such a failure. 'Why isn't my kid responding to anything?"

 

​She still doesn't... really. I just threw the last two parenting books away. Screw it. I'm just going to love her and whatever at this point. She's nine. She's decided to be tough with owies (she is NINE, mind you, she cries at a cat scratch) because I pointed out that gymnastics, her beloved sport, is injury-prone and she had to toughen up. So she fights tears and says, "I can walk, I can move, it will be okay." But man does she feel it! My little one is nothing like that. She is tough and hard and though she cries, she gets over it.

 

She suggested a counselor for my parenting.  DH was livid.  I was willing to try since perhaps a different technique is needed with this personality, but DH is wary of counselors.

 

I am wary of counselors. I keep trying but none of them have answers. I would look for a support group of people who have sensitive, passionate kids who share your basic values about what it means to be a good person (i.e. they would not put up with their child hitting either, but also, they wouldn't smack their child if he did hit--you know what I mean, like-minded people).

 

​I have finally come to see that parenting books are really like self-help books: they prey on the desperate by selling lies. I know how frustrating it is to have such a passionate fireball in your home, and wow were 2-3-4-5 tough. So tough. But if I could do it over, I would toss the parenting books, and just do my best and that's it. Because that's all anyone can do.

 

I'm tired of being shouted at all day.  

 

Me too. It does get better. And they do get tougher, and the shouters do have good qualities that the compliant, quiet ones don't have. They can be so single minded and achieve great things.

 

For now, I think that a few hours of outside activities could be great for him, AND for your other kids.

 

And get to that sleep study environment. Make them tell you what they did! You need that information. 

 

Best of luck to you.

 

Edited January 13, 2016 by Tsuga

[eternallytired]

Who would you have screen him for ASD or sensory issues?  The pedis keep telling me he's growing and seems bright, so there's no issue.  I'm not sure where else to go.

 

So far in the past 3 years, I've shelled out big bucks to see a pediatric allergist, a pediatric gastroenterologist, and now this sleep study, and all of them smile patronizingly and tell me there is no problem.  I actually offered to send him home for a week with the (world-renowned, BTW) gastroenterologist, who said, "All kids wake at night--my grandson wakes at least once or twice a night.  It's a phase."  Thank you, sir, for helping with my child who has been waking at least five times if not ten for the past four months.  (That's when he was about 10 mos.)  Yes, it's just like your grandson.  ARGH!

 

The sleep study was NOT the first time in three years that he had STTN.  He gradually improved from 12 mos (when I started the supplements) to waking 1-3 times a night by 2 or so, and at 3 would occasionally STTN.  Then he got worse.  At the sleep study, we brought our own pillow and blankets, our own sound machine and music...  Basically they provided a bed--AND I slept in the room.  I think that was huge.  When he spends the night at my mom's, she sleeps in the room so she doesn't miss him waking, and she says he will occasionally sit up and check if she's really there and then go back to sleep.  So maybe this sleeping business is a phase.

 

I guess I just figured that the toddler years were tough, but he would gradually improve...but instead I feel like he has measurably deteriorated in all areas over the past year.  His screaming, his sensitivity, his eating, his sleeping--they're all worse than last year at this time.  It's disheartening.  I kept telling myself, "Once he's four, things will be easier."  But it looks like they won't.  And I feel like his issues are really putting a strain on the whole family.

[JustEm]

No real advice here because I'm going through much of this with my 5 year old. Aside from the sleep issues and being so picky, although she is picky, she sounds a lot like your son. We are currently on the wait list to get into see the behavioral clinic at our local children's hospital. Once we're in they will do a whole slew of things. They'll evaluate for asd and sensory processing issues, get dd a therapist, most likely occupational therapy, and other things depending on how evaluations go. We've been waiting for an appointment for 2 months!

 

In the meantime, I read the explosive child and have been implementing suggestions from it. That has changed things so we aren't dealing with multiple meltdowns a day. It is more like 4 a week now! She's still about to blow any moment but I can anticipate them better and help her figure that out before it starts.

 

We also attempted a whole30 that ended halfway through because of a death in the family. During it is when the multiple meltdowns a day stopped. When we went off the whole30 they came back less frequently but we are still mostly eating compliant food so I suspect some food sensitivity.

[SLT]

I second a possible ASD screening, but all of his early "problems" can be 100% normal in kids. My kids didn't even begin to sleep through the night (EVER!) until well after 2. Both of mine woke up every 1.5-2 hours until about 13-14 months. It wasn't fun, but I just saw it as a relatively normal sleep/wake pattern for some children. And if he was needing nutramigen, then he was dairy/soy allergic- Any graham crackers you would have fed him (as well as other foods) have soy and often dairy in them... and this is how my dairy/soy allergic baby responded. 

