My Baby Seems To Be Wasting Away!

[mistybearclaw]

Goosh I just wrote a page and lost it.

Its about my one year old baby girl Christina. Since she was born she has cried and been irritable everyday. I was never able to soothe her. At six months when I introduced solids she stopped pooping. She was hospitolized with suspected Hirschsprungs disease, negative, but still unable to poop. Now she is on a daily laxative, which is terrible. She has brittle, thin hair, and is anemic. She is thin, and was failure to thrive for five months! She got two teeth at six months, but no more. Her poop is loose and sticky even though she is constipated and can't seem to get it out. She saw a GI doc monday who said he had thought she had celiac at six months when she was in the hospitol, but the blood work wasn't done as ordered. So she had a blood test on monday, still waiting the results. She had a ttg done. She has had developmental delays and at a year is not talking yet. Crawled at nine months. and doesn't seem to have the muscle's in her legs to start walking.

Please help!

Misty, Christina's mommy.

[2kids4me]

Wait for the results from celaic. Has this baby been worked up for inborn errors of metabolism? Endocrine problems like thyroid? Genetic studies? If not and the celiac panel is negative then ask your pediatrician what needs to be done to find out why this baby is a failure to thrive.

Best of luck, it must be such a worry every day

[Ursa Major]

Misty, if Christina's bloodwork comes back negative for celiac disease (it is very unreliable for children that small), I would suggest testing with Enterolab Open Original Shared Link, or if you can't afford that, just putting her on the gluten-free and dairy free diet to see if she will improve. All the symptoms you describe could very well be celiac disease, and failure to thrive is very common.

I hope you'll get the answers you need very soon, I can't imagine how you must feel with such a sick little one.

[azmom3]

Goosh I just wrote a page and lost it.

Its about my one year old baby girl Christina. Since she was born she has cried and been irritable everyday. I was never able to soothe her. At six months when I introduced solids she stopped pooping. She was hospitolized with suspected Hirschsprungs disease, negative, but still unable to poop. Now she is on a daily laxative, which is terrible. She has brittle, thin hair, and is anemic. She is thin, and was failure to thrive for five months! She got two teeth at six months, but no more. Her poop is loose and sticky even though she is constipated and can't seem to get it out. She saw a GI doc monday who said he had thought she had celiac at six months when she was in the hospitol, but the blood work wasn't done as ordered. So she had a blood test on monday, still waiting the results. She had a ttg done. She has had developmental delays and at a year is not talking yet. Crawled at nine months. and doesn't seem to have the muscle's in her legs to start walking.

Please help!

Misty, Christina's mommy.

Hi Misty,

Any mom sympathizes with someone going through this. I hope you get answers soon. Have the doctors expressed concern about the developmental delays or are you just worried based on what you're seeing? None of my 3 children EVER crawled, and they all walked at very different ages (13 months, 10 months, and my 3rd, not until 17 1/2 months). I was very worked up over the last one not walking (or being close to walking) around the year mark, despite the fact that my doctor said they're not worried until the 18 month mark. He would not even "cruise" holding on to furniture until 16 months. Many moms brag about their kids walking before their first birthday, but you don't hear a mom saying "well, my child walked at 18 months." Just because you don't hear this often doesn't' mean it doesn't happen. Although my son walked on the late end of things, he was still considered in the range of when kids walk. Hopefully, that gives you a little peace of mind and hopefully, that's what's going on with your little girl. It sounds like you are doing all the right things and having all the testing done. I'm assuming they've ruled out other things that exhibit some of the same symptoms...cystic fibrosis or others?? Good luck to you and Christina and I'll keep you both in my thoughts and prayers.

[tiredofdoctors]

Goosh I just wrote a page and lost it.

. Since she was born she has cried and been irritable everyday. I was never able to soothe her. At six months when I introduced solids she stopped pooping.

Her poop is loose and sticky even though she is constipated and can't seem to get it out.

She has had developmental delays and at a year is not talking yet. Crawled at nine months. and doesn't seem to have the muscle's in her legs to start walking.

Please help!

Misty, Christina's mommy.

'

Some of your statements seem to be very "telling". I'm a physical therapist, and I have treated a lot of children who seem to be like your daughter. First, your inability to soothe her has NOTHING to do with you, and EVERYTHING to do with her nervous system. My guess would be that your daughter has sensory integration difficulties . . . particularly with developmental delays, etc. When a child has sensory integration (difficulty . . . ), their brains cannot make sense of the stimulus around them. They sometimes startle easily, they are irritable, and even touch makes them very agitated and cranky. These are the same kids that, as they get older, don't want their feet to touch the grass, don't want tags on their clothes, want only certain fabrics of clothing . . . because anything that is the least bit "rough" -- a tag that maybe hits a little, is magnified exponentially in their nervous system. A good book to read about this is "The Out of Sync Child".

