What is wrong with my child?

[WeLoveLilo05]

I am going out of my mind, I have posted on here before talking about DDs issue, but I am beginning to think she has the whole medical field baffled.

DD has always had issues w/ constipation, probably since she was 2 or 3, she will be 6 in January.
In June she was hospitalized for dehydration that was linked to her constipation (so constipated that she refused to eat or drink, at least thats what the DRs @ the hospital told me). But prior to her hospitalization she did poop 2-3 days before, from what they have told me she wasn't emptying herself out entirely. With her not wanting to drink, she didn't eat either. Since June she has lost a considerable amount of weight (3-4lbs). When she was released we had her tested for celiac's disease and cystic fibrosis, which both were negative. About 3 weeks ago she started acting strangely, was very gassy, wanted nothing to do with her cousins, and stopped eating again. We met with our ped who suggested a psychologist, we also met with the GI dr again (this was 2 days before our Disney Vacation). She was burping uncontrollably and not eating. He said go to Disney and see what happens.
Well, she ate in Disney, all 3 meals and a mickey bar everyday and some divvies cookies. However, it was taking her a whole hour to eat a meal AND facial tics developed. Its actually really bad while she is eating.
We get back from Disney and I take her to Ped bc she is coughing really bad. She has bronchitis and is on zithromax. I told ped about tics and he didn't seem too concerned he said to watch it though for the next month. But since Sunday she really hasn't eaten again! But she ate good in Disney...this just doesn't make any sense.
We had a follow up today with GI dr and we told him what was going on. We actually taped DD while eating and ticking in Disney and showed it to him. She threw an awful fit in the office b/c she needed to be weighed. I explained to him that this just isn't her and I just don't know what could be going on. She also lost a few ounces. He also seemed baffled. He said he wants to call my ped and work out a plan, but maybe there's something neurological going on. He talked about seeing a psychologist and/or neurologist to see what was going on, but wants to talk with the ped first. I also explained to him that she used to eat wonderfully, peppers, broccoli, strawberries, raspberries, string beans, carrots, now she won't touch that stuff at all...or anything else for that matter. He also said maybe she is just so malnourished that she is just so grumpy b/c she has no nutrients. He said he could stick the tube down her throat but he said seeing how defiant she is, she'd probably just rip it out. And its true, this was not her, was always so pleasant, I just don't know what happened or whats going on. she was actually pretty miserable in Disney too.
If it is something neurological what could it be?
How could a child actually starve themselves? she cried for McDonalds today and I got it for her and she didn't eat ANY of it.
Everyday I just want to cry b/c I just cannot figure this out. Everything is good at home, she is starting school next week, I couldn't imagine that causing her to behave this way and stop eating. What could this be?

 

[Jennasis]

I am no doctor but my first thought was ALLERGIES. She could have a serious food allergy.

Or possibly a deficiency of some vitamin or mineral.

 

[KatieG73]

Hi I can't offer any answers but just wanted to pass on some . It's really scary when there is something wrong with your child and you don't know how to make it better.
xx

 

[shortbun]

I was thinking encopresis with complications until you described the ticks-which I guess could be a coincidence. Encopresis is a physical/mental illness. I'm sure they've talked to you about that or at least considered it. I'm so sorry she's so sick. I do hope they find the cause soon and can get her started into recovery. How old is she? Celiac Disease could also be involved even though she tested negative. It could also be a combination of a couple of things. Have you tried removing wheat gluten entirely from her diet for 30 days? With her tummy and intestines feeling so bad, it's understandable that her personality would be altered.

 

[Tinijocaro]

My dentist is pushing hard (way too hard) for dd12 to get invisalign. It's actually the dental assistant who is doing the hard sell and to be truthful, it's really a turn-off and makes me NOT want to do it. I'm not sure I can totally trust what they say. She does have a deep bite and her jaw clicks when she opens her mouth. I will be taking her to our orthodontist and to a TMJ specialist to get her checked out.

I'm wondering if any of you or your kids have had Invisalign and how it worked out. The dental assistant was saying Invisalign is far superior to metal braces, shorter time needed to correct teeth, about the same price. Please share your experiences.

 

[holycow]

Hugs to you.


So are you saying she doesn't eat because she doesn't want to poop??? Is it fear? Poor thing.

I hope you are able to find some help for her quickly.


I know you've probably tried everything but when my DS had constipation issues he would try Stomach Comfort (Natures Sunshine) herbal product. Helped him a lot.

 

[WeLoveLilo05]

I am no doctor but my first thought was ALLERGIES. She could have a serious food allergy.

Or possibly a deficiency of some vitamin or mineral.

She does have a peanut allergy, we also keep her away from tree nuts. She could go into an anaphalacitc shock if she consumes/touches them, but is ok w/ airborne.
She was tested for eggs, but that was negative. But could something have developed in the past 2 years? milk?

 

[Magpie]

I have no idea at all - I just want to pass on my sincerest sympathies. What you're going through is terrifying, and I really feel for you and your daughter.

All I can say is, keep talking to doctors - all sorts of different doctors - and keep demanding answers.

Wishing you all strength!

