I was reading the comments today and I was thinking about what Patty had said. I'm not sure what that is called or how to say it, but I'm going to check into it. We have not resolved the tummy issues by far. In fact they have gotten much worse. Everyday that we wake up the babies are covered in poop. We have to carry them to the bath and wash them off. Then we have to open their window to get the smell out of their room, then we have to strip their cribs everyday. It really gets very time consuming. Then we do this about 2 more times throughout the day. We have just recently started them on the gluten free diet, but it does not seem to help out a whole lot. We are at a loss. We do not have the best pediatrician either. He really has no clue what to do. I'm looking to find a doctor that knows a little more about downs children anyways.
I was thinking yesterday about how it will be when they are all older. Are they still going to try to get into everything when they run around on their own?? Do they always scream for no reason?? Just wanting to be prepared for these things.
Eli makes us laugh everyday with the new things he likes to do. When a woman holds him he always loves to pull down her shirt and look inside it. You can see the ladies freaking out trying to fight him for thier shirt as me and Tony sit and laugh!! Then Leeska is just learning knew things everyday. She has learned to say so many new words, and she has really learned how to listen to what we say. We are amazed at how smart she is. Its so hard to think that it has only been 6 months almost 7 that we have had them home.
We have been looking at the R.R. again looking at the older children and then some of the kids with HIV. We don't know if its OK to adopt a child with HIV if you have a lot of kids at home. We are afraid that our kids get sick so often that that would make them more sick even faster. Some people say no, but I'm not sure. They have so many kids that need to be adopted. I do not know how people pick one. We had it easy because a friend showed us Leeska so we went into this knowing we would go for her.
Well, Patty if you read this I tried to respond but it would not let me. If you know more about this disease please let me know. I'm interested to see if this could be what they have. Thanks
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Hi Leah,
ReplyDeleteThis is Patty. I would be happy to help you in any way I can. The parasite my son had is called Giardia. The "G" makes the soft "g" sound, the first "i" makes an e sound, then the rest sounds as it looks. This parasite causes really bad "runs" and it is hard for the kids to gain weight because the parasite is getting all the nutrition. If your doctor is agreeable, ask him to test for giardia, celiac and h-pilori. My son had both giardia and h-pilori. The h-pilori is a bacteria vs. a parasite. All of these are very treatable. Please understand, I'm not trying to diagnose your children, I'm just sharing what our son had and it took us several months to figure it out and heal it. If you would like to contact me directly here is my e-mail. pattyl422@gmail.com The letter after y is a lowercase L. I hope this has been helpful to you. We are currently adopting Jenny through RR.
I would hope this would have been done already. My friend just brought her daughter home from Russia 3 months ago and one of the very first things the doctor ordered was a thoroough testing of her stool for giardia. This is was I thought of to based on symptoms, but I thought it was an automatic with international adoption? I hope you find something out soon. By the way the treatment was easy and quick for my frineds dd.
ReplyDeleteLeah, I noticed Patty's comments and totally agree- it also took months to sort things out. We had issues with giardia also (parasite from bad water)...also one came home with that and crypto-something (bacteria from bad food). Nasty smelling, explosive- it was pretty awful. I was familiar with it because I grow up near the CO mtns where rangers were always telling people not to drink the water in streams because of it. We had to have 2 rounds of the meds for giardia- it can be a hard thing to get rid of. It's known for being nasty tasting. We get stool samples from all our kids that come home right away and don't let them bathe together until after it's clear as one dr. told us it can be transfered in bath water which seems logical to us given what kids do in bath water. During the time we were trying to get rid of giardia, we did learn there is some research to suggest that giardia parasite thrive on diary..cutting dairy to remove it's favorite food helps kill it off in addition to the meds. Also, while one has giardia, one can show signs of being intolerant of milk (painful smomach aches, more runs, moody, etc, etc as symptoms) ...once treated the person can be fine with dairy again. Not sure if all of this is true, but we have reason to believe, after our experience, it's well worth considering. If I can offer anything else, feel free to email @ gjmlogue @ yahoo . com Blessings, Jennifer (waiting on 2 little boys from RR)
ReplyDeleteYou probably need to get the babies seen in a Down Syndrom Clinic. I think there are actually 2 in the San Antonio area.
ReplyDeleteHere is the info I found SA:
1). Christus Santa Rosa Children's Clinic
Children's Hospital
519 West Houston Street
San Antonio, TX 78207
E-mail: Robert J. Clayton, M.D. (210) 704-2865
Fax: (210) 704-2813
The Santa Rosa Children's Clinics are interdisciplinary clinics dedicated to the care of people with Down syndrome and other disabilities. Services have been organized to simultaneously serve a diverse population in regard to ethnicity, culture, language, income, and urban and rural residence. Five clinics are held each week:
1). new patient/behavioral clinic
2). behavioral/genetics clinic
3). metabolic clinic
4). specialty evaluations clinic
5). spina bifida clinic
The staff includes a pediatrician, doctor of physical and rehabilitation medicine, pediatrician-geneticist, metabolic geneticist, pediatric urologist, pediatric orthopedic surgeon, two pediatric neurosurgeons, three nurse clinic coordinators and a social worker. Physical therapy, occupational therapy and dietary services are also offered.
This next one I found but there is not a lot of information regarding the clinic like the above one does.
2). University Family Health Center — Southeast
3819 S. Gevers
San Antonio, TX 78223
(210) 531-5500
Contact: Sue Doty, M.D., Ph.D.
I would call them both and see if you can get an appointment for the babies. Clinics like this will either act as the babies primary care docs or refer you to one that will be able to treat them correctly.
I know the Clinics here in Houston are a good source of information for the parents of kids with DS.
Good luck and let us know what you find out.
Also here is a link so you can find out more on Giardia
http://www.mayoclinic.com/health/giardia-infection/DS00739
Love,
Sheila
Hi,
ReplyDeleteI've been reading your blog for a bit now. We are a large family as well. Not often that you can find a large family that wants more kids ;)
Just wanted to add that if you have dogs giardia CAN be passed back and forth between humans and dogs. Normally puppies are the ones who have giardia but if you have dogs I would have them tested.
Here is a link from the CDC on giardia.
http://www.cdc.gov/ncidod/dpd/parasites/giardiasis/factsht_giardia.htm#symptoms