new granddaughter

Polly · Post by **Polly** » Fri Nov 04, 2011 2:10 am

Love,

Polly

barbaranoela · Post by **barbaranoela** » Sat Nov 05, 2011 5:10 pm

My prayers are with all the family====

Barbara

Martha · Post by **Martha** » Wed Jan 11, 2012 9:15 pm

Please keep remembering Abigail, my grandaughter with Down syndrome. For a while she was nursing better, but then got to the point where she did not nurse enough to keep her mother's milk going. Her mom expresses milk and feeds her with a bottle, but it is a huge struggle to get her to eat even with a bottle. She just doesn't want it. The doctor has them adding formula to the breast milk in order to boost the caloric value of what she does get down, but it isn't much. Most days she takes between 15 and 18 ounces, which isn't enough for a baby going on 5 months. She isn't losing weight, but is barely gaining; mostly her food just keeps her from getting dehydrated.

Her mom spends most of her day pumping milk and trying to feed Abigail, with her dad pulling duty when he is home from work. They have 3 other children, ages 13, 11, and 2. The two oldest are homeschooled, and at this point their mom doesn't have much time or energy to spend on it.

A feeding tube has been mentioned, but the doctor isn't quite ready to do that yet. They have a swallow test scheduled for late January. The GI doctor put Abigail on Nexium in case she has GERD, although there are no symptoms of it. I feel like the doctors may be making stabs in the dark to explain why she isn't eating. She has Down syndrome, but the doctor isn't saying that weak mouth muscles are the cause of this.

It's all very discouraging. My son and his wife are really stressed. Abigail, on the other hand, is quiet and content, except when you try to make her eat!

Anyway, I'd appreciate any prayers and good thoughts you can send our way.

Love,
Martha

Lesley · Post by **Lesley** » Wed Jan 11, 2012 10:09 pm

Martha,

My heart bleeds for you and your family. Nexium is a strong drug. Why give it to her if she doesn't need it? Does you daughter have a good OT with expertise in this area to help her? There is SO much they can do to help. That's what little Abigail needs. Not drugs. IMO, with tears running down my face.

Stanz · Post by **Stanz** » Wed Jan 11, 2012 11:58 pm

Sending you good thoughts, Martha, I hope for the best for all of you.

starfire · Post by **starfire** » Thu Jan 12, 2012 7:34 am

Love, Shirley

Zizzle · Post by **Zizzle** » Thu Jan 12, 2012 9:16 am

I'm so sorry this is happening. Have they considered in intolerance to the breastmilk and/or formula? Galactosemia perhaps? Her pattern sounds alot like my good friend's son. She ended up pumping exclusively, but even then, he never drank more than 3 ounces in one feeding. He was skinny, although his face had round, chubby cheeks - he looked like a chipmunk. It took 9 months to discover he had a glycogen storage disease and could not process the sugars in formula or breastmilk. He was switched to soy formula and began gaining and thriving pretty quickly. Of course the final diagnosis had to be done via liver biopsy, but an ultrasound of the liver showed it was enlarged (from glycogen accumulation, I think). Her son is 4 and doing well now. He has to wake up in the middle of the night for a cornstartch drink to maintian his blood sugar levels, but otherwise, you'd never guess he has such a serious metabolic condition.

Martha · Post by **Martha** » Thu Jan 12, 2012 2:02 pm

Lesley, I'm with you on wishing the doctor hadn't prescribed Nexium!

Zizzle, did your friend's son show any symptoms other than not drinking much to alert them to check intolerance to breast milk?

I don't want to suggest all sorts of scary things to my son and DIL when they are already so stressed, but I sure wouldn't want to keep quiet about something that might be the answer for Abigail.