The second thing is the pooping issue. The kids I treated we called the "non-pooper's club" . What usually

happened was that the child actually had a sacroiliac dysfunction which caused "outlet dysfunction constipation". In adults, we would call it anismus -- painful bowel movements, etc. If your daughter tries to get into different positions .. . usually these kids kind of "squirm" and try to get into a perfect position to have a BM. What they are doing is trying to lessen the strain that is on the S2 nerve root -- the one that "controls" the anal sphincter. When I had these kds in my clinic, I would first use interferential electrical stimulation, combined with heat on their back, at their low back & butt cheeks. It feels like a soft massage . . . one little boy asked, "Just five more minutes . . . would that be Okay??" He was three!! Because that type of stimulation relaxes the muscles, the kids would start passing gas like crazy! The moms would apologize like crazy, but I assured them that it was what we wanted . . . these were kids that usually DIDN'T pass gas. A lot of times, the ones that were verbal would say mid-treatment -- I have to POOPY -- NOW!!!!!!!!!!!!! And they would go, without the pain and the squirming to get into a biomechanically optimal position.

The third thing is that your daughter may be eligible for Project First Steps. She has already been diagnosed earlier with failure to thrive and you said that she has had developmental delays. Not talking at age one is NO BIG DEAL. My daughter, who is now an opera singer and majoring in Speech Language Pathology didn't speak until 20 months . . . and hasn't shut up since. Literally, she pointed to what she wanted, uttered an unenthusiastic "Unh" . . . and my son would say . . .Mommy she wants a cracker. I told him that SHE needed to say it, but his answer was "Why . . . I know what she wants." Good point, but still. My son, also, was a late talker. I was starting to get VERY concerned . . . but he was FINE. In fact, both are fairly intelligent, both are articulate . . . so as far as the verbal skills go, I wouldn't worry. If she cannot COMMUNICATE, on the other hand -- if she can't get a message across to you that she wants something . . . then I would have a little more concern.

You may want to ask your pediatrician for a referral to Project First Steps. Until the age of 3, one hour of therapies (maybe more if she needs different types of therapy) are free. It is a very valuable resource which tends to be (in my opinion) underused.

I realize that my response is biased with regard to therapeutic intervention, but I hope that I have maybe ben of some help. . . . .

Good luck to you. Worrying about your child is all-consuming. I've been there. You have my good thoughts coming your way, and if you don't mind, some prayers as well . . . .

Hugs to you,

Lynne

[alliesmom]

Hi. My name is Jennifer. I have a 12 month old daughter who tested positive for gluten sensitivity through Enterolab. I received the test results today. I had the $99 gluten sensitivity stool test done for both her and myself. My sister was diagnosed with Celiac about a year ago and she is 23 years old. My daughter's test came back positive with an elevated level of 21 units. My test came back negative with a level of 8 units. I am a little puzzled by that. Any ideas? Anyway, I have fought my daughter's pediatrician for several months. To give you a little history...she was born at 35 weeks and was in the NICU for 10 days. She was 5 lbs. 5 oz. when she was born. I really wanted to breastfeed and we tried for a while, but she was so little and it required a lot of energy on her part. I had to supplement formula everyother feeding, milk wasn't coming in good, and well, we retired breastfeeding. She ended up on Similac Advance and was very fussy right after she would have her bottle. So, we put her on Similac Lactose-Free. It seemed to help. However, she started suffering from consitipation. Her doctor said to try Karo Syrup, Apple Juice, and all other kinds of remedies. None of them worked. Finally, they put her on Miralax to loosen her stools. My daughter has suffered for several months with very painful bowel movements. She screams in pain and it absolutley kills me and breaks my heart. However, her stool would be loose. Doesn't make sense to me! Of course her doctor says this is completely normal and I should not be worried. I talked to her doctor about Celiac and even had my sister's med. records faxed to them. She acted like I was crazy, and said she didn't think a test was necessary because my daughter is thriving. I've just had that mother's intuition that something wasn't right. I insisted on something being done, and she settled for a barium enema. The test results came back normal. My daughter has not had any formula in a week, and has just been on solid foods. Her last pooping episode happened 4 days ago (at her 1st bday party in front of all her guests). So, she has been pooping about 2-3 times a day (loose stools) without any pain. Thank goodness! However, her stools are very stinky, grainy and sand-like appearance, and have lots of chunks and pieces of stuff. I have even taken a couple of her diapers to her doctor out of concern, and of course they say it is completely normal. I don't know what to think. Especially since I got her test results back stating she was gluten sensitive and she needed to go on a strict and permenant gluten-free diet. I know what I'd really like to say to her doctor. But, I'll be nice. We've scheduled an appt. with a GI at the AR Children's Hospital in Sept. Should I start her immediately on a gluten free diet, or should I wait 6 weeks until we go to the doctor? I'd appreciate any comments or suggestions. I am new to all of this. Thanks!