 

Dairy/soy allergic babies do NOT react positive to a skin allergy test, as it is not a "true" allergy. My allergist explained it as more of a contact dermatitis reaction in the gut. If I slipped up and had dairy/soy or fed her anything with those components, she had the same symptoms as your little one until she outgrew the allergy.

[Incognito]

Some kids are really hard.  Try to find ways to get yourself time to re-energize, so that you can handle the conflict more easily.  That might mean going out once a week with friends, starting up a new hobby, etc.  For your other kids, try to find something to do with them that is special after your exhausting child is in bed (or when that child is otherwise occupied).  

 

I don't know if your child has an underlying syndrome or issue that is making life more difficult for them to live.  It's very possible.  And you've been proactive about trying to find out what that might be, and have come up empty.  It's okay to step back for a while and realize that label or not, your child is a handful and you need to find ways to cope that will function longer term.

 

For what it is worth, if your child is "sleeping through the night" when someone is in the room, and isn't when someone isn't, the issue isn't sleep, but wanting to be with someone in the night.  Why they feel anxious without someone may be an underlying issue, but the thing is, you don't know why, and it doesn't really matter if you can find a way to help them be okay with waking and going back to sleep on their own, or to share a room.  If you want an independent sleeper, have you told your child not to wake you?  Have you put them back to bed without interaction?  Alternately, if you don't mind being in the same room have you set up a small bed for them in the corner of your room?

 

I can identify with a lot of your feelings - I've had to come to the point of celebrating the things we figure out that work and having a lot more grace and patience with the things that don't work.

[MedicMom]

Well...I have a child like this and it turned out to be ASD and sensory issues. Tell the pediatrician you want a referral for a screening and don't let them talk you out of it. Your local school district's special services department may be able to help get an evaluation as well.

[momto3innc]

I have a good friend with a daughter with similar issues (minus the pickiness). She has been diagnosed with extreme sensory processing issues and is greatly helped with different therapies at OT. I would not rule out ASD testing either. Basically I would do a full work up to start figuring out what's going on and how to help him (and everyone else in the family).

 

Also agree on The Explosive Child and I would also do The Out of Sync Child. And if I were desperate I would also remove ALL dairy and wheat and food dyes for quite a while and see what happens. So sorry! I know it's so hard.

[Tsuga]

Who would you have screen him for ASD or sensory issues?  The pedis keep telling me he's growing and seems bright, so there's no issue.  I'm not sure where else to go.

 

Honestly, reading reviews of counselors, if you want a positive, go to someone who frequently diagnoses positive, if you want a negative, go to someone who frequently gives a negative. There are specialists out there. 

 

So far in the past 3 years, I've shelled out big bucks to see a pediatric allergist, a pediatric gastroenterologist, and now this sleep study, and all of them smile patronizingly and tell me there is no problem.  I actually offered to send him home for a week with the (world-renowned, BTW) gastroenterologist, who said, "All kids wake at night--my grandson wakes at least once or twice a night.  It's a phase."  Thank you, sir, for helping with my child who has been waking at least five times if not ten for the past four months.  (That's when he was about 10 mos.)  Yes, it's just like your grandson.  ARGH!

 

But... that IS common. That is common around 10 months. There are two types of families: the ones in which the babies STTN and the parents say "it's because we were awesome and our kid is awesome" and those in which the parents spend the entire time struggling to find out how to make the kid STTN whilst feeling terrible. I have never met a family, EVER, that implemented a method a la No-Cry Sleep Solution or Ferber or anything, that worked. They either had a sleeper or not. What you are describing is a pain in the butt but that doesn't mean it's not normal.

 

The sleep study was NOT the first time in three years that he had STTN.  He gradually improved from 12 mos (when I started the supplements) to waking 1-3 times a night by 2 or so, and at 3 would occasionally STTN.  Then he got worse. 

 

That is common. Nobody makes any money by telling you it's common, which is why you are looking for someone who can fix it. I did that... nobody fixed it. The ONLY thing anyone could promise was a label so I could feel like less of a failure, but i didn't think that would make me feel better. She started waking just one time per night around 3.5.

 

http://www.bbc.com/news/magazine-16964783

 

At the sleep study, we brought our own pillow and blankets, our own sound machine and music...  Basically they provided a bed--AND I slept in the room.  I think that was huge.  When he spends the night at my mom's, she sleeps in the room so she doesn't miss him waking, and she says he will occasionally sit up and check if she's really there and then go back to sleep.  So maybe this sleeping business is a phase.