Zizzle · Post by **Zizzle** » Thu Jan 12, 2012 2:10 pm

From what I recall, he was a pretty happy baby overall. No major crying fits, not much spitting up. He just didn't gain weight and didn't want to drink much. There are various forms of GSD, some milder than others, so you might look at them before you suggest. The symptoms can often be ignored because infants are on a 3-hour eating schedule, and they can use some of the sugars in the milk they are drinking. Once the timing between feedings lengthens, their blood sugar drops and they exhibit more symptoms. Early diagnosis is essential to prevent liver damage. Here's a link:

http://www.agsdus.org/html/whatisglycog ... sease.html

My friend's son has a variant of Type 1. It is totally treatable without drugs, just diet and the corn starch drink in the middle of the night.

Martha · Post by **Martha** » Thu Jan 12, 2012 2:27 pm

Thanks for the link, Zizzle.

Zizzle · Post by **Zizzle** » Thu Jan 12, 2012 2:46 pm

Here's another link with more concise info about symptoms and treatment. Notice each type is very different. Some are very mild. You would think a simple blood test should pick this up, but again, it took 9 months for my friend's kid. For others with milder versions, it can take years. My husband even had a muscle biopsy in his mid 30s after a random case of rhabdomyolysis -- they thought he might have a GSD, but it was negative.

http://www.chp.edu/CHP/glycogen+storage+diseases

MBombardier · Post by **MBombardier** » Thu Jan 12, 2012 10:17 pm

You may recall that last year around this time I posted about a baby in my church that was not eating or gaining weight. Long story short--he couldn't suck correctly, and breast milk was not doing it for him, either. The MD put him on Nutramigen (sp?), and the correct nipple. That worked long enough for them to get him out of the hospital, and then they put him on raw goat's milk. There was an amazing turnaround in the little guy.

I don't think I would be bold enough to do that with one of my children, but then I have never had a critically ill child, thank God.

Martha · Post by **Martha** » Fri Jan 27, 2012 9:11 pm

Lesley asked about Abigail on another thread, and the last couple of days have been eventful, so I'll give you an update.

Abby is now 5 months old. Her interest in feeding has continued to deteriorate. She hasn't lost weight, but her weight gain is very slow and she's losing ground as far as where she is on the growth chart..

My son and daughter in law asked the GI specialist for a feeding tube, because the whole feeding issue has become so stressful and Abigail eats so little. They did a swallow study on Thursday, which showed that she does aspirate some of her milk, even though she showed no visible signs of doing that. After the swallow study was over, the doctor put in a nasogastric tube for feeding. The plan is to mix the breast milk with rice cereal to thicken it for bottle feedings (apparently thicker milk is not as easy to aspirate into your lungs), and let her eat however much she wants. They will then feed her the rest through the feeding tube, aiming at 4 ounces every 4 hours around the clock. The tube feeding milk will not be thickened with cereal.

Today they went for an evaluation at a feeding clinic, and hope to enroll Abigail in one of the programs, probably the outpatient program, to help her learn to eat better.

On the bright side, the doctors and nurses were all pleased with Abigail's overall strength and development. She's doing pretty much what any 5-month-old baby should be doing--trying to sit, trying to scoot on her tummy, etc. She turns over both directions real well, and is very alert. She has great eye contact. Her pediatrician, who treats a lot of children with Down syndrome, prefers to use the regular growth chart rather than the special one for Down syndrome so that we don't all have low expectations.

It's my hope that being able to ensure that Abigail is getting enough nutrition will relieve the pressure that her parents feel. Their family needs to get back to some semblance of normal order.

I really appreciate how supportive you all have been through this. The encouragement and ideas for things to try have been very helpful. Thanks so much.

Love you guys!

Martha

Lesley · Post by **Lesley** » Fri Jan 27, 2012 9:55 pm

Oh Martha, I SO hope she thrives now. Hopefully the extra food will enlarge her stomach capacity and help her feel hunger and need to eat herself.
And if the pressure is taken off her family the stress level will go down. Hopefully this will also affect her. She must react to the stress around her.

Really, really hoping for all of them, and for you!!! :bigbighug:

Stanz · Post by **Stanz** » Fri Jan 27, 2012 10:02 pm

I echo what Lesley said, and am encouraged by Abigails strengths. Life is a challenge for anyone, not accepting limitations because of a diagnosis is huge.