[celiacgirls]

You have gotten some very good advice already. I just wanted to second the part about either trying the gluten free diet or testing with Enterolab if the blood tests are negative. My daughter's only symptom as a baby was "different", more frequent diapers when she ate wheat. My grandmother had celiac so she was tested by the blood tests and they were negative. As she got older, she was always complaining about her tummy hurting and she was tested several times over the years. The blood tests were always negative. She always said she felt better on the gluten free diet but we didn't always keep it up because 1)we didn't have a true diagnosis and 2)it wasn't clear she was much better to me, probably because we weren't as strict as we needed to be. Anyway, she is now 8 and I discovered Enterolab. Her test there was positive and she has been strictly gluten free since then.

If the bloodwork is negative, the doctor may or may not be supportive of the diet trial. (probably won't be)But there are many people on this board with negative bloodwork who do better on the gluten free diet. My daughter's GI doctor, even now, doesn't think she needs to be gluten-free. But my daughter thinks she does.

[Nic]

Alliesmom,

Hi, my son Jacob is now 5 years old but the BM problems you described is Jacob's problems as well. I could never figure out why he couldn't get the soft poop out. And every doctor I saw said he is constipated and I would say, "but do you understand, he can't even get soft poop out?". He was also given a barium enima looking for Hirschsprungs Disease. He also tested negative. He was finally diagnosed Celiac only after going through a Sigmoidoscope, Colonoscopy, and the Endoscopy with biopsy. He is currently on Miralax, Yummi Bears Fiber, and Acidophilus (a probiotic). Up until this summer, he was only on the Miralax and fiber and his BM's were loose and heavy and would alternate with the still dreaded constipation. I added the Acidophilus and took away lactose this summer in a last effort to get him pooping normally before Kindergarten starts and so far he has been pooping everyday and it has been more formed. I also cut back the dosage on the Miralax.

I spoke with the GI yesterday and explained that when I give the full dose of Miralax his stools are too loose. But If I cut back, he poops normal for a while but then seems to begin to back up, struggling a bit. He explained that I should not be set on just 1 right dose. He said you dose based on the need. So if he is struggling, give a full dose, if he is not struggling, cut it back. I thought maybe some of this might help you.

I too had to watch my child scream in pain with each BM. He would fall to the floor, he would crawl to the bathroom on his hands and knees. As he went he would be shaking and sweating. He walked away from each BM as if he had just run a marathon. And then while in all this pain, the docs would say give him an enima. It was horrific. I can so relate to you.

Nicole

[TCA]

My son didn't walk til 16 mos, had speech delays, was FTT, brittle hair, tooth enamel defects (just had dental surgery for 7 crowns and 3 fillings), constant D and gas. He had classic symptoms, but he had 3 negative biopsies and inconclusive blood work by the time he was 3. I finally just put him on the diet for a 3 month trial, and we're never going back. that was in Jan. In Jan. he was wearing 24 mos, he's now in 3T and some 4T. The D and gas stopped. His hair is thick, his speech is much better. I don't blame you for waiting for the GI dr., but for us it was to no avail. If the tests are negative, I encourage you to try the diet. It took a few days to see some improvements in my son and 3 weeks for the D to stop. I hope your child feels better soon!

[Ursa Major]

Lynne, you may well be right with your assessment, that Christina has all the problems you described, and that the suggested therapy would be helpful. But, and this is a big but, you would be treating symptoms. What causes these symptoms? It could well be celiac disease. That goes for the neurological as well as the physical symptoms, as celiac disease can (and usually will) cause both.

It's like my awful trigger points all over. I see a massage therapist to get rid of them, as they are very painful. But they didn't get into my muscles by themselves, but were caused by fibromyalgia and myofascial pain syndrome, which in turn were caused by food intolerances (gluten, lectins and salicylates). The diet together with massage and twice weekly chiropractic adjustments is helping me cope.

So, it is possible your therapy would be a great idea, in combination with the gluten-free diet.