 

So it sounds like he's probably waking every night, which is normal, totally normal, even for some adults, but when you're not there, he calls out and wakes you, but when you are there, he sees you and goes to sleep?

 

I guess I just figured that the toddler years were tough, but he would gradually improve...but instead I feel like he has measurably deteriorated in all areas over the past year.  His screaming, his sensitivity, his eating, his sleeping--they're all worse than last year at this time.  It's disheartening.  I kept telling myself, "Once he's four, things will be easier."  But it looks like they won't.  And I feel like his issues are really putting a strain on the whole family.

 

No matter what route you pursue, you need a support group. Growth is not linear. Or maybe it is for some children. I wouldn't know. My bio kids are not linear. They do not respond to the following methods:

 

Parent Effectiveness Training

Attachment Parenting

How to Talk so Kids Will Listen

Happiest Toddler on the Block

Supernanny (though, if you want a hell of a ride, just try those methods on a defiant child... sometimes she forgets to set an upper limit so you can play a drinking game in which 'every time super nanny's methods would lead to child abuse because you cannot actually physically implement this with my child without restraints' you take a shot of whisky. Highly recommended for the parent who wants to get plastered, of the intense child).

 

I thought I could use these methods consistently and everything would progress like, you know, the rest of my life.

 

But it doesn't.

 

 

 

Dairy/soy allergic babies do NOT react positive to a skin allergy test, as it is not a "true" allergy. My allergist explained it as more of a contact dermatitis reaction in the gut.

 

I think it's more accurate to say that there are types of dairy allergies and soy allergies that do not react positive to a skin test. I know one dairy-allergic kid and boy does he react on the skin.

 

Lactose intolerance also causes massive problems for some people and that won't show up on an allergy test either.

[Tsuga]

We also attempted a whole30 that ended halfway through because of a death in the family. During it is when the multiple meltdowns a day stopped. When we went off the whole30 they came back less frequently but we are still mostly eating compliant food so I suspect some food sensitivity.

 

On another note, I think there's a lot of overlap between Whole30 restrictions and Feingold restrictions, so it's worth looking at--I mean, Whole30 or Feingold, for OP, not Feingold for you, hjffkj.

[monstermama]

Have you taken him to a developmental pediatrician?  They're more familiar with issues like SPD and autism than your general pediatrician.  They tend to have long waiting lists, though I've had luck with asking to be put on the cancellation list.

 

Your local school district may also be able to evaluate him, but I'm not sure how helpful that would be if you'd prefer not to put him in preschool.  Here, at least, once they turn 3, they expect all the therapies to be done as part of a half-day preschool at the local elementary school.  But the evaluation (and preschool), at least, is free.

Edited January 13, 2016 by monstermama

[Guest]

It could be normal or it could b a problem, hard to tell. I have normal kids (some issues but mostly related to precociousness) who have had some of those symptoms. But it could absolutely be sensory - he sounds like he has a sensitive nervous system and that can be correlated with other global issues.

 

Tough call. It sounds like you've seen most of the specialists I'd have recommended.

[SLT]

I think it's more accurate to say that there are types of dairy allergies and soy allergies that do not react positive to a skin test. I know one dairy-allergic kid and boy does he react on the skin.

 

Lactose intolerance also causes massive problems for some people and that won't show up on an allergy test either.

Sorry. I wasn't specific enough. The babies who are dairy AND soy allergic are allergic to the proteins and they cause a reaction in the gut. The type of allergy to dairy you're referring to that shows up on a serum blood test or a skin prick test is a cell-mediated IgE (less common type of allergy to dairy) versus the non-cell mediated IgG response that is insanely common in infants. The latter is common to grow out of by 8-10 months, the IgE responses aren't usually outgrown.

 

If a baby has a dairy AND soy allergy (as the OPs son was, since she stated he needed nutramigen), it's not likely that it is an IgE response. They are IgG and those don't show up on skin tests. My response was to let her know that not all allergies show up on a skin prick test and apparently I failed at that. :)

Edited January 14, 2016 by SLT

[SLT]

http://www.greatplainslaboratory.com/home/eng/e-newsletter/igg_vs_ige.pdf

Here is a great link comparing the two. The problem with IgG reactions is that the symptoms last for weeks.

You expose your allergic baby to milk (or a random milk or soy protein that you didn't even know was On the ingredient list) and they react for weeks before it leaves their system. While IgE reactions can be more severe in the intensity, once they're treated, they resolve quickly. Typical milk/soy protein allergic babies act exactly like OP described her son. They are freaking miserable, poor babes! My youngest was allergic to both and finally outgrew them at 9 months. It was a hell-ish 9 months for me breastfeeding and watching both of our diets.