 

[Jennasis]

She does have a peanut allergy, we also keep her away from tree nuts. She could go into an anaphalacitc shock if she consumes/touches them, but is ok w/ airborne.
She was tested for eggs, but that was negative. But could something have developed in the past 2 years? milk?

Lactose intolerance? Allergy to Yellow Dye No. 5? Lots of things. Sugar...

 

[WeLoveLilo05]

Lactose intolerance? Allergy to Yellow Dye No. 5? Lots of things. Sugar...

I am trying to google food allergies and not eating and I'm not really getting anything, do you where I could go to read up on that? If so, thanks in advance.

Thanks everyone for your well wishes.

 

[NotUrsula]

Has she been checked for lead toxicity? Those symptoms are not the most common for lead toxicity, but they are on the list. These days few middle-class children get tested if they don't live in really old homes, but there are ways to be exposed other than eating lead paint. It's a blood test initially, so it should not be too hard to check.

Another possibillty, given that she's been through procedures related to evacuation problems, is that she is just terrified to eat, and the stress generated by the fear is causing the tics. That would be something that a psychologist might be able to uncover.

 

[minniebeth]

Hugs to you and your DD. I hope that you and your health professionals can find out what is going on with her so that she can start feeling better.

 

[Shmily1]

DD has always been constipated but isn't now. When we had a wreck, we started going to the chiropractor. They did her xrays and it showed how full she really was. The chiro adjusted her lower back and we had to hurry home because she had to go!! Now if she gets constipated, she asks for an appointment to the chiro.

Good luck!

 

[fimac]

Hi

Have you had her scoped endoscopy and colonoscopy ? Have you tried elimination diets ? It can be a long and difficult road for answers.

When my son was scoped they found that the reason for his constipation was inflammation of the colon that was causing partial obstruction. The inflammation seems to have been caused by casien. He is also celiac. Which blood tests for celiac did they perform ? Did they do the gene test ? Do you have any gastric diseases in your family ?

I would eliminate gluten, dairy and soy and then work out from there.

Tics can be caused my malnutrition, will she eat a gummy vitamin ?

Good luck

 

[Mkrop]

I thought you were taking her to CHOP, what did the doctors there say?

Maybe you need to find a new ped.

You also have had her on and off Miralax a lot if I reacll your other posts, do you think her system is just so messed up from all of that.

 

[Wishing on a star]

First... I want to send

Well, this might not be what you want to hear, but this IS your child.
And, my first and biggest thought is that she is having some serious psychological (maybe neurological) issues.

You have the fact that she now understands that she could DIE from eating things that she is allergic too.

You have the fact that she has, from day one, shown evidence of physical and psychological issues with withholding, even to the point of needing medical care with constipation, dehydration, incopresis, etc.... (which also can be attributed to anxiety issues)

There there are the tics.

And, truthfully, I think that there might be some other factors that you might not have mentioned yet.

Some people (not necessarily me) could possibly jump to the possibility that the sudden onset of such overwhelming symptoms and behaviors could be attributed to some kind of abuse. (inside or outside of the home)

You need to leave the Ped and Psych behind and get your child to a specialist for a thorough neuro-psych evaluation.
And, of course, allergies are an ongoing concern, and might warrant further eval by a good specialist.

Again,

 

[sparklynails23]

My first thought was "psychological," that she's afraid of peanut contamination or painful pooping, but Ursula is right about the lead.

 

[WeLoveLilo05]

I thought you were taking her to CHOP, what did the doctors there say?

Maybe you need to find a new ped.

You also have had her on and off Miralax a lot if I reacll your other posts, do you think her system is just so messed up from all of that.

I didn't call CHOP yet, I wanted to see what the ped. and GI said. I am still waiting for their call w/ "the plan".

I'll also have to do some research on some of the docs @ CHOP (when on their website each had a list of different areas of specialties), but now my main concern is that it is no longer a GI issue, that it is something more like psychological or neurological.

I don't think she's worried about peanut contamination, she was diagnosed about 3 years ago and she'll usually ask "can I have this?" (well when she was eating anyways). Also we never told her she could die from peanuts, we told her she could get really sick, if she ever felt funny after eating something (itchy throat, itchy face, etc) to tell us. The only thing she MIGHT be afraid of is how her allergy may factor in at school when I am not around? I have told her only eat what I send with you and don't share with anyone.

 

[NotUrsula]

I think I'd do some checking with her teacher about the peanut thing if this is her first year in school. It could be that someone there has inadvertently frightened her about the allergy. It could be that she overheard a teacher talking to someone about it, or another kid could have said something.

Kids can develop some REALLY weird perceptions of the likelihood of catastrophic events at that age. They are learning to reason, but they still make some stunningly wild leaps of logic. I remember that a relative of mine developed a huge aversion to school at about that age -- a child psychologist using art therapy got it out of her that she was afraid that one of her parents would die while she was at school, and in her mind if she didn't go to school then it couldn't happen. She absolutely would not talk about it, but it came out in pictures that she drew.

 

[PrincessKsMom]

My DD had an endoscopy done at age 6, so I'm not sure why the GI is saying it can't be done. They can put her to sleep and take a